I have the same advanced directive. One of the most important Ethical principles is autonomy. Mr Medalie reflects a well thought out plan. We should not impose our discomfort with this plan and the stated wish to not introduce assisted feeding. The public and Catholic institutions are better served by recognizing the following directive, from the United States Conference of Catholic Bishops (2009), “A person may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.” This principle is an important consideration in my own decision making. Utilizing assisted feeding in advanced dementia is a burden on my family: either they provide daily feeding along with other care, or they pay a significant amount for others to provide that care, at a time when I will have limited benefit from that intervention. As long as I have the capacity to indicate what I want or don't want, including in the setting of physical disabilities, my wishes can be honored. Once I no longer have that capacity I do not value that existence, and more importantly I do not want that burden for my family. Do not deny me that right.
4
What is the meaning of 'freedom' if one can not decide on how one is to live...or how to die?
7
I have a friend whose great aunt spent the last 15 years of her life in a nursing home. The last 7 of those years were spent curled up in a fetal position in a bed. It's obvious that she had to be cared for in every way including feeding, bathing, dressing, toileting, taking medication, etc.. Can anyone who thinks we should apply every extraordinary measure to help prolong everyone's life please explain to me in language that a five year old could understand how that was a life?
As a another friend of mine asked, "Are you prolonging life or are you prolonging death?"
As a another friend of mine asked, "Are you prolonging life or are you prolonging death?"
12
Having gone through this exact process with both parents - and having years go by when they both had stopped being themselves - and they were both wonderful people - it would have been a gift to both of my parents, as well as their three children and all who loved them - if they had simply been allowed to take their leave when they were ready. They could not eat or drink on their own - they both had made it clear many years before that they would not want to live the way they were - so I too would ask that Mr. Medalie post the contents of his advanced directive for all to see. I'm sure many people throughout the country - myself included - would then insert it into their own advanced directives. It's time to put an end to years and years of darkness in a nursing home.
7
I have personally taken care of countless people with no apparent quality of life. They do not speak, recognize people, walk, are incontinent etc. The number one reason that they are alive is being fed. It is a reflex. Put a spoon to their mouth and they open it. They appear to be living in a human prison with now way out. It is heartbreaking. As a hospice nurse, I know that stoping to eat and drink is one of the most natural and humane ways to die. There is no documented suffering. The body goes into a euphoric electrolyte state ( think religeous fasting ). I educate family and practitioners on how to care for someone who is dying ( End of Life Doula Training ). This choice of VSED must be brought to the forefront and be a viable option. I will be launching my " No Food For Thought " campaign that discusses this exact point. We need to do more of dying well and less of dying in a suffering state indefinitely.
9
We need an iron clad way to have our desires enforced. I have no desire to live as a person I don't know, and gee I hope if it every happens someone will do the right thing.
2
In Oregon we have assisted suicide laws that have been on the books for several years. Hundreds of people have chosen this option to end their lives and spare themselves and their families the long and painful journey to "the end". But, they need to be able to swallow, cannot be confused, must make clear affirmative statements as to what they are asking for in the presence of their doctor and must be within 6 months of death as determined by their doctor. And they must be able to administer the barbiturate cocktail to themselves in a drink..mixed with soda, or water etc., Dementia proves a tricky diagnosis for the patient seeking to use assisted suicide. It pretty much rules it out as they are not usually near death, and cannot make their needs or desires known. It is probably time to add some provisions for dementia and altzheimer's to our law in the form of amendments. This will bring out all the ethicists again, the bible thumpers, the right to lifers, the people who like to sit around and tell others how to live....but their influence is shrinking. I know if I could not recognize family members, had no idea where I was, etc., I would want to speed things along....why be a human solid waste processing plant?
6
Two of my grandparents died this way- by withholding food and water. It was horrifying. My grandfather took a month- 30 days- to die. I didn't get to see my grandmother go- none of us did. A distant relative, as soon as she got health power of attorney, unbeknownst to us, called in hospice and began the 'treatment'- against my grandmother's protests- then she raided her bank accounts and IRAs. It's a double edged sword, and an advance directive can be used against you. I still feel ill just thinking about it. I understand the impulse but it left me with the feeling I want to die naturally, and enjoy every second of life remaining to me.
3
With respect, and even an advance apology, can we be sure some institutions don't just want to keep their beds full?
Surely we must accept the patients/family clear wishes, by alleviating any consciousness of the letting go of life.
How difficult it must be for compassionate caregivers to witness the body in its natural attempt to survive--even though the patient feels he/she has had enough.
Surely we must accept the patients/family clear wishes, by alleviating any consciousness of the letting go of life.
How difficult it must be for compassionate caregivers to witness the body in its natural attempt to survive--even though the patient feels he/she has had enough.
4
Unnecessary prolonged suffering makes no sense. If the patient end result I'd death and they are not able to survive, why put them through and the loved ones through unnecessary suffering. This is cruel and very difficult for loved ones as they feel helpless. When dealing with a terminal illness the patient has the right to dignity and the right to make the decision with their loved ones on the course of care that is humane. We are allowed those decisions when it is our beloved pets who are very important and family members. What does extended suffering and loss of dignity accomplish....nothing but sadness, anguish and unreasonable pain and suffering. Human beings have the right to die with dignity just as we have the basic right to live with dignity. When the only option is death, it should be on this patients terms. There is nothing worse than watching someone suffer and you are rendered helpless to give them comfort. Let the experience be a serene and comfortable as possible as patients and loved ones say their farewell to the next journey they are about to embark on. This is humane!
6
We should stop preventing influenza, to shorten life spans, out of respect for other creatures and future generations!
2
Ethically, suicide is much more entangling when requesting community involvement. Can a community make life-ending decisions after you are difficult or impossible to consult, or may have changed your mind?
... maybe?
I have been told by some nurses I "don't know what it's like," as if there were no more need for conversation. Many scoff at the notion of "dignity" in living as long as possible. Key among their concerns are the forgotten elderly and the ramifications of advanced dementia. We could benefit from better understanding (and volunteering at nursing homes). These nurses have experience others don't, but I also sympathize with institutions who don't want to allow VSED directives.
As a care provider, your staff have an idea of what care is - you are offering that idea. If VSED is lawful, organizations should be able to refuse to provide it (prior to any directive becoming relevant).
At a Catholic institution, I would be alarmed if I were offered VSED. Trust that a provider will do everything they can is important. Even a VSED option is something that, for some, would undermine that trust.
Ceding power over your death to an organization is something many of us are allergic to, Mr. Medalie included. He is protected less by his directive than by the strength of his will and the love of his family, remaining integrated as he does with a community as many patients tragically don't, or cannot. There, I think, is a quieter but far more tragic and widespread problem.
... maybe?
I have been told by some nurses I "don't know what it's like," as if there were no more need for conversation. Many scoff at the notion of "dignity" in living as long as possible. Key among their concerns are the forgotten elderly and the ramifications of advanced dementia. We could benefit from better understanding (and volunteering at nursing homes). These nurses have experience others don't, but I also sympathize with institutions who don't want to allow VSED directives.
As a care provider, your staff have an idea of what care is - you are offering that idea. If VSED is lawful, organizations should be able to refuse to provide it (prior to any directive becoming relevant).
At a Catholic institution, I would be alarmed if I were offered VSED. Trust that a provider will do everything they can is important. Even a VSED option is something that, for some, would undermine that trust.
Ceding power over your death to an organization is something many of us are allergic to, Mr. Medalie included. He is protected less by his directive than by the strength of his will and the love of his family, remaining integrated as he does with a community as many patients tragically don't, or cannot. There, I think, is a quieter but far more tragic and widespread problem.
I understand the concern with losing dignity and burdening family. But both are judgements by other people than the person with dementia. We don't know his/her mind about life or death. As long as they are taking food and water, I'd take it as an indication that they want to live.
3
The instinct to take water and food as as deep as any human instinct can be.
So you can imagine when people begin refusing food and water -- if they do-- how awful and weak and sick they must feel and be.
As a hospice worker I have seen fully conscious, alert patients who are actively dying, refuse food. I have also seen actively dying patients who are not fully conscious "take" (being given small amounts of liquid) -- and most have difficulty swallowing it and/or keeping it "down."
Dementia patients at end stage almost without exception cannot swallow.
Few take food, in any form. Attempts are made to swab their lips and inside of their mouths with water, but that is all.
Does the inability and ability to swallow or take food then tell us when patients "want to live?"
No, I think not.
So you can imagine when people begin refusing food and water -- if they do-- how awful and weak and sick they must feel and be.
As a hospice worker I have seen fully conscious, alert patients who are actively dying, refuse food. I have also seen actively dying patients who are not fully conscious "take" (being given small amounts of liquid) -- and most have difficulty swallowing it and/or keeping it "down."
Dementia patients at end stage almost without exception cannot swallow.
Few take food, in any form. Attempts are made to swab their lips and inside of their mouths with water, but that is all.
Does the inability and ability to swallow or take food then tell us when patients "want to live?"
No, I think not.
6
Having an advance directive offers those caring for an elderly a solution to the emotional, physical and financial burden placed on them. I commend Mr. Medalie for having one, but what to do when there is no advance directive?
Ten years ago, my now 107-year old grandmother fell and broke her hip, requiring surgery and rehab for nearly a year. She never regained her mobility and five years ago began a slow mental decline following several mini strokes. Five years ago, my mom and her ailing older sister made the difficult decision to place her in a nursing home, knowing she opposed outside care. She has been blind from glaucoma for more than 20-years now and spoon-fed for almost as long. My 82-year old mom drives half an hour several times a week to visit her even though she no longer recognizes her daughter, can hold a conversation and is asleep most of the time. But despite everything, her presence, existence continues to bring an unexplainable warmth and joy. Would life be better for everyone if my grandmother had had an advance directive to VSED?
Ten years ago, my now 107-year old grandmother fell and broke her hip, requiring surgery and rehab for nearly a year. She never regained her mobility and five years ago began a slow mental decline following several mini strokes. Five years ago, my mom and her ailing older sister made the difficult decision to place her in a nursing home, knowing she opposed outside care. She has been blind from glaucoma for more than 20-years now and spoon-fed for almost as long. My 82-year old mom drives half an hour several times a week to visit her even though she no longer recognizes her daughter, can hold a conversation and is asleep most of the time. But despite everything, her presence, existence continues to bring an unexplainable warmth and joy. Would life be better for everyone if my grandmother had had an advance directive to VSED?
'...“We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,” said John Brehany, a former executive director of the Catholic Medical Association. He predicted that Catholic-affiliated hospitals and nursing homes wouldn’t honor such directives...'
People should decide for themselves is their life has 'meaning', not the government, a religious institution, a medical professional, or even their families.
Perhaps the Catholic Church would like to pay for the billions in end-of-life care for the terminally ill who made it clear that they reject all attempts to keep them alive against their express wishes?
Thought not.
People should decide for themselves is their life has 'meaning', not the government, a religious institution, a medical professional, or even their families.
Perhaps the Catholic Church would like to pay for the billions in end-of-life care for the terminally ill who made it clear that they reject all attempts to keep them alive against their express wishes?
Thought not.
9
Thank you for this discussion. I have told my family that I don't want tube feeding if I get Alzheimer's or other dementia, but I hadn't thought of just withholding food. I'm not sure how I feel about that.
I do know that I don't want any flu or pneumonia vaccinations if I have dementia, and I want the anti-vaccine fanatics to come visit me with hugs and kisses during flu season! Those people must be good for something!
I do know that I don't want any flu or pneumonia vaccinations if I have dementia, and I want the anti-vaccine fanatics to come visit me with hugs and kisses during flu season! Those people must be good for something!
12
I too hope that Jerome Medalie decides to share his list of 10 triggering conditions. The Times article makes it clear that general purpose advance directives are not specific enough to ensure that a patient's dying wishes are fulfilled.
1
Mr. Miller,
Jerome Medalie has posted his advance directive, and some accompanying commentary, on a simple website:
https://sites.google.com/site/jeromemedalie/
Jerome Medalie has posted his advance directive, and some accompanying commentary, on a simple website:
https://sites.google.com/site/jeromemedalie/
1
I don't know how many times I've heard people say that they would never want to live in wheelchair. Possibly, it is the same number as people who I know who are confined to wheelchairs and make the best of their lives.
The problem with this article is the assumption that it is straightforward to determine whether someone with dementia can recognize their family. My sisters have insisted for years that my mother can't recognize anyone, but I talk to her every day and she seems happy to hear from me. Likewise with my late father: two days before he died (from neglected pneumonia and starvation), he called out my name. We simply do not know how much cognition patients with dementia, even severe dementia, retain.
The problem with this article is the assumption that it is straightforward to determine whether someone with dementia can recognize their family. My sisters have insisted for years that my mother can't recognize anyone, but I talk to her every day and she seems happy to hear from me. Likewise with my late father: two days before he died (from neglected pneumonia and starvation), he called out my name. We simply do not know how much cognition patients with dementia, even severe dementia, retain.
7
I recently lost my dad, who suffered from dementia after a long string of medical crises lasting several years. If you had asked him when he was still himself whether he would want to go on like that I'm sure he would have said no, don't feed me. But the fact is, even though he didn't know me (his 50+ year-old daughter) and required 24/7 care, he still ate "well" and appeared to enjoy meals pretty much until the day he died. It'[s one thing for someone to starve himself. But how could anyone withold food from a person who is no longer himself, and who is literally dying to be fed? Even if my father had had a document similar to Mr. Medalie's posted on his bedroom wall, I could never have honored it.
8
I've made a video regarding my wishes for VSED should I become incapacitated by dementia; would like to know what's in Mr. Medalie's list so I can include those points. (Why wouldn't that have been an obvious sidebar to the story?)
Our laws regarding euthanasia need to adapt to the reality that many of us may end up in such a predicament and don't wish to languish in a nursing home bed unable to take part in anything approaching "living." If I'm reduced to an infantile state of not recognizing loved ones, not being aware of current events and not able to feed, dress, bathe or toilet myself -- give me the needle! Or at least, stop giving me food and antibiotics and anything else that will prolong the pointless agony and loss of dignity.
Our laws regarding euthanasia need to adapt to the reality that many of us may end up in such a predicament and don't wish to languish in a nursing home bed unable to take part in anything approaching "living." If I'm reduced to an infantile state of not recognizing loved ones, not being aware of current events and not able to feed, dress, bathe or toilet myself -- give me the needle! Or at least, stop giving me food and antibiotics and anything else that will prolong the pointless agony and loss of dignity.
8
If the VSED in my advanced directives is unenforceable, I'll have to sashay over to Walmart and get me a gun, and use it while I still have a shred of brain left. If my daughter, who loves me more than anyone and who I trust more than anyone, is willing to abide by the VSED, shouldn't that be enough?
4
"If she encountered a future Jerome Medalie, bed-bound and suffering from advanced dementia, she said, 'I would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream.'
...and thus prolonging his agony and ignoring his rational decision.
...and thus prolonging his agony and ignoring his rational decision.
32
Ensuring full autonomy of decision making while gradually dying from dementia or whatever cause is essential, and I applaud everyone who gets that specific in their advance directives. I'd like to add another directive that may also allow death with dignity: Spell out that you want NO medical interventions, for anything, no matter what. Do not take me to the doctor, do not give me antibiotics, no way will I ever set foot in the door of any healthcare institution.
See: the underappreciated film classic, Critical Condition. Hell no, we won't go! It's the only hope, for quality of life, autonomy, and yes, our ailing healthcare system. In fact, our economic futures as well.
See: the underappreciated film classic, Critical Condition. Hell no, we won't go! It's the only hope, for quality of life, autonomy, and yes, our ailing healthcare system. In fact, our economic futures as well.
3
Thank you for this nuanced article. Forgive me for not reading all of the comments but in case this has not been mentioned, I would like to add that I have heard of people committing suicide "while I still have the ability to do so," just because they don't want to be kept alive when their illness is too advanced to allow them the quality of life they feel is worth living for. Maybe some of these folks would wait if they knew there was another way out like the one Mr. Medalie is seeking.
3
If Mr. Medalie's "way out"--of last choice--is something folks didn't know about, once they find out what it really entails...days, weeks of pain and suffering...believe me they will run, not walk, to the nearest stash of pills and bourbon.
4
VSED is not a comfortable, easy way to go. It's horrible. The best thing to do is take the SAGE dementia test from the University of Ohio every year on your birthday. At the very first signs, check out with Dignitas. They will take you but only in the very early stages. Most people just go into denial and miss the window where you can still make decisions and have knowledge of what illness you have.
4
Having worked as a counselor in a retirement home and supported my parents end of life choices, Whatever the complexity of the choices that arise, I see the Advanced Directive as a starting point. It is a starting point for a discussion with parents, family, doctors, and facility staff to all get on the same page about how to proceed when communication at a later point falters. Everyone can have an opportunity to express their boundaries and it is early enough in the process to choose doctors and facilities that are more comfortable meeting the needs expressed in the directive. Later, it can be used as leverage to remind others that hard choices should be based on the desires and values of the patient (our parent) and much less on the moral compass of the health care providers and medical power of attorney (family). This way process can come as close as possible to the desires of our parent.
I really like the detail of Jerome Medalie's directive and in conversations with my parents I have described a variety of ways of dying and asked my parents to describe how they would like to be treated in each situation. I feel like additional important treatments to withhold under the right conditions are the use of antibiotics, IVs, blood transfusions, and oxygen. A directive that covers all the essential treatments will more likely achieve the desired result than one that only specifies cardio and pulmonary resuscitation.
Best wishes to everyone.
I really like the detail of Jerome Medalie's directive and in conversations with my parents I have described a variety of ways of dying and asked my parents to describe how they would like to be treated in each situation. I feel like additional important treatments to withhold under the right conditions are the use of antibiotics, IVs, blood transfusions, and oxygen. A directive that covers all the essential treatments will more likely achieve the desired result than one that only specifies cardio and pulmonary resuscitation.
Best wishes to everyone.
If we only allowed people to die with an overdose of opiates or sleeping pills when they become severely demented...no one would have to suffer.
8
At present, sadly, those of us in the early stages of dementia will have to make a premature exit.
But rationally, think about it: standard "wills" tell the world what we wish AFTER our deaths...why cannot our advance directive LIVING wills cover assisted, peaceful, painless death BEFORE out deaths?
Why?
Because religious types and politicians and Big Med all have compelling reasons to want to dictate when and how we die.
But if we get up, organize, agitate and demand control of our own bodies during our lifetime...it can change.
In the meanwhile, be your own boss.
But rationally, think about it: standard "wills" tell the world what we wish AFTER our deaths...why cannot our advance directive LIVING wills cover assisted, peaceful, painless death BEFORE out deaths?
Why?
Because religious types and politicians and Big Med all have compelling reasons to want to dictate when and how we die.
But if we get up, organize, agitate and demand control of our own bodies during our lifetime...it can change.
In the meanwhile, be your own boss.
6
When my mother reached a certain stage of dementia, about ten years into it, she was no longer able to swallow. She had already signed a DNR several years before, and everyone at her assisted living place was behind that completely. Also, someone in an ER had intubated her when she developed bad pneumonia just before I moved her into her room at the assisted living facility, leaving her home. That day in the ER, she just waited until they all left the room, and ripped out the tube herself. I came to the edge of the curtain and explained she would not accept intubation, nor would I. They did not reintubate, and she recovered from the pneumonia, to live nearly nine years longer in assisted living. At the last, she no longer knew her own room, or what chair she used every day, and was not clear about who I was, but she did know she loved me and that I should be there. (She also thought one of the caregivers was me.) She was incontinent, and stared at the TV even when the cable was temporarily off.
Despite all of us being on the same page, when she could no longer swallow it was still hard for me to follow through. I did so, however. The staff was very kind, and gave me an article from a gerontology publication explaining how dehydration progressed, and how there was no pain. This helped me. After 11 days, my mother quietly died in her sleep. I was so glad she did not have to go to the very end of dementia.
Despite all of us being on the same page, when she could no longer swallow it was still hard for me to follow through. I did so, however. The staff was very kind, and gave me an article from a gerontology publication explaining how dehydration progressed, and how there was no pain. This helped me. After 11 days, my mother quietly died in her sleep. I was so glad she did not have to go to the very end of dementia.
4
Wednesday afternoon:
I called Compassion in Dying last evening and left my name and number.
Call by this am and here's what I got:
* they wanted lots of personal info about me
before telling me about what they could do for me
*informed me that they really only wanted to speak
to terminally ill in terms of "real services"...but would
send a packet of materials (oh no, not more paper)
*when I asked to "cut to the chase" about what they
specifically could do -- for example tell me where to
buy nembutal or if they could send someone to
"sit with me" while I died....well...turns out they
claim in NYC they cannot send anyone to sit with
(perhaps Montana?)...and they might, if I were
terminal, provide a list of drugs that would do me
in. (Hmmmm...that is easily available elsewhere.
When I asked if they would advocate/push for universal right to death with dignity...well...not so much...seems like they like arm's length lists of pills (they do not procure) and they absolutely love starvation.
Oh God, another slick, American organization that while it has pushed for legislation for the 6-monthers, has given away the baby with the bath water.
In the states where that restrictive legislation has "passed" you must be at death's door and get two or three ok's from md's.
Not my idea of a peaceful, swift death for all.
I called Compassion in Dying last evening and left my name and number.
Call by this am and here's what I got:
* they wanted lots of personal info about me
before telling me about what they could do for me
*informed me that they really only wanted to speak
to terminally ill in terms of "real services"...but would
send a packet of materials (oh no, not more paper)
*when I asked to "cut to the chase" about what they
specifically could do -- for example tell me where to
buy nembutal or if they could send someone to
"sit with me" while I died....well...turns out they
claim in NYC they cannot send anyone to sit with
(perhaps Montana?)...and they might, if I were
terminal, provide a list of drugs that would do me
in. (Hmmmm...that is easily available elsewhere.
When I asked if they would advocate/push for universal right to death with dignity...well...not so much...seems like they like arm's length lists of pills (they do not procure) and they absolutely love starvation.
Oh God, another slick, American organization that while it has pushed for legislation for the 6-monthers, has given away the baby with the bath water.
In the states where that restrictive legislation has "passed" you must be at death's door and get two or three ok's from md's.
Not my idea of a peaceful, swift death for all.
4
Dignitas will take you but only in the very early stages of dementia. Since there is no routine cognitive testing done and most people avoid all thoughts of it, they miss the window of opportunity. Doctors will do testing for say colon cancer or mammograms but then ignore something that you have a 50/50 chance of having when you hit 80+.
2
Detalumis:
Thank you for valuable info re Dignitas...had long been a member but yearly fees got difficult for me.
Do you know if they require some kind of "proof" re early dementia? If so, what?
Thank you for valuable info re Dignitas...had long been a member but yearly fees got difficult for me.
Do you know if they require some kind of "proof" re early dementia? If so, what?
With each animal I have adopted during my life, I have promised them a good life, but more importantly, a good death: a promise to not let them suffer needlessly for my sake, for my unwillingness to make the hard decision and decide when it was "time". And for most of my companion animals, the clue is that they stop eating.
I was too young to remember when my grandmother died of dementia, for I was not allowed to see her for the last years of her life. My mother also died of dementia, and I requested a brain biopsy, because I wanted to know just how the genetic dice were stacked. They are not in my favor.
I can't say that for my mother, her mid-to late stage dementia was terrible for her, because she didn't know. I thought of her as a toddler--she had about a 5-10 second memory span, could recognize none of us, and lived in some kind of world of her own. However, for the rest of us, those who loved her, it was hell. When she died of aspiration pneumonia a friend said "I know you feel as if you lost your mother years ago". Yes and no. There was always the living presence of what was not.
As someone posted earlier on this comment thread, I will have to promise myself a good death if the dementia dice are rolled against me, and have to do it earlier rather than wait, because waiting is forgetting, and forgetting is inflicting incredible pain on those people I love.
I was too young to remember when my grandmother died of dementia, for I was not allowed to see her for the last years of her life. My mother also died of dementia, and I requested a brain biopsy, because I wanted to know just how the genetic dice were stacked. They are not in my favor.
I can't say that for my mother, her mid-to late stage dementia was terrible for her, because she didn't know. I thought of her as a toddler--she had about a 5-10 second memory span, could recognize none of us, and lived in some kind of world of her own. However, for the rest of us, those who loved her, it was hell. When she died of aspiration pneumonia a friend said "I know you feel as if you lost your mother years ago". Yes and no. There was always the living presence of what was not.
As someone posted earlier on this comment thread, I will have to promise myself a good death if the dementia dice are rolled against me, and have to do it earlier rather than wait, because waiting is forgetting, and forgetting is inflicting incredible pain on those people I love.
7
I am struck by the exclusive focus on what makes everyone feel good expressed best by Dr. Susan Mitchell in her statement that she would not feel comfortable to not offer someone in an advanced 'not able to participate in life anymore' state some water and ice cream. The desire and wishes of individuals about their condition and how they want to deal with it are shoved aside with high minded moralistic sentiments and by the need of people to make themselves feel comfortable when the focus should be on respectfully dealing with a person's important life decisions.
12
There is money to be made in even this "paper" part of dying...lots of it.
I checked some of the newly sprung "kits" and "packages" (including some labeled "natural" (is that like organic?).
They sell for hundreds of dollars, are offered on line by all kinds of hucksters...lawyers, social workers, psychiatrists...all in the business of helping YOU, the dying or future dying, to get the "paper" right so that none of the "bad" things happen to you...and that your wishes are not ignored.
Everything you need to know about starving yourself, and much, much more.
It is stomach turning to see this.
Education is one thing, but the truth is everything.
Learn what you can...but know that even with piles of papers, directives, signed documents..without a screaming, raving, staunch advocate by your side 24/7, you will be, at some point, abused in the dying process.
The real fight must be to be able to chose a quick, painless death.
What differences does it make if you are demented?
After all, our wills (the ones in which we leave our estates/possessions) are "good" after our deaths, why not our desires, directives before our deaths?
I think that perhaps this dementia discussion is a big smoke screen...largely unnecessary. If we write our wishes or record them or both, they, like any will, must be honored. Demented, dying or dead.
I checked some of the newly sprung "kits" and "packages" (including some labeled "natural" (is that like organic?).
They sell for hundreds of dollars, are offered on line by all kinds of hucksters...lawyers, social workers, psychiatrists...all in the business of helping YOU, the dying or future dying, to get the "paper" right so that none of the "bad" things happen to you...and that your wishes are not ignored.
Everything you need to know about starving yourself, and much, much more.
It is stomach turning to see this.
Education is one thing, but the truth is everything.
Learn what you can...but know that even with piles of papers, directives, signed documents..without a screaming, raving, staunch advocate by your side 24/7, you will be, at some point, abused in the dying process.
The real fight must be to be able to chose a quick, painless death.
What differences does it make if you are demented?
After all, our wills (the ones in which we leave our estates/possessions) are "good" after our deaths, why not our desires, directives before our deaths?
I think that perhaps this dementia discussion is a big smoke screen...largely unnecessary. If we write our wishes or record them or both, they, like any will, must be honored. Demented, dying or dead.
12
So right. You must have a warrior at your side, or the medical machine will just grind along. And it is a thankless role, for a loved one to fight tooth and nail to allow a life to end.
7
If she encountered a future Jerome Medalie, bed-bound and suffering from advanced dementia, she said, “I would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream.”...
I just hope that this person who she wants force feed is not lactose intolerant.
I just hope that this person who she wants force feed is not lactose intolerant.
8
Appreciate the humor...it truly goes a long way particularly after being informed that we need to be taught that we are not now and ever going to be "in control" of our dying process by the previous poster.
And, to get your goat...at Hospice we supplied lactose free and sugar free ice creams of all kinds.
It was mostly the kids and grandkids of our dying patients who enjoyed it.
And, to get your goat...at Hospice we supplied lactose free and sugar free ice creams of all kinds.
It was mostly the kids and grandkids of our dying patients who enjoyed it.
7
Our mom had an advanced directive, and was in Hospice Care at the end of her 5 year battle with Vascular Dimentia. Yes very difficult moments during that journey. As she progressed from mild to moderate dimentia, she became more peaceful and less fearful.
During her last month she began pocketing food and had difficulty swallowing. Soon after she stopped eating/drinking-her body's way of telling us goodbye. We simply followed her lead. In her final days she mostly slept, (although she did wake at times and communicated in a way she would have never been able to during the last year or so. True last blessings). We sponged her lips, applied lip balm-our attempt making her comfortable.
