I have worked as a geriatric psychologist for twenty years and have observed the process of decline over and over. The end of life feelings that evolve as each person, along with their loved ones, rarely are stable or predictable. Most people who are committed to compassionate ends, find themselves valuing life more than they anticipated.
The advance directive for dementia concept is a great one for the purpose of conversation and maintenance of quality of life, but the tool that we are discussing is very negative and inadequate as far as decline occurs. Not all people with dementia have the symptoms addressed in the tool, the disease is much more complex and the decline is not always a devastation as this tool would have you believe.
I would suggest a more objective re-do of the tool, to reflect what might happen, rather than a tool that clearly is written by someone who sees this as inevitable tragedy.
Most people choose life, over death, when push comes to shove. Helping people to decide when they want life to end based on a tragedy model, is not in sync with the will to live that most of use will have at the end of our lives.
23
Having watched my sister in law go through early onset Alzheimer's and die a year ago, and my mother with dementia, who died in June, the early part of the disease or diseases may still have quality of life for the affected. But the last nine months for each of them did not represent any quality of life. And at least in my mother's case, she would have been tremendously unhappy if she could have viewed herself over that time. Yes, this is certainly a difficult and touchy subject. But one also has to remember the caregivers as well, who are dragged through an emotional hell. Most of us, after the death of a loved one, are just totally washed out, and acknowledge that death was a relief. Some of us may have found that we did not really grieve afterwards, as we had been grieving for the last year of life. I know that I have thought a lot about this and have tried to make it as clear as possible to my wife and my adult children what I want, and it is not to hang on to a life not worth living if it comes to that.
54
These guidances are excellent but I suggest one addition to the guidance on severe dementia. That is that if I become unable to recognize family and friends and I am unable to feed myself or take part in my own care, I do no wish to be fed, receive a feeding tube or be given parenteral (intravenous) food or fluids. I wish to receive comfort care only and be allowed to die.
55
It's too bad that just about everyone will be forced to die if they have dementia, even if they don't want to. It's just the culture.
I have seen it up close. Some with dementia are still so much more themselves than anyone else will ever be, and can for years be joyful and a source of joy to others.
Cost? Yes, we have other societal needs. But we're not addressing them - in fact, I can't recall a time before when so much money is spent on discretionary junk. And that's not even counting the top 10%, 1%, .1% with all the world's assets.
13
I am not certain this would hold up legally without at least a dated witness page (which the Planner link does have). Moreover, it is too vague in parts as others have pointed out. Useful to share with proxy but doubt it’s binding. By the way, if you do have a binding DNR order tape it on the fridge with instruction: don’t call ambulance/EMT. If that happens all bets are off. The call means resuscitation is back on the table.
13
I'm a geriatric neurologist who specializes in the care of people with cognitive impairment and dementia. A decade ago, I would have completely agreed with the idea of a dementia-specific advance directive. But, over and over since then, I have seen that individuals actually living with dementia feel differently about their condition than those caring for them, and differently than they themselves felt at earlier stages. Situations that look, from the outside, to be intolerable are, often, deemed quite ok when the individual is actually in it. Can't remember how to make toast and coffee? No problem if you have a loving spouse who makes it for you. Can't manage to get your shirt on right-side-out? Shirts no longer have a "wrong" side at a certain stage of dementia. Ask a typical patient with moderate-stage Alzheimer's disease whether they are content, and they will respond yes. They get joy from watching birds on the feeder, or their grandchildren playing (even if they don't remember their names, or sometimes even that these are their grandchildren). I agree with other responders to this article who stated that these advance directives are really just a way to feel more in control of a very uncontrollable process. There is a world of difference between knowing that you don't want to be kept alive in a persistent vegetative state and knowing what you might want if you have diminished capacity.
27
One the New York Times best articles, "The Last Day Of Her Life" chronicles the life of a woman who realizes she has dementia and chooses assisted suicide. It parallels this article and it is worth reading. I hope if I come down with dementia I have the where with all to commit suicide, preferable with the help of friends and big bottle of morphine.
27
For me, substitute a big bottle of bourbon.
5
Thank you Paula for the link. I put it in my "Save" folder to re-read.
How about lists for people with other medical issues as we age. I have type 1 diabetes and wonder if I will be more prone to hypoglycemia as I get old. I don't want to endure a never ending series of crises over this. How do I know when enough is enough? Can I take some control over this?
8
This is a fine idea, though I read the document and it seems as though it needs some editing for clarity and specificity. However, I think these advance directive documents often give a false sense of security to those who’ve executed them. My mother, for example, had a an advance directive and health-care proxy form that was executed by an attorney, but it turned out not to be a legally binding document. For a legally binding directive including a DNR order, one has to complete a state-specific form (in Maryland it is called a MOLST) AND the patient’s personal physician must sign off agreeing to it. So essentially, the doctors are still in control here (though if her doc hadn’t signed, she would have looked for a new doctor).
8
The magical document described in this article is of little use should there be a disagreement between relatives. If there is no disagreement between relatives, who needs an eight-page document?