This gentleman understandably does not want to suffer the indignity of losing his mind or putting family through this painful ordeal. However, our lives are not our own. We do not get to choose. We were created by God. He brought us into this world. He will see us out. What we have learned through this process with mom is that the suffering lies more on the side of family members. There are lessons we learn. We may not understand the whys, but through the process of caring for loved ones and persevering with patience until the natural end of life, we develop personal maturity and spiritual growth. Through this life experience we acquire the gifts and virtues of charity, mercy and love. Life's tough battles strengthen and define us and most importantly teach us WHO really is in control! (God)
During her last month she began pocketing food and had difficulty swallowing. Soon after she stopped eating/drinking-her body's way of telling us goodbye. We simply followed her lead. In her final days she mostly slept, (although she did wake at times and communicated in a way she would have never been able to during the last year or so. True last blessings). We sponged her lips, applied lip balm-our attempt making her comfortable.
This gentleman understandably does not want to suffer the indignity of losing his mind or putting family through this painful ordeal. However, our lives are not our own. We do not get to choose. We were created by God. He brought us into this world. He will see us out. What we have learned through this process with mom is that the suffering lies more on the side of family members. There are lessons we learn. We may not understand the whys, but through the process of caring for loved ones and persevering with patience until the natural end of life, we develop personal maturity and spiritual growth. Through this life experience we acquire the gifts and virtues of charity, mercy and love. Life's tough battles strengthen and define us and most importantly teach us WHO really is in control! (God)
2
Not everybody is religious and they should not be bound by your laws about a spirit in the sky. I don't want somebody touching my lips with lip balm, I would prefer a Nembutal cocktail.
14
Beautiful words, well spoken, Tim B. A lesson for us all.
He didn't say they were his laws about a spirit in the sky. And I do hope you get your Nembutal cocktail before you meet your Maker, and I trust He will still say, "Welcome Home, Son".
"I would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream," does sound wonderfully wise, reasonable and compassionate. But I think it is unlikely that a Harvard Medical School physician would spend her days and her family's last resources spoonfeeding terminal dementia patients. If that little spoonful is circumventing the patient's own expressed desires and prolonging the agony of a slow relentless decline, then she should be prevented from indulging her sentiments and meet her legal and professional obligations.
13
If I can make a will concerning my property while in relatively sound mind and that will would still stand should I die after years of dementia, then why should my stated wishes re end of life issues, and particularly in the case of dementia, made when I was of sound mind not be respected?
21
Jonathan:
Yes, you are right...I realized that this morning in thinking about this entire bruhaha...
It's a smokescreen I think, it draws attention away from the true core issue that politicians and religious leaders don't want to deal with....
The increasing demand amongst the American population to have the right to die on demand...either with help or not, peacefully and quickly with drugs.
And without the intervention or say-so of doctors, ethicists, family, social workers, etc.
Yes, you are right...I realized that this morning in thinking about this entire bruhaha...
It's a smokescreen I think, it draws attention away from the true core issue that politicians and religious leaders don't want to deal with....
The increasing demand amongst the American population to have the right to die on demand...either with help or not, peacefully and quickly with drugs.
And without the intervention or say-so of doctors, ethicists, family, social workers, etc.
7
So many of us approaching old age want the right to choose how to die if quality of life diminishes too much. I think virtually all who want that right would prefer the most humane death, which of course is via barbiturates, almost impossible to acquire without a prescription. I'll reluctantly sign up to starve but we really need to ask why we're denied the other option. I've read the ethics and understand the issues on that end, but I don't buy it given the demand. Who profits from sustaining the lives of terminally ill or profoundly incapacitated elders? Is my generation, so fiery and effective back in the day, too out of steam to fight hard for this one?
16
1. Mr. Madelie needs a Comfort Care DNR Order or MOLST form (those are the labels in Massachuetts) from his doctor. That language in his advance directive without a doctor's signed order is of NO legal consequence for emergency personnel to avoid CPR.
2. I doubt very much if those 4 named states have banned the withdrawal of oral feeding. That would mean that everyone has to be force-fed by mouth until they die. I think the author meant "artificial" feeding. Actually 13 states require a clear directive from the patient to allow the withholding or withdrawal of tubal feeding. That was the whole point of the Cruzan Supreme Court case.
It's a big plus that Mr. Medalie has discussed all this with his close loved ones, because his 9-page advance directive will not be read by health care personnel, certainly not in an emergency. A proxy who will advocate for your care wishes--even if it makes the doctor feel uncomfortable--is the key to effective advance directives.
And VSED-type clauses are quire common in contemporary Living Wills. Unfortunately, only 26 percent of American adults have advance directives.
Jo Kline Cebuhar, J.D.
author of 2015 Edition of the
Practical Guide to Health Care Advance Directives
2. I doubt very much if those 4 named states have banned the withdrawal of oral feeding. That would mean that everyone has to be force-fed by mouth until they die. I think the author meant "artificial" feeding. Actually 13 states require a clear directive from the patient to allow the withholding or withdrawal of tubal feeding. That was the whole point of the Cruzan Supreme Court case.
It's a big plus that Mr. Medalie has discussed all this with his close loved ones, because his 9-page advance directive will not be read by health care personnel, certainly not in an emergency. A proxy who will advocate for your care wishes--even if it makes the doctor feel uncomfortable--is the key to effective advance directives.
And VSED-type clauses are quire common in contemporary Living Wills. Unfortunately, only 26 percent of American adults have advance directives.
Jo Kline Cebuhar, J.D.
author of 2015 Edition of the
Practical Guide to Health Care Advance Directives
4
The cognitively intact self does not know what the future diminished self will desire. My older relatives have desperately wanted to live and eat, even with diminished capacities. Recognize also that there are varying degrees of dementia. Why not provide measures to keep a dementia patient as comfortable and happy as possible while avoiding invasive procedures?
9
Yes. Exactly.
2
May I also point out the cracks in hospice care system...
every year thousands of people die alone, or without having an end-of-life conversation that goes beyond illeness, while most of us don’t know how to live and how we will measure our life in the end.
It would be really nice to know what you think about this initiative: http://dyingby.com/
Maybe we are not ready to become dependent on another person and be helped, but each of us is ready to provide help.
every year thousands of people die alone, or without having an end-of-life conversation that goes beyond illeness, while most of us don’t know how to live and how we will measure our life in the end.
It would be really nice to know what you think about this initiative: http://dyingby.com/
Maybe we are not ready to become dependent on another person and be helped, but each of us is ready to provide help.
I have seen the utter horror of relatives living the unrelenting agony of dementia. It is barbaric to insist that they continue to live to satisfy religious dogma. The only humane solution is euthanasia. Since legislators' adherence to a Godless God prevents them from doing the right thing, it is imperative that we make the decision to end our lives while we are still cognizant enough to recognize what the future holds and commit suicide by whatever means we can muster. We need not continue to live to satisfy selfish relatives or egregious religious ignorance.
10
This is MRS. A person who has taken the time to cognitively set forth advanced directives should have those directives respected. When a dementia sets in and the person is no longer able to make decisions for him/herself, those directives should be applied. Because of the society in which we live, DNR and DNN directives are hard for those caregivers to follow. Nursing homes and at-home caregivers should have freely available all of the pertinent paperwork that a patient has to effect the best and and most respectful care with the request of the patient at the forefront of anything. Nursing homes and at-home caregivers should be legislatively absolved of mistreatment in the execution of patient requests to not be rescusitated or nourished/hydrated when the circumstances present themselves.
1
Some random thoughts:
I think it turns out that your dignity can survive some things that might surprise you.
Similarly with pleasures - someone who has lost access to a whole range of pleasures, can seem to get significant enjoyment out of quite small things.
I'm worried about including the emotional stress of the family in any equation. I wouldn't question anything anybody says about the awfulness of some prolonged deaths. But severe emotional stress for some families might mean having to wait another month to get at their inheritance - or seeing the inheritance diminish or even go away entirely.
With all respect to Mr Medalie, let's also honor and respect those who might want to hang in a little longer, even if it just means enjoying another spoonful of ice cream. I hate the idea of anyone judging that someone else's life is no longer worth living.
Too bad decent assisted living isn't covered by Medicare.
I've heard this process of withholding food and water and antibiotics described a couple of times, and it seemed like a harsh but maybe OK feature of "last few days" care. But I hadn't heard of it as a way of initiating the last few days, when there wasn't something like pneumonia already happening.
The idea of "not being me anymore" - interesting and important. But - I am not the "me" I was when I was eighteen - thank goodness I didn't write a living will back then. (Funny movie opportunity there)
I think it turns out that your dignity can survive some things that might surprise you.
Similarly with pleasures - someone who has lost access to a whole range of pleasures, can seem to get significant enjoyment out of quite small things.
I'm worried about including the emotional stress of the family in any equation. I wouldn't question anything anybody says about the awfulness of some prolonged deaths. But severe emotional stress for some families might mean having to wait another month to get at their inheritance - or seeing the inheritance diminish or even go away entirely.
With all respect to Mr Medalie, let's also honor and respect those who might want to hang in a little longer, even if it just means enjoying another spoonful of ice cream. I hate the idea of anyone judging that someone else's life is no longer worth living.
Too bad decent assisted living isn't covered by Medicare.
I've heard this process of withholding food and water and antibiotics described a couple of times, and it seemed like a harsh but maybe OK feature of "last few days" care. But I hadn't heard of it as a way of initiating the last few days, when there wasn't something like pneumonia already happening.
The idea of "not being me anymore" - interesting and important. But - I am not the "me" I was when I was eighteen - thank goodness I didn't write a living will back then. (Funny movie opportunity there)
4
I would like to know what are the ten triggering conditions that Mr. Medalie defined for himself. The article just mentios two. I have been thinking about my own criteria and his thoughts will help me. Very interesting article.
1
Once again, here is a simple website where Mr. Medalie has posted his entire advance directive, along with some commentary. (He is a lawyer, after all.) But other individual contemplating VSED by AD might choose very different criteria.
https://sites.google.com/site/jeromemedalie/
https://sites.google.com/site/jeromemedalie/
1
Hallaleuia! When I started my career in Nursing dementia patients were routinely syringe fed when spoon feeding became too cumbersome. Pureed food was squirted into the corner of their mouths to circumvent the tongue thrusting the food out. It was appalling. With a family history of dementia, I already have plans to sign a DNR/DNH/no tubes health care directive, but now can add a do not shovel food into me when I start refusing food clause.
3
My dad could no longer swallow on his own, dementia last stage. They asked if we wanted a tube feeding inserted. That in itself was a difficult decision for my brother - not for me, a nurse, a case manager, an observer of many who had this happen to them. No.
If difficult to advocate for someone unable to swallow, how ethically, is there ever going to be conclusive policies for those who can swallow? Oral nutrition. What is oral nutrition and the meaning of it? Food taken orally to make the body healthy and keep it strong? But Jerome Medalie, and many others, including myself, will not want to keep our bodies healthy and strong under some circumstances of dementia.
We have researched, we have endured extensive medical procedures and diagnostics, we have spent zillions of dollars and used a vast amount of new drugs that will, ah, keep us living longer. And here we have it - for what? For more time to become confused, distanced in every way possible from what we think of as our lives, our true lives?
I have joked to my kids - if you take me to NYC and I don't know where I am - the time has come. My time has come. But not the time of policy, not the time of family perhaps, not the time of other health care providers, and not the time of the law.
Many of us can only hope that just decisions to help us die, when we don't want help to live any more, in our demented states, can and will be made, with the law on our side.
What a day of peace that would be.
If difficult to advocate for someone unable to swallow, how ethically, is there ever going to be conclusive policies for those who can swallow? Oral nutrition. What is oral nutrition and the meaning of it? Food taken orally to make the body healthy and keep it strong? But Jerome Medalie, and many others, including myself, will not want to keep our bodies healthy and strong under some circumstances of dementia.
We have researched, we have endured extensive medical procedures and diagnostics, we have spent zillions of dollars and used a vast amount of new drugs that will, ah, keep us living longer. And here we have it - for what? For more time to become confused, distanced in every way possible from what we think of as our lives, our true lives?
I have joked to my kids - if you take me to NYC and I don't know where I am - the time has come. My time has come. But not the time of policy, not the time of family perhaps, not the time of other health care providers, and not the time of the law.
Many of us can only hope that just decisions to help us die, when we don't want help to live any more, in our demented states, can and will be made, with the law on our side.
What a day of peace that would be.
8
All of these "right to die" arguments overlook that their future self-imposed deaths require the participation of others, which is a burden to those asked to withhold food, etc.
As usual, the selfishness of the argument is myopic and tiring in its claimed simplicity. We've fallen so far from being normal human beings it's scary.
As usual, the selfishness of the argument is myopic and tiring in its claimed simplicity. We've fallen so far from being normal human beings it's scary.
2
Nobody needs to be asked to withhold food if the right to die quickly and painlessly -- a basic human right -- were
protected and provided for.
We help people get born, we help people learn, we help people marry, we help people do all kinds of things.
Is the desire of most people not to suffer as they approach and experience death the only taboo?
protected and provided for.
We help people get born, we help people learn, we help people marry, we help people do all kinds of things.
Is the desire of most people not to suffer as they approach and experience death the only taboo?
9
My wife and I cared for my mother as dementia claimed her memories, her peace of mind, her ability to communicate and interact, and finally her life. There came a time when her delusions and her hallucinations became so vivid and so terrifying that she lived in constant fear. Her loved ones became enemies from whom she shrank. She was frightened that her great grandchildren, just toddlers, were going to harm her. Everyone was a stranger to her and the home where she lived was so unfamiliar that she believed she was being kept from her real home.
There came a time in her life when every moment in her future was destined to be a new misery. There would be no respite, and nothing was left in her world that could provide her any comfort. She truly had died, and the broken remnants of her body and mind were left to suffer.
Before she was overtaken by dementia my mother had expressed her wish to "draw every breath that I can draw." We honored her wish. For those who have commented that the pain and suffering of a quicker death are difficult to observe and endure, I can only say that the alternative is a magnified version of that suffering that no one should have to experience.
There are people who I trust to recognize when my body and mind are no longer capable of supporting an acceptable quality of life. I will leave a silent blessing for them if they help me into the only peace my future can bring.
There came a time in her life when every moment in her future was destined to be a new misery. There would be no respite, and nothing was left in her world that could provide her any comfort. She truly had died, and the broken remnants of her body and mind were left to suffer.
Before she was overtaken by dementia my mother had expressed her wish to "draw every breath that I can draw." We honored her wish. For those who have commented that the pain and suffering of a quicker death are difficult to observe and endure, I can only say that the alternative is a magnified version of that suffering that no one should have to experience.
There are people who I trust to recognize when my body and mind are no longer capable of supporting an acceptable quality of life. I will leave a silent blessing for them if they help me into the only peace my future can bring.
17
If you had an old and much-loved dog, in pain from an incurable cancer, then you'd just stop giving this dog water, right? And that would make it's death extremely "dignified?"
Why can't people count on being treated at least as well as a dog would be?
Why can't people count on being treated at least as well as a dog would be?
4
Nonsense. While we treat some of the most fortunate of our animal companions with considerably more compassionate care at the end of their lives through humane euthanasia, millions of unwanted animals die painful deaths.
People can and do use tube/syringe feeding for animals and while their hydration can be maintained with IV or a simple insertion of fluids on a regular basis for years, we do not have vast empires of for- profit "care facilities" for "demented" animals--yet. When the dogs (and cats) who share our homes have diseases which involve unending painful invasive care or their major systems simply wear out when reaching a normal life span, the most common response is a peaceful death through euthanasia. Many who comment here are actually advocating that option for humans.
So I ask you: "Why can't people count on being treated at least as well as a dog?"--assuming the dog is one of the lucky ones not used in research, for breeding in a puppy mill, in dog-fighting or not just one of the millions of dogs homeless through over-population due to failure to spay/neuter.
People can and do use tube/syringe feeding for animals and while their hydration can be maintained with IV or a simple insertion of fluids on a regular basis for years, we do not have vast empires of for- profit "care facilities" for "demented" animals--yet. When the dogs (and cats) who share our homes have diseases which involve unending painful invasive care or their major systems simply wear out when reaching a normal life span, the most common response is a peaceful death through euthanasia. Many who comment here are actually advocating that option for humans.
So I ask you: "Why can't people count on being treated at least as well as a dog?"--assuming the dog is one of the lucky ones not used in research, for breeding in a puppy mill, in dog-fighting or not just one of the millions of dogs homeless through over-population due to failure to spay/neuter.
2
No, I would take that dog to the vet for a quiet and peaceful death in my arms. And that would be dignified. I know, because I've done it. But we're not talking about dogs, are we?
5
My parents died horrible deaths from dementia and Parkinson's. If either of those conditions approach I'll follow Robin William's lead. You have to do it early and yourself. You can't ask anyone to do it. Be it chemical or what I call heavy metal hyperkinetic therapy you must solve your own problem yourself.
Recall the Harry Nillson song "I'd rather be dead".
Recall the Harry Nillson song "I'd rather be dead".
10
My family just went through this. It is a very tough issue. The right to die on ones own terms will be the big civil rights issue of the next fifty years. No easy answers on this one. After seeing what happened to my mother, I would want the ability to call it a life and end the pain, burden and suffering of those who are caring for me. At that point it should also be about the survivors. I know my Mom would agree...
16
In addition to a well-prepared directive, be sure to recruit and train your advocates early in the process. In 2013 I gave a 6-minute TED talk called A Good End of Life, based on my experience helping our childless ranching neighbors have the end of life they wanted. I was their medical POA. The talk ends with a photo of Shirley in her tiny off-the-grid home, a few days before she died. It was a calm and painless time. Shirley chose to refuse food and water. BUT, with only six minutes, I could not share the part of the story in which Shirley broke her hip 10 days before she died. She had both Alzheimer's and Parkinson's. Admitted to the hospital through the ER, she was in a very alert state but could not speak. It's too long a story for here, but imagine the pressure to stay in the hospital and have surgery. Had her solid-gold caregiver not called me from the ER, it would have been a done deal. Instead, we went home in the morning. We absolutely knew, through five years of hearing Shirley's firm wishes in this regard, what to do. In the evening, her internist and orthopedic surgeon were consulted, and we made this plan together. If you want to avoid a stressful end of life in the ICU, choose advocates who can challenge medical convention if need be, and are able to get to know your doctors. Once we made our decision to go home, many of the staff (nurses, discharge coordinator, assistants, and ambulance personnel) quietly came over to tell us we made the right call.
19
Thank you Mr. Medalie.
5
I have a long family history of dementia and have seen many relatives, including my grandmother and mother, suffer through this terrible disease. Those who have never experienced dementia first hand can have no comprehension of what it is like for the person to die long before the body goes. There is absolutely no quality of life at the point at which a person has lost all of their memories, has no ability to perform ordinary daily tasks and is living in confusion. I have determined never to end this way or inflict such horrors on my son. Unfortunately, society leaves me no choice but to end my life by suicide at a time of my choosing. For me, this means picking a time while I am competent and before the likely onset of the disease (in my family, this is around 75). I will have to give up some good years in order to avoid the 10 or so horrendous years of a lingering dementia death. It should be possible for me to have an advance directive, which is legally enforceable, that would permit euthanasia when certain triggering circumstances occur, as Mr. Medalie has suggested. This would be a far more human, respectful and ethical approach to personal choice than our present system.
22
Yes, but unfortunately the endgame Mr. Medalie and the organizations he is associated with, does not include euthanasia, but starvation.
The "triggering events" are a start...but the "right" to starve oneself (or allowed to be starved) is hardly a desirable goal.
The "triggering events" are a start...but the "right" to starve oneself (or allowed to be starved) is hardly a desirable goal.
@molly As others, some doctors, have pointed out the dying body rejects food all on its own. This is not starvation. To force feed a person in that state is abuse, plain and simple.
4
Memi:
Having worked years in Hospice with patients --yes conscious patients who are actively dying (as they say) usually have little appetite...but not all. We always served meals, many ignored the food, but a good number wanted to eat, even though it made them feel awful, for the most part.
But what is being proposed -- kind of on the sly by some of the so-called compassion-in-dying type organizations, is the notion of INSTEAD of being allowed an instant, peace and painless death -- that the dying endure the often days and sometimes weeks long agony of starvation...for that is what it is.
They do this, to avoid the Big Conversation, the Real Issue...which is, of course, death by drugs that result in near- instant, painless death.
The American so-called advocacy groups are very clean and very polite...and this starvation gambit (or food refusal or whatever name you give it) is the Church approved, politician-approved, hospital-tolerate version of our (mine and your) death.
It is being "put out there" as if the powers that be are granting us a victory, a favor....while allowing them to ignore the real issue of a true peaceful death for all, including dementia patients.
I reject this phony gambit.
Having worked years in Hospice with patients --yes conscious patients who are actively dying (as they say) usually have little appetite...but not all. We always served meals, many ignored the food, but a good number wanted to eat, even though it made them feel awful, for the most part.
But what is being proposed -- kind of on the sly by some of the so-called compassion-in-dying type organizations, is the notion of INSTEAD of being allowed an instant, peace and painless death -- that the dying endure the often days and sometimes weeks long agony of starvation...for that is what it is.
They do this, to avoid the Big Conversation, the Real Issue...which is, of course, death by drugs that result in near- instant, painless death.
The American so-called advocacy groups are very clean and very polite...and this starvation gambit (or food refusal or whatever name you give it) is the Church approved, politician-approved, hospital-tolerate version of our (mine and your) death.
It is being "put out there" as if the powers that be are granting us a victory, a favor....while allowing them to ignore the real issue of a true peaceful death for all, including dementia patients.
I reject this phony gambit.
71
My friend is a nun and when she gets old and infirm she has the right to go to her order's old nuns' home. Her mother also had a right to it - it is part of the deal. One of the thing you agree to when you go in is, "If you can't feed yourself you die." Simple. They won't stave to death if they can't feed themselves because they fell and broke their arm, but if they are unable to feed themselves for other reasons they will die, either of starvation or something sooner. That's OK with me. If I can't feed myself, don't try to feed me please. Thanks! And bring on the morphine if I'm in pain please. Thanks again.
7
The article ends with, “I would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream.” No harm in offering...he's saying don't force him. No means no! And stop thinking about your own comfort in the face of the terrible wasting of another person.
7
Why, oh why, is everyone so determined to keep me from finding a way to die with some tiny bit of dignity if I should develop irreversible dementia? I can write a last will and testament when I am still competent, and those instructions for what to do with my belongings and my cash will be carried out even if I am demented when I die. Why cannot I also write legal instructions on what is to happen to my own body when I am demented. Why do all these other people think they know better than I do?
16
There is only one single organization or group in the United States that is even coming close to addressing the fundamental issue here...that is the individual human right to die quickly, painlessly and on demand with assistance, if needed. That organization, Exit International, is virtually invisible.
All of these self-congratulatory blogged up and self-promoting groups we hear of...Compassion in Dying, Death with Dignity and a host of others are not even coming close . They are fast to point out that they do not challenge existing laws or publicly call on the medical establishment to speak out for the right to die.
They undertook campaigns that were successful... in Oregon and Washington state, but resulted in absurdly restrictive laws that allow only a handful of people to qualify for assistance and these are subject to review and scrunity by...you guess it, doctors.
The only group that I am aware of that is truly working to give the power of their own deaths to everyone is Exit International, based in Australia. And that group has practically been hounded to death itself...yet it courageously goes on. Their publication, the Peaceful Pill, a handbook on "how to do it" is first rate and unequaled in its specificity.
The director of Exit International has repeatedly been denied visas to visit the U.S. by the Obama administration...so afraid are even "progressive" politicians of the power of religious groups, the healthcare lobby and politicians of all stripe.
All of these self-congratulatory blogged up and self-promoting groups we hear of...Compassion in Dying, Death with Dignity and a host of others are not even coming close . They are fast to point out that they do not challenge existing laws or publicly call on the medical establishment to speak out for the right to die.
They undertook campaigns that were successful... in Oregon and Washington state, but resulted in absurdly restrictive laws that allow only a handful of people to qualify for assistance and these are subject to review and scrunity by...you guess it, doctors.
The only group that I am aware of that is truly working to give the power of their own deaths to everyone is Exit International, based in Australia. And that group has practically been hounded to death itself...yet it courageously goes on. Their publication, the Peaceful Pill, a handbook on "how to do it" is first rate and unequaled in its specificity.
The director of Exit International has repeatedly been denied visas to visit the U.S. by the Obama administration...so afraid are even "progressive" politicians of the power of religious groups, the healthcare lobby and politicians of all stripe.
13
I have been a hospice nurse for several years and like other hospice nurses who have commented, I am thoroughly disgusted by the quote from the Harvard geriatrician. I wish entities who forced tube feeding and hydration on to people, whom have made it very clear that that is something they do not want, could be criminally prosecuted. How dare they?
These "do-gooders" only get away with violating these very vulnerable people because they, by way of their dementia, are unable to protect themselves.
From my years of experience and observation, I assure you that Mr. Medalie is a very wise man.
These "do-gooders" only get away with violating these very vulnerable people because they, by way of their dementia, are unable to protect themselves.
From my years of experience and observation, I assure you that Mr. Medalie is a very wise man.
21
Hi Jeri: It looks like you are interpreting "offering a sip of water or a spoonful of ice cream" as not meaning what it says, but as referring to forcibly intubating him against his wishes. I wouldn't have read it that way, and I would have thought that sips and spoonfuls were more about offering moments of comfort than significantly prolonging life.
(That said, I suppose there might be a point where "offering a spoonful of ice cream" might verge into "regularly force feeding whole bottles of nutritional drinks". Intending actual unwanted life-prolonging, not momentary comfort. That would be something to look out for.)
(That said, I suppose there might be a point where "offering a spoonful of ice cream" might verge into "regularly force feeding whole bottles of nutritional drinks". Intending actual unwanted life-prolonging, not momentary comfort. That would be something to look out for.)
1
John-What I have learned in caring for hundreds of dementia patients, is that almost all, in the later stages of their disease, begin to lose their appetite. Food and fluids will eventually be refused, even by those who have not specified a desire to "starve" themselves.
It is at this point that some families are approached about the option to place a feeding tube and begin artificial feeding.
While a sip of water and/or a spoonful of ice cream sound kind and
innocuous, they can cause great harm to people who no longer wish to take food by mouth. Sometimes a patient may take food orally only to please their caregivers despite the nausea it might cause. At the worst, it can cause a lethal pneumonia if the patient's swallowing ability has become too weakened to keep food out of the trachea.
This cessation of eating and drinkling towards the end of life is a purely natual occurance; it is the body's way of preserving what little energy it has for more urgent organ maintenance.
it is
It is at this point that some families are approached about the option to place a feeding tube and begin artificial feeding.
While a sip of water and/or a spoonful of ice cream sound kind and
innocuous, they can cause great harm to people who no longer wish to take food by mouth. Sometimes a patient may take food orally only to please their caregivers despite the nausea it might cause. At the worst, it can cause a lethal pneumonia if the patient's swallowing ability has become too weakened to keep food out of the trachea.
This cessation of eating and drinkling towards the end of life is a purely natual occurance; it is the body's way of preserving what little energy it has for more urgent organ maintenance.
it is
4
Jeri P
Thank you for this learned response.
Thank you for this learned response.
1
Insanity, pure unadulterated insanity. Just spend a few days in select specialty, or any long term care facility. It should and would scare the food right out of your mouth. Just refuse water and don't let anyone force feed you, IF YOU CAN!
5
For those who are interested, look up "Compassion & Choices".
If you want your wishes as expressed in an advance directive to be honored, stay out of health care facilities. Be sure that your advance directive states that if a health care facility is not following your directive, your power of attorney is authorized to take you out of the facility--against medical advice if necessary--to be cared for at home. Once there, caregivers can follow your wishes without interference from others.
6
Readers who have asked how to read Mr. Medalie's advance directive can find it, along with his commentary, on this website:
https://sites.google.com/site/jeromemedalie/
https://sites.google.com/site/jeromemedalie/
25
Thank you Ms. Span and Mr. Medalie for addressing this difficult topic. It is one that many contemplate, yet few know how to begin to face it in any practical way, for themselves and/or to facilitate the wishes of their loved ones. I, like "Sb" who commented earlier, had an experience with my mother similar to hers, namely that despite all that dementia had taken away, much was left to be appreciated and savored; as "Sb" described, such experiences were oftentimes even more pleasurable in their basic sensory nature: "Her [mother's] aesthetic senses have been heightened: she loves music, movies, and food. She loves color and texture."
As a witness to this with my mother, and feeling a closer, perhaps more primal, sensory connection with her, I experienced many moments of shared pleasure in each other, without the old baggage of past disappointments nor future expectations. While it was painful to watch her discomfort and anxiety during her early decline, most of all because she was aware of it and was determined to fight it, once she had progressed to a more advanced stage and no longer berated her failures to remember something or to be able to function at a "higher" level, she was freed from a lifetime of seeking external measures of achievement. Finally, she was able to stay in the moment and savor it. In any given moment, she was able to accept that who she was was just fine. It was a gift to be with her then and a final lesson that I will always cherish.
As a witness to this with my mother, and feeling a closer, perhaps more primal, sensory connection with her, I experienced many moments of shared pleasure in each other, without the old baggage of past disappointments nor future expectations. While it was painful to watch her discomfort and anxiety during her early decline, most of all because she was aware of it and was determined to fight it, once she had progressed to a more advanced stage and no longer berated her failures to remember something or to be able to function at a "higher" level, she was freed from a lifetime of seeking external measures of achievement. Finally, she was able to stay in the moment and savor it. In any given moment, she was able to accept that who she was was just fine. It was a gift to be with her then and a final lesson that I will always cherish.
3
Wonderful letter and document from Mr. Medalie. Thanks for sharing it.
My sincere thanks to Mr.Medalie for providing to those of us who are interested in protecting our right to a peaceful and not prolonged end of life access to his A. D.
My mother, 87, who resides in Needham Ma will find this document very useful as will I as for my future plans. This provides us with an understanding of how to begin our preparation for such matters before we lose the ability to make our own choices.
I believe, as we now live longer lives, each of us will be directly affected by dementia, either ourselves or a loved one.
I will print Mr. Medalie's A.D. and schedule an appointment with my attorney...
My mother, 87, who resides in Needham Ma will find this document very useful as will I as for my future plans. This provides us with an understanding of how to begin our preparation for such matters before we lose the ability to make our own choices.
I believe, as we now live longer lives, each of us will be directly affected by dementia, either ourselves or a loved one.
I will print Mr. Medalie's A.D. and schedule an appointment with my attorney...
Jerome's views are not only sensible but the only humane path to controlling one's life through one's death. The notion that individuals should not have a right to control their death is a vestige of a confused God driven world view that has long lost its validity and only serves as an excuse for the inhumanity our legal and medical systems. Little is accomplished by extending life when dementia seeps in, and no conception of life that relies on anything but human consciousness and the control of self. This is one of the last bastions superstition dehumanizing the life of modern humans - it is time we out this nonsense aside and let free and conscious individuals, and those that love them, chose a death with dignity, with compassion and with courage.
4
Do we really believe that starvation is a death with dignity?
3
Maybe in the end, dying isn't about the wishes of an individual who no longer exists as they once were, maybe it is about the promise of love and a shared humanity to an increasingly helpless being.
Are our lives ever truly our own?
Are our lives ever truly our own?
2
I could not disagree with you more.
In the end our dying is absolutely about our wishes if we have the foresight and luck to carry them out. Whose promise of love and shared humanity are we talking about here? The person who is dying, or the person who is administering to that increasingly helpless being?
If I were that increasingly helpless being, I would rail with all my strength against the notion that my life was truly not my own. Just because somebody has made a promise to love humanity, it does not mean it has to come at the expense of my rights to my life and my death.
"Are our lives ever truly our own?" Yes, absolutely! I belong to no man, no woman, no religion, no ideology, no state, no country and no one's notion of a shared humanity, but my own. I choose. You don't get to make that choice for me, not as an individual with supreme agency and especially not as an increaslingly helpless being!
In the end our dying is absolutely about our wishes if we have the foresight and luck to carry them out. Whose promise of love and shared humanity are we talking about here? The person who is dying, or the person who is administering to that increasingly helpless being?
If I were that increasingly helpless being, I would rail with all my strength against the notion that my life was truly not my own. Just because somebody has made a promise to love humanity, it does not mean it has to come at the expense of my rights to my life and my death.
"Are our lives ever truly our own?" Yes, absolutely! I belong to no man, no woman, no religion, no ideology, no state, no country and no one's notion of a shared humanity, but my own. I choose. You don't get to make that choice for me, not as an individual with supreme agency and especially not as an increaslingly helpless being!
11
Libertarianism and Alzheimers? If you have family, esp. children, and you end up in this situation, they will have to decide, presumably and hopefully trying to determine what you want, or would have wanted. My brother and I are dealing with my mother now, and where she would want to be, what she would want us to do. Lofty thoughts about her life being her own are not really helpful in this situation.
If you want to follow your ideals, you had better plan far enough in advance that you can go die in the forest by yourself, before you have lost your self-agency.
If you want to follow your ideals, you had better plan far enough in advance that you can go die in the forest by yourself, before you have lost your self-agency.
2
"We have allowed the means by which we live to outdistance the ends for which we live. So much of modern life can be summarized in that arresting dictum of the poet Thoreau: "Improved means to an unimproved end". This is the serious predicament, the deep and haunting problem confronting modern man"
Martin Luther KIng, Jr
from Nobel Lecture, December 11, 1964
Martin Luther KIng, Jr
from Nobel Lecture, December 11, 1964
9
Many states offer end of life care forms (in California it is the POLST form) that allow a patient much more control. Many Alzheimers patients die from infections. My end of life instructions include that if I have a diagnosis of dementia, I am to receive no antibiotics.
2
to all you 293 incredible writers
AARP has refused to be part of this discussion
It is my understanding they do not permit "death with dignity" information at their national meetings, nor articles on website.
I've written them that I'm discontinuing my membership for this reason.
I urge everyone to not renew their membership and let AARP know why.
They should be supporting this open conversation and help with changing the laws.
AARP has refused to be part of this discussion
It is my understanding they do not permit "death with dignity" information at their national meetings, nor articles on website.
I've written them that I'm discontinuing my membership for this reason.
I urge everyone to not renew their membership and let AARP know why.
They should be supporting this open conversation and help with changing the laws.
21
AARP is a disgusting despicable organization that is only dedicated to extending the lives of (or deaths) of their constituency. They don't give a duck about their grandchildren or anybody else. I wouldn't have anything to do with them.
7
Just as the Catholic Church acted in their self interest to ban birth control, which in the end would create "more Catholics", their policy here will also benefit them, by maximizing revenue to their hospitals. Just once I'd like to see there "moral position" go against their self interest.
5
Susan Mitchell of Harvard would be going against Mr. Medalie's wishes. Why is it so hard to do what the guy wants? It is his life and he ought to be able to decide how it will end. Others who would decide how a person's life will end should stop playing God. Concern yourself with your own demise.
9
I also agree with Mr. Medalie, wholeheartedly. But it will be rather difficult "to cover " every possibility. Additionally, even explicitly constructed directives have a way of being misinterpreted or ignored by others. If your designee is challenged for some unforeseen reason reason by an outside legal entity or even a (religious) health professional , the possibility of legal costs could be a complicating factor. " the best laid schemes..... often go astray".
The Hemlock Society might have some suggestions for circumventing potential obstacles.
The Hemlock Society might have some suggestions for circumventing potential obstacles.
3
Since I am planning to include VSED among my advanced directives, can you direct me to the "10 triggering conditions" mentioned in the article?
1
How dare Dr. Mitchell or anyone else, medical or religious, preempt a persons explicit desire for their end of life care. I find it outrageous and pray that my daughter will be able to carry out my written instructions.
1
If I am diagnosed with dementia, something I have watched up close through my mother's sad descent, and VSED cannot reliably be included in my advanced directives, then I will have no choice whatsoever but to suicide, and likely without much delay, knowing as I do how quickly the clear days are surpassed by days of confusion and an inability to think in an organized way.
3
I am 71 years old. Various health issues may hasten my demise before dementia limits my ability to make rational choices (should it develop at all). My wife (with some help from me), is caring for her father who now lives in our house. He is well into dementia, requires care, has serious cognitive issues and a quality of intellectual life that I would not tolerate for myself. He seems to have no idea that there could have been an option, now no longer available to him, to avoid the abyss that he is slipping into. I don't know what he would have done regarding advance directives when he was still entirely lucid. What I do know is that I would not want to be in the state he's in if the same happens to me. "I want to go out on my own terms" is the key quote in the article. Those terms can only be determined prior to the endgame. I'd go for the advance directive.
5
I agree completely with Mr. Medalie. But I'm not going to wait until I have forgotten that I even have an Advance Directive to end my life. The first time any medical professional says "dementia" to me, I'm done. Wrap up my affairs, say good-bye to my kids, and over and out. After watching a grandparent and my mother each take over a decade of diminishment, suffering and financial ruin to die with dementia, I will not do that to myself or my family. If VSED is the only way out, that's what it will be.
22
This is a most thought provoking article but the author is dead wrong on New York law when she says: "In several states, including New York . . . , legislatures have banned the withdrawal of oral nutrition or hydration at all, no matter what a directive or a proxy says."
The NY legislature has done no such thing, and proxies may authorize the withholding of artificial hydration and nutrition when specifically authorized in the proxy. That satisfies the requirements that the principal's wishes be known and proved by clear and convincing evidence. I sincerely hope that readers are not dissuaded from making valid advance directives by this misinformation.
The NY legislature has done no such thing, and proxies may authorize the withholding of artificial hydration and nutrition when specifically authorized in the proxy. That satisfies the requirements that the principal's wishes be known and proved by clear and convincing evidence. I sincerely hope that readers are not dissuaded from making valid advance directives by this misinformation.
5
For the poster who liked the idea of a "death doula"-- in fact programs of/for death doulas are in place and being put in place around the country. (A helper for the dying and their families.)
The NY Times ran a piece on this in May 20, 2006, authored by Jane Gross.
In fact, I was on the inside of the program reported by the Times, as a hospice worker took the special training described. And I can report, sadly, that the program as reported never came to fruition. I saw the frantic scramble on the inside to try to wow the Times reporter, to try to round up sufficient workers for the 24/7 doula coverage required for a single patient.
Wonderful idea...but not made for our profit-driven world.
That hospice, once non=profit and one of the best, was "bought" by a profit driven company and is now just another inadequate "mill" that routinely throws dying patients out when they don't die fast enough.
The NY Times ran a piece on this in May 20, 2006, authored by Jane Gross.
In fact, I was on the inside of the program reported by the Times, as a hospice worker took the special training described. And I can report, sadly, that the program as reported never came to fruition. I saw the frantic scramble on the inside to try to wow the Times reporter, to try to round up sufficient workers for the 24/7 doula coverage required for a single patient.
Wonderful idea...but not made for our profit-driven world.
That hospice, once non=profit and one of the best, was "bought" by a profit driven company and is now just another inadequate "mill" that routinely throws dying patients out when they don't die fast enough.
3
Today , Saturday, Jan 24, the Times ran a piece on private death doulas.
For the most part, it's expensive--but if the person is truly good, and it would be tough to find that out-- might be worth checking out before you need it.
For the most part, it's expensive--but if the person is truly good, and it would be tough to find that out-- might be worth checking out before you need it.
Because of physicians like Dr. Susan Mitchell, you better have a very detailed directive. And even then, if she is in charge, she will ignore your wishes. I am appalled that she is a geriatrician.
21
Could not agree more. "Doctors" like her are a scourge.
1
Where can one obtain a copy of the 10 triggering conditions that Mr. Medalie included on his list?
8
I would also appreciate a copy of the conditions. Perhaps The NYT could publish as a follow-up or otherwise make a list available if Mr. Medalie agrees to share them.
7
I have posted them in response to a similar question below, C.L.M. But you can also read his entire directive, plus several pages of commentary, on this simple website:
https://sites.google.com/site/jeromemedalie/
https://sites.google.com/site/jeromemedalie/
1
I read this article, grateful that the dementia "elephant is out of the closet" in society's discussions of the right to assisted suicide. My mother's last three years were painful to live through, for her, perhaps most, who told me when, at the age of 93, she moved into a cruise ship of a senior residence, and went from independent to assisted to 24-hour care: "Shoot yourself before you get this old." Humour is how we deal in the family with uncomfortable topics.
In the same residence were a couple of old friends. The husband has Alzeimer's and he has moved to the skilled nursing wing, where for six years his wife has been visiting him from her apartment on another floor. He no longer recognizes her, nor his children, who can hardly bear to visit (and I imagine their guilt, and anguish that they may find themselves like him one day). He would not have wished his family to live through this, had he had a choice. None of us would.
And this is in Canada, which provides financial assistance to the elderly in care homes, so I don't even mention the financial burdens.
In the same residence were a couple of old friends. The husband has Alzeimer's and he has moved to the skilled nursing wing, where for six years his wife has been visiting him from her apartment on another floor. He no longer recognizes her, nor his children, who can hardly bear to visit (and I imagine their guilt, and anguish that they may find themselves like him one day). He would not have wished his family to live through this, had he had a choice. None of us would.
And this is in Canada, which provides financial assistance to the elderly in care homes, so I don't even mention the financial burdens.
13
As a geriatric physician for most of my long career, I perceived that end-stage dementia was invariably accompanied by difficulties of mastication and swallowing - leading inevitably to aspiration pneumonia. Feeding tubes (which I did not order for such predicaments) prevent neither the weight loss of terminal illness nor the aspiration. I'm now 87 and have made 'advance directives' prohibiting artificial attempts to redress such problems of nearly all end-stage chronic diseases. If I succumb to dementia, I still like and hope for what Dr. Susan Mitchell suggests: a spoonful of something nice, gently given, even if I splutter a bit. Ian Lawson, MD
8
It is uncommon to be able to anticipate our very aged selves; far less the vicissitudes of multiple pathologies and our state of mind from living within the incapacities that ensue. Does this constitute an exquisite ethical conundrum, to attempt ‘advance directives’ for futures that may include dementia and, thereby, the incapacity to assent or dissent from what former selves and intact minds afore directed? But such applies to all advance directives. The issue is whether society and its laws will honor such imperfect instruments as ‘best available evidence’ of what we wished for ourselves until coma, delirium, or dementia occurred in our final years… or hours.
And should I succumb to dementia, I said already I’d still like and hope for what Dr. Susan Mitchell had feelingly suggested: a spoonful of something nice, gently given, even if my spluttering (a sure sign of aspiration) shortened my existence. But, my, did her kind notion not draw rebukes! Well, we can’t have it both ways. Says this octogenarian, may patients be preserved from insensitive doctors or nurses absent of (or forbidden to have) feelings for what they do towards susceptible persons under their care.
Ian Lawson, MD”
And should I succumb to dementia, I said already I’d still like and hope for what Dr. Susan Mitchell had feelingly suggested: a spoonful of something nice, gently given, even if my spluttering (a sure sign of aspiration) shortened my existence. But, my, did her kind notion not draw rebukes! Well, we can’t have it both ways. Says this octogenarian, may patients be preserved from insensitive doctors or nurses absent of (or forbidden to have) feelings for what they do towards susceptible persons under their care.
Ian Lawson, MD”
1
When will we become more civilized & honor the aged the respect to have their advance directives honored. In dmentia one would not be allowed to write legal cntracts, so why should they argue that the demented could legally choose life?
16
Yep.
5
I wish the Times would provide a link to his directive, or at least publish what the "10 questions" are that are mentioned here. I would find it very useful in planning my own directives, and i think a lot of elders and their families would also.
9
Oregon's assisted suicide law was so narrowly defined so it might gain passage that only about 30 people per year can use it; nobody with dementia qualifies since the patient must be of clear mind (i.e. directives don't count). I face a similar dilemma with a parent - who has made it clear through living wills and repeated statements about not being a burden. She lives by herself, fiercely wishing to do so, and we keep food available and eat with her - but if she decided to refuse food/water on her own, would I be a criminal for not getting her to a hospital against her wishes? Lawmakers need to provide clarifications sooner than later, and I don't like the solution several states have chosen to deny people their wishes. Excellent article - thank you. Hooray for Mr. Medalie.
12
You wouldn't be a criminal in my book. Nor would you be in a sane world.
7
The Oregon statute does set a number of requirements, cljuniper, but it's not that restrictive. From its inception in 1998 through 2013, 1,173 residents took advantage of it.
That comes out to an average of about 78 people a year that were able or knew about or wanted to take advantage of the assisted suicide law..which requires the "approval" of doctors and the need to be "terminally ill" (with specific diseases).
I say---no!
No good enough. Universal right to die with assistance if need be, upon demand. No doctors, no panels, no committees -- we get to decide.
I say---no!
No good enough. Universal right to die with assistance if need be, upon demand. No doctors, no panels, no committees -- we get to decide.
3
If a person no longer understands at all what is happening around them, they are usually scared and/or angry. And a large burden, unfortunately. These people should have the right to, while in good cognitive health, decide their fate.
Our options should include euthanasia through the use of drugs however.
Although I personally believe Alzheimer's to be the worst possible way to die, I would still not like to suffer through starvation or die of thirst.
Our options should include euthanasia through the use of drugs however.
Although I personally believe Alzheimer's to be the worst possible way to die, I would still not like to suffer through starvation or die of thirst.
7
Now 81, an ardent feminist & supporter of a woman's right to choose how to handle a pregnancy, I'm impatient with women who who do not see that Choice is not limited to abortion. The many responses here say it loud and clear, "We--women and men--want to make the important decisions about our bodies." I do wish more of us would connect the dots!
31
Advance directives, and most importantly, the accompanying conversations are essential to making one's end of life wishes known. As a nurse, ethicist, and family member who has witnesses the end stages of dementia, I would argue that it is not so simple. NO ONE says "I'd like to go to a nursing home or get dementia" but these are not options that are chosen or rejected, rather what happens given circumstances. If granny is truly end stage dementia, she will likely lose interest in eating and I for one, certainly support that. But on the way to truly end stage is highly-confused, doesn't recognize anyone granny who still "enjoys some ice cream and a little coffee". This is the NOW self rather than the past self, who would deny those simple pleasures. Death, like birth is not always on our timetable...it will come on its own time. I actually can support physician assisted suited for cognizant adults with terminal disease, but denying infantile granny a treat...not me.
5
It's important for family members of individuals with dementia to observe what steps are being taken to feed and nourish their loved ones if they are in a care facility. I have been in several memory care units and have seen people resisting being spoon fed. One woman in particular stands out. There are people whose sole job is to feed patients in the facility. They are not all kind and patient. This woman appeared very distressed at what was happening to her. I would not want that to happen to me. My (subjective) impression was that this woman was refusing food and wanted to let go of life but she was not being given that option. I made a complaint about what was happening because it seemed abusive to me.
17
It's very sad that a professional does not consider prolonging a life with "a sip of water and a spoonful of ice cream" as a form of torture, however brief. This gesture is more for the living (with a guilty conscience, perhaps) than for the dying.
17
This article couldn’t have been more timely (and gut wrenching) for me. My grandfather has severe dementia, and I just visited him in his hospice facility with my mom yesterday, to say my goodbyes. He has lost the ability to swallow on his own most of the time, but occasionally will get something down.
I know that they’re not necessarily talking about people like my grandfather. But his issue with swallowing only happened in the last week – his decline has brutally progressed for four years. Staring deeply into his empty eye (the other one was closed) I searched hard for any remaining sliver of my grandfather. But he’s completely gone. He won’t even smile.
My mom crumpled onto my shoulder as we left his care facility, and as she cried, she whispered, “I wish it would all be over.” She has been there every week, watching him disappear in a slow death of the soul. At this point, he can’t swallow but they keep trying to feed him. For what? -- To only draw out my mother’s pain that has already lasted four years? For what? – To keep him “alive” in this condition? For what? – To prevent us from moving past this excruciating grief process?
If my grandfather had included VSED in his advanced directive and it was not honored because of judgment laid down by someone who can’t care for him more than our family, and I were then to subsequently see him in this state – it would be one of the more cruel things I’ve experienced. It would be cruelty, all in the name of “life.”
I know that they’re not necessarily talking about people like my grandfather. But his issue with swallowing only happened in the last week – his decline has brutally progressed for four years. Staring deeply into his empty eye (the other one was closed) I searched hard for any remaining sliver of my grandfather. But he’s completely gone. He won’t even smile.
My mom crumpled onto my shoulder as we left his care facility, and as she cried, she whispered, “I wish it would all be over.” She has been there every week, watching him disappear in a slow death of the soul. At this point, he can’t swallow but they keep trying to feed him. For what? -- To only draw out my mother’s pain that has already lasted four years? For what? – To keep him “alive” in this condition? For what? – To prevent us from moving past this excruciating grief process?
If my grandfather had included VSED in his advanced directive and it was not honored because of judgment laid down by someone who can’t care for him more than our family, and I were then to subsequently see him in this state – it would be one of the more cruel things I’ve experienced. It would be cruelty, all in the name of “life.”
29
Sorry for your greif Alex. I hope things "improve" for you soon and maybe we can also become a saner and more compassonate nation soon as well.
6
I'm sorry Alex that you, your mother and your grandfather are suffering so. Having served as chaplain for two hospice agencies, I find it hard to understand how a hospice facility would continue to feed your grandfather given his swallowing difficulty. This is not in the spirit of hospice as I understand it and i gently suggest that your mother ask why the staff is doing this.
1
Having watched my beloved uncle move from some minor infrequent memory loss to slowly and periodically and consistently forgetting personal likes and dislikes and family and friends and history was vey confusing and unnerving. As childish behavior began to dominate with singing and dancing and playing. And adult day care did not and could not relieve my aunt from the emotional and physical burden of caring for another senior chronological citizen.
Putting my uncle into a full time professional care facility was very hard. But outside of his physical appearance my uncle was no more. The culmination was a restraint and forced feeding and hydration and mechanical life maintenance.
My uncle's contorted face and writhing body and animal-like gurgling sounds were way too much. As I spoke softly to him and rubbed his head he suddenly stopped and looked deeply and long into my eyes and smiled. I was startled and still wonder who was smiling at me and why. I did not and could not see him again. And he died shortly thereafter.
My uncle's wishes were clear and his end of life health choices were left with family who could not agree or cooperate on care. This disease is not as simple and clear as other physical ailments.
Complexities? Indeed! There is nothing like humanity and mortality.
Putting my uncle into a full time professional care facility was very hard. But outside of his physical appearance my uncle was no more. The culmination was a restraint and forced feeding and hydration and mechanical life maintenance.
My uncle's contorted face and writhing body and animal-like gurgling sounds were way too much. As I spoke softly to him and rubbed his head he suddenly stopped and looked deeply and long into my eyes and smiled. I was startled and still wonder who was smiling at me and why. I did not and could not see him again. And he died shortly thereafter.
My uncle's wishes were clear and his end of life health choices were left with family who could not agree or cooperate on care. This disease is not as simple and clear as other physical ailments.
Complexities? Indeed! There is nothing like humanity and mortality.
12
I think the whole thing would be a lot easier if we could just get assisted suicide in place everywhere so people could make these decisions on their own when they still have their wits about them and not have to worry about whether their proxy or an institution will carry out their wishes.
15
Dr Pat Clary and I published an article in Annals of Long Term Care about a patient we cared for who had expressed her desire not to receive food and fluids if she developed severe demential. Our suggestion for a statement to be included in your advance directive to deal with this situation is included in the article. http://www.annalsoflongtermcare.com/article/doing-right-thing
7
My father, who at 83 is experiencing the early signs of dementia, has always said that he did not want to live if he were "mentally diminished". And yet that is exactly where he is. The dementia is episodic (perhaps, 15 percent of his waking life) and he is aware that he has it. Problem is that it isn't so easy. He still has quality of life and adequate financial resources for his life, even though he is also totally blind. Ten years ago, he wouldn't have wanted to live like this, but today he isn't ready to "pull the plug". He has left that decision up to his adult children, rather than enshrining it in a legal document.
2
I am sorry for you. That is very unwise of your father.
2
This article is almost hilarious to me, in a Kurt Vonnegut kind of way. Black humor, I suppose. I respect each poster's struggle to come to terms with end of life decisions. My own have been made abundantly clear to my children: if I can't manage the pills by myself, they will help me as a last loving and compassionate act for their parent. Meantime, so much blather about sanctity of life from a political establishment that sends it young overseas to be blown up, that turns the other way when yet another needless gun death occurs, and who - prior to Obama's efforts - allowed 35,000 people a year to die because they were too poor to afford insurance. In short, I really couldn't care less what our noble government has to say about how I exit the world, and have no intention of following any of their laws about how I handle my own wild and precious life. It's mine, thanks very much. Go away!
25
The arrogance of some church, government or judge telling me how long I'm going to live and taking away my choice of when, where and how I will die is the most insulting thing I can immagine.
My life is wonderful. I want to live long and well. But, when life becomes unbearable to me it's up to me and me alone to decide when to throw in the towel. Fortunately, with the exception of one sister who's a religious fanatic my family feels the same way. We all honored our mother's wish to forgo food and water to hasten her death and I expect them to do the same for the rest. 'Course the last man standing may have trouble with those who want to impose their will on us so this an important issue to straighten out and one omre reason to get a Democrat in office in 2016. The next President will likely appoint a Suppreme Court Justice and we're going to be up the creek if the conservatives get to put another fool on the bench.
My life is wonderful. I want to live long and well. But, when life becomes unbearable to me it's up to me and me alone to decide when to throw in the towel. Fortunately, with the exception of one sister who's a religious fanatic my family feels the same way. We all honored our mother's wish to forgo food and water to hasten her death and I expect them to do the same for the rest. 'Course the last man standing may have trouble with those who want to impose their will on us so this an important issue to straighten out and one omre reason to get a Democrat in office in 2016. The next President will likely appoint a Suppreme Court Justice and we're going to be up the creek if the conservatives get to put another fool on the bench.
10
My mother suffers from dementia (vascular not alz). It probably began in her late 60's but was hastened by a heart attack and triple bypass operation in her early 70s. Now at 75 she is, As Mr. Medalie fears becoming, no longer the person she was. Once an award winning writer with a sharp mind and critical spirit, she can't hold much of a conversation, can't generally complete a thought, or even recall whether (never mind what) she had for lunch. That being said, she clearly relishes each day. Her aesthetic senses have been heightened: she loves music, movies, and food. She loves color and texture. She loves listening to others and spending time with her granddaughters. She is dependent on others to care for her but she is also far more emotionally open and present than she was prior to her dementia. She is a different person but she is a vibrant person full of life and joy, in some ways happier than I ever remember her being when she was "well." Will she remain this way forever? No. She has been this way for awhile now but in time she will decline and ultimately will die. In time her dementia will grow far more difficult for her and for those who love her. But at this point I would never wish that she had been denied these years of decline. I do not wish she had died 4 years ago when she had her heart attack. The past four years have been very difficult at times, but they have also been a gift.
86
That is your choice, don't force your beliefs on anyone else.
1
I am so glad to hear of your experience. So many people writing here seem to assume it's better to be dead than to have to endure the indignity of having your diaper changed or not knowing who is President. My beautiful and witty mother also had vascular dementia. She could no longer care for herself. My daughter and I dressed her, fed her, read her the paper, took her for walks in her wheelchair, and everything else. However, until the day of her death, my mother was, as Mary Oliver writes, "the bride to amazement". She thrilled to a sunset, loved to visit the flowers in her garden, enjoyed her dinner and a glass of wine. And she never wanted to leave the house without her lipstick. Did she know we were? Some of the time.. but it didn't matter. She knew we loved her. And the years of her dementia were some of the best years we had together. I cherish them. Don't write people off who have dementia.
This prejudice against dementia reminds me of the way children with Down's Syndrome were treated 60-70 years ago. There were taken from their families and put in "homes". Now these children are cherished by their families. Was my mother a burden? Yes, a terrible burden, and a marvelous blessing.
This prejudice against dementia reminds me of the way children with Down's Syndrome were treated 60-70 years ago. There were taken from their families and put in "homes". Now these children are cherished by their families. Was my mother a burden? Yes, a terrible burden, and a marvelous blessing.
2
Sb is telling about her experience with her mother, Harry.
How in the world is that forcing her beliefs on you, or anyone else?
How in the world is that forcing her beliefs on you, or anyone else?
1
Better to die actively by lethal Rx than passively by support removal. Existing death with dignity laws should be extended to provide for this, and passed universally.
9
Couldn't agree more. When you think of all the time and money spent on documents, lawyers, inter-family fights, family-institution fights, and on and on, it would all be so much easier.
4
Don't forget all tge money spent keeping someone alive against their will that could be used to save someone who wants to live.
4
Dr. Susan Mitchell would "not feel comfortable" with a future Jerome Medalie. That's too bad Dr. Mitchell, but it is not about you or your feelings.
20
The last paragraph of this article summarizes what is wrong with all the humans who surround a future Mr. Medalie. The key phrase -"I would not feel comfortable" says it all. It is the comfort about them. It is never about the patient.
21
Yep. When you were a child, you likely did not remember much, and your smells and sounds likely made others uncomfortable. Aren't you glad no one was so distressed as to put an end to you? (For your own good, of course.)