What boggles my mind: how the U.S. has elevated medical professionals to preisthood. This article is proof that many consider doctors those who define life and death. The new phenomenon of euthenasia "by choice" is the clearest evidence.
The guidiance of M.D.s is not based on experience - they were absorbed by studies until long after reaching adulthood.
Their guidance is not based on philosophy - they studied very little besides science.
They have relatively little human-to-human contact - their daily activity during studies and career can not be impeded with emotion.
Finally, how can you be certain of the character, philosophy and competence of the local M.D. in Smalltown USA who was born and studied in a region and culture far from your own? Why of course, he's super-human .
13
It is very helpful to enter Advanced Directives in Electronic Health Record (EHR)of individuals so it is available in case of emergencies and unexpected hospital admissions.
13
I wish I could get the "ICE" (In Case of Emergency) on my cellphone to work. I live alone, and if something happens the emergency people will never be able to unlock my cellphone and call my sister / brother-in-law / lawyer / Forest Lawn.
7
Ms Vandervelde creates beautiful paintings
16
This is an important contribution to,planning for different levels and qualities of well being, given an aging person's inner and external human and non human resources over time, health and disease conditions.Dr. Faster is to be thanked for sharing his ideas and work, and the NYT for making it available.The ability and opportunity to make helpful informed choices, and decisions, while both broadening and deepening necessary knowledge, and understanding, and to consider their actual and potential implications and consequences during our life cycle, with all of its uncertainties, unpredictabilities, randomness and lack of total control is a welcome gift!Letting selected others in our life know where this document is, and where it may have been moved to, is a critical issue.
6
The mind is complex. My wonderful and loving father had Parkinson's and dementia. He sometimes had hallucinations (probably from the medicine) as well. He had a particularly bad day one day. At this point his dementia was probably straddling the moderate/severe categories. A couple of days later I was crying in front of him from the sadness and the frustration, as I managed all aspects of his life at that point. He perked up from his bent over position, looked straight at me and spoke quite clearly, "Don't cry, without you I would be dead right now." That one sentence confirmed 1) Yes, he wanted to live and 2) Yes, he did appreciate all that I was doing. It is not so easy to know in advance what one will want when one is in this situation.
29
Remember when people died of old age?
Now everyone, no matter how aged, dies of something pathological. Pneumonia. Heart failure. Complications of (you name it). People don't just wear out anymore. Maybe part of the stigma attached to death is that it is no longer looked at as a normal part of life.
And hospitals try desperately to keep suffering people alive long enough to transfer them somewhere else so their statistics look good.
24
Advance directives are a waste of time. You don't know when or how you will become incapacitated, or whether something new might be available by then to help you. They are used to decrease one's anxiety in the present. If you have a reliable person, give them power of attorney. If you don't, if doesn't much matter what you do.
13
While I hope to be living in a state--Oregon--that offers the possibility to end my years legally, I am wholly prepared to take matters in my own hands, hopefully while I am yet able. My entie family has passed on, many with dementia, many lasting years in a zero-quality state with never-ending care problems. Fortunately, I have a wife in full agreement with my wishes and no children to squabble about the issue. I am 78 years old and have survived three heart attacks, so it may be that the Almighty will take care of things. If He doesn't, I see no value for me, for my beloved spouse, or, indeed, for society in general to cling to life long after my mind's left for other terrain.
25
Watch the recent PBS hour-long documentary, "Care." It's available online, etc.
See 4 real people, their families -- and their very real caregivers all trying to hold it together. Sobering stuff.
Life is great ... until or unless it isn't.
Health is priceless. Autonomy is doubly so.
But neither a given -- at any stage or age.
27
For readers wondering how to access Dr. Gaster's dementia-specific advance directive, or emailing him to ask for a copy, here's the link again. It's also in the column:
https://www.dementia-directive.org
Paula Span
New Old Age columnist
7
Thank you! This article was clearly missing this part.
The more people complete advance directives, the more normal it will be, and it's something every adult should do. We are the first generation in human history that likely has some say about how we die. That's empowerment and respect for personal values. This is an issue in flux, but it should not be one to avoid. Best book on the subject is "The Better End: Surviving (and Dying) on Your Own Term's in Today's Modern Medical World" by Dan Morhaim, M.D.
7
I certainly agree with having these conversations prior to the development of dementia. However, the degree of explanation is very important. The option of full resuscitation in SEVERE dementia would be cruel and unusual punishment. This would involve performing chest compressions and likely rib breakage in a frail person, with resulting pain and minimal chance of returning to the quality of life experience prior to the heart stoppage. A miserable way to go, when there are great options for comfort care at end of life.
43
This does not apply to every situation BUT if your loved one has a new health event at home, and you are confident that she/he does not want heroic medical efforts made, then DO NOT CALL 911. Once you do that, you are at the whim of myriad healthcare workers. They will use the crash cart and they will intubate, etc. Much suffering and good luck telling them you have a directive. The hospital doesn't want to get sued for withholding care. Once intubated, your directive is worthless to get the tube removed. Many do not know that.