2
Please do not philosophize and make abstract case of Mr. Medalie. He is an intelligent, well educated man to decide for himself. He is not a child and neither am I. Peace.
1
That is ridiculous. Normal, healthy babies make sounds and smells that no one cares for, but parents know that when they choose to have children---and it only lasts for a while anyway--they grow up. Elderly people with dementia suffer, suffer, suffer and die. We should let them die quickly rather than drawing out their pain.
6
This is an excellent article -- addressing what will be a major medical ethical issues of the future, as more people die with dementia. My Advance Directive says that if my Representative recognizes that I don't have the capacity to understand that eating/drinking are prolonging my life, that is the time to stop feeding me food and liquids. While I empathize with the facility's concerns in the Margot Bentley case, it isn't even the 'swallowing', or even "gently offering" that is of issue here. We all know that opening one's mouth when touched is a totally instinctual reaction (necessary for newborns to feed) -- it is not, and cannot be considered, a 'choice' (i.e. of Margot to accept food and drink) or 'consent'. Isn't that the point, then? -- that when someone's life is reduced to reacting PURELY according to a newborn's instinctual response, they are no longer 'themselves'. Dementia is a terminal disease -- but as noted, there is no PLUG to pull. We need to come up with acceptable criteria for 'time to hasten death' for dementia patients -- who have chosen that in their Advance Directives, when mentally capable -- or it becomes for them “It’s too little, too late for me.”. We can't ignore the burden that dementia puts on the family and the health care system. Complex-care facilities are already under-staffed; and given changing demographics, are likely to be even so more in the future -- with our loved ones being more 'warehoused' than they are now.
10
While living with me, my mother was clearly demented with paranoid features. Luckily, a gerontologist was found who made house calls and prescribed a medication that allowed her to relax and be less fearful. Over time, she lost interest in eating. The doctor indicated this was a normal consequence of her age and condition, and gave two possible approaches: either put her in the hospital (to be assaulted-my words) with tube feedings and IV liquids or allow her to slowly decline at home. I can attest to her comfort over the 2 weeks it took her to pass away as evidenced by her calm expression and behavior. She accepted only sips of water and died peacefully while I was nearby. I certainly hope my children will allow the same humanitarian treatment for me should I also develop dementia.
36
To Dr. Susan Mitchell, quoted at the end of the story: for the love of God, it's not about you and what you want. It's about what the patient, the person, the human being wants.
21
My father, of sound mind but whose body was failing him, decided last April at the age of 93 to stop eating. Without food, but as much water as he wanted, he lived for 35 extraordinary days: friends visited and said good-bye, grandchildren came to hear stories, there was much laughter. Each morning he would say, "I'm still here." It was quiet and peaceful in his room, classical music playing, April fresh air (even in Manhattan), and he was happy in control of his life and in no pain. I was holding his hand while he died; he had no fear and left us all with an extraordinary positive legacy in facing death.
However, this could be hard to do if you were not in good mental health.
However, this could be hard to do if you were not in good mental health.
17
I thought I had already covered every base, but this article gives me a new one. I don't however expect to need it, since the article also refers, however briefly and buried near the end, to the real answer: pre-emptive suicide. Until our benighted society allows sensible medical remedies for the so-called life of dementia, that is the only realistic alternative. I will gladly give up a few months of putatively good life to avoid years of torture for myself and everyone around me. And thanks to the efforts of the NRA, it is trivial to gain possession of the means to take control.
10
My mother watched her grandmother suffer with Alzheimer's for years, and asked me repeatedly to promise to give her sleeping pills when she no longer recognizes me. She even wanted me to make a video of her making this request. She now has advanced Alzheimer's, is in a wheelchair, completely paralyzed, in diapers, and has no idea of what is going on around her. She hasn't recognized me in years. If she were taking a drug for her heart, or some other medication, we could stop using it and let her pass away. As it is, all we could do is stop feeding her but, as my sister and I have discussed, this may well be illegal.
I know that if her former self could see her current self, she would be livid with me. This is absolutely not what she wanted. It is also absolutely not what I want for myself. I hope that a do-not-feed directive will be legal if/when I am in her same state in 30 years.
I know that if her former self could see her current self, she would be livid with me. This is absolutely not what she wanted. It is also absolutely not what I want for myself. I hope that a do-not-feed directive will be legal if/when I am in her same state in 30 years.
10
Even better, let's hope that by the time you are in that state, it will be legal to give the suffering human the "sleeping pills" your mother requested. We must have a humane approach to assisted suicide for dementia sufferers. Naturally, this will be based on a directive put in place by the patient in advance.
9
Too much chatter on a simple issue. Once the final decision is made that's it. If you don't do it, don't bore the rest of us later with your death rants.
1
A person suffering from prolonged and severe physical discomfort with no prospect of it ending while she's alive should be given medication that ends the discomfort, even if that medication hastens death. What's so complicated about that? You can see below that we're not doing that now, which is shameful. No advance directive and certainly no decision by a family member is needed.
It never fails to amaze me that anyone thinks that dying of thirst or hunger, or in extreme pain or asphyxia, is somehow "dignified." What is the big benefit of "dignity?" If you don't want them to remember you as enfeebled or unconscious, then tell them in advance to stay away.
If you want to deny milk to babies whose cognition will never be superior to that of the most addled Alzheimer's victim, then come ahead and say so. Otherwise, your views are inconsistent.
It never fails to amaze me that anyone thinks that dying of thirst or hunger, or in extreme pain or asphyxia, is somehow "dignified." What is the big benefit of "dignity?" If you don't want them to remember you as enfeebled or unconscious, then tell them in advance to stay away.
If you want to deny milk to babies whose cognition will never be superior to that of the most addled Alzheimer's victim, then come ahead and say so. Otherwise, your views are inconsistent.
5
Refusing food and water at the end of life is very common is dying people. And the process is NOT PAINFUL, as it would be for healthier people. READ about this and realize that this is very different from denying food to infants or anyone else.
13
I have read about it. At least some of these patients are terribly thirsty and distressed for many hours or days. Extreme discomfort from underlying conditions such as cancer, vomiting and other forms of "dignity" can continue meanwhile. That's an inhumane and foolish way to kill them.
Administer the medication needed to alleviate their suffering, not with the intent to kill them, but with the intent to stop the suffering.
For unpromising infants, to just let them die was expressed in Britain as "put it in the back nursery."
Administer the medication needed to alleviate their suffering, not with the intent to kill them, but with the intent to stop the suffering.
For unpromising infants, to just let them die was expressed in Britain as "put it in the back nursery."
5
What an obscenity, unable to be assisted to a peaceful end of life this society of ours only allows death by starvation and thirst. Americans who fail to understand that it's not wrong to assist those at the end of life, to die with what little dignity they have left, are simply ignorant and cruel. You're going to die one day, all of you, and you better think about how you're going to die. Dying of thirst is about as bad a death as I can imagine.
8
As someone who assisted my mother when she decided to stop eating and drinking, I can assure you that the process was relatively easy, in additionally to being a deeply spiritual process. I completely endorse VSED--to the extent that after my mother died, I wrote a small handbook detailing step by step the process. I hope everyone who doesn't want to linger in a nursing home will consider VSED, and I absolutely believe that, yes, a health directive should be binding on a later, non-competent individual. Better, however, is to do it before the Alzheimer's has become too advanced, and you are still able to decide your health-care. In my mother's case, she perhaps didn't have Alzheimer's, but she was frail, almost blind, and with limited mobility. She was "done," and her doctor fully supported the decision.
…one of the best in her life!
…one of the best in her life!
11
The desire to control the 'end of life' = DEATH, is strong once the denial that it will ever happen to me is finally gone. Then it's on to facing a reality we all deny, we don't control nearly as much as we'd like. But that denial, our lack of control, is what keeps us going, of course. Good luck to all that. Write all you wish, inform as many people as you can, seal it in plastic and put it in the right place. As I said, the illusion of control is strong.
2
The basic human right to death on one's own terms is about to become the next huge civil rights movement in the United States, now that marriage equality is about to be finalized by the Supreme Court. The giant cohort of aging Boomers will demand this right, and various societal and economic factors will converge to make the movement successful. Data from the few states that already support choice-in-death for their residents will help overcome unfounded fears about the exercise of this right.
19
In right-to-death states, a tiny fraction of those issued suicide pills actually take them. It's one thing to have the right to die and another to exercise it. There's good reason to believe that your great civil rights movement will create a right that seldom will be exercised. From 20 years away, extended suffering seems irrational, but from close up, hanging in there often looks better. Part of that, I think, is the hope of most that, no matter what doctors may tell them, there is always a chance that things will get better.
2
michjas, the fact that even few of those who currently request the pills wind up taking them is the kind of data I am referencing. The right to make one's own decisions about one's death is all about keeping choice and control in the hands of the individual, not whether or not s/he ultimately decides to take the pills. Fearmongers make cataclysmic predictions of huge waves of people rushing to get the pills, and taking them without due reflection (or even taking them under duress from others), but there's no basis for that. That's why these facts are among those that will usher in the next civil rights movement.
7
Reader and michjas: A significant proportion of Oregon residents who legally obtained lethal medications do not use them, but those who do hardly constitute"a tiny fraction." Oregon has had longer experience with this approach than any other state, and of the 1173 residents who used the process to obtain drugs from 1998 through 2013, about two-thirds used the drugs to end their lives.
1
Bless you Mr. Medalie for a clear directive that I was looking for. I also don't want be when I am not me. With a family history of mental dementia, and exactly the same views as yours, I also don't want anyone, and especially not an "ethicist" to interfere with my wishes. Any ethicist worth her/his salt should know that I do have my own ethics.
10
I've seen dementia in my mother and I have some predictors of heading there myself. This VSED sounds crazy to me. There is one quote indicating that it can be relatively painless. Starvation and dehydration painless? I don't think so. To me, VSED sounds like one of the worst ways to go. Like the doctor, I want those suicide pills once dementia has sufficiently removed me from reality. But I've got a basic disagreement with him. Why would anyone take the pills with vodka when they could be taken with bourbon?
9
I prefer rum myself.
3
I'd choose an excellent bottle of champagne!
1
As another person commented, a "good" death for someone with dementia is often when they aspirate enough food to develop pneumonia and die quickly from that.
My brother and I did decide to withhold IV fluids and nutrition using a feeding tube when my father with dementia became unable to swallow. At this point his major organ systems were shutting down, the infections in his skin and lungs had become resistant to care and if he was "able to smile when given his favorite ice cream" it had been months ago.
Great article which raises important issues, but survivors of making decisions for those with dementia will--like me--feel resentful the author decided to end with Dr. Mitchell's "sip of water and a spoonful of ice cream" guilt trip.
My brother and I did decide to withhold IV fluids and nutrition using a feeding tube when my father with dementia became unable to swallow. At this point his major organ systems were shutting down, the infections in his skin and lungs had become resistant to care and if he was "able to smile when given his favorite ice cream" it had been months ago.
Great article which raises important issues, but survivors of making decisions for those with dementia will--like me--feel resentful the author decided to end with Dr. Mitchell's "sip of water and a spoonful of ice cream" guilt trip.
14
A loved one who is not eating is difficult for caregivers to accept. The medical treatments available to a person who is not eating are tube feeding—effectively force-feeding a person who cannot protest-- or aggressive palliative care in hospice. Hospice care always offers nutrition and hydration and patients are allowed to accept or refuse either.
An advance directive such as Mr. Medalie’s will depend on how his surrogate decision maker chooses to execute it. It will also depend on his caregivers. One who kindly offers a sip of water or a spoon of ice cream, like Dr. Mitchell would also need to kindly accept refusal.
My own Five Wishes advance directive has an addendum that includes chocolate ice cream on my lips, warm cloths on my face, sox on my feet, my glasses on my eyes, my hands held. I also state that if I cannot feed myself, I do not want to be fed by another human being. This will challenge a nursing home if I am in one, and some of my loved one’s values.
I am confident that my wishes will be honored because I have regular conversations with my surrogate decision maker and her backups to give them confidence in their responsibility to defend my wishes—not the medical system’s.
Advance healthcare planning needs to be a lifestyle practice. We work diligently to have a quality of life that reflects our values and beliefs. How would our lives be different if we included quality of death in our quality of life parameters?
An advance directive such as Mr. Medalie’s will depend on how his surrogate decision maker chooses to execute it. It will also depend on his caregivers. One who kindly offers a sip of water or a spoon of ice cream, like Dr. Mitchell would also need to kindly accept refusal.
My own Five Wishes advance directive has an addendum that includes chocolate ice cream on my lips, warm cloths on my face, sox on my feet, my glasses on my eyes, my hands held. I also state that if I cannot feed myself, I do not want to be fed by another human being. This will challenge a nursing home if I am in one, and some of my loved one’s values.
I am confident that my wishes will be honored because I have regular conversations with my surrogate decision maker and her backups to give them confidence in their responsibility to defend my wishes—not the medical system’s.
Advance healthcare planning needs to be a lifestyle practice. We work diligently to have a quality of life that reflects our values and beliefs. How would our lives be different if we included quality of death in our quality of life parameters?
8
OK, I just past 80 years of age and this is, in a way, most relevant article in the New York Times for me.
Mr. Medalie is a retired lawyer and it shows. I am a retired chemist and a lab supervisor and we are different.
I have no plans, however, to list the conditions that would trigger some kind of action - when the moment comes (either suddenly or gradually), something will be done by people around me. More importantly, however, I do not PLAN any action. I still have the book 'Final Exit' but I do not have the barbiturates to implement its major 'recommendation.'
I already had two feeding tubes (after radiation and a surgery) but I got rid of them. My problems are too numerous to be enumerated here but, possibly, not yet terminal.
Some ten years ago the New York Times published my 'letter to the editor' expressing similar feeling and the letter became quite popular in my Florida condominium where I lived at that time.
Billions of people over a long period of time developed all kind of strange theories what awaits us after our deaths, it is called religion and it is just a byproduct of our somewhat oversized brains.
Talk about it once or twice a year? Yes, there are purely practical aspects of 'departing' that can be somewhat optimized...
In 2015 there are some gentlemen over 90 still alive and active, more today than hundred years ago... Gentlemen over 100 and still sexually active exist only in a literary fiction...
Mr. Medalie is a retired lawyer and it shows. I am a retired chemist and a lab supervisor and we are different.
I have no plans, however, to list the conditions that would trigger some kind of action - when the moment comes (either suddenly or gradually), something will be done by people around me. More importantly, however, I do not PLAN any action. I still have the book 'Final Exit' but I do not have the barbiturates to implement its major 'recommendation.'
I already had two feeding tubes (after radiation and a surgery) but I got rid of them. My problems are too numerous to be enumerated here but, possibly, not yet terminal.
Some ten years ago the New York Times published my 'letter to the editor' expressing similar feeling and the letter became quite popular in my Florida condominium where I lived at that time.
Billions of people over a long period of time developed all kind of strange theories what awaits us after our deaths, it is called religion and it is just a byproduct of our somewhat oversized brains.
Talk about it once or twice a year? Yes, there are purely practical aspects of 'departing' that can be somewhat optimized...
In 2015 there are some gentlemen over 90 still alive and active, more today than hundred years ago... Gentlemen over 100 and still sexually active exist only in a literary fiction...
7
A thoughtful and in-depth discussion of a truly important issue in dementia care. The article exemplifies the wonderful work the the New Old Age blog does.
2
I am completely opposed to suicide, unassisted or assisted (with the possible exception of the likes of Hannibal, Mark Anthony and Cleopatra avoiding a Roman Triumph where they were the principal exhibit), having seen the devastating effects of this upon those left behind. Like many others, however, I also dread the withering of age.
What to do? I think the Vikings had something. They held that one could only enter Valhalla if one died bravely in battle. The days of pillage, rape and slaughter may be over (unless you belong to Da'ish). So perhaps we who grow old need to try to live a little more dangerously without at the same time putting others at inordinate risk, inconvenience or expense.
Here's three suggestions. Swim at least one mile every morning in open water whatever the weather. After a ten minute warm up jog, do sprint repetitions of 150 metres flat out up a slope times for ten sets of 10 intervals with a 20 to 30 second recovery. (If you don't feel light-headed at the end, increase the number of intervals per set, or the number of sets). Cycle across the USA coast to coast.
What to do? I think the Vikings had something. They held that one could only enter Valhalla if one died bravely in battle. The days of pillage, rape and slaughter may be over (unless you belong to Da'ish). So perhaps we who grow old need to try to live a little more dangerously without at the same time putting others at inordinate risk, inconvenience or expense.
Here's three suggestions. Swim at least one mile every morning in open water whatever the weather. After a ten minute warm up jog, do sprint repetitions of 150 metres flat out up a slope times for ten sets of 10 intervals with a 20 to 30 second recovery. (If you don't feel light-headed at the end, increase the number of intervals per set, or the number of sets). Cycle across the USA coast to coast.
2
As president and founder of the Dementia Society of America, I am pleased to see this public discourse over this most important matter: your ability to have your wishes respected at the end of life, with or without Dementia. Personally, I struggled with nursing home authorities who demanded that the staff spoon feed food into the mouth of my Brooklyn-born wife (with end-stage Dementia), my love of 32 years, even though she drooled much of it out and was often left with a trail of dried mush down her chin. In this particular facility, having her on hospice was a farce, and in my belief was a fraud upon the American public's use of Medicare hospice benefits. There, she could not actually die with comfort... the nursing home administrator refused to honor my/our wishes to actually experience hospice as it was intended. At the very end, I had to remove her from her residence of five years and get her into a hospice that respected her likelihood of aspiration, and the danger, and calamity, which she faced with every forced gulp. At least there, her death was dignified and respected, and I was able to hold her in my arms as the sun rose and streamed down upon her face. As a woman in the prime of her life, who once a donned a National Ski Patrol jacket every winter, helping those stranded and in need on the slopes, only then could we do the same for her... letting her mount her skis on fresh powder in order to take the next run into the warmth of a new day. Godspeed Ginny.
39
Bless you!
2
My mother slowly stopped eating and drinking for several months before her death at 93. She was in an assisted living residence 5 minutes from my house so I could see her often. She could barely hear, was loosing her sight, and had severe pain in her shoulder after 2 failed shoulder replacements. Pain relievers only caused very extreme constipation. The people who worked at the residence and I encouraged her to eat more, but it was no use. She'd eat of little of this or that and have a sip of water. She finally fell and broke her hip. A surgeon repaired it in the hospital, but she was in great pain. After surgery she could no longer swallow and the doctor said she would need a feeding tube. This was definitely against her written and verbal wishes. The only alternative was to keep her out of pain which included morphine. She died peacefully after 3 days in the hospital. The hospital personnel were very caring and helpful. I believe she was slowly letting herself die as she limited her intake of nourishment. She was not in pain and still enjoyed many things in her life before the end.
11
There is a freakish demographic unfolding before our eyes, that gets precious little attention. It was touched upon in Ezekiel Emanuel's recent and controversial essay on his own wishes for impending old age, when he noted that parents cast a "long shadow", even extremely elderly parents. I know many people in their 70's whose parents are still living, and require a fair amount of energy from their elderly "children", even if not direct physical care.
Recently on a local TV news segment celebrating viewers' birthdays, there was an entry for a 108 year old woman. It crossed my mind, she could theoretically be my 90 year old mother's mother.
It's grossly unnatural that we have so many elders, caring for extreme elders, many of whom require one-to-one round the clock care. Meanwhile, our nation's children get the bare minimum of societal nurturance.
I plan to employ VSED in my own plans, and have felt that way since before I knew there was a term for it. It's not a bad way to go, according to some who have chosen it while able to still communicate. Scott Nearing comes to mind.
I never want to become a tedious drag on the lives of my loved ones, which seems so common when we overstay the party of life.
Recently on a local TV news segment celebrating viewers' birthdays, there was an entry for a 108 year old woman. It crossed my mind, she could theoretically be my 90 year old mother's mother.
It's grossly unnatural that we have so many elders, caring for extreme elders, many of whom require one-to-one round the clock care. Meanwhile, our nation's children get the bare minimum of societal nurturance.
I plan to employ VSED in my own plans, and have felt that way since before I knew there was a term for it. It's not a bad way to go, according to some who have chosen it while able to still communicate. Scott Nearing comes to mind.
I never want to become a tedious drag on the lives of my loved ones, which seems so common when we overstay the party of life.
11
That's a very interesting point you mention...the fact that as people live longer, we will have more and more elderly 'children', trying to tend to their even older parents. How is this going to work, for people who may already be experiencing their own physical declines and ailments, to then try and care for their ailing parents? Our society as a whole really needs to address this unavoidable, growing problem.
6
It's not just a physical issue; it's also a mental issue having the role of child play such a large, sometimes endless, role in your life.
5
Starvation--even in the frail elderly--can be horrific and it's important not to romanticize it as an easy death.
Amongst what can happen before death:
* body breakdown of its own tissues and muscles
*diarrhea
*rashes
*edema
*heart failure
*fungi
*dry, cracked skin
*painful to move body
*kidney failure
This is not an easy death.
Why this when self-deliverance can be fast, painless and dignified?
Amongst what can happen before death:
* body breakdown of its own tissues and muscles
*diarrhea
*rashes
*edema
*heart failure
*fungi
*dry, cracked skin
*painful to move body
*kidney failure
This is not an easy death.
Why this when self-deliverance can be fast, painless and dignified?
13
Thank heaven we are finally having open discussions about this. Anyone who has watched the end stages which too often are (despite being "end" stages) agonizingly slow, knows that incessant efforts to keep people alive who by all odds would be grateful to let go, is a specious form of morality. After watching my grandfather, uncle, and father spend their last years in dementia, I wasted no time seeing a lawyer, sending out letters, drawing up a Medical Directive, and letting those who would be my health care representatives know what to do should they have to make a decision on my behalf. The later stages of dementia Alzheimer's are a living death: not living.
13
It not right to end life when there is still life.
The end stages are not always the end when it comes to illness. There are many people who on the brink of death have come back to have great recovery.
AIDS patients were once left for dead just 30 years years ago but no one would have this view about AIDS today. Dr.Norman Cousin and Dr. Bernie Segal have documented people at the brink of death who chose to live and did. It is time we changed our view of Dementia.
http://malalzheimer.blogspot.com/2014/10/help-person-with-alzheimers-dis...
The end stages are not always the end when it comes to illness. There are many people who on the brink of death have come back to have great recovery.
AIDS patients were once left for dead just 30 years years ago but no one would have this view about AIDS today. Dr.Norman Cousin and Dr. Bernie Segal have documented people at the brink of death who chose to live and did. It is time we changed our view of Dementia.
http://malalzheimer.blogspot.com/2014/10/help-person-with-alzheimers-dis...
2
Not right for whom?
6
Nobody is talking about suicide. I'm talking about letting a person die a natural death. That some are talking about ending it on their own is not my idea of a natural death.
Continuing to prolong life via breathing apparatus, feeding when they don't want to eat, and the list goes on, isn't a natural death.
When a person doesn't want to eat, it means their body doesn't need the food. It means their cells are shutting down.
The man in this article isn't talking about suicide. He's talking about artificially prolonging life which I don't believe even God wants.
Continuing to prolong life via breathing apparatus, feeding when they don't want to eat, and the list goes on, isn't a natural death.
When a person doesn't want to eat, it means their body doesn't need the food. It means their cells are shutting down.
The man in this article isn't talking about suicide. He's talking about artificially prolonging life which I don't believe even God wants.
4
The fact is, people who die of dementia-related causes, such as the inability to eat, should not be fed. The body is smarter than the doctors and has no tricky moral worries about starving itself. At this stage in dementia, the body is conserving its energy and it is also preparing to die. It knows.
For those who think a feeding tube is a compassionate idea, you do realize that a person can lie there, getting plump and smooth as the nutrients pump into their no longer consciously functioning body? Have you even seen a person on a feeding tube after what might be years?
There is no recovery now from dementia and it is impossible to ask a recovered sufferer what it was like: Did we do the right thing?
We are still romanticizing this awful disease and pretending that we can help somehow those in the last stages. We are looking to make ourselves feel better.
My mother starved to death, with the gentle and compassionate help of Hospice. The trigger for that decision came when she no longer knew the difference between a spoon and the food. To compare, one of my aunts lasted eight years in the fetal position, feeding tube firmly and legally in place. Brain long gone.
For those who think a feeding tube is a compassionate idea, you do realize that a person can lie there, getting plump and smooth as the nutrients pump into their no longer consciously functioning body? Have you even seen a person on a feeding tube after what might be years?
There is no recovery now from dementia and it is impossible to ask a recovered sufferer what it was like: Did we do the right thing?
We are still romanticizing this awful disease and pretending that we can help somehow those in the last stages. We are looking to make ourselves feel better.
My mother starved to death, with the gentle and compassionate help of Hospice. The trigger for that decision came when she no longer knew the difference between a spoon and the food. To compare, one of my aunts lasted eight years in the fetal position, feeding tube firmly and legally in place. Brain long gone.
14
As a doctor I find it helpful to focus on a few simple principles:
1. If longer life is NOT a patient-centered goal, then there is no justification for ANYTHING that lengthens life. If longer life is WORSE than dying, then any medical intervention that tries to lengthen life is harmful.
2. We should NEVER "starve" a fellow human being, but "starving" is depriving someone of food if they are hungry. Most people who are dying are NOT hungry. Administering food they do NOT want is "FORCE-FEEDING", and is assault, not "care".
3. BUT: A dying patient may be thirsty, and offering sips of water, or a moistened sponge/swab, IS often a crucial part of comfort care. The taste of their favorite ice cream, or anything that brings comfort or even a brief smile to their face, can be deeply-caring. Withholding these from a pt who would appreciate them, is inhumane. The few ounces of fluid that this may involve is biologically trivial, and does NOT prolong their dying.
And for the record, Dr. Susan Mitchell has probably done more than anyone to show why placing "feeding tubes" in patients with advanced dementia is almost always misguided. In her hands, the offer of a sip of water, or a spoonful of ice cream, is often the ideal embodiment of the caring we all will need and deserve when we are dying. See http://newoldage.blogs.nytimes.com/2011/05/09/feeding-tube-decisions-oft... and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872797/
Lachlan Forrow, MD
1. If longer life is NOT a patient-centered goal, then there is no justification for ANYTHING that lengthens life. If longer life is WORSE than dying, then any medical intervention that tries to lengthen life is harmful.
2. We should NEVER "starve" a fellow human being, but "starving" is depriving someone of food if they are hungry. Most people who are dying are NOT hungry. Administering food they do NOT want is "FORCE-FEEDING", and is assault, not "care".
3. BUT: A dying patient may be thirsty, and offering sips of water, or a moistened sponge/swab, IS often a crucial part of comfort care. The taste of their favorite ice cream, or anything that brings comfort or even a brief smile to their face, can be deeply-caring. Withholding these from a pt who would appreciate them, is inhumane. The few ounces of fluid that this may involve is biologically trivial, and does NOT prolong their dying.
And for the record, Dr. Susan Mitchell has probably done more than anyone to show why placing "feeding tubes" in patients with advanced dementia is almost always misguided. In her hands, the offer of a sip of water, or a spoonful of ice cream, is often the ideal embodiment of the caring we all will need and deserve when we are dying. See http://newoldage.blogs.nytimes.com/2011/05/09/feeding-tube-decisions-oft... and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872797/
Lachlan Forrow, MD
28
But, Dr. Forrow, you are not willing to do advocate patient choice that will bring the patient's life, by choice, to an end?
You laud your colleague/friend for speaking out publicly against feeding tubes in advanced dementia...but Dr. Forrow, we are WAY BEYOND that....we are demanding that every human being have the right to die quickly and painlessly and not when you say so, but when the patient says so.
And the caring, kind gestures of compassion that of us who have worked with dying patients have made..yes, of course it shows we care.
But to show society REALLY cares is not to offer spoonfuls of ice cream and pats on the head...it is to speak out in your professional capacity for death with dignity, physician assisted on demand or self-administered.
It is that kind of "caring we all need and deserve" when we decide we are ready to die.
You laud your colleague/friend for speaking out publicly against feeding tubes in advanced dementia...but Dr. Forrow, we are WAY BEYOND that....we are demanding that every human being have the right to die quickly and painlessly and not when you say so, but when the patient says so.
And the caring, kind gestures of compassion that of us who have worked with dying patients have made..yes, of course it shows we care.
But to show society REALLY cares is not to offer spoonfuls of ice cream and pats on the head...it is to speak out in your professional capacity for death with dignity, physician assisted on demand or self-administered.
It is that kind of "caring we all need and deserve" when we decide we are ready to die.
17
I agree. Susan Mitchell is an outstanding leading researcher in this field.