31
This is false. Most states have advanced directive forms that you can fill out and medical staff will still provide care without going beyond your wishes (usually with the letter OLST or orders for life sustaining treatment somewhere in the name). Getting the tube out with an advanced directive is absolutely done, please don’t spread false information
4
You may be correct re: ERs/hospitals but the caution was about EMTs. In either case, if your medical proxy/advocate isn't at your side, you can bet the medical personnel [all] will go into full "save at all costs" mode. Ask anyone who's been in an ER or hospital lately if they were asked if they had an AR or POLST; I'll bet most were not asked. POLST was developed here in Oregon at OHSU and their ER can't take any bows. Be prepared for all possibilities.
6
The Eskimos use a ice flow but they are getting scarce with this global warming thing.
6
There is an aspect to dementia that I have not seen discussed. From my own experience with dementia, along with memory loss came the loss of connection with hobbies and people, both close and distant relationships. When you can only think in the present, the trust factor from long-standing relationships disappears and strangers find it easy to ingratiate themselves or outright swindle you. It is very important to settle your estate before even mild dementia sets in otherwise the guy that mows your lawn may end up with everything and your children go begging simply because your children become strangers to you and no longer exist in your defective memory. The courts are not very sympathetic once a signature is applied to a will.
23
Just asking.....if the people who should be closer to you at this time are not, do they deserve your money?.......once again, just asking.
1
That doesn't give the sibling that is "closer" the right to subvert the wishes of the parent that were already laid out when she was of sound mind. In my family, my brother never really left home, he was a mooch his whole life. And he has violently assaulted me three times because I discovered he was stealing, on top of the neglect and psychological abuse of her. I am not safe to visit my own mother in China. The police did nothing the two times he attacked me. And I am being completely cut out of her life by him. You, like my brother, may be consumed by money. I want to talk about the proper care of my mother, and honoring HER wishes.
7
The world is due for an elder abuse reckoning. The United Nations has already passed a resolution declaring June 15 as World Elder Abuse Awareness Day. With the exploding aging population, there will be an avalanche of cases.
I have just lived through two years of trying to protect/save my mother who has dementia, from my brother who has been preying on her from the safety and protection of a lawless China rooted in male hegemony.
While my mother did not have such a specific advance directive, she did have her legal wishes, all of which my brother (and her Chinese-thinking friends, even though Mom bucked typical Chinese thinking to give us equal standing) has ignored, ultimately assaulting me three times to keep me away from her, and psychologically abusing her to turn her against me.
It is heartbreaking beyond belief to know that he has neglected her in failing to provide proper and professional medical care, resulting in a diagnosis of severe malnutrition last years. Instead, he has a surly maid with no medical qualifications, who I fired for stealing (I spent 5.5 months in China caregiving to her myself before he tried to kill me), back in Mom's house.
Any mechanism which can remove any ambiguities, and can help head off siblings fighting, and can better insure the wishes of the individual, needs to become law.
As it is, I have had no access to my own mother for over a year, and likely never will again, dead or alive.
6
Every time I go to the doctor anymore, I'm handed one of these documents to fill in. I know it's the responsible thing to do, but I feel extremely ambivalent. I'm a robustly healthy 68-year-old. My husband is 69, has some serious chronic issues that are being managed, but he still enjoys life very much (and I enjoy him).
Should I sign a do not resuscitate order? I would very much like to wake up. I know I could wake up with brain damage, but what are the odds?
I did discuss with my doctor an order for "no artificial feeding" because I know this more often than not turns out to be permanent. But she said there are many cases where there are good reasons for this and it's temporary--one can return to health.
I wish doctors took the time to discuss all these issues and their implications, rather than just handing us a document that seems to imply we shouldn't want further medical care at our age.
24
R, you wont be 68 forever. You are making a mistake if you think your health will be just as good at 75. Statistically it is not likely. You need to plan.
15
I'm 67, close to 68. I'm in a flurry of what will likely be my last extended travel. I was tested for dementia about seven years ago; early retirement was necessary, but for mental problems other than dementia. My father began suffering from mild dementia when he was in his 50s; I never really understood it until he was around 70. His last several years were miserable. I do not want to burden relatives to the extent that he (with no choice in the matter) did.
There's every reason to set up advance directives as well as make my finances as straightforward as possible. And a copy of "The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter" should arrive tomorrow. It might provide the courage to cull about a quarter of the books in the house. And maybe de-clutter the yard.
13
My understanding is that the medical community is in the process of determining that dementia is rarely a sole disease, in fact it is usually a combination of diseases -- dementia and Parkinsons, strokes etc.
My mother had dementia from 2002 (maybe earlier) to 2016, when she passed away. She was cared for -- food, lodging, social visiting, pristine cleanliness etc. She had a DNR from 2008, had medication which relieved her anxiety but was unable to respond to the ravages of disease. No flu shots, no extraordinary measures at all. And still she survived for 8 more years.
Doctors want to preserve life, lawyers want a piece of the financial pie. Children just want their parents to leave this earth with some dignity. Its not easy to do.
27
My review of the comments finds the same unanswered question I have: how do you write a health directive that enables you to die AS dementia takes you. How do you instruct doctors to let you die when living has no meaning?
I'm hoping this is resolved in the next 10 years or so.
23
I have to say that I am not particularly trustful about the medical industry's ability to actually provide what the patient has requested. We do not have a patient centered medical system. We have one that is centered on economics and policies that are motivated by external considerations. We chose to keep my mother at home for hospice care this summer and found not a caring regime designed to meet my mother's needs but short staffing, rules that mandated when and if my mother would get what we felt she needed (comfort care basically). It was all premised when the firm felt she met the criteria of terminal. At this point she was combative, in a wheelchair, unable to feed, dress, go to the bathroom, even turn-over in bed. Sometimes she knew who we were, sometimes not. We couldn't get pain meds because it was the weekend. Before getting her into a hospice program the majority of medical care my mother got related to sores on her leg -- no one tended to her emotional and psychological needs. We, the children, were forced to take care of the process and the doctors would just keep doing useless things because they would be reimbursed. It is a crazy and dysfunctional system missing a central mandate that the patient comes first. So, advance directive? It doesn't seem to matter. And the three of us (my siblings and I) were very assertive in terms of knowing the law, constantly on top of what she needed etc. American health care is industrial medicine, period!
24
This is a terrific initiative, addressing an enormous problem. Thank you for bringing it to attention. And thanks for the excellent comments. The current situation is appalling.
13
These personal stories of individuals coping individually with dementia and its consequences offer a cautionary tale of the peculiar, a-social variant of individualism that makes up the "American way of life." The burden is monetised via insurance (if at all possible) and shifted to strangers paid to 'look after'...'take care of' but as for these paid carers, their own burdens often cannot be monetised because they are paid such low wages they are barely able to feed and house themselves and their children. Dementia offers an opportunity to take a long look at the isolation, alienation, and reliance on the cash nexus that is now the American way of life.
11
My beloved mother died New Year’s day, at 89 years old, and probably weighing that much after a battle with dementia/Alzheimer’s lasting about 10 years. Thirty years ago, she said that if she knew her mind was going to go before her body, she would choose to end her life instead of suffering. Sadly, that choice was never made. Instead, her mind and body betrayed her, trapping her in a horrible state of incontinence, fragility, loss of language, loss of mobility and a few falls with broken bones along the way. This is quality of life? I wish she would have had a dementia directive and I’m sure she would have had one if possible. Nursing homes are holding areas for the soon-to-be dead. Dementia patients die twice. Let people die with dignity and die by choice. It is the humane thing to do.
103
The point made about determining whether dementia patients should be hospitalized is a good one. My father had severe dementia and parkinson's on top of that in his late 80's. He was rushed to the hospital emergency room twice late at night after falling and scraping his head, even though there was no severe bleeding. On both occasions he spent hours on a gurney in the ER waiting for an evaluation. He was not admitted to the hospital and returned to the nursing home confused, tired and further along the road to extreme dementia. An advance directive against inappropriate late night transfers to a hospital emergency room would have been a big help to my father.
51
Ugh -- Why would any single person want to embark on medical treatment for a serious illness like cancer if you can't even remember what happened a week ago? Who would be responsible for me? My daughters with their busy lives. One of whom is a prominent physician and teacher, and the other one with children and her own life? Would I be like their pet? To be fed and rolled over?
It's difficult enougn having a serious illness if there is a light at the end of the tunnel. I want to go quickly in the night if I am slowly becoming a person with no memory and no means to care for myself.
If I had a long-term partner, it might be slightly different for the first stage. I am only speaking for one who plans to work forever and not happy unless I can be independent. I do not want a caretaker, period. Either I live close to the way I have all my life or forget it. Move on.
34
An event not explicitly anticipated by Dr. Gaster's form, but common in older people, is kidney failure requiring dialysis treatment. It would be a good idea to ask the patient, or your relative, if they would want dialysis, an invasive treatment for anyone but especially so for those experiencing the confusion that arises with dementia, if their kidneys were to fail. It is a palliative treatment for sure, but it is time consuming and life-altering for the patient and their caregivers. I have met dialysis patients who had no idea that once they start, they are on it for the rest of their lives, and elderly people will typically not be approved for a transplant (for good reasons). So just ask, and if refusal of dialysis is added to any advance directive, make sure it is done in the patient's/relatives own words and with their signature affixed to it.
37
When my father first went into AL with early signs of Dementia, I was strongly encouraged to sign a DNR which I did reluctantly. He's currently in a nursing facility due to a serious fall resulting in a hip fracture, requiring surgery. He recovered, confined to a wheelchair, unable to dress or care for himself and wears Adult Diapers. He's been back and forth to the ER for a variety of issues like pneumonia, seizures, and subsequent falls, a resilient, tough old bird at the age of 98. During his most recent unexplained seizure event, one attending ER Doc raised questions regarding the DNR, and made it sound as if was a premature death sentence, an easy out for some children with nefarious intentions who take advantage, and don't want their parents to survive under any circumstances. I was shocked given his negative perception, and he left me with guilt feelings for having signed it four years prior. It certainly raises valid questions to consider pursuing an alternative directive.