Note her exact words: "offering," "sip," and "spoonful."
"Offer" means she would NOT force-feed the patient if the patient refused or seemed disinterested.
A "sip" and a "spoonful" would likely NOT prolong her dying.
Note her exact words: "offering," "sip," and "spoonful."
"Offer" means she would NOT force-feed the patient if the patient refused or seemed disinterested.
A "sip" and a "spoonful" would likely NOT prolong her dying.
2
Dr. Terman,
Susan Mitchell, her life's work keeping feeding tubes out of the noses of dementia patients is not what the millions of elderly or near-elderly in this country care about.
We demand to exercise our basic human right to a quick, painless death -- with help if necessary.
We are not interested in "sips and pats on the head or tubes."
Cannot you understand that we need no more research on feeding tubes?
This is indeed the overdue commencement of a loud public debate and hopefully endgame of the right to die in a manner of one's chosing...available to all and without your involvement.
And yes, some of you wlll be out of jobs and frankly, out of the power you have exercised over us, the suffering, for so very long.
Susan Mitchell, her life's work keeping feeding tubes out of the noses of dementia patients is not what the millions of elderly or near-elderly in this country care about.
We demand to exercise our basic human right to a quick, painless death -- with help if necessary.
We are not interested in "sips and pats on the head or tubes."
Cannot you understand that we need no more research on feeding tubes?
This is indeed the overdue commencement of a loud public debate and hopefully endgame of the right to die in a manner of one's chosing...available to all and without your involvement.
And yes, some of you wlll be out of jobs and frankly, out of the power you have exercised over us, the suffering, for so very long.
1
The real reason to put things in writing is not that your family will not know your wishes but that they will be too tired to think critically about them.
Families are not generally trying to get their elders to live by any means necessary but trapped in a cycle of behaviors that starts years earlier at the onset of illness.
One's family member gets sick and one provides care until recovery. The sick periods get longer and the recoveries get shorter but a routine has begun. The sleep deprivation and vending machine "nutrition" that comes with hospitalized relatives limits critical meaningful thought. Our family member has bounced back so many times before, won't they bounce back again?
Written wishes help families on automatic pilot. They also need to be educated about the difference between "end of life" and actively dying. Families need brave medical providers to say when a patient is at the end of life. Many doctors and nurses still send people for painful tests even though they would not be strong enough for treatment.
Lastly, make sure your medical orders match your legal documents. If the doctor does not enter the correct order, it does not matter what you have written on paper.
Families are not generally trying to get their elders to live by any means necessary but trapped in a cycle of behaviors that starts years earlier at the onset of illness.
One's family member gets sick and one provides care until recovery. The sick periods get longer and the recoveries get shorter but a routine has begun. The sleep deprivation and vending machine "nutrition" that comes with hospitalized relatives limits critical meaningful thought. Our family member has bounced back so many times before, won't they bounce back again?
Written wishes help families on automatic pilot. They also need to be educated about the difference between "end of life" and actively dying. Families need brave medical providers to say when a patient is at the end of life. Many doctors and nurses still send people for painful tests even though they would not be strong enough for treatment.
Lastly, make sure your medical orders match your legal documents. If the doctor does not enter the correct order, it does not matter what you have written on paper.
12
This post makes a few very important points that I don't think I have seen mentioned yet. Thanks for posting, Thomas Reynolds.
Yes, there's definitely a cycle that develops, and you do expect the elder to "bounce back", or at least go on living with "a new normal". You get worn down by the multiple up-endings that occur from hospital stays, insurance disputes, caregiver arrangements. You feel guilty for even thinking, "Could this be it?" You hate yourself for even thinking that, because you're afraid you sound like maybe you want it to be, because this is all so awful....
And you are so right that there is a difference between "end of life" and "actively dying." (I never heard the latter term until my mother had Stage 4 cancer. I was told that she wasn't "actively dying" yet. Then she had a stroke...and I was told that she WAS "actively dying" because she couldn't eat or drink. And even when she was "actively dying" I was told she could hold on for three weeks (three weeks!!) because dying bodies don't need much water to survive, they just use up what's in their cells....) So I guess I'm just saying, being terminal can be a much longer process than most people imagine.
And lastly, yes, the doctor's orders will trump everything. When I questioned the SNF staff as to why the directive was not being followed, of course they quoted the doctor. Once I talked to him, no more issues.
Yes, there's definitely a cycle that develops, and you do expect the elder to "bounce back", or at least go on living with "a new normal". You get worn down by the multiple up-endings that occur from hospital stays, insurance disputes, caregiver arrangements. You feel guilty for even thinking, "Could this be it?" You hate yourself for even thinking that, because you're afraid you sound like maybe you want it to be, because this is all so awful....
And you are so right that there is a difference between "end of life" and "actively dying." (I never heard the latter term until my mother had Stage 4 cancer. I was told that she wasn't "actively dying" yet. Then she had a stroke...and I was told that she WAS "actively dying" because she couldn't eat or drink. And even when she was "actively dying" I was told she could hold on for three weeks (three weeks!!) because dying bodies don't need much water to survive, they just use up what's in their cells....) So I guess I'm just saying, being terminal can be a much longer process than most people imagine.
And lastly, yes, the doctor's orders will trump everything. When I questioned the SNF staff as to why the directive was not being followed, of course they quoted the doctor. Once I talked to him, no more issues.
6
If "religious organizations" and "disability groups" object to unproductive and prolonged medical care they should be willing to pay for it.
12
I was with my mother when she finally succumbed to Alzheimers. She lost the desire to eat and through a process Mr Medalie desires, she passed in two days. It is difficult to determine if she remembered who I was or who her husband and grandchildren were for over six years. I do know she was not the person I had as a mother. Her quality of life in her last two years amounted to 24 hour care in an Alzheimer's center that my father was fortunate to afford. Before that, my father cared for here while working, coming home to feed her lunch and then going back to work. It was not until she became violent and a potential harm to herself and my father that reluctantly my father found a suitable place for her.
I would be very interested to see Mr. Medalies' advanced directive and to incorporate his ideas in mine.
I would be very interested to see Mr. Medalies' advanced directive and to incorporate his ideas in mine.
12
Death is a natural process.
Medical intervention has taken that natural process and extended it at least twenty years.
And that brings us to the very elderly among us, many of whom we never see because they either can't or don't venture out for fear they will be mowed down by others who are living in our fast paced society. One need only tour a SNF (skilled nursing facility, i.e., nursing home) to see the majority there are over the age of 85 and in the now fastest growing demographic, over the age of 90.
Those who wish to keep their elderly loved ones alive by any means possible when their brains have contracted this horrible disease, are selfish because it is they who are hanging on while their loved is locked inside themselves. They are no longer able to toilet, not able to walk, not able to eat. They are being denied their right to die naturally.
Medical intervention has taken that natural process and extended it at least twenty years.
And that brings us to the very elderly among us, many of whom we never see because they either can't or don't venture out for fear they will be mowed down by others who are living in our fast paced society. One need only tour a SNF (skilled nursing facility, i.e., nursing home) to see the majority there are over the age of 85 and in the now fastest growing demographic, over the age of 90.
Those who wish to keep their elderly loved ones alive by any means possible when their brains have contracted this horrible disease, are selfish because it is they who are hanging on while their loved is locked inside themselves. They are no longer able to toilet, not able to walk, not able to eat. They are being denied their right to die naturally.
15
My mom died at 94 of dementia. She had it for about 8-9 years. She definitely lived 4 years too long and she would have been the first to agree. I wish I had known about this--although the assisted living place likely would not have complied. For the last few years, the caregiver used a blender to mash up the food the place supplied, then shot it into her mouth with a syringe. It was freaking awful. I tried to get her off of it but no one took me seriously. I have an AD but I gotta do this thing in a tighter fashion, I'm probably next. ;>)
21
To me the crux of this incredibly complex issue is this, as Paula Span writes: "Can one’s current, competent self make decisions on behalf of one’s future demented self — who may find modest pleasure, years later, in a life once deemed intolerable?" As someone who has covered aging issues for years, I have had many people tell me they'd rather be dead than demented, including my mother-in-law, now 96. But after several strokes, she now has vascular dementia. She seems contented, is cared for by her son, and has a good appetite. Pulling the plug? Not possible, no matter what her earlier thoughts were. Thank you for raising this important issue.
Beth Baker, author, With a Little Help from our Friends--Creating Community as We Grow Older
Beth Baker, author, With a Little Help from our Friends--Creating Community as We Grow Older
3
I was with my mom as she died of Alzheimers. I made sure she never spent a day in a nursing home. To sit alone with her the night of her death is still a very painful memory. It was not peaceful despite the morphine I administered.
If diagnosed with the same disease I will take steps immediately to end my life.
This is my right and my educated decision. (My father and my grandmother also had AD.)
I know my choice would not be for everyone. Yet this is true of most of the important aspects of our life. We all should be able to face our ending in our way. Especially when that ending involves A.D.
If diagnosed with the same disease I will take steps immediately to end my life.
This is my right and my educated decision. (My father and my grandmother also had AD.)
I know my choice would not be for everyone. Yet this is true of most of the important aspects of our life. We all should be able to face our ending in our way. Especially when that ending involves A.D.
14
My wife of 60 years suffered of Alzheimer's for her last 7 years. Toward the end I told my three boys that I expected that she would develop aspiration pneumonia from the spoon feeding that she was being given. That is exactly what happened. Two days after she developed pneumonia she died peacefully while I sat with her. I still miss her but seems like a good way to go.
16
I will soon be drawing up a new Advance Directive and am grappling with whether or not to ask that food and water be withheld. Really, it is unbelievable that we have to make such a ghastly choice or that our loved ones have to witness such a death, when an easy, gentle death is possible with prescribed drugs. I fervently hope that by the time I have terminal cancer or advancing dementia, a gentle death will be available to me. Aid in dying is humane in such circumstances, and shows respect for the person who has requested it for himself or herself.
266
The fact is -- as the article states -- dying from the withholding of food and water is not a ghastly choice; it IS a gentle death. And sedation is generally given to patients who stop eating and drinking to ease any discomfort (not pain) that they might experience until they lose consciousness.
3
Right? My dogs get better treatment than I can assure for myself. Sigh.
4
If you live in California, hop on a bus and go to Mexico where you can, relatively easily, get what is necessary for a swift and painless death. You will one of many.
1
As caregiver for my husband, 12 years into dementia, I saw that it was impossible to make so fragile a body comfortable. The joints so painfully contracted, the skin so eroded (despite care), infections, and the misery he could still articulate. In the last 4 months I spent $$$ on gel cushions, skin creams. Finally, unable to swallow, he died. But he could, and should have been spared those months of agony.
23
My husband (49) and I (59) have discussed this many, many times. We will now revise our advance directives to specify that we want VSED even if we are suffering from dementia. Our basic plan, however, is to avoid the medical establishment altogether so that the issue does not arise. Do not call 911. Do not go to the hospital. Stockpile pills. I do not want to suffer. I do not want my husband to suffer. Our resolution has never wavered for a second, and if it does, I'll just visit my mother in her "independent" living facility.
16
I have seen my father and father-in-law suffer the indignities of dementia and now have to deal with my mother-in-law in the beginning stages. As the article points out, one cannot rely on others to do the right thing, no matter what one's directive states. I have decided to do the job myself once the trigger is reached. My trigger? Once it takes me half an hour or more to complete the NYT's Monday crossword puzzle, I need to make my exit.
6
My mother had an advance directive -- DNR, DNI, and no feeding or hydration. She later developed vascular dementia. I didn't give her directive a thought at that point -- she moved to an ALF and was treated her diabetes, and that was that.
Here's where it got complicated: she fell at her ALF, and a CT scan performed to check for injuries showed that she had metastatic pancreatic cancer -- lesions on her liver, kidney, spleen, etc. Amazingly, she wasn't in any pain. But she was weak and such a fall risk at that point that she went into a nursing facility on "comfort care". I figured she might have another six months, or a year, but she would be comfortable and not breaking any bones.
Only two weeks after her diagnosis, she suffered a stroke and stopped eating or drinking. Even though the staff had her directive on file, I came into her room one Saturday night to see an aide struggling to spoon frozen orange juice into my mother's grimacing face, with it all spilling out from her mouth onto the bedcovers. I said, "What is going on?" That was a horrible sight I can never forget. They were still treating her diabetes, and since her blood sugar was too low, she needed to be force fed this OJ or she would lapse into a coma.
I said, "So... we want to prevent her going to a coma so she can live to die of Stage 4 cancer?" They stopped, but looked at me like I was nuts. And cruel.
I don't think there's a clear line between comfort care and medical care.
Here's where it got complicated: she fell at her ALF, and a CT scan performed to check for injuries showed that she had metastatic pancreatic cancer -- lesions on her liver, kidney, spleen, etc. Amazingly, she wasn't in any pain. But she was weak and such a fall risk at that point that she went into a nursing facility on "comfort care". I figured she might have another six months, or a year, but she would be comfortable and not breaking any bones.
Only two weeks after her diagnosis, she suffered a stroke and stopped eating or drinking. Even though the staff had her directive on file, I came into her room one Saturday night to see an aide struggling to spoon frozen orange juice into my mother's grimacing face, with it all spilling out from her mouth onto the bedcovers. I said, "What is going on?" That was a horrible sight I can never forget. They were still treating her diabetes, and since her blood sugar was too low, she needed to be force fed this OJ or she would lapse into a coma.
I said, "So... we want to prevent her going to a coma so she can live to die of Stage 4 cancer?" They stopped, but looked at me like I was nuts. And cruel.
I don't think there's a clear line between comfort care and medical care.
60
My mother was all but comatose 14 months ago, and the SNF was trying to spoonfeed her pureed beige food when she was awake. When she began to be alert, I brought her a bacon-and-egg breakfast taco. She ate the whole thing. I was chastised because she could have choked on it. I stated clearly that if this woman, who loves food, were to choke on a piece of bacon, that would probably be a much happier way for her to go, rather than to waste away on pureed beige stuff. I had to sign a waiver. At least there was a waiver to sign and some understanding.
8
I suppose everybody is different, but in my mother's case, she was identified as a dementia ward resident from the first - but after 6 years, she was still reading her NYTIMES every morning. My visits increased from 3 or 4 days to 6 days per week- during post luncheon "sundowner" time, and we (she had a dear friend who was in the same state and also read the NYTIMES daily) would have "tea" (making sure she ate one extra time)! FWIW - they both voted by absentee ballot in the Presidential election for Al Gore. The TIMES made the difference for her!
5
One of my in-laws died of dementia, experiencing greatly diminished mental capacity years prior to her death. Despite "not being herself", she still experienced thirst and hunger, as most living beings do in some form. Had we not continued to ensure the provision of food and drink to her at that point, she would have felt their absence quite keenly, even though she no longer recognized or could communicate with us. How do I know this? Because at one point during this period of time, she grabbed a pitcher of water from the center of a table and drank directly from it, quickly finishing it. Even though she didn't remember how to pour herself a glass or to indicate to any of us that she was thirsty, she knew that she needed water. The reason that she needed so much was that, unbeknownst to us, she had become diabetic.
Withholding food and water from a disabled person who could otherwise consume them is killing that person just as much as withholding food and water from a baby or a pet would be. With regard to those who have specified that they do not wish to live past the point at which they function mentally, this is perhaps permissible, but a lethal dose of morphine would be much kinder.
My own concern about lingering would go beyond feeling hunger or thirst, to preserving family financial resources for the living.
Withholding food and water from a disabled person who could otherwise consume them is killing that person just as much as withholding food and water from a baby or a pet would be. With regard to those who have specified that they do not wish to live past the point at which they function mentally, this is perhaps permissible, but a lethal dose of morphine would be much kinder.
My own concern about lingering would go beyond feeling hunger or thirst, to preserving family financial resources for the living.
6
We may not be able to chose the way we are born but a lifetime of individual personal experience should be the preponderant weighing factor in making the decision of how we are to die. Why is the state being so obdurate in having to intervene in such an individual personal decision?
144
The "obdurate state" you refer to is, in reality, largely controlled by politicians and hugely influenced by the religious-medical complex.
The politicians understand that by and large seniors, while they vote, are tragically not activists and demonstrators and noise-makers. They only respond to huge, organized and determined pressure and lobbying -- like the AIDS activists.
Organizations like the AARP, the most useless, phony, profit driven (yes, even though they "enjoy" non profit status) won't touch advocacy for Dignified Dying..and we are not talking hospice here, we're talking death by choice with assistance without "committees" of doctors.
And religious organizations...they thrive on suffering, the elderly. They run centers and group homes and huge networks of social service centers. They won't even allow discussions of these subjects...at least not real ones.
The politicians understand that by and large seniors, while they vote, are tragically not activists and demonstrators and noise-makers. They only respond to huge, organized and determined pressure and lobbying -- like the AIDS activists.
Organizations like the AARP, the most useless, phony, profit driven (yes, even though they "enjoy" non profit status) won't touch advocacy for Dignified Dying..and we are not talking hospice here, we're talking death by choice with assistance without "committees" of doctors.
And religious organizations...they thrive on suffering, the elderly. They run centers and group homes and huge networks of social service centers. They won't even allow discussions of these subjects...at least not real ones.
8
Two thumbs up. But I think we also need to add the lawyers to the politico-religio-medico complex.
Very interesting and well said. One of the problems with making a personal choice about end of life lies with the comments made by John Brehany in the article.....
What does the law really state? ''At the point when the patient is no longer adequately profitable to the institution that has appropriated their existential rights and options, that institution shall not be held liable for determining to vacate the bed that they occupy for a more remunerative profit center.''
At the core of the "well-meaning brutality'' is that cosmic respository of sado-masochistic death worship disguised as 'pro-life' . . . the Catholic Church: “We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,” said John Brehany, a former executive director of the Catholic Medical Association. He predicted that Catholic-affiliated hospitals and nursing homes wouldn’t honor such directives.
Of course our lives have meaning when we're physically wretched, being medically tortured for institutional profit, and in pain without cognizance or the means of interaction with those around us. It means that when we cannot think - venerable institutions like the Catholic Medical Association are poised to take advantage of that fact, and while we can still think, they arrogantly believe they have the right to overrule our sovereignty over out own bodies and existence.
All this comes as no surprise as the Catholic Church has been deforming the lives of women under its power legislatively for years by its war on birth control by any means other than abstinence.
At the core of the "well-meaning brutality'' is that cosmic respository of sado-masochistic death worship disguised as 'pro-life' . . . the Catholic Church: “We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,” said John Brehany, a former executive director of the Catholic Medical Association. He predicted that Catholic-affiliated hospitals and nursing homes wouldn’t honor such directives.
Of course our lives have meaning when we're physically wretched, being medically tortured for institutional profit, and in pain without cognizance or the means of interaction with those around us. It means that when we cannot think - venerable institutions like the Catholic Medical Association are poised to take advantage of that fact, and while we can still think, they arrogantly believe they have the right to overrule our sovereignty over out own bodies and existence.
All this comes as no surprise as the Catholic Church has been deforming the lives of women under its power legislatively for years by its war on birth control by any means other than abstinence.
20
Alzheimer's usually warns the sufferer, I think. If a person truly wants to avoid burdening others by suffering through prolonged dementia, that person should take the burden of his death on his own shoulders by suicide before the dementia overpowers him. If he fails to do this, he cannot expect others to withhold the means of life from him. It places too great a burden on his caretakers.
7
Unfortunately, Alzheimer's affects self- observation early in the course, so that some objective measure, such as the Monday NYT crossword in under 30 min is needed to make that strategy effective.
4
And better access to pre-emptive suicide should be available. Even in my mid-70s I may not get up the gumption to jump off a building or a highway bridge, and I am fearful of bungling suicide with a firearm, but I would like to have the big pill ready for the occasion just in case, should it arrive. I only hope my dementia doesn't creep up on me the way it did on my father, my mother, and my mother-in-law. After my mother finally died completely oblivious to the world around her my dad lay in agony for a couple years semi-cognizant that he wasn't all there either, physically and mentally, and that there wasn't any way to check out.
5
The real issue here is not about one's right to decide to end one's own life. A demented person is incapable of accomplishing that result. Help is required from another person to execute that plan. Therein lies the rub. The issue is clearly about assisted suicide.
When a person "decides" ahead of time that there should be no further food or water when he or she becomes severely demented, that person is requiring someone else to assist in a suicide. Intervening to stop supplying food and water which will surely cause death is factually and morally distinguishable from deciding not to have further medical interventions like intubation. Most doctors, committed to saving lives, who are also concerned about the effect deaths of their patients may have on their careers, are reluctant to assist suicide. Family members may also be conflicted emotionally, morally, and financially.
It is all well and good that the gentleman in the article has a clear vision of when and how he wants to die, but he is putting others in the position of committing an act for which THEY may suffer legal or moral consequences. Family members may want to assist suicide out of compassion and commitment to their loved one's wishes, but there should be clear legal authorization before anyone engages in this act.
When a person "decides" ahead of time that there should be no further food or water when he or she becomes severely demented, that person is requiring someone else to assist in a suicide. Intervening to stop supplying food and water which will surely cause death is factually and morally distinguishable from deciding not to have further medical interventions like intubation. Most doctors, committed to saving lives, who are also concerned about the effect deaths of their patients may have on their careers, are reluctant to assist suicide. Family members may also be conflicted emotionally, morally, and financially.
It is all well and good that the gentleman in the article has a clear vision of when and how he wants to die, but he is putting others in the position of committing an act for which THEY may suffer legal or moral consequences. Family members may want to assist suicide out of compassion and commitment to their loved one's wishes, but there should be clear legal authorization before anyone engages in this act.
4
"Clear legal authorization?"
There is no such thing in our society because we have chosen suffering and profit and religious blah=blah over peaceful, quick, dignified death.
The right to die...and it is a right...is not the doctor's right, or the family's right, or the lawyer's right.
It is -- or should be-- the right of the individual whose life it is.
One helpful hint if you/one do not want to self-administer a peaceful death is to note in your advance directive something along the lines of:
"I fully acknowledge that I understand that the administration of large doses of morphine may hasten death. I am stating here, unequivocally, that I wish to receive unlimited/large amounts of morphine and that I understand that this may hasten my own death."
There is no such thing in our society because we have chosen suffering and profit and religious blah=blah over peaceful, quick, dignified death.
The right to die...and it is a right...is not the doctor's right, or the family's right, or the lawyer's right.
It is -- or should be-- the right of the individual whose life it is.
One helpful hint if you/one do not want to self-administer a peaceful death is to note in your advance directive something along the lines of:
"I fully acknowledge that I understand that the administration of large doses of morphine may hasten death. I am stating here, unequivocally, that I wish to receive unlimited/large amounts of morphine and that I understand that this may hasten my own death."
4
Apples to oranges. Are you trying to say that if a loved one's family does not agree to force-feeding or tubes for their sick family member, that they are by default helping that person 'commit suicide'? There's a huge difference between suicide and letting nature take its course. Life should not be prolonged by any or all means necessary. By that matter we should all be cryogenically preserved.
3
My father passed away just weeks ago - he was almost 90. He was suffering from mid-stage dementia and was ultimately found to have cancer throughout his body. He had asked for no intervention but I am confident that was referring to treatment for his cancer. However the hospital went a step further and interpreted his request to mean there should be no intravenous hydration or nutrition. He was in obvious discomfort and it seemed impossible that the meagre amount of liquids they were able to give him orally could sustain him.
I can't help but feel that had my father been fed or at least hydrated intravenously, he would have been more comfortable and could have shared some quiet bedside thoughts with us all - a gift he was unable to give. Instead he lurched painfully to a halt like an old car starved of gas and oil. It was established that morphine was to take care of the pain caused by the advancing cancer so giving him the basic elements required for survival would not necessarily have led to a painful death. I would far rather know that my father died of cancer than live with the possibility that he died of thirst.
I can't help but feel that had my father been fed or at least hydrated intravenously, he would have been more comfortable and could have shared some quiet bedside thoughts with us all - a gift he was unable to give. Instead he lurched painfully to a halt like an old car starved of gas and oil. It was established that morphine was to take care of the pain caused by the advancing cancer so giving him the basic elements required for survival would not necessarily have led to a painful death. I would far rather know that my father died of cancer than live with the possibility that he died of thirst.
75
IV fluids can cause enormous suffering, from kidney and bladder infections to pneumonias to skin breakdown from fluid retention and third-spacing. It's rare if ever that IV fluids are a good choice at the end of life. Just let him sip water or ice chips if he wants--for comfort, not to extend the dying process.
9
Articulate hydration (and IV) is often not going to make the person more comfortable. The liquid could go where it's not supposed to and cause edema. Feeding tube is similarly not a good answer for an elderly, dying person. The nursing home wher my mom was explained these things to my sisters and I (with one sister who does not live near the nursing home on speaker phone). Call for a meeting with the doctor and relevant staff to discuss your father's care and tell them, in a non confrontational way, that you need to have some things explained better. T the regular care conferences (and some we requested) at our moms nursing home, they explained in detail the pros and cons of artificial feeding and why they did not recommend it. The medical director (a doctor) was especially helpful with this. Keep asking questions until you understand the decisions the hospital is making.
Also, I highly recommend hospice. They came regularly to the nursing home while mom was still up and around (in wheelchair that she propelled herself) through her final last days. They made sure she was as comfortable as possible dying her final couple of weeks and gave us a lot of comfort, too. (Medicare must approve hospice.)
Also, I highly recommend hospice. They came regularly to the nursing home while mom was still up and around (in wheelchair that she propelled herself) through her final last days. They made sure she was as comfortable as possible dying her final couple of weeks and gave us a lot of comfort, too. (Medicare must approve hospice.)
2
Had he been in hospice, not a hospital, he would have have proper pain management and a peaceful death. Hospitals give poor treatment to those at the end of life. It's what hospice nurses are trained to do. We made this same mistake with my father-in-law. I did not make it with my mother. Hospice was there for her and us through the end, and the end was as good as it could be.
5
The title of this article says it all--complexities of choosing an end. Working with a parent who now does have dementia working with this disease is so difficult, with some days that are good and some days that are just terrible. The problem we face, is on those good days, which are really not that good, you feel, things are getting better. Not sure how we would make the decision that, OK, this is the end. While I think Mr. Medalie's directive is certainly specific, the parent I am working with is not so specific.
31
"Like many such documents, it declares that if he is terminally ill, he declines cardiopulmonary resuscitation, a ventilator and a feeding tube."
What if "decline" were the default? Instead, why not require a declaration that one is inclined to receive extraordinary measures?
What if "decline" were the default? Instead, why not require a declaration that one is inclined to receive extraordinary measures?
17
The Medical Director at a hospital where I worked observed,
"No one ever questions the competence of a patient to AGREE to treatment."
"No one ever questions the competence of a patient to AGREE to treatment."
22
Legalized Assisted Suicide, as presently constituted, is not the answer for dementia victims (those who previously indicated they want it, through an Advanced Care Directive, made when they were of sound mind) because a doctor must certify that the patient has less than 6 months to live, and unfortunately, dementia is not a terminal illness. Secondly, even in Oregon, obtaining a prescription for the drug(s), can be time consuming. Up to 6 months. Because a doctor, who has privileges at a Catholic hospital, is not willing to lose his privileges should he write the prescription for anyone. Better for us to stockpile our own drugs, which, unfortunately, must be replenished after their expiration date.
5
Dr. Susan Mitchell might question her "comfort feel" if she had watched and cared for her vital, intelligent, capable spouse knowingly decline into oblivion over several tortuous years.
5
Perhaps we also need new laws on legalized assisted suicide that will make it easier for people to end their lives when they have more than 6 months to live.
2
Well, of course, we do. Absolutely agree with you. I was speaking only of what exists right now.
As a 71 year old in excellent health and without parents who had a history of dementia I find Mr. Medalie's end of life directive (VSED) much better than the one I submitted to my health care provider. It's specifications will make my family's and health care provider's job easier should circumstances warrant such action as specified in the Directive. It will also save both the Medicare system and my heirs a bit of money.
I'm going to try to inculcate such wording into my next iteration of my End of Life Directive & other documents.
I'm going to try to inculcate such wording into my next iteration of my End of Life Directive & other documents.
3
Having STRONG PROXIES who will enforce one's wishes should be enough to ensure that the decision to die by dehydration in case one becomes demented will be carried forward. We could also seek advance approval from any number of others who might have a reasonable expectation of being included in this life-ending decision. Here is a website answering several questions about Voluntary Death by Dehydration: http://www.tc.umn.edu/~parkx032/VDD-Q&A.html.