30
The more interesting question is why we think we need to hang onto life for as long as possible. As a culture, we are so attached to being alive and so afraid of death that these issues create guilt, remorse, anger and shock, as you so aptly note. I have had a beautiful life and I want a beautiful death. That means I don't want to hang around just because...I think your brave father's story is a reason for all of us to talk about what we want while we can, and share it with our loved ones so that they're not put in this position down the road. My heart goes out to you.
22
It was inappropriate for that physician to question your motives and wildly inappropriate for him to suggest this decision was taken to enrich yourselves or due to a lack of feeling for your father. Nothing like being told you are out of line by someone who has known you and your father for about five minutes! Something many people don't know is that resuscitation efforts are generally only about 18% effective, and of that 18%, somewhere around 5% who survive suffer cognitive damage, sometimes severe. The idea that your father would be dying prematurely at age 98 is risible. Rather than a traumatic death during a resuscitation, I wish a peaceful death for him and am impressed by your courage to stand by the directive!
23
I have 2 incredibly loving daughters, but my younger daughter is the one with more common sense when it comes to knowing what to do in crisis situations. After watching me make decision for my mother and father in laws' end of life, and how I made sure that they didn't suffer, and died with dignity, she found a wonderful end of life directive called Five Wishes, to fill out and leave copies for with my husband, daughters, doctor, and lawyer. She knew, that I don't want to be kept alive with feeding tubes, and other heroic methods, to suffer without dignity, and make my loved ones suffer also. But she knew, unless I spell out everything exactly the way I want them, my older daughter isn't going to let me go, if I'm suffering without hope, or become incapacitated, and make it unbelievably hard on everyone. I'm greatful for her wisdom and cool head to be able to have a heart to heart talk about my wishes for my end of life with me. Five Wishes, helped me put down exactly how I want it to be, and to spare her from fighting with her sister over what should be done with me. I want them to love and support one another when I'm gone, not fight with each other.
36
I am prepared. My wife and I bought long-term care insurance from a name-brand insurance company back in our forties, while healthy (we still are, but that can’t last forever). The long-term care insurance is Plan B.
Plan A is a short-barreled shotgun. Plan B is in the event I am physically or mentally incapacitated and unable to use the shotgun (I don’t want my estate dissipated by the cost of long-term care, and I don’t want my wife taking care of me). I have seen those last five to ten years played out by my father, my aunts and uncles, and the parents of friends. There is no dignity in those last years and months when there is intense suffering. I have had a great life—better than I ever imagined, and there are far worse things than death. I have always tried not to wait too long before putting my pets down. I plan to spare myself and those around me accordingly. Those close to me know my plan, and know not to take it personally. This is about me, not them.
The fact is that without legislation to enforce them, the provisions of advance directives are subordinate to the will of your next of kin. When the rubber meets the road the doctors will do what your next of kin direct. Hopefully, your next of kin will honor your stated instructions, but don’t count on it.
42
Plan A is a far better option, but given the nature of the disease, it may be difficult to implement at the right time.
7
Plan A is great for you - but what about the ones who find you, who have to clean up after you, who will forever carry the memory of all that with them for the rest of their lives?
3
Shotgun? And who will you leave to find you? Are you willing to push that trauma on a person who will carry that forever? Selfish.
3
It is relieving for a patient to know that everything will be taken care of when their illness worsens. Some people may want to make these choices themselves, but others may want to give the decision-making power to someone they trust (an advance directive) when the time comes. This should be a choice that each individual can make for themselves. But the most important thing to do is to communicate all these concerns to people you trust and document them.
Personally, if I was in such situation, I would like to fill in something like Dr. Gaster’s form. I would like to make these decisions myself when I still have the ability to do so, because I would not want myself to be a burden to my family or experience something that is very painful and not be able to communicate it. Also, it feels a lot better knowing that being able to make such decisions takes the pressure off of my loved ones, especially during a time of mixed emotions and the different opinions of countless people.
After reading this article, I think it is important to have an advance directive in addition to the form. Although the patients would like the doctors to follow their own plans, there may be cases with unforeseen events that the form does not cover. They will need the opinion of a person that the patient trusts and this person must be someone that the patient knows well enough and has communicated all their feelings to in case anything unplanned comes up.
4
Notwithstanding the outcome of his Montreal Cognitive Assessment Test, I think there is a strong case to be made for him looking into this.
8
I was my mother's conservator for 17 gut-wrenching years as she had dementia.
Although my mother had an advanced directive which stated she did not want her life prolonged if she had a terminal illness, dementia did not neatly fit into that description. As the article points out, dementia can last for years and early and mid-stage dementia still allow a person to enjoy aspects of life.
Every time I had to bring my mother to the ER for some upper respiratory illness,
the doctors always asked me if I wanted to give her antibiotics--they always wanted to know if I wanted to intervene. I always said yes because she was my mother and I wanted her to receive care.
When my mother eventually developed aspiration pneumonia, I had a feeding tube put in so that she could continue to get nutrition It was a difficult decision, but she was my mother and I wanted her to eat and did not want her to starve.
My mother's dementia progressed to the point where she was non-verbal and did not move and had to be hoisted from bed into a wheelchair using a hydraulic lift.
My mother ultimately developed a bowel obstruction; doctors told me nothing could be done and it would not be appropriate to operate. I listened to the doctors this time, but to this day, six years after her death, I still agonize over whether I should have insisted they operate on my mother in spite of the severe dementia.
Dementia is a different kind of terminal illness. A different advance directive is needed.
8
Just wanted to send you a big hug.
11
This is a very important discussion. 100 percent of us will die. Only about 15 percent will die suddenly. The remainder will have a lingering death with chronic diseases of one type or another, usually with progressive dependency.
We are the first generation to know that we will gain late age and with it a high likelihood of dependency. We can influence our care options, especially for the final years.
See "Ultimate Health, Finding It" a small booklet on making choices: www.clarenceguenter.com
12
When my husband died and I wrote a new will, my lawyer pointed out that it was foolish to leave my power of attorney and health care proxy with my older sister, a retired paralegal. “She is your OLDER sister, and you have three very capable adult children,” she noted. I had not wanted to burden my children or choose among them, but realized my lawyer was right, and I made changes accordingly. Others may want to rethink their choices in similar circumstances.
8
Note: I signed and dated every page of the directive, initialed each box I checked, and numbered pages (“page 3 of 4”). I will provide copies to my children, doctor, and lawyer.
9
Just know that sometimes the best laid plans can be subverted by a sociopathic sibling intent on elder abuse.
17
This is meaningless unless there is real reform in our health care system. Those of us born from 1954 onward will probably be unable to retire and have not been able to save enough to afford medical care even if we are forced into retirement.
What will probably happen is that we'll wind up homeless or worse and unable to take care of ourselves because we'll be unable to work. Whether the inability to work is because we can't find jobs or because we wind up with dementia is irrelevant because the results will be the same. The real conversation in this country needs to be between the citizens and the politicians, many of whom will never experience the financial need that we will.
30
I've never had a relationship to anyone that knowingly had severe Alz or dementia. A number of years ago, my mom and I went to visit an uncle down South, and whose current wife I'd never met before. She had serious Alz and was in a facility. During my visit, my mom, uncle and I went to visit his wife. We walk through the cold, sterile Facility and sat in a sterile room with nothing but a cafeteria style table and similar chairs. After a few minutes, his wife was brought in in a wheelchair and planted in at the table with us. The attendant then turned around and left.
I tried to get my cues from my uncle interacting with his wife, to try and gauge just how bad she was. It became quickly clear that she was basically a 'vegetable'...her eyes were glazed over...not much eye contact...she'd randomly look at us with no cognitive activity going on in her brain. My uncle would ask meaningless questions like 'so did you eat lunch yet?', while he combed her hair. She just sat there. I had to turn away as the tears rolled down my face...and this for a person I didn't even know.
No thank you. That is no life. The individual has zero quality of life. Any 'relationships' are dead, with family members simply fulfilling a duty to visit. The person as they once knew them is gone. Energy and money is expended, but for what exactly? I've already told my family that if I ever get to that point, they should put me to sleep, much as we would lovingly do for any of our pets.
45
Unfortunately, if they put you "to sleep" a local prosecutor will likely bring criminal charges against them, as has been done many times in the past.
12
My mother has advanced stage Progressive Supranuclear Palsy and in a Dementia Care facility. She is far from a vegatable and neither are the other residents in her facility. Some of them are quite alive, maybe not as their loved ones remeber them from their prime.
I don’t believe in prolonging my mother’s journey (her wishes as well), but I think killing her off is not the appropriate answer either.
6
Decades ago, author Jessamyn West wrote an account of helping her sister, dying of cancer, over the edge. It's a monumental story about death and dying. "A Matter of Time" chronicles her experience.
2
Two important clarifications:
First, "advance directives" (AD) is a vague term for many different forms, and doctors are just as confused as patients. To put it simply: there was an early stage in AD forms when people made out a living will. These rarely worked, and were replaced by naming a proxy or surrogate to make decisions for you (durable power of attorney for healthcare, in legal jargon). This is what most doctors and hospitals now recommend.
Unfortunately they don't work that well either. So this article is suggesting the third stage in AD forms is to combine naming a surrogate and leaving specific directions about when you would prefer comfort care and DNR over CPR and being transferred to an ICU (where you must go after CPR).
If your doctor says she wants you to fill out an AD, you need to see if it is the second generation form, or something that specifies when you would prefer comfort care so it isn't all dumped on your family.
That's the first clarification.
The second is that you will need to address both being fed by a spoon (soft tasteless food) and (even more importantly) being 'tube-fed' by a surgically implanted tube into your stomach. I suggest a firm to no both, if you have dementia, but it is of course up to you.
If your senses are intact enough to enjoy food and feed yourself, then it is OK to accept minimally invasive medical care. Once you have no interest in food, and need to be coaxed, it is time to change to comfort care.