4
Mr. Medalie, the people who wish to invoke the right of VSED, and the many commentators to this article should be more legally aggressive. Lawyers like myself draft documents all the time which have provisions which may or may not be enforceable, based on the state of the law and the facts at the time enforcement is being sought. That is true of your mortgage, as well as your Advanced Health Care Directive. As a general rule, one unenforceable provision never invalidates an entire document. If a client asked me to draft such provisions for his or her Directive (in Pennsylvania), not only would I do it, but I would be willing to put in even more overt directions as to assisted suicide, notwithstanding that the current state of the law in Pennsylvania would not permit such to be legally enforced. Tomorrow's law may not be today's law, and every person should be master of his or her own Directive. Expressing a crystal clear intention to die may be only the first legal step to achieving that, but it ought to be taken without hesitation or resistance from attorneys.
17
Tom, I'm sure you recall the case of a nurse in a small town in Pennsylvania who handed her very ill father a bottle of pills. The father had signed a DNR order and wanted to die but the nurse was prosecuted for assisting in his suicide attempt. The hospice worker informed authorities about the actions of her patient's daughter. It took much time, many dollars, the dismissal of the nurse from her job and more before the case was dismissed.
The moral of the story: Just because an attorney CAN draft documents to accomplish this end, it pays to be cognizant of the law on the subject in the relevant jurisdiction.
The moral of the story: Just because an attorney CAN draft documents to accomplish this end, it pays to be cognizant of the law on the subject in the relevant jurisdiction.
3
After watching my mother and father die with no dignity and a slow agonizing death, I decided that I'll make a plan so the same doesn't happen to me. Since the only person you can depend on is yourself, you have to make the plan and hopefully be able to carry it out before your mind takes the option away. Over the years I accumulated enough pain killers to probably do the job but that is never 100% effective for a number of reasons. Bought a handgun, but that would be the last resort. Too messy. Then the PBS show "Frontline" had a show a year or so ago called, "The Suicide Plan" and they described a peaceful, painless way to end your life when the time comes. I highly recommend that everyone watch that show. And the book "Final Exit" by D. Humphrey is highly recommended for the same purpose.
I've decided that I would rather go a little early than wait too long and be at the "lack of mercy" hands from others and our insane way we handle old age and dying in this country.
I've decided that I would rather go a little early than wait too long and be at the "lack of mercy" hands from others and our insane way we handle old age and dying in this country.
23
I'm with you. Call me when you're ready, it's likely I'll follow.
3
As a psychiatrist who treats mostly older people, I continue to be surprised when I'm called in to see someone for "lack of appetite," and as I enter the room I see someone not depressed, but someone with end-stage dementia. A couple of them have looked literally like corpses. People do often stop eating and drinking as they are trying to die, and still some health care personnel/administrators/families are wondering if they should be put on a drug to increase their appetite or on tube feeding. Clear and concise advanced directives are needed, as well as a way to make sure they are enforced.
310
"...still some health care personnel/administrators/families are wondering if they should be put on a drug to increase their appetite or on tube feeding."
Indeed, our society as a whole (and that includes many in the medical establishment) just doesn't want to accept death, even when trying to avoid it can cause more suffering in the end, and a pointless waste of money.
Indeed, our society as a whole (and that includes many in the medical establishment) just doesn't want to accept death, even when trying to avoid it can cause more suffering in the end, and a pointless waste of money.
3
What's also needed is serious education of health care personnel about when and how to honor advance directives.
And penalties when they don't.
And penalties when they don't.
3
It is probably seldom stated out of delicacy, but as long as a nursing home can keep a heart beating in the shell of a mindless body, they get their several thousand dollars a month. Why would they not fight it? Keep that heart beating, stick that feeding tube in, no matter that what Medicaid calls the "community" (functioning) spouse has been driven into abject poverty and debt to Medicaid that will outlive the couple. Something needs to change as we Boomers head into senescence in the most brutal financial climate yet.
4
The harsh realities of even the best slow aging and decline were brought into sharp focus over the holidays as I got to hear my mother-in-law being placed on the commode and having her diaper changed over the baby monitor. This was a woman who wouldn't leave her apartment if she didn't have on the correct colored shoes. How dare anyone on this earth try to tell me that I must share such a fate?
That last comment by Dr. Mitchell caught my attention and summed up the entire situation for me. To feed someone who has requested not to be fed is to do something for your own comfort, not for theirs.
That last comment by Dr. Mitchell caught my attention and summed up the entire situation for me. To feed someone who has requested not to be fed is to do something for your own comfort, not for theirs.
445
That struck me as well. If a so-called prominent geriatrician thinks that a gentle spoon of ice cream isn't a blatant violation of a patient's wishes then we're all in trouble. What a dolt.
14
the thing about dementia is knowing when the patient is too far gone. it's subjective at best. my dad passed away about a year ago from dementia/Alzheimer's after suffering with it for more than 15 years (we're not sure exactly how long because he hid the symptoms in the early days/years) and my parents had the necessary documents for end-of-life care. in the end, his health deteriorated in the space of about 3 weeks. he took a tumble and never walked again. in the end, he just stopped eating and drinking. and that was it.
1
“If I’m not me, I don’t want to be.”
That's about how I feel, with the only modification being that if my continued 'being' enhanced the life of others around me in a meaningful way and I was not in pain or discomfort. Check out this summary of the 1981 movie "Whose Life Is It Anyway?" about an artist that makes sculptures. One day he is involved in a car accident and is paralyzed from his neck. After 6 months his condition is stabilized but all he can do is talk, and he wants to die. Yet, In hospital, he make friends and a profound impression with some of the staff who, nevertheless support him when he goes to trial to be allowed to die in home hospice.
http://en.wikipedia.org/wiki/Whose_Life_Is_It_Anyway%3F_%28film%29
That's about how I feel, with the only modification being that if my continued 'being' enhanced the life of others around me in a meaningful way and I was not in pain or discomfort. Check out this summary of the 1981 movie "Whose Life Is It Anyway?" about an artist that makes sculptures. One day he is involved in a car accident and is paralyzed from his neck. After 6 months his condition is stabilized but all he can do is talk, and he wants to die. Yet, In hospital, he make friends and a profound impression with some of the staff who, nevertheless support him when he goes to trial to be allowed to die in home hospice.
http://en.wikipedia.org/wiki/Whose_Life_Is_It_Anyway%3F_%28film%29
My ,mother, in the end stages of MS, with dementia, began refusing food while she was still (I believe, hard to say, she wasn't speaking) sentient. She was in a nursing home, a very good one. Dad and I were with her for a portion of every day. I was usually there at dinner time. I firmly believe that she refused food because she was more than ready to die. We knew her wishes. She died peacefully. No one even suggested a feeding tube. The MS was horrible. Her death was peaceful.
13
My mother did the same thing. She started staying in bed so much that the nursing aides called her "sleeping beauty." She stopped going to meals gradually until she just went to one meal a day and she didn't eat much of that meal. She had some dementia but always knew members of her family except for her great-grandchildren. The assisted living facility suggested we call in Hospice because she had failure to thrive. Within a couple of days after Hospice took over, she broke her hip while attempting to get out of bed. She was almost 96 and probably couldn't have lived through surgery so Hospice prescribed a morphine drip. She spend the next few days in a mostly semi-conscious state. The day before she died her youngest grandson came to see her. She perked up for his visit, then went to sleep, never to wake again. In the days before she died she told us her mother and dead brother were coming to get her. We were glad she lived as long as she did and relieved that she didn't have to suffer anymore.
6
My greatest fear is the long, irreversible and pointless destruction of everything that makes me, well me. And that is in my mind, not in a reflex to food on my tongue.
22
So a few years back, thought I took care, had my adv dir health care proxy in place, registered my wishes with the State (FL) carry an approved yellow card, and got a tattoo over my heart "DNR".
So I break a leg, and in the ambulance, the para-medic opens my shirt and asks
"Is that your girlfriends initials" lol!!!!!!
on the upside nurses (who knew) came to see it, and ALL said that's what they wanted!!!
So I break a leg, and in the ambulance, the para-medic opens my shirt and asks
"Is that your girlfriends initials" lol!!!!!!
on the upside nurses (who knew) came to see it, and ALL said that's what they wanted!!!
13
It's a tough call. I certainly wish when my time comes that I have another avenue than this particular life ending strategy. I've seen it once before and would not chose it unless there was no other option.
One needs to articulate this in advance to family, friends and/or health care providers in advance and in writing. Special discussions may need to be had with some people who may have a much different perspective about how one defines "living".
The individual should be able to determine when to stop generic maintenance and excessive physically alive at all cost treatment.
One needs to articulate this in advance to family, friends and/or health care providers in advance and in writing. Special discussions may need to be had with some people who may have a much different perspective about how one defines "living".
The individual should be able to determine when to stop generic maintenance and excessive physically alive at all cost treatment.
2
My mother had terminal cancer that spread to her esophagus and turned to a hospice. She wanted no feeding tube, and chose to die with dignity, on her own terms. It took about four days, and most of her friends and family were able to see her. Pain management was critical. She died peacefully. Thank you Florida.
4
In less than 2 months I will be 82. I have a DNR order with my family, doctor, hospital. The more I read about the restrictions on the elderly as they lose more and more control over their lives near the end of it, the more frightened I become that I will end up being both a burden to my family and to myself.
I literally have been googling ways that suicide is possible and with what one can use to make it happen that won't involve a bloody mess.
THAT is what these state laws are driving decent ordinary elderly people to doing.
I literally have been googling ways that suicide is possible and with what one can use to make it happen that won't involve a bloody mess.
THAT is what these state laws are driving decent ordinary elderly people to doing.
17
My father chose to stop eating when esophageal cancer quickly recurred after surgery. He was cogent and in control of the process. but starvation is a long road. After he was no longer able to drink very much due to the cancer growing, he died of dehydration in about 5 days. Comfortably. At home, with loved ones in attendance. It worked well. However, when the patient is not in control and not cogent, the decision is more difficult. When a patient has no more money and/or no loved ones to care for him, will he/she simply be allowed to die because no one cares? Or because care has become a burden?
I don't want to be fed and watered if I can't eat and drink for myself or can't ask for food and water. But plenty of families are financially desperate and might be influenced by financial gain, one way or the other: keep him alive to keep the social security checks coming, or let him die to inherit the assets.
The cost of caring for the dysfunctional is a huge question. If Medicare is handed over to private insurance companies and Medicaid is further degraded, these questions will be more and more difficult to answer.
If Mr Medalie's advance directive is found to be invalid, perhaps our choice is active suicide at a certain point in our lives. Post the letter of intent, check into the hotel, etc. Not really the ideal way to die.
I don't want to be fed and watered if I can't eat and drink for myself or can't ask for food and water. But plenty of families are financially desperate and might be influenced by financial gain, one way or the other: keep him alive to keep the social security checks coming, or let him die to inherit the assets.
The cost of caring for the dysfunctional is a huge question. If Medicare is handed over to private insurance companies and Medicaid is further degraded, these questions will be more and more difficult to answer.
If Mr Medalie's advance directive is found to be invalid, perhaps our choice is active suicide at a certain point in our lives. Post the letter of intent, check into the hotel, etc. Not really the ideal way to die.
3
Please keep "helpful" people like Dr. Mitchell away from me.
11
Just watched my 87 yo father-in-law die - Metastasized cancer and dementia and renal failure. Why did he have to starve himself to the point where the standard dose of pain meds would trigger death? Why not the dignity of whisky and pills? JUST CRUEL. We wouldn't do it to our dog.
11
The issue is this: we now possess the technical capabilities to keep a person alive for years and years when there is no quality to that "life". My grandparents didn't have that capability and they simply died. I believed we're seeing this increase in dementia because people who would have died at a much earlier age are now being kept alive through artificial nutrition and hydration.
As a hospice counselor, I frequently see patients who are on feeding tubes. I had one patient who had suffered a stroke make her wishes known that she wanted to have the tube removed so that she could die. after proper review, her desire was granted and she passed peacefully. And realize that, unlike the gentleman whose grandfather contracted thrush when hydration and nutrition were withdrawn, not all patients contract that disease.
I don't necessarily have a "clean" answer, because I don't think there is one. Each person has the dignity and the right to be considered individually. Of course, this requires care and engagement on the part of families and medical professionals, but don't we believe that people deserve that? To suggest a blanket policy or approach must, by necessity, rob people of their dignity. And isn't that what we're talking about: dignity?
As a hospice counselor, I frequently see patients who are on feeding tubes. I had one patient who had suffered a stroke make her wishes known that she wanted to have the tube removed so that she could die. after proper review, her desire was granted and she passed peacefully. And realize that, unlike the gentleman whose grandfather contracted thrush when hydration and nutrition were withdrawn, not all patients contract that disease.
I don't necessarily have a "clean" answer, because I don't think there is one. Each person has the dignity and the right to be considered individually. Of course, this requires care and engagement on the part of families and medical professionals, but don't we believe that people deserve that? To suggest a blanket policy or approach must, by necessity, rob people of their dignity. And isn't that what we're talking about: dignity?
6
It's precisely that we don't want "care, engagement" of families (other than loving support) and least of all doctors.
Don't you get it? Old people want you out of our lives and our decisions.
We want to have our deaths quickly, on demand.
You stay out of it.
Don't you get it? Old people want you out of our lives and our decisions.
We want to have our deaths quickly, on demand.
You stay out of it.
5
I have not read the other comments so apologize for any duplications.
My mom died at 93 last April. Toward the end of her life, she developed some dementia. Athough her memory and ability to sustain a conversation declined, she always knew who we were.
Dementia brought gifts of its own. My mom blossomed into a happy, peaceful and loving person. It was such a gift for all of us to be with her in this state, essentially wiping out a lifetime of many negative experiences with her.
I felt like I had died and gone to heaven to have such connection and love between us. There was nothing but love, love, love - no egos at all.
After a few weeks of this, she faded away and died. I felt that there was nothing left for us to do, and it was time for both of us to move on. I will always be grateful that my mom finally found peace and happiness at the end of her very difficult life.
My mom died at 93 last April. Toward the end of her life, she developed some dementia. Athough her memory and ability to sustain a conversation declined, she always knew who we were.
Dementia brought gifts of its own. My mom blossomed into a happy, peaceful and loving person. It was such a gift for all of us to be with her in this state, essentially wiping out a lifetime of many negative experiences with her.
I felt like I had died and gone to heaven to have such connection and love between us. There was nothing but love, love, love - no egos at all.
After a few weeks of this, she faded away and died. I felt that there was nothing left for us to do, and it was time for both of us to move on. I will always be grateful that my mom finally found peace and happiness at the end of her very difficult life.
8
"Dementia brought gifts of its own." I'm glad you and your mother had a decent time of it, but I think if you look around you'll find that for most dementia patients and their families the experience is miserable from start to finish. First there's the demented person's chronic terrible anxiety, during the phase when they know something's wrong but can still kindasorta cope and are in denial. Then there's the going-off-the-rails-completely phase, during which they may, like my mother, wander and wind up a hundred miles from home. Then there's the anger and violence, and the depression, and the perception that something has been lost but they don't know what. Oh, and the incontinence. And the crying. And the attempts to communicate something, anything, with the broken brain. Those are the usual "gifts of dementia." I wish I could have spared my mother, who would also have wished to spare me, and I have no intention of putting myself or anyone I love through a similar scenario.
36
My ex mother-in-law died last week just short of her hundredth birthday. She had Alzheimer's for at least 2 decades, had not had a conversation or recognized anyone in over 10 years and had gone through all of a considerable fortune for her medical care. I watched how it was so painful to her children. I am sure that dealing with it was awful for my ex-husband and was part of the reason he drank and our marriage ended.
This is not going to be my legacy. I am going to make sure by advanced directive, discussions with loved ones, and stockpiling of drugs that I will never take over every waking minute of their lives with dealing with the deterioration of mine. The ancillary damage to family is too great and a terrible thing to foist on people in
midlife with children they are trying to care for. I want to be remembered for who I am now, and not a dottering empty shell.
This is not going to be my legacy. I am going to make sure by advanced directive, discussions with loved ones, and stockpiling of drugs that I will never take over every waking minute of their lives with dealing with the deterioration of mine. The ancillary damage to family is too great and a terrible thing to foist on people in
midlife with children they are trying to care for. I want to be remembered for who I am now, and not a dottering empty shell.
9
When the people in their 50s and 60s described in this article reach the dementia stage hopefully there will be a baby boomer suicide pill, simply because it will not be possible to provide care for all of us. For my part I don't want to squander any resources in order to prolong my life when it's no longer worth living.
12
In my opinion, as a geriatrician in an academic setting, I think the application of "precedent autonomy" has been woefully underexplored, and i applaud Paula Span for tackling this. Precedent autonomy refers to the ability of the previously cognizant person to make decisions for themselves, in advance, to be applied when that person has lost capacity to make such decisions. It is the framework for living wills and end of life decisions, but it is often "overruled" by palliative care teams with the perspective that the now demented person in front of them is a different person with different needs than that of their same-named predecessor. The active (although fleeting) discomforts of thirst is readily managed by mouth care and sips of water, hunger is often not present in the endstage dementia pt for whom "comfort feeding" is an often unsupported measure, even when clearly requested by families.
9
Dr. Mitchell, it's not about your comfort zone. It's about the individual end of life decision that should be honored, as difficult as that might be for you or for any other medical professional or caregiver. I highly recommend that you read "Being Mortal" by Atul Gawande.
12
How is dying from dementia different from being severely incapacitated from, say, a stroke or other catastrophe (one that might leave one in an ongoing coma)? If I have an advance directive stating that I do NOT want to live in that condition - that if there is no reasonable prospect of my recovery to being a visibly aware and functioning person, then I want nutrition and water withheld - will THAT decision also NOT be respected by a hospital or nursing home?
Essentially I'm asking: What is the point of advance directives if hospitals, nursing homes & other agencies can ignore those directives at their discretion?
From what I've observed among the elderly I've known, it certainly seems that hospitals & nursing homes see elderly people as "blank checks" sitting in a bed - blank checks that the institution can write for maximum reimbursement from Medicare, Medicaid, and long-term care insurance policies. It's ghastly to have one's final years are dragged out because one's mere *existence* functions as a profit-center for one or more institutions.
Essentially I'm asking: What is the point of advance directives if hospitals, nursing homes & other agencies can ignore those directives at their discretion?
From what I've observed among the elderly I've known, it certainly seems that hospitals & nursing homes see elderly people as "blank checks" sitting in a bed - blank checks that the institution can write for maximum reimbursement from Medicare, Medicaid, and long-term care insurance policies. It's ghastly to have one's final years are dragged out because one's mere *existence* functions as a profit-center for one or more institutions.
27
Susan Mitchell shouldn't be a doctor if she can't honor the express wishes of her patient over her feeling "comfortable."
24
Sometimes I wonder if I could get a friend to sneak into my bedroom "when the time comes" and simply put me and my wife down as we would do our pets. Having no children, we often ponder how to develop an exit strategy which will allow us to make our exit on our own terms. The indignity of being "warehoused" in some impersonal institution is an unbearable thought - even if we, at that point - would be beyond remembering from one day or even one minute to the next!!!
Perhaps watching the movie "Harold and Maude" should be on the must see list of all baby boomers contemplating choosing a dignified exit.
Perhaps watching the movie "Harold and Maude" should be on the must see list of all baby boomers contemplating choosing a dignified exit.
6
All this talk...the lawyers, the doctors...why do we allow others to make us suffer on their behalf? Force feeding, tube feeding. Are our lives so important to others -- is there that much money in keeping us alive -- that they are allowed to inflict such indignity on us when we can no longer answer for ourselves? It really is no better than the abuse we so often see against animals, except in a truly loving environment, we grant them a humane and dignified end to their suffering when the time is right.
8
My advance directive specifies that if I am terminal or demented to the degree I am incapable of recognizing my loved ones, I am not to be given antibiotics under any circumstances. This would probably ensure I'd die peacefully of pneumonia or an infection. Pneumonia has been called the elderly's friend as it can give a peaceful, simple death. Death is not the enemy. It is the natural end of life.
6
Oh no! We're all gonna die!
An important article, and many good comments here. I would like to emphasize another aspect of this challenge many will face: It's not just the AD or advance directive. It is also important to think about the transition. Our mom is suffering from dementia. Mom didn't just wake up one day with dementia. It's a slow, painful process for the patient and for all those who care about him or her. I now recognize that not only does a person need an AD, but they should also try to be as clear about their wishes for the transition. It is imperative to try to minimize the guesswork by family members if one becomes the unfortunate the victim of dementia. A few questions to consider:
"How much care do you expect your spouse to provide before professionals take over?"
"Should your spouse pledge to be at your side as long as possible, even though he or she is quite physically and mentally able and could enjoy an active life?"
"How much time should your children spend with you, even when you don't know who they are anymore?"
"Who should take care of your pet when you can't?"
"How long should loved ones keep you in your home if you can afford it, and how much of your assets should they spend doing it, or should you go to a nursing home as soon as your care requires more than your family can provide?"
"Which nursing home would you prefer?"
Dementia creates many problems with no good solutions.
"How much care do you expect your spouse to provide before professionals take over?"
"Should your spouse pledge to be at your side as long as possible, even though he or she is quite physically and mentally able and could enjoy an active life?"
"How much time should your children spend with you, even when you don't know who they are anymore?"
"Who should take care of your pet when you can't?"
"How long should loved ones keep you in your home if you can afford it, and how much of your assets should they spend doing it, or should you go to a nursing home as soon as your care requires more than your family can provide?"
"Which nursing home would you prefer?"
Dementia creates many problems with no good solutions.
193
The Whatcom Alliance for Health Advancement (whatcomalliance.org) in Washington State is an excellent resource for information on how to address the questions you raise. In this county there is great emphasis on providing help with preparing advance care directives and generally educating the public on end of life issues.
1
"But demented patients don’t qualify for so-called death with dignity."
"... two advocates argued that food and water should not be withdrawn until severe dementia has eroded the patient’s quality of life and 'the self has withered.'”
Huh?? Demented patients don't "qualify" for death with dignity? That is simply inhumane!
As to being required to endure "severe dementia" eroding one's quality of life until "the self has withered" - just a minute: Who the hell gets to determine when THAT has occurred?! A doctor, a judge, an ethics committee afraid of a lawsuit?
So, essentially, advance directives, health care proxies and all such are of NO value if one develops dementia. How is that not discriminatory and illegal, if the person who has become demented had decided earlier (while in command of their faculties) that they did NOT want to endure in that condition, and put it in writing and told their doctor(s), family and friends of this desire?
I think Oregon is going to have a very significant population increase in the next 10-20 years.
"... two advocates argued that food and water should not be withdrawn until severe dementia has eroded the patient’s quality of life and 'the self has withered.'”
Huh?? Demented patients don't "qualify" for death with dignity? That is simply inhumane!
As to being required to endure "severe dementia" eroding one's quality of life until "the self has withered" - just a minute: Who the hell gets to determine when THAT has occurred?! A doctor, a judge, an ethics committee afraid of a lawsuit?
So, essentially, advance directives, health care proxies and all such are of NO value if one develops dementia. How is that not discriminatory and illegal, if the person who has become demented had decided earlier (while in command of their faculties) that they did NOT want to endure in that condition, and put it in writing and told their doctor(s), family and friends of this desire?
I think Oregon is going to have a very significant population increase in the next 10-20 years.
6
As I read the comments here I am struck by the closeness of this cyber community...and the near unanimity of the desire to die peacefully, quickly and painlessly.
I think we all seem to be weary of the endless wrangling and hand-wringing and controversy that swirls around us...when in fact all we want is the promise of a peaceful end.
I find this company of posters/bloggers incredibly comforting in reminding me that I am not alone.
I think we all seem to be weary of the endless wrangling and hand-wringing and controversy that swirls around us...when in fact all we want is the promise of a peaceful end.
I find this company of posters/bloggers incredibly comforting in reminding me that I am not alone.
15
Yes, it would be nice if we all could have a little extra morphine to exit a terminal condition more pleasantly-which actually happens in many cases, where the dose in a hospice patient to relieve pain is very close to one where you would cruise all the way out on. This may have been what happened to both my parents, altho they were neither wanting to eat by that time and taking just small sips of water.
Having suffered from periodic migraines for decades where nausea was so severe I could sometimes not eat or keep liquids down for 3 to 4 days, I can say there is no hunger and a slow fading of energy as one dehydrates.
As other commenters have said, when animals are dying, they stop eating and drinking. It is cruel to force them and torturous for them to do so when they are dying.
Ironically, I was reading last night in the times that the 85 wealthiest people in the world (possessing half of the world's wealth) just had their fortunes increase 45% over the last year due to their investments in pharmaceuticals and 'health care'. Interesting.
Having suffered from periodic migraines for decades where nausea was so severe I could sometimes not eat or keep liquids down for 3 to 4 days, I can say there is no hunger and a slow fading of energy as one dehydrates.
As other commenters have said, when animals are dying, they stop eating and drinking. It is cruel to force them and torturous for them to do so when they are dying.
Ironically, I was reading last night in the times that the 85 wealthiest people in the world (possessing half of the world's wealth) just had their fortunes increase 45% over the last year due to their investments in pharmaceuticals and 'health care'. Interesting.
5
The way to not prolong suffering is to die at home. This is the way most people died, until recently. Now, we warehouse people in nursing homes, assisted living and hospitals. Until we change our focus from longevity at any cost to quality of life, nothing will change. I hope the baby boomers change life for the aged as they are "next at bat". From both a cost perspective and a quality of life standpoint, our current system is an abysmal failure and must change.
2
The only reason that "worked" is that was a time period when the vast majority of women didnt work. So there was a primary caregiver and a general social belief that women were supposed to support elderly relatives in their own homes. Obviously everyone works these days and society created thousands of "nursing homes." I agree with you; I just think what you are asking for is not possible in the current economy.
9
My mother actually was cared for much better in the skilled nursing facility of her continuum of care retirement community than she could possibly have been cared for at home, even with hospice (which she had in the SNF). Of course it cost real money - OK because she was only there for about 2 months. And she had lived in the community for 17 years (in independent living until those last weeks) so in many ways it was home. I know how it went because I was retired and able to be there much of every day and some nights. I helped with personal care but was able to get adequate sleep and otherwise stay useful in managing the process, e.g. stopping a med that was intended to stimulate appetite.
3
This is an issue at the intersection of religion, science and ethics. When I see one of those, I declare "none of my business," and decide that whatever the doctor, family and religious guide decides for the patient is the right decision.
1
My mother has advanced alzheimer's. It will be over my dead body if someone or some organization decides to cut off her food and water. She still knows me and loves me and that is all that matters.
"Happiness is good health and a bad memory" Ingrid Bergman
"Happiness is good health and a bad memory" Ingrid Bergman
2
You absolutely have a right to your own decisions. So think how it must be for the opposite, which is more often the case: where someone decides they don't want their own life/suffering prolonged, or else that of a family member, but where some organization (government, lawyers, hospital, church) insists the person be kept alive by force-feeding, tubes, etc.
6
Right now I could easily state my criteria for an end-of-life directive, but when I reach that supposed cut off point where I believed my dignity would end--who knows?--some ice-cream and a sip of water just might suffice to extend it. When dementia leads a proud, adult intellect to become that of a fearful and confused infant, how would you want to treat that dying baby? I would not want to follow the wishes to end the life of someone who may be fearful, confused, and clinging to life, although once they were so certain in their choice. I hope there's a compassionate way of death for us all, not only to spare the suffering of the dying, but of the surviving, as well.
68
If your friends, family and physicians need not follow your end of life directives, carefully crafted years before, should we also ignore your other written wishes and negate your regular will? You may have changed your mind and never verbalized which relatives or charities inherit your money and stuff. Let all of them decide what you really wanted to do.
3
I have cared for dementia patients for 30 years. There is no one approach that fits every patient's needs. Each has a unique personality and values before becoming ill, each sufferer has a different combination of deficits and preserved functions, each behaves differently as the illness progresses. It is well established that the use of feeding tubes does not improve the quality or quantity of life, even though many doctors recommend these and many patients or their families accept them. The situation is more complicated when it comes to "ordinary feeding," i.e., putting food in someone's mouth and seeing if they swallow it. While that is a reflex action, not a considered choice, it is also true that not all patients accept spoon feeding. It seems to me that a patient who swallows on his own, without force, "wants" to eat. If that is the case, feed her (or him). When the patient refuses, it is not safe to force food down the throat and a sign that the patient is at a stage of the illness where continued feeding will no longer help.
136
Spoon feeding when mom was in advanced dementia, only when she would willingly swallow it, was what we and the nursing home did. We'd often go during mealtimes to help out. When she was done, she made it clear. The aides would ever try to force anything.