29
thank you for these very practical points, especially about the feeding.
3
Regarding being fed by a spoon - I urge caution here. At the end (the last two weeks), my father was in an inpatient hospice facility. He had Parkinson's and advanced dementia. He had no interest in eating and he had failed the swallow test in the hospital. I said no to the feeding tube because I understood that it actually is contraindicated for advanced dementia. It does not prevent aspiration pneumonia and can actually make the end worse. So once in the hospice facility, he was no longer surrounded by the beeping sounds and the sterile environment and perked up a little bit. He asked for chocolate ice cream and an egg salad sandwich! They served him tiny portions and he was so happy. This went on for about a week - every so often he wanted to eat something - just a bite or two. But in general, he really was eating very, very little. Just because he could not feed himself, does not mean he could not enjoy the experience.
4
The most heartbreaking aspect of long term care is hearing a family argue over Mom's end of life options. In front of their Mom.
Please remember there is no cure for dementia (after all possible causes have been ruled out such as drug interaction or infection), drug companies that sell dementia related medications push their product even though there are negligible results for most, and aggressive medical treatment is often a tortuous ordeal for the patient. Instead of DNR consider a AND or Allow Natural Death.
I have also witnessed family members who keep their family member alive out of spite. The abusive spouse or parent has a stroke and their victims use their power of attorney to exact revenge through just enough medical intervention to keep them alive and miserable. Staff has to respect the family wishes if the patient can not speak for themselves. Remember that.
Be prepared and make your peace before others decide what is best for you.
16
Worried about Alzheimer’s? Do something! Not only diet and exercise, there are two main clinical trials looking at AD prevention: Generations, looking for those those who have APOE4 copies which increase likelihood of getting AD, and the Early trial, which looks for people who already have the causative AD protein.
3
huh. my husband, exercising all his life, eating broccoli every chance he gets, no Alzheimer's in his family, was diagnosed with Alzheimer's two years ago. Yup. No risk factors at all. Random, I tell ya, random.
2
A word of caution for those considering advance directives that contain specific treatment wishes which depend on one's state of health in the future. These are commonly called living wills.
Wishes often change and one's medical state can be very complex and variable. But the terms in living wills are immutable and cannot account for these factors. That's why I believe the most important and valuable advance directive is the one in which you designate a medical decision-maker.
As a doctor noted in the article, “'We need to have families involved. . . .No checklist on earth is going to cover everything you encounter. Most important is the conversation with the decision-maker. That person has to understand what you value and what’s important to you.'”
But what's not mentioned in the article is that the terms of living wills can be used by medical professionals quite arbitrarily to challenge the authority of decision-makers.
It happened to my sister and me at two different hospitals that were caring for my parents, both of whom had terminal illnesses. In short, the hospitals provided treatments that technically violated the terms of our parents' living wills, until they decided not to and then invoked the living wills to challenge our authority. My father's hospital had him sign a DNR while he was under neurological observation on the day of my mother's funeral! When I later revoked it, they went berserk.
Having been through this ordeal, I will NEVER sign a living will.
10
My plan is to ensure those who abuse the elderly--especially those with Dementia--spend their remaining years in federal prison--or other forms of justice. Either way, an eye for an eye to you abusers.
2
The woman featured in this article is a (relatively) young 71, not suffering from any disease (mental or otherwise), still creating, still painting -- but the picture accompanying the introduction to the article shows her sitting on the bed, looking forlorn. WHY?? Why are we introduced to her looking like someone we should feel sorry for who is in imminent danger of not finding her way to the bathroom? WHY???? So depowering.
30
Great question!
10
I agree -- just looking at her depressed me.
1
Yes my question also. I assumed she was already in a home. For an artist, that bedroom sure looks like a hospital room. Odd.
1
I've had multiple head injuries (lousy but persistent athlete), and fear the damage will eventually catch up with me. My attorney said my advance directive, which specifies that I want zero medical support if my mind fails, will not be honored here in Tennessee. So tell me: How do we convince doctors that it isn't a great triumph of medicine to extend the life of someone who would prefer to go quietly when their functional life is over?
30
Are you sure you didn't misunderstand? These documents don't usually carry across state lines. If you did your advance directive in a different state, it may just mean you have to do a NEW one in Tennessee. (Lawyers ...)
3
DW: Ha! At first, I was hoping I did. My latest will and medical directive were written in Tennessee, where I presently reside. My attorney told me that doctors here have tremendous leeway, and would likely choose to ignore my wishes. They constantly blather on about 'right to life' but apparently there is no right to end suffering or a pointless existence.
3
Think nothing can be done for dementia? Google "Functional Medicine dementia". Pick an entry and read about it. Something can be done about dementia. Don't take a conventional medical practitioner's word for it. Reading the comments here is hair-raising, frightening and sad, all at the same time. Go read what these guys are up to, using the latest science to attack chronic diseases. You'll be surprised.
2
Another excellent piece by Paula. I am forwarding to several colleagues in the home care field. This is definitely something that needs to be addressed more aggressively for our generation. Thanks for the information.