At our care conferences with the nursing home staff and sometimes the medical director, we would talk about the foods mom especially liked at the time, and they'd try to always have them available (puréed at the later stages, but still appealing in smell and taste). No one was in favor of a feeding tube or IV hydration and she herself had previously made her wishes known against it. Hospice helped a great deal with our precious mom's natural end of life. The fact that she was 93 when she died, I think, made this less complicated too.
At our care conferences with the nursing home staff and sometimes the medical director, we would talk about the foods mom especially liked at the time, and they'd try to always have them available (puréed at the later stages, but still appealing in smell and taste). No one was in favor of a feeding tube or IV hydration and she herself had previously made her wishes known against it. Hospice helped a great deal with our precious mom's natural end of life. The fact that she was 93 when she died, I think, made this less complicated too.
1
Agree. But when we use neuropsychiatric medications (like off-label use of antipsychotics) to reduce care refusal behavior and aggression around care, have we engineered the consent we want in the elder with dementia???
6
Thank you for this comment. It points up the problem when the government or other "agencies" get involved. It becomes a one-size-fits-all decision that may not serve the individual.
1
My mother-in-law, who was unable to write or speak due to brain tumors, finally--after over 30 years in a nursing home--had had enough.
She started clenching her teeth so no food could be forced into her mouth. She turned her head away. She growled and screamed and shook her head frantically.
Her loving husband had refused family pleas to sign a DNR. He'd hung up on the physician who telephoned him to beg him (as she'd begged us) to do this; the doctor had told us in detail how painful and cruel resuscitation would be. He didn't want to know.
So she was force-fed by tube, like a prisoner attempting a hunger strike, until she gave up her quest for a peaceful death. She later died very painfully during a resuscitation attempt.
This was in the bad old days before the concept of Advanced Directives was commonly known. She'd been too young when stricken to think of such a thing, anyhow.
The only thing missing in this horrific ending was some Pro-Life fanatic smiling with satisfaction at having talked her husband into making sure she was given no choice. Sadly, he'd done that on his own.
She started clenching her teeth so no food could be forced into her mouth. She turned her head away. She growled and screamed and shook her head frantically.
Her loving husband had refused family pleas to sign a DNR. He'd hung up on the physician who telephoned him to beg him (as she'd begged us) to do this; the doctor had told us in detail how painful and cruel resuscitation would be. He didn't want to know.
So she was force-fed by tube, like a prisoner attempting a hunger strike, until she gave up her quest for a peaceful death. She later died very painfully during a resuscitation attempt.
This was in the bad old days before the concept of Advanced Directives was commonly known. She'd been too young when stricken to think of such a thing, anyhow.
The only thing missing in this horrific ending was some Pro-Life fanatic smiling with satisfaction at having talked her husband into making sure she was given no choice. Sadly, he'd done that on his own.
59
My mother's best friend, like your mother-in-law, clenched her teeth, growled, and refused food -- but although she had advanced directives, they were ignored by hospitals and nursing homes, and so she was force-fed and died hooked up to tubes, angry.
Her closest relative, her sister, also elderly, believed the doctors when they told her that with food she could get getter and go home in a couple of weeks, bevause she needed to. Anyone with eyes to see knew there was no hope.
There is a place in hell for physicians and facilities that care more for their Medicare payments than they do for the wishes and well-being of their patients.
My mother's cousin, too, had advanced directives. Luckily for ger, she had children, and a brother, who moved heaven and earth to thwart doctors' efforts to hook her up to feeding tubes, and she died as good a death as any of us are likely to get -- except for those happy few who after a long and cheerful life die in their sleep.
When you're helpless in a hospital bed, you need more than advanced directives; you need family and a proxy who will do more than their best for you.
Her closest relative, her sister, also elderly, believed the doctors when they told her that with food she could get getter and go home in a couple of weeks, bevause she needed to. Anyone with eyes to see knew there was no hope.
There is a place in hell for physicians and facilities that care more for their Medicare payments than they do for the wishes and well-being of their patients.
My mother's cousin, too, had advanced directives. Luckily for ger, she had children, and a brother, who moved heaven and earth to thwart doctors' efforts to hook her up to feeding tubes, and she died as good a death as any of us are likely to get -- except for those happy few who after a long and cheerful life die in their sleep.
When you're helpless in a hospital bed, you need more than advanced directives; you need family and a proxy who will do more than their best for you.
9
When I prepared my living will, I wanted to add a statement to the effect that if I became permanently cognitively impaired to the point where I could no longer make my own medical decisions, then I wanted palliative care only. My lawyer refused to put it into the living will -- he said that "the state of Ohio has not legalized suicide" and that it would nullify the entire living will.
I wonder if anyone else has had a similar experience.
I wonder if anyone else has had a similar experience.
9
This doesn't sound like assisted suicide, merely stating that you want comfort absent treatment.
10
you can get that, talk to another lawyer, it's your right to refuse care at anytime.
2
Palliative care is not assisted suicide. It means no longer aggressively pursuing a medical cure for illness or other conditions. It does not mean you stop taking your regular medications or being seen by your doctor.
My father was on hospice care (a subset of palliative care) for two years with a Stage 4 congestive heart failure terminal diagnosis. They finally "kicked him out for not dying" -- our family's whimsical way of putting it. We knew that the care he received from hospice workers at a rehab facility, at home, and in a hospice house was excellent and we suspect it's the major reason why he stabilized and lived as long as he did. Palliative care isn't about making you die faster. It's about making the life you have left as good as it can be.
My father was on hospice care (a subset of palliative care) for two years with a Stage 4 congestive heart failure terminal diagnosis. They finally "kicked him out for not dying" -- our family's whimsical way of putting it. We knew that the care he received from hospice workers at a rehab facility, at home, and in a hospice house was excellent and we suspect it's the major reason why he stabilized and lived as long as he did. Palliative care isn't about making you die faster. It's about making the life you have left as good as it can be.
2
Excellent article, Ms. Span, and though I already miss your blog, it's great to see The New Old Age here in its new home within the Health section of the Times. I'm confident you'll see many of your readers migrating here to continue reading your work and continuing the conversation.
23
I hope so. Thanks for sticking around!
2
Like some below, I question the statement that dying of starvation is likely to be "a comfortable way to die." My 82-year-old father was severely demented and bedridden from spinal degeneration and general wasting. When he lost the ability to swallow even liquids, we followed the doctor's advice not to try to maintain him with a feeding tube. It took this frail man three days and nights to die. He was asleep for probably the majority of it, but watching him awake was extremely painful, because he was so obviously terribly thirsty, yet we could not give him water, only moisten his lips. He quickly developed thrush and labored constantly to clear his throat. We were told that aspiration was not a solution, as it would remove the thrush only temporarily and would irritate his throat even more. He could receive morphine only sublingually,. and it was effective for at most 1-2 hours.
In his case we made the right choice, because anything else would have only stretched his dying from days into a few weeks. But the medical people don't describe the specifics of starvation to you when you decide. You should know them, and if you go that way, be prepared to watch what you have chosen.
In his case we made the right choice, because anything else would have only stretched his dying from days into a few weeks. But the medical people don't describe the specifics of starvation to you when you decide. You should know them, and if you go that way, be prepared to watch what you have chosen.
205
@Dan Weber: No one on the medical side suggested Fentanyl patches, instead of sub-lingual morphine?
6
My father, a physician who knew exactly what he was doing, and who died about 20 years ago of numerous things gone wrong, directed the MD who was treating him (a friend from medical school days) to withhold all nutrition and water; he did get pain meds. It took him just over 3 days to die and it was gruesome. The doctor who acquiesced to my dad's wishes said he'd never do it again: it was the first time he'd ever done something like that and it would be the last. It was too much for him to take.
2
That's how most people who die naturally, of non-acute events, die; that's a normal death. There are few "easy" deaths and society does not know that. Death is gross and sad. I'm a geriatric nurse. It amazes me that people don't want to listen to doctors and nurses who have seen horrific suffering. There's always another medical intervention to try, usually the best thing to do is nothing.
6
Would it be more humane to make suicide the only method for individuals in those circumstances to end their lives?
21
Its not reasonable to expect people with advanced Alzheimer's will have the mindfulness and physical capability needed for suicide. Someone else would have to do it, and then its not suicide.
3
Only if there was a way to get an 'exit prescription'.
I have long thought that with one's 80th birthday one should receive a pink slip, or voucher, for a suicide pill to be taken when desired. Then one could have a party, eat and drink as much as one wanted, without fear of a hangover, and take an eternal rest.
I have long thought that with one's 80th birthday one should receive a pink slip, or voucher, for a suicide pill to be taken when desired. Then one could have a party, eat and drink as much as one wanted, without fear of a hangover, and take an eternal rest.
2
Religious fanatics are determined to deny us the right beforehand to request "barbiturates in vodka" or some other merciful end to terminal suffering. That is why I own a pistol and bullets. Hopefully when the need arises I will still have the ability to outwit those voodoo nitwits! If they choose to stay around to endure senile dementia, that is their problem. What right have they to insist that others do the same? Having observed that end in others, it clearly is not for me, if I can avoid it any way.
46
Well clearly, they'll tell you "No heaven for you". Like the joke goes, Everyone wants to go to heaven but no one wants to die. And when people actually do choose to die to go to heaven, they're called insane or terrorists.
1
please consider a method that will be less traumatic to your family. CO or some other thing rather then the blood and brains approach. Remember someone will have to clean up your mess.
3
D, please rethink the pistol? I know of 2 examples where that event happened indoors and it was a lifelong horrific memory for the loved ones. The stuff went into heating vents and every nook and cranny.
1
I know of many individuals who share Mr. Medalie's goals explicitly, including the wish to suspend hydration and nutrition at some point in the course of a progressive and sever cognitive impairment. My own parents included such statements in their advance directives, and I have cared for individuals whose life ended in this fashion and witnessed no suffering. I commend Mr. Medalie for his forethought and have two wishes: first, that he share his "list of ten triggering conditions" so that we might all learn, and second, that others be able to honor his request - and similar requests made by other individuals - if and when the time comes.
381
Couldn't Ms. Span have included Mr. Medalie's ten directives? I want to put them in my AD.
2
You can see and download my advance directive at this site:
https://sites.google.com/site/jeromemedalie/
https://sites.google.com/site/jeromemedalie/
4
Like markn in New Hampshire, I would very much like to see Mr. Medalie's list of "Ten Triggering Conditions."
Please, NYT, provide that information as a guide for those of us who might like to do the same for ourselves.
Please, NYT, provide that information as a guide for those of us who might like to do the same for ourselves.
“I want to go out on my own terms,” he said. “I don’t want any church, the government, any doctor or hospital or even any member of my family to contradict what I want for my death.”
But he hasn’t persuaded everyone. Dr. Susan Mitchell, a Harvard Medical School geriatrician and researcher, has met Mr. Medalie and read his advance directive.
If she encountered a future Jerome Medalie, bed-bound and suffering from advanced dementia, she said, “I would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream.”
The above quote: "I would not feel comfortable not gently offering him...." Sticky, yucky co-dependency! Do it my way. Live life, and then die -- my way. Of course you wouldn't feel comfortable -- it's your discomfort -- not his. It's what you want. I am shocked that a Harvard geriatrician/researcher has this approach. Cut the co-dependence!
I would prefer a directive to administer drugs that would provide a sleepy, dreamy ending.
Death with dignity and free will please
But he hasn’t persuaded everyone. Dr. Susan Mitchell, a Harvard Medical School geriatrician and researcher, has met Mr. Medalie and read his advance directive.
If she encountered a future Jerome Medalie, bed-bound and suffering from advanced dementia, she said, “I would not feel comfortable not gently offering him at least a sip of water and a spoonful of ice cream.”
The above quote: "I would not feel comfortable not gently offering him...." Sticky, yucky co-dependency! Do it my way. Live life, and then die -- my way. Of course you wouldn't feel comfortable -- it's your discomfort -- not his. It's what you want. I am shocked that a Harvard geriatrician/researcher has this approach. Cut the co-dependence!
I would prefer a directive to administer drugs that would provide a sleepy, dreamy ending.
Death with dignity and free will please
388
That demented patient the future you may not have grand ideas about dying. She will have a brain closer to that of a baby and desire nothing more than water and ice cream. From the comments of others, she will refuse the water and food on her own when the time to die has come. However, I respect her right to end herself before dementia destroys her if she can foresee her approaching loss of herself.
3
Anti psychotics? The 2nd biggest pharmaceutical money maker? Watch out for what you wish for!.. a good way to kill you off and an even better way to manipulate the accompanying dementia related mental illness...lawyers are a win win ....
1
Great article. Thanks for writing about this.
17
We know everyone is going to die, and there is broad agreement that we have input through AMDs. Now the argument is over the precises means to an agreed upon result. This is macabre A person is dying; let them do so in comfort. It is very similar to the debates about execution. That fight is more about prohibiting the process than regulating it, and we can't prohibit death.
12
Yes, we can't prohibit it but we can damn well deny it.
1
Dr. Mitchell, the lady with the sip of water and spoonful of ice cream, is my idea of something not to do.
65
Why? Sips of water and ice cream, yogurt, etc., are considered palliative, comfort care for a dying person. It is not life-prolonging sustenance. When our mom was almost in the last stages of her life, and was eating less and less, her caregivers at the nursing home explained that this was a natural process she was going through, and they would offer her food (she was still able to eat in the dining room), make food she could handle (puréed food, thickened water), and help her to eat, but only if she wanted it. At the end stage, in her final couple of weeks, they and we would spoon feed her thickened water and juice, only if she accepted it (she often asked for it), as comfort care to counter the discomfort and pain of dry mouth and throat. Hospice was very helpful, too, and I recommend that highly.
3
"...you lost your dignity a long time ago; you’ve probably been a burden on your family for six or seven years,” says a Lehigh researcher.
This says infinitely more about that researcher's own attitude than it does about human dignity and the family's level of burden.
I spend a lot of time in a dementia unit with a family member, and there is not ONE resident who lacks dignity. Dignity is intrinsic and is not subject to respecting bathroom norms or dress codes or being able to speak. Those are hangups of the person judging the dementia patient, not a lack of dignity on the part of a person who is sick. This is the last permissible racism: revulsion to sick people. Those of you who can't abide the thought of depending on others and inflicting on them your illness when you are old should take a good look into your heart and soul to ask yourself what your own attitude is towards the sick, the handicapped, and the mentally ill.
This says infinitely more about that researcher's own attitude than it does about human dignity and the family's level of burden.
I spend a lot of time in a dementia unit with a family member, and there is not ONE resident who lacks dignity. Dignity is intrinsic and is not subject to respecting bathroom norms or dress codes or being able to speak. Those are hangups of the person judging the dementia patient, not a lack of dignity on the part of a person who is sick. This is the last permissible racism: revulsion to sick people. Those of you who can't abide the thought of depending on others and inflicting on them your illness when you are old should take a good look into your heart and soul to ask yourself what your own attitude is towards the sick, the handicapped, and the mentally ill.
14
I think you missed the point of the article my friend. This has nothing to do with not wishing to be a burden or with our feelings toward sick people. This gentleman has been in control his entire life. He would like to end it the way he lived it. Please respect his dignity in his wishes. I share them.
3
yes. thank you. insightful point well taken.
1
A bit harsh, but not untrue. None of us wish to bankrupt our family, or expose them to ongoing grief and pain; I think those are the burdens patients and families fear for good reason. But the other burden created by those slowly dying of dementia (substitute any other fearsome deterioration) is the burden of being made forcefully aware of that which we spend tremendous energy denying: our own mortality, our fears of dependence, our horror of the diminished capacities of age. I do think that, to an extent, the burden and anger of having to confront these realities is active in glib formulations about "dignity" and easy assumptions about the "futility" of treating and caring for others with advanced dementia.
3
Long ago, in a galaxy far, far, away... Boston, 1977.. VSED was already old news. I was employed as an aide to a terminally ill man: let’s call him Dave. His son in charge of day time TV programming for a major network; his wife a psychiatrist at Boston’s' most famous hospital: neither of them could sit with their dying husband/father, for more than a few minutes without bursting into tears. Useless for him.
I was hired for an afternoon's emergency replacement--one day only. Dave began to talk about death, within minutes, since it was the only thing he was interested in: I listened and did not cry; he talked all day. The next day his wife called and said, "Please come back and do whatever you did, every day, for Dave."
We talked about death, I read him poems, massaged his feet, he listened to music: within a few weeks he was in steep decline and his doctor told me what he did not have the legal freedom to tell his patient. "Dave would be dead in two days if he stopped drinking water, and eating food."
Dave and I did what the doctors and his family couldn't. "Hey Dave, Doc says you'll be dead in two days if you quit drinking water and eating food". Dave told his wife: "No more water, no more food, please let me die". She told the doc--so they did not tube him. I took the food and water off his tray as soon as nurses left the room: he was unconscious in 8 hours dead within 24. For Dave it was painless and quick.
VSED is not news. It’s been a known reality for decades.
I was hired for an afternoon's emergency replacement--one day only. Dave began to talk about death, within minutes, since it was the only thing he was interested in: I listened and did not cry; he talked all day. The next day his wife called and said, "Please come back and do whatever you did, every day, for Dave."
We talked about death, I read him poems, massaged his feet, he listened to music: within a few weeks he was in steep decline and his doctor told me what he did not have the legal freedom to tell his patient. "Dave would be dead in two days if he stopped drinking water, and eating food."
Dave and I did what the doctors and his family couldn't. "Hey Dave, Doc says you'll be dead in two days if you quit drinking water and eating food". Dave told his wife: "No more water, no more food, please let me die". She told the doc--so they did not tube him. I took the food and water off his tray as soon as nurses left the room: he was unconscious in 8 hours dead within 24. For Dave it was painless and quick.
VSED is not news. It’s been a known reality for decades.
164
VSED isn't new, but, as you relate, it requires clear determination and consent. The article is about the challenge, legally, for those who want to request it before they get too demented to be able to. Sadly, the mind can go long before the body. And for a caregiver, that relatively healthier body, with flickers of the loved one inhabiting it, is a being it may be hard to starve. Great article, wonderful comments from those who have been there. Thank you.
3
You were the angel he prayed for.
3
Thank you Dave! Both my parents died of dementia recently lost, and it meant so much for someone to just walk the lonesome valley with them. You sat and listened which was huge!
Interesting to read about this and considering the fact that it seems to be a somewhat novel concept. I myself (a healthy 51 y/o) was considering this very thing for myself...that if I ever got to a point where I am merely surviving but not enjoying life, then I'd want euthanasia.
I'll never forget one time going with an uncle to visit his wife who had been in a facility for a number of years, with Alzheimer's. I had no emotional connection to this woman as she his third wife whom I never really knew. We visited with her for about ten minutes and he made 'conversation' with her while I think telling her how nice she looked...maybe brushing her hair. And all I saw was a breathing zombie of a person in front of me with no apparent brain processing going on....just her eyes blinking. It was so pitiful that my eyes welled up and I thought 'seriously, what is the point of a person like this going on?...they are literally just being 'kept alive'. Many people are just so scared of dying that they fight fiercely to hold on to life, be it for themselves or for others. But sometimes it's better to just speed-up the inevitable, especially in instances such as this.
I'll never forget one time going with an uncle to visit his wife who had been in a facility for a number of years, with Alzheimer's. I had no emotional connection to this woman as she his third wife whom I never really knew. We visited with her for about ten minutes and he made 'conversation' with her while I think telling her how nice she looked...maybe brushing her hair. And all I saw was a breathing zombie of a person in front of me with no apparent brain processing going on....just her eyes blinking. It was so pitiful that my eyes welled up and I thought 'seriously, what is the point of a person like this going on?...they are literally just being 'kept alive'. Many people are just so scared of dying that they fight fiercely to hold on to life, be it for themselves or for others. But sometimes it's better to just speed-up the inevitable, especially in instances such as this.
40
i also find it useless to depend on others to respect my wishes. I plan to assemble the necessary drugs and decide the time and place myself. All I ask is two weeks of a clear enough mind following a diagnosis of dementia to get my affairs in order, write a few last letters, and purchase a plane ticket to a beautiful beach. I find no joy in hanging on to life after dementia has been confirmed until it is too late to act.
69
I wish you the best but you may be faced with a very difficult decision of exactly when. I'm sure your mental faculties have declined over the years and you've you've adjusted to it, maybe even without much awareness of having done so. If your dementia is gradual, it will be very hard to choose a particular cutoff point to take action. And if it happens fast, you may not have your two weeks time to realize it.
3
No worries about This problem. In a decade , this issue will become so overwhelming for whom involved, no matter what End of life will be left to person and euthanasia will become legal.
As I said issue will be so overwhelming for involved parties. It is beyond anybody's imagination. I am not talking about problems, we knew very well those problems. The issue sheer number of people ends up with this problem.
Wait and see.
As I said issue will be so overwhelming for involved parties. It is beyond anybody's imagination. I am not talking about problems, we knew very well those problems. The issue sheer number of people ends up with this problem.
Wait and see.
23
In his story "Welcome to the Monkey House", Kurt Vonnegut proposed "ethical suicide parlors", purple-roofed buildings adjacent to every orange-roofed Howard Johnson's restaurant, each staffed with sexy hosts and hostesses who would guide you to your painless end. The only problem is that we've allowed Howard Johnson's to go out of business.
4
Atlant--I loved this post.
I too have often thought we should simply have "drop in" euthanasia centers...why on earth not?
We have drop in wedding chapels, churches, drug stores and lord knows what else.
As an aside, I miss HJ's terribly ...a fixture of my long-ago girlhood. Great ice cream and not bad fried clams.
I too have often thought we should simply have "drop in" euthanasia centers...why on earth not?
We have drop in wedding chapels, churches, drug stores and lord knows what else.
As an aside, I miss HJ's terribly ...a fixture of my long-ago girlhood. Great ice cream and not bad fried clams.
1
So starving oneself to death is the best we get? We offer our pets a lot more comfort and dignity.
206
This is so profoundly true, and such a simple, lazer-like truth.
5
"'We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,' said John Brehany, a former executive director of the Catholic Medical Association."
By ignoring their wishes you are saying their points of view never had any value and therefore their lives never had any meaning. You are essentially erasing their past selves.
Only by respecting their wish to die in their own way are you showing that you truly respect them and the lives they have lived.
By ignoring their wishes you are saying their points of view never had any value and therefore their lives never had any meaning. You are essentially erasing their past selves.
Only by respecting their wish to die in their own way are you showing that you truly respect them and the lives they have lived.
326
we treat our pets better than our elders. we all hope for a caring person, family or friend, who has the guts to say, "Enougn," and we want a medical official to manage the exit quickly and painlessly. Our vet has done this for our aged and cancer-ridden cats, with kindness and love. If the laws aren't fixed soon, then we just need to find ways to get ourselves hauled out of the hospitals for a nice drive into the country, where we can hope a clever friend has the stuff we'll need.
134
We have so lost our connection to the earth, and living and dying, and the fact that we are merely animals, that we do not take care of our elders, when they are in pain and wish to die in peace, and with dignity. We have no compassion for them. We don't listen to them (which is why they are often depressed.) It's very sad.
68
At moderate to advanced stages of dementia patients will frequently stop eating and drinking. They should be respected and they should not be forced to eat and drink. One should not assume that they want or need to eat or drink. This is only an assumption and no more supported by evidence than the desire to stop eating and drinking. Dying people stop and eating and drinking when they are dying. All animals do. Please don't tell me we are not animals. After all we use animals for medical research. Shouldn't we use observations of animals to help us undrstand our dying process.
429
My father, who had Alzheimer's, stopped eating unbeknownst to his family. His caregiver never told us about it. He was hospitalized after falling and breaking his hip. His physician convinced me to have in place a nasogastric tube and when that didn't work he had put in a feeding tube. His physician insisted that this was the answer to a short term problem. After my dad was seen by an inpatient therapist, it was clear that he didn't remember how to swallow and couldn't be retaught due to the advanced stage of his disease. This left me in the awful situation of deciding whether to remove the tube (which my dad was constantly trying to pull out anyway) and my siblings screaming that if I did remove it I was killing him. Since my father had been seeing his physician bi-monthly, I had trusted his doctor's advice. It was a major mistake and it made the last few weeks of my father' life horrible. My father clearly had an "imperfect" advanced directive and a physician who thought he was helping but his "care" caused my father pain. It would have been a more merciful end if my dad had not fallen and ended up in the hospital. My advanced directive is much in line with Mr. Medalie's.
11
As a nurse who worked hospice for a few years, and who saw both grandmothers and several other elderly relatives die a slow and lingering death from dementia-related decline, I can assure you I have in place everything I will need to end my own life. Is my choice for everyone? No, of course not, but neither are others' choices for me. I will spare my body the decline and my children the accompanying bankruptcy.
568
I have long ago decided, and told my family, that I am determined to find a way to end my life if I am headed down the dreadful path of Alzheimer's. Watching my mother waste away convinced me of this for all time. I only hope that I -- not being a nurse -- can find a peaceful way to do this.
5
Why would the children be bankrupted? Medicare covers hospice. The parent's resources along with possibly long-term care insurance or Medicaid, cover nursing home expenses. A parent living at home has Medicare for doctors, etc. The children are not charged for these.
My family went through this recently with our mother.
My family went through this recently with our mother.
1
At 77 years of age, my biggest fear is any sort of dementia condition. It plagues me, causes me daily anxiety as I find my ability to focus in decline. I have watched others and their families suffer pain that I do not want my children and grandchildren to suffer.
I have a solid will and DNR in place but how will that help me? My children will not assist my death so what kind of continued life will
I live under this fear? I want to die if I cannot take care of myself and present problems for my beloved family. I am of full mind now so why cannot I just have the right to give authority to someone - someone?
to end my life. I have lived a full and joyful life with some of the pain we all suffer and I do not wish to end it in such an horrible way of decline until death. I want it now when it is easier rather than the horror of a failed manner of living where everyone suffers.
I have a solid will and DNR in place but how will that help me? My children will not assist my death so what kind of continued life will
I live under this fear? I want to die if I cannot take care of myself and present problems for my beloved family. I am of full mind now so why cannot I just have the right to give authority to someone - someone?
to end my life. I have lived a full and joyful life with some of the pain we all suffer and I do not wish to end it in such an horrible way of decline until death. I want it now when it is easier rather than the horror of a failed manner of living where everyone suffers.
5
That sounds very sweet, doesn't it, the doctor at the end of the article who would just have to offer a sip of water or spoonful of ice cream. But don't kid yourself into thinking that you aren't prolonging suffering if you do that, because you are. Sometimes dementia takes away everything but pain, and to refuse to let a life like that end is very cruel.
156
In my dad's case, I don't think the spoonfuls of ice cream or water prolonged anything. Though he had been refusing most food for many days and was clearly dying, once he arrived at the hospice home, he perked up for a few days and asked for ice cream and other foods. The hospice home prepared safe little portions. I could not imagine denying my father these small pleasures.
6
This comment is excellent and wise.
1
Actual cases -- not just "one good friend" -- of people refusing both food and liquids show that usually, this is not a painful way to go. Here are two books that talk about this: Imperfect Endings, a daughter's story of love, loss and letting go, by Zoe Fitzgerald Carter. Jane Brody's Guide To the Great Beyond, a practical primer to help you and your loved ones prepare medically, legally, and emotionally for the end of life, by J
27
A highly complicated topic that is worth talking about. SImple answers dont exist.
I read some articles that geriatric suicide is more common than statistically reported because no investigator can know after the fact if the elderly person intentionally or accidentally overdosed on his/her Rx drugs. I suspect this is how at least some seniors handle the issue of their mortality. Not an easy topic but I am convinced that hospitals get it wrong more than they get it right when it comes to "right to die"
I read some articles that geriatric suicide is more common than statistically reported because no investigator can know after the fact if the elderly person intentionally or accidentally overdosed on his/her Rx drugs. I suspect this is how at least some seniors handle the issue of their mortality. Not an easy topic but I am convinced that hospitals get it wrong more than they get it right when it comes to "right to die"
41
It is the nursing home industry and the religious fanatics who are denying this "inalienable right." Support is needed for Compassion and Choices and their campaign to make Death With Dignity legal in all 50 states. And to say that dementia is not an painful and incurable condition is lunacy.
1
"Catholic authorities, for example, have generally opposed removing terminally ill patients’ feeding tubes or IV fluids."
I do not know about removing feeding tubes, but I can definitely tell you, based on a recent case of a close relative, that Catholic authorities have no problems with declining to prolong life with feeding tubes in terminally ill patients (the case involved whether to insert feeding tube at all).
I do not know about removing feeding tubes, but I can definitely tell you, based on a recent case of a close relative, that Catholic authorities have no problems with declining to prolong life with feeding tubes in terminally ill patients (the case involved whether to insert feeding tube at all).
8
Not placing a feeding tube is a far different decision than removing one that is already in place.
My dad got a feeding tube four years ago when he had a storm of illnesses within a short time frame--gall bladder issues, gallstones, a stroke, pneumonia, and a broken hip. I was undergoing radiation for cancer 1500 miles away at the time, so was not involved in making any medical decisions for him. Now he lives with diminished capacity in a group home. I can easily say that this is not a life he would have chosen had he been able to choose himself, but I can't say that he doesn't have some quality of life that satisfies him as he is. We cannot in good conscience talk about removing his feeding tube, upon which he has not always been but is now completely dependent. And no medical personnel will speak about it either.
It is what it is.
My dad got a feeding tube four years ago when he had a storm of illnesses within a short time frame--gall bladder issues, gallstones, a stroke, pneumonia, and a broken hip. I was undergoing radiation for cancer 1500 miles away at the time, so was not involved in making any medical decisions for him. Now he lives with diminished capacity in a group home. I can easily say that this is not a life he would have chosen had he been able to choose himself, but I can't say that he doesn't have some quality of life that satisfies him as he is. We cannot in good conscience talk about removing his feeding tube, upon which he has not always been but is now completely dependent. And no medical personnel will speak about it either.
It is what it is.
8
Susan, I am truly sorry about your father.
I disagree with you on your characterization of far different decision in the context of my comment, to which you replied.
I was talking about what Catholic authorities hold in the case of terminally ill patients. Basically, they hold that one is not required to to provide artificial means of delivering nourishment in such cases.
I disagree with you on your characterization of far different decision in the context of my comment, to which you replied.
I was talking about what Catholic authorities hold in the case of terminally ill patients. Basically, they hold that one is not required to to provide artificial means of delivering nourishment in such cases.
1
I'm in favor of euthanasia but not of this way to go. I saw a good friend die this way and it was awful. It took forever and I'm not at all convinced that it was a dignified and comfortable way to exit. It was slow and miserable. A nice large dose of morphine would have been helpful but that wasn't done.
Seriously, rethink this one. Try to figure out another way.
Seriously, rethink this one. Try to figure out another way.
54
I think it was Bill Moyer who said that once we accept the fact that we will die, then we become concerned with the manner of our death. I found that to be true in my own case. Yes, I will die, and I am really concerned that faced with a dreadful end, I will have my options restricted by those who hold different values and/or religious beliefs.
180
Exactly. Death itself doesn't bother me, because once it's happened I'll be dead. The long sleep itself is unfrightening. At my age, I'm beginning to be at peace (as much as anyone can be, I suppose) with the notion of going out like a light.
It's the uncertainty of dying--the dreadful gerund, the getting from here to there--that can cause me to break into a cold sweat. The manner by which you arrive at your own death matters quite a lot.
With religious loons on the ascendant in this country, you have to grapple with the possibility that some remorseless theocrat (or terrified bureaucrat) could compel you to endure a prolonged, ugly, humiliating, toxic, pointless death regardless of your stated wishes. It's a dreadful thought, truly frightening.
It's the uncertainty of dying--the dreadful gerund, the getting from here to there--that can cause me to break into a cold sweat. The manner by which you arrive at your own death matters quite a lot.
With religious loons on the ascendant in this country, you have to grapple with the possibility that some remorseless theocrat (or terrified bureaucrat) could compel you to endure a prolonged, ugly, humiliating, toxic, pointless death regardless of your stated wishes. It's a dreadful thought, truly frightening.
148
Good on Mr Medalie & his advocate. A personal experience was a friend involved in a car crash who was admitted to an Emergency Dept at a Teaching Hospital. Decisions of course were taken at speed. There was no access to his Advanced Directive until his wife arrived many hours later. The momentum of his drastic, life-saving treatment was stopped & he died. He was 'saved' from a lifetime in a vegetative state. Advanced Health Directives should be somewhere on a centralised computer registry.
129
Having watched my father for a year with dementia before he died, I am resigned to end things my way.
I will take the advice of a friend which is: acquire 10 grams of Nembutal (sodium pentabarbitol), available in Mexico, put it in a safe place with a note to myself, which reads: When you cannot remember what this is for, take it all, with a jigger of booze.
Death this way can be very quick, and quite serene.
I will take the advice of a friend which is: acquire 10 grams of Nembutal (sodium pentabarbitol), available in Mexico, put it in a safe place with a note to myself, which reads: When you cannot remember what this is for, take it all, with a jigger of booze.
Death this way can be very quick, and quite serene.
182
You are assuming,of course, that you will still be able to read...
Or carry out the business described in your note...
You may not be capable of doing that. Then what?
Oh, by the way...please consider adding an anti-nausea pill to the
mix so you don't throw up the mixture you ingested...
Or carry out the business described in your note...
You may not be capable of doing that. Then what?
Oh, by the way...please consider adding an anti-nausea pill to the
mix so you don't throw up the mixture you ingested...
4
While I sympathize with your intent, I am sorry to tell you it rarely works out that way.
When you have advanced dementia, you will not remember how to read. You won't remember that you once bought Nembutal to end your life. You wouldn't remember where it was in the first place. Even if someone handed it to you, you would not recall what the purpose was. The directions (or humor within) won't make any sense to you.
Long before things hit rock bottom, you will likely be in a hospital or nursing home. Your family or a nurse will have long since removed all drugs from your access, because you cannot remember to take even a vitamin let alone prescription drugs.
You won't even have the ability to KNOW how bad things are or why, let alone how to end it. You won't remember your loved ones, your family or even who you are.
Even worse, this comes on you either gradually or all at once, but never in a way that would let you say "NOW is the moment to kill myself, because tomorrow I won't know who I am". By the time it IS that moment, it will be too late for you to act at all.
When you have advanced dementia, you will not remember how to read. You won't remember that you once bought Nembutal to end your life. You wouldn't remember where it was in the first place. Even if someone handed it to you, you would not recall what the purpose was. The directions (or humor within) won't make any sense to you.
Long before things hit rock bottom, you will likely be in a hospital or nursing home. Your family or a nurse will have long since removed all drugs from your access, because you cannot remember to take even a vitamin let alone prescription drugs.
You won't even have the ability to KNOW how bad things are or why, let alone how to end it. You won't remember your loved ones, your family or even who you are.
Even worse, this comes on you either gradually or all at once, but never in a way that would let you say "NOW is the moment to kill myself, because tomorrow I won't know who I am". By the time it IS that moment, it will be too late for you to act at all.
7
Thanks...these are things to consider, as my resolve remains the same. Same to Lisa M.
3
As another 88 year old, I whole heartedly side with Mr. Medalie's opinions, even though several years ago my daughter, nurses and a hospital saved me from a stroke. Even healthier now, I want the inevitable to be natural, perhaps postponed again like drops of rain on the Indian chief in the "Little Big Man" movie.
7
If I can't avail myself of "Death with Dignity" if I start down the road to dementia, I definitely want to have an advance directive like Mr. Medalie's ordering VSED or at least no food. Being a childless, orphaned only child, I can't imagine anyone getting so upset that they contradict that order. I would rather my assets go to charity than to keeping a shell of myself "alive" for years. (The important thing is that my beloved pets are cared for!) I plan to contact my lawyer and draw up an advance directive next week, even though I'm still a spring chicken, comparatively speaking. Hopefully, by the time I hit 80, assissted suicide will be legal here in CA.
90
Funny, that's exactly what I thought as well...why keep me alive in such a state, just for the sake of 'keeping me alive'. And what an utter waste of perfectly good money (just to 'keep me alive') that could instead be given to the many charities I care about.
22
Again -- I sympathize. I worry about this stuff myself, though I am 59 and hopefully it's a while off. My biggest fear is leaving my beloved pets too -- and not having any way to ensure they are cared for after I am gone.
But assisted suicide won't help you if you have advanced dementia, because you would lack capacity to make this decision. Assisted suicide is for people completely in their right minds, who have a painful terminal illness.
I care for an elderly aunt with dementia. It's not severe yet, but she's gradually losing her sense of self and has already lost much of independence and joy that people find in life. She's in a nursing home, with bad food, where the aides treat her like a simpleton. She is in a wheelchair, in Depends, in a communal living area all day, staring at the TV.
This is not a good life, yet I am helpless to do anything. Even changing her meds, the staff gives me a hard time. (They have an economic interest in keeping her around as long as possible.) If my aunt's true self could come back for 15 minutes, she'd be horrified and want to end it all ASAP. I am positive of this. But there is no sane or humane way to do this to another person.
You can have an advanced directive, but there is a very good chance even if your family agrees, the nursing home or hospital will NOT starve you to death let alone administer fatal drugs to end your life. And you will have no ability or agency to take ANY action, because you'll be lost in the fog of dementia.
But assisted suicide won't help you if you have advanced dementia, because you would lack capacity to make this decision. Assisted suicide is for people completely in their right minds, who have a painful terminal illness.
I care for an elderly aunt with dementia. It's not severe yet, but she's gradually losing her sense of self and has already lost much of independence and joy that people find in life. She's in a nursing home, with bad food, where the aides treat her like a simpleton. She is in a wheelchair, in Depends, in a communal living area all day, staring at the TV.
This is not a good life, yet I am helpless to do anything. Even changing her meds, the staff gives me a hard time. (They have an economic interest in keeping her around as long as possible.) If my aunt's true self could come back for 15 minutes, she'd be horrified and want to end it all ASAP. I am positive of this. But there is no sane or humane way to do this to another person.
You can have an advanced directive, but there is a very good chance even if your family agrees, the nursing home or hospital will NOT starve you to death let alone administer fatal drugs to end your life. And you will have no ability or agency to take ANY action, because you'll be lost in the fog of dementia.
3
Then I will take Nembural along with a bottle of my favorite beer right after I get a dementia diagnosis and before a nursing home gets hold of me.
"'We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,' said John Brehany, a former executive director of the Catholic Medical Association."
Perhaps Mr. Brehany could explain to us what this value is. Right now, we're dealing with an elderly relative who has dementia, and I think it's a terrible way to live. Physical discomfort from various ills of old age, mental confusion, frequent emotional distress. It breaks your heart to be with people who are nothing more than the shells of who they once were. I think it would almost impossible for either staff or most family members to comply with a directive for VSED, but, really, it's a terrible way to end.
Perhaps Mr. Brehany could explain to us what this value is. Right now, we're dealing with an elderly relative who has dementia, and I think it's a terrible way to live. Physical discomfort from various ills of old age, mental confusion, frequent emotional distress. It breaks your heart to be with people who are nothing more than the shells of who they once were. I think it would almost impossible for either staff or most family members to comply with a directive for VSED, but, really, it's a terrible way to end.
58
Starvation is unnecessary suffering...not redemptive in any sense.
Quick, painless death is what all of us deserve. And it is so easy to accomplish.
Quick, painless death is what all of us deserve. And it is so easy to accomplish.
16
My Dad had Alzheimer's and I went down to be with him during his final days. I'm not sure how long he'd been denied food and water, but it was agonizing to watch. He was at home and the nurse told us not to discuss funeral arrangements near him as he might still be able to hear us. Then might he also feel the agony of death by starvation and lack of water? He was given liquid morphine orally to ease his discomfort and even though he could no longer see, he seemed to be very aware when these droplets hit his lips. It made me think of the story of Jesus being offered vinegar while being crucified. It was so painful to watch and I knew he must be suffering. When he finally had no heart beat and was declared legally dead, the funeral home staff came to take my father away. As they lifted him off the hospital bed and I saw his frail body, I had to look away. His limbs looked like those of the dead found in POW camps in WWII (a war he'd risked his life to fight in) Now 60 years later his life ended much like those he fought for. We must come up with a better way to deal with these people in their last days. God rest his soul.
119
Thank you for sharing this terribly painful memory.
And yes, we can and must do better. I hope, someday soon, that folks can make their wishes to die as clear as they possibly can (no nay saying by family or doctors) before the descent into illness...and then request in writing (revocable of course by the person him/herself) the desire to be quickly and peacefully given the drugs (with help) to simply go to sleep.
The drugs are available and the death is fast and painless.
They do it at Dignitas in Switzerland...and you can travel there to do it, but it's complicated.
And yes, we can and must do better. I hope, someday soon, that folks can make their wishes to die as clear as they possibly can (no nay saying by family or doctors) before the descent into illness...and then request in writing (revocable of course by the person him/herself) the desire to be quickly and peacefully given the drugs (with help) to simply go to sleep.
The drugs are available and the death is fast and painless.
They do it at Dignitas in Switzerland...and you can travel there to do it, but it's complicated.
30
John, Sorry to hear about your loss. My mother in law just passed away due to Alzheimer's recently. She slipped quickly from eating a full bowl to barely a spoon. Literally in less than 2 weeks before her death- she would refuse to open her mouth for a spoon of water- it was hard. It made me search for information to not just relieve my anxiety but to make sure she is not in discomfort. From what I understood is that patient's loose their ability to feel hunger and thirst. They are also losing their ability to swallow as the brain is losing control over muscles and the responses they need to have. Hunger and thirst are the first response a baby has after that first cry and breathing. In Alzheimer's, when the patient starts refusing food, it is one of the biggest signs of the last stages. All we could do is make sure her lips are moist- sometimes I wasn't sure if it was for her comfort as she was in near coma or for the rest of the family members. I hope you might take some assurance even if you don't agree, that there might be a chance that he did not suffer.
40
I'm so sorry for your loss. I have to agree that it is easy to talk about starving someone to death, but in reality, this is horrible. Most of us would not and could not do this to a loved one.
My dad died of colon cancer in 2004; he had always said he would never want to die in pain or with dementia. He even had drugs saved up to end his life. But when push came to shove -- when he was dying in hospice -- and the doctors came and said "Do you want a feeding tube put in?"....Dad said YES.
He did not have dementia, and it was his choice. He could have chosen to slowly starve as in this article. But he asked for the feeding tube. This prolonged his life -- and pain -- for at least 5 more weeks. But I don't know the right answer. It can't be what you went through with your dad. Even a primitive animal knows it is thirsty or hungry. Eating is one of the very last pleasures to go.
Often, the "answer" is to simply tank people to the gills on morphine, so they don't feel the pain -- but this means your final days are spent in a fog, unable to enjoy even the simplest things, like a human touch, a glass of cold water or the sunlight in a window. I can't believe that is "merciful", either.
My dad died of colon cancer in 2004; he had always said he would never want to die in pain or with dementia. He even had drugs saved up to end his life. But when push came to shove -- when he was dying in hospice -- and the doctors came and said "Do you want a feeding tube put in?"....Dad said YES.
He did not have dementia, and it was his choice. He could have chosen to slowly starve as in this article. But he asked for the feeding tube. This prolonged his life -- and pain -- for at least 5 more weeks. But I don't know the right answer. It can't be what you went through with your dad. Even a primitive animal knows it is thirsty or hungry. Eating is one of the very last pleasures to go.
Often, the "answer" is to simply tank people to the gills on morphine, so they don't feel the pain -- but this means your final days are spent in a fog, unable to enjoy even the simplest things, like a human touch, a glass of cold water or the sunlight in a window. I can't believe that is "merciful", either.
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I, also, would not want to withhold a sip of water or some ice cream to a dying patient. But I would fully honor that person's wishes to be allowed to die as he or she wishes, no matter the circumstances. This is our only, final choice, and I don't want to be circumscribed by anyone else's dictum about how death should occur. This is a wholly individual decision.
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If you are completely in your right mind, then absolutely yes. I don't have a problem with that.
But this issue is not about clear-thinking people without dementia. It's about people whose minds have GONE, who are deep in Alzheimer's or other forms of senile dementia. In advanced cases, they don't have any idea what day it is, who they are, and they do not recognize even loved ones.
They cannot make even the simplest decisions, and typically have forgotten even things like how to use the bathroom or feed themselves. If you have never experienced this with a loved one, you really have no idea.
In movies and books, "elderly dying folks" are often attractive, verbal, charming -- full of folky advice and stories of the old days. They seem perfectly capable of something like choosing to end their lives. If that is your luck, then please do what is best for yourself.
With dementia, the awful choices fall on family members -- and you are making choices that can be painful, like seeing someone starve to death or die of thirst. These can be very agonizing deaths in the last days. There are no simple answers to this problem.
But this issue is not about clear-thinking people without dementia. It's about people whose minds have GONE, who are deep in Alzheimer's or other forms of senile dementia. In advanced cases, they don't have any idea what day it is, who they are, and they do not recognize even loved ones.
They cannot make even the simplest decisions, and typically have forgotten even things like how to use the bathroom or feed themselves. If you have never experienced this with a loved one, you really have no idea.
In movies and books, "elderly dying folks" are often attractive, verbal, charming -- full of folky advice and stories of the old days. They seem perfectly capable of something like choosing to end their lives. If that is your luck, then please do what is best for yourself.
With dementia, the awful choices fall on family members -- and you are making choices that can be painful, like seeing someone starve to death or die of thirst. These can be very agonizing deaths in the last days. There are no simple answers to this problem.
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Mr. Medalie is waiting to be -- astonishingly -- for society to "allow" him to starve himself to death.
He is, as Ms. Span says, trying to "persuade" even a Harvard geriatrician to not offer him ice cream and water.
(It is astonishing that a Harvard researcher has not seen enough death and dying close-up to know that end term dementia patients usually cannot swallow (they often, like so many terminally ill actively dying, aspirate food into their lungs). In the hospice where I worked for many years, though meals were served, we never, ever urged people to eat.
Mr. Medalie, a loving suggestion from me:
Take steps to prepare your own death. If you are diagnosed (and I hope you never are), prepare a means to have your own death your own way. Peacefully, quietly, with dignity, surrounded by your family.
That likely means choosing and obtaining now (it is never too soon--I have already done it) sufficient drugs to leave this life quickly and without suffering.
Pentobarbitol is the drug of choice, but there are many others.
Keep doctors out of it, and stop asking permission.
It is your life, and your death. You deserve to have, as far as it is possible, a "good" death. Everyone does.
He is, as Ms. Span says, trying to "persuade" even a Harvard geriatrician to not offer him ice cream and water.
(It is astonishing that a Harvard researcher has not seen enough death and dying close-up to know that end term dementia patients usually cannot swallow (they often, like so many terminally ill actively dying, aspirate food into their lungs). In the hospice where I worked for many years, though meals were served, we never, ever urged people to eat.
Mr. Medalie, a loving suggestion from me:
Take steps to prepare your own death. If you are diagnosed (and I hope you never are), prepare a means to have your own death your own way. Peacefully, quietly, with dignity, surrounded by your family.
That likely means choosing and obtaining now (it is never too soon--I have already done it) sufficient drugs to leave this life quickly and without suffering.
Pentobarbitol is the drug of choice, but there are many others.
Keep doctors out of it, and stop asking permission.
It is your life, and your death. You deserve to have, as far as it is possible, a "good" death. Everyone does.
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I agree but the problem for individuals is when to do that. Then it is too late and society puts him in a "care facility."
You seem to have missed the crucial point. He wants to live as long as possible when he has his mind. And not a second shorter than that. I think there are many who feel similarly.
You seem to have missed the crucial point. He wants to live as long as possible when he has his mind. And not a second shorter than that. I think there are many who feel similarly.
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K Henderson:
I grapple with precisely this agonizingly tough decision/choice every day.
I too want to live as long as possible when each day offers the possibility of even the slightest joy.
But I know that there may not be a "best" second to choose...we weigh up the pros and cons and then, one day, we sorrowfully must take the plunge.
It would be so right if we all could do this with as much peace, comfort, love, encouragement, understanding and support...as possible.
I hope the day will come when this peaceful ending will be made part of everyday life...something not to be so horribly feared.
I grapple with precisely this agonizingly tough decision/choice every day.
I too want to live as long as possible when each day offers the possibility of even the slightest joy.
But I know that there may not be a "best" second to choose...we weigh up the pros and cons and then, one day, we sorrowfully must take the plunge.
It would be so right if we all could do this with as much peace, comfort, love, encouragement, understanding and support...as possible.
I hope the day will come when this peaceful ending will be made part of everyday life...something not to be so horribly feared.
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agreed, but how is an older person going to obtain Pentobarbitol?
I note "hands on" workshops in Europe for setting up helium tank.
I find the instructions/practicalities difficult (how to get a helium tank home, how to set up the tubing). I would travel out of town for such education.
VSED is not the way I want to go out, but without compassionate euthanasia, there is no other choice. It changes how you live your life, faced with choosing suffering for days/weeks with VSED vs years with dementia.
I believe in planning wisely for the inevitable.
I note "hands on" workshops in Europe for setting up helium tank.
I find the instructions/practicalities difficult (how to get a helium tank home, how to set up the tubing). I would travel out of town for such education.
VSED is not the way I want to go out, but without compassionate euthanasia, there is no other choice. It changes how you live your life, faced with choosing suffering for days/weeks with VSED vs years with dementia.
I believe in planning wisely for the inevitable.
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An excellent, important article. It would be very helpful to have a copy of Jerome Medalie's 10 tests for activating his advanced medical directive/
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Ms. Fulmer, in addition to the two mentioned:
"I cannot remember the names of my wife or one or more of my children."
"I cannot read books with understanding and enjoyment."
"I cannot watch or listen to television or other media with understanding and enjoyment."
"I cannot intelligently discuss an issue with intellectual proportions."
"I have forgotten when or how to eat or drink without assistance."
"I have forgotten when or how to perform personal hygiene on a regular basis without assistance."
"I remain uncommunicative for long periods of time."
"I babble incoherently or curse erratically or without apparent provocation exhibit anger, antisocial or other bizarre behavior."
These are Mr. Medalie's criteria. Others will choose their own.
"I cannot remember the names of my wife or one or more of my children."
"I cannot read books with understanding and enjoyment."
"I cannot watch or listen to television or other media with understanding and enjoyment."
"I cannot intelligently discuss an issue with intellectual proportions."
"I have forgotten when or how to eat or drink without assistance."
"I have forgotten when or how to perform personal hygiene on a regular basis without assistance."
"I remain uncommunicative for long periods of time."
"I babble incoherently or curse erratically or without apparent provocation exhibit anger, antisocial or other bizarre behavior."
These are Mr. Medalie's criteria. Others will choose their own.
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Thank you for adding the list. My reaction: he is certainly pretty rigorous .I am very pro advance directive and personal choice; but - as horrified as I am by some agonizingly slow departures - I know people who show many of these losses and who wouldn't want to leave the earth quite yet.
Maybe, there needs to be some further criteria about the length of time the symptom has existed, and whether it is seen all the time or for some portion of the day. As in, yesterday was the first time you were confused as to the identity of your daughter vs. showing no recognition of any family members in the last two weeks, no attributable to after effects of medication or a simple UTI.
It is complex.
Maybe, there needs to be some further criteria about the length of time the symptom has existed, and whether it is seen all the time or for some portion of the day. As in, yesterday was the first time you were confused as to the identity of your daughter vs. showing no recognition of any family members in the last two weeks, no attributable to after effects of medication or a simple UTI.
It is complex.
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An interesting attempt to try and end ones life early. However, how many days of not recognizing a spouse is enough? Does that recognition have to be saying their name (or yours)? Unfortunately, there is no clear line besides when a patient stops eating or drinking once it is placed in his or her mouth.
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Very true. 3 weeks ago, I came to see my great aunt in her nursing home. She is 93. I walked right up to her and said "hi, Aunt Ethel! how are you?" and she said "who are you?"
I see her 3 times a week and am her caretaker. However, the week after that I went on vacation. When I returned, she not only remember me but she asked how my vacation was.
So imagine if I decided her life should be terminated, based on the fact she failed to recognize me! Dementia can come and go, especially in the early and middle stages. You can have good days where things are almost normal and then bad days, when your "self" seems to have departed.
I see her 3 times a week and am her caretaker. However, the week after that I went on vacation. When I returned, she not only remember me but she asked how my vacation was.
So imagine if I decided her life should be terminated, based on the fact she failed to recognize me! Dementia can come and go, especially in the early and middle stages. You can have good days where things are almost normal and then bad days, when your "self" seems to have departed.
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We are allowed to be kind to our pets by putting them out of pain and/or dementia. I want the same mercy for myself.
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Here is the problem with that: while you or I would only put a pet down who is in pain or suffering a terminal illness, SOME PEOPLE would happily put down a pet for the slightest reason -- because they soiled the rug, or are not "cute puppies or kittens anymore". Or the family is moving, and Fido or Fluffy isn't wanted.
The shelters of this nation are chock full of unwanted pets, and many are euthanized -- 4 million a YEAR. Every year. And this number is down from 10 million a few years ago. That's healthy adoptable animals that nobody wants.
For every person who genuinely wants to save their elderly relative from the misery of Alzheimer's, there is ANOTHER person who is very eager to see Granny die, so they can get their hands on the inheritance. Every day she "takes up room" at the nursing home, she spends down THEIR inheritance. This makes people consider very selfish decisions.
The man who wrote "Final Exit" (a book of instructions on how to commit suicide, for health reasons) went on to compel his elderly in-laws to commit suicide, even though they were not terminal nor had dementia. When they did so, he and his wife inherited a large fortune. His wife later wrote about this, and said she realized how unethical it was now, but her husband's forceful attitude and smooth talk convinced all of them it was "necessary".
The shelters of this nation are chock full of unwanted pets, and many are euthanized -- 4 million a YEAR. Every year. And this number is down from 10 million a few years ago. That's healthy adoptable animals that nobody wants.
For every person who genuinely wants to save their elderly relative from the misery of Alzheimer's, there is ANOTHER person who is very eager to see Granny die, so they can get their hands on the inheritance. Every day she "takes up room" at the nursing home, she spends down THEIR inheritance. This makes people consider very selfish decisions.
The man who wrote "Final Exit" (a book of instructions on how to commit suicide, for health reasons) went on to compel his elderly in-laws to commit suicide, even though they were not terminal nor had dementia. When they did so, he and his wife inherited a large fortune. His wife later wrote about this, and said she realized how unethical it was now, but her husband's forceful attitude and smooth talk convinced all of them it was "necessary".
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This whole dilemma has weighed on me since realizing that with my own mother and many other nursing home residents -- they are going to die over a long long time as their bodies and brains erode. At the time when they may have decided enough is enough - they can no longer think the thoughts nor determinedly refuse to eat or drink.. I certainly understand the refusal of nursing homes and hospital to be party to withholding food, but it would seem that an explicit living will should be honored as if the person was standing there and still able to tell you what was written.
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Hospice should help with this. My mom received a mild opiate in the last stages of her life. When we asked why she was in pain during this natural process, they said it could be painful as her organs were shutting down. We and the nursing home caregivers offered her thickened water and juice for comfort care, which she accepted (and asked for). When the end came, it was peaceful, for which I'll always be grateful.
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I'm at an age when I think about my approaching death fairly often, and pray that whatever I die from it won't be dementia. However, I would not burden my family with an advanced directive that would make them have to decide when to stop giving me food and water.
I'm hoping that when my time comes I will die peacefully in my sleep, as my mother and my husband did.
Or if not, that I can keep my wits about me long enough to ask for, receive, and at the proper time swallow, my suicide pill by myself.
I'm hoping that when my time comes I will die peacefully in my sleep, as my mother and my husband did.
Or if not, that I can keep my wits about me long enough to ask for, receive, and at the proper time swallow, my suicide pill by myself.
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I suspect that once it's well known that hospitals will keep you going even though you've explicitly said you want to be allowed to die, people will simply not bring their loved ones to the hospital. While it might make some uncomfortable, the right to choose the manner of our death is every bit as vital as our right to determine how we'll live our lives. Hospitals will wring every last dime out of a vulnerable patient who can't speak for themselves.
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J, my grandparents said very similar things but once they each went into a hospital for serious but not fatal issues, they never left. This is the problem with hospitals when one is elderly. You enter but you dont easily get to leave. Neither wanted it that way and there is regret that a hospital has that much control.
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I think that people/families are beginning to recognize that they may well be used as "cash cows" by the medical establishment at the end of life.
On a practical level, and to inject a bit of humor, I am trying to figure out the practical aspects of all of this: where to die so as not to "smell up the place," how to avoid having my home ransacked by strangers, making sure I am not subjected to an autopsy, not being violated in death, some comforting words to the few people who still know I am alive.
Some day, when we get civilized, we will have helpers to get us through this without worry.
On a practical level, and to inject a bit of humor, I am trying to figure out the practical aspects of all of this: where to die so as not to "smell up the place," how to avoid having my home ransacked by strangers, making sure I am not subjected to an autopsy, not being violated in death, some comforting words to the few people who still know I am alive.
Some day, when we get civilized, we will have helpers to get us through this without worry.
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