7
Although the level of symptoms is important, it might make sense to build in more specificity on living arrangements in the advanced directive. For example, a problem with this part of the advanced directive "To only receive care in the place where I am living. I would not want to go to the hospital even if I were very ill", is that it seems Medicaid much more readily funds nursing home care that is very similar to hospital setting than it funds many less restrictive (and less expensive) memory care alternatives.
5
Excellent article, thank you!
3
EPISTEMOLOGY w/30 years experience that matches my own as a medical attorney is "right." IF you want a "sense of control" as many say, then get tangled up w/state-level forms and papers. Any ambiguity throws a patient back into Standard Operating Procedures/SOPs for MDs and EMS and hospital administrators.
IF you want a "DO NOTHING except comfort care with morphine and methadone or atavan" for a peaceful end, plan for hospice inpatient care over the last 2-3 days. Guarantee access to drugs by IV that work. Make your written and notarized -- works in ALL states -- POLST for EMS and MDs advance directive by adapting the plain-English two-page document available to all -- no charge:
INSTRUMENT # 2013020520 from the Clerk of the Circuit Court, Sarasota County, FL filed FEB 2013. PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT JOHN W. CAHILL BY POWER OF ATTORNEY TO NANCY E. CAHILL, JD.
Sandra Day O'Connor, retired U.S. Supreme Court justice, spelled out our constitutionally-anchored "right to refuse treatment" in 1990. This publicly available document is anchored in our constitutional protection -- being used daily by many families in many states. It's greatest virtue is that it is not subject to the whims and vagueries of Red or Blue state legislators or battling family members or unprepared local judges.
18
how to find it?
1
yes, and in California, there is the POLST and the Power of Attorney for Health Care. And in your Advance Directive, you can name an agent, who makes health decisions for you.
1
The only rational response to dementia is physician-assisted euthanasia or by your own hand extinguishing your life. Best to do it, while you still have a life, prior to losing the ability to plan and complete.
29
That is what the late Professor Sandra Bem did. She was a renowned psychologist at Cornell, who took her own life upon learning she was diagnosed with dementia.
http://www.post-gazette.com/news/obituaries/2014/05/23/Obituary-Sandra-B...
3
Thank you. I agree.
I wish I had a nickel for everyone who said they would rather die than 'be in that situation' or 'in that stage of dementia' or 'have to wear a diaper' or 'be unable to see' or 'not able to feed myself'' or 'be unable to walk' or 'be unable to speak' or 'have a home-health aide' or 'not able to recognize my family' or 'not able to use my fingers' or 'have someone wipe me'......etc. Or, maybe some combination of these states of being? Where do my preferences fit in this schema? Even the 3 stages cited in this article may be too simplistic? Oh, I know. When my time comes, I can put my choices in a complex, multi-factored algorithm. Easy!
5
Put all the words on paper or the internet you want, but the doctors will listen to your next of kin every time over the document. Choose wisely.
19
As the population ages, many more people will experience dementia of all kinds, and the need for advance directives that cover the right to die from all causes will become more important than ever. But we're still up against legislative stonewalling largely spearheaded by religious beliefs. Then there's the argument that relatives or doctors might try to convince a vulnerable patient to take their life before they're ready. Yes, this is an issue, but it can be addressed with safeguards built into the directive.
My grandmother and mother had Alzheimer's. I know what I'm talking about. I demand the right to die while I'm still in charge of my faculties. The image of Robin Williams hanging himself because he did not want to live with Lewy body dementia haunts me to this day. This wonderful man, who inspired millions, had a family that could have held his hand and said goodbye on that fateful day, if we had laws in place. Instead, he died violently and alone. How unspeakably tragic.
The advance directive is an important document, but for it to be 100% relevant, it must include the right to end my live peaceably and in the company of loved ones, not only if I have a terminal disease like cancer, but also IF AND WHEN I get an Alzheimer's diagnosis. Hopefully that day will never come, but if it does, I want to be ready.
36
State law enters into the mix. Here in Oregon, if a person is living in a facility as opposed to at home, despite all advanced directives and polsts, staff is required to "offer food", as in spoon feeding. People in advanced dementia reflexively open their mouths when items are presented to them. My mother, in hospice, who wanted very much to die, would open her mouth if her glasses were moved toward her face.
14
We had same experience at local memory care facility, even with involvement of hospice and medical POA. Our 69 yr old loved one, with young onset Alzheimer's, who was a medical Dr, was fed for months because of this reflective action. Staff was required to offer spoon of food 3 times. When that part of his brain finally stopped working, he died within a week. His death was fairly peaceful, but the 15 yr journey was NOT.
15
I put in my living will - I specifically refuse spoon feeding, just for this reason.
I included a court case document.
9
I fear that when the time comes to commit suicide I will no longer be able.
23
Go a little sooner?
3
Following a traumatic brain injury caused by brain surgery to remove a cyst, my sister-in-law had a lot of difficulty with her memory and executive (decision-making) functions. Decision-making for her became a demanding task for us, for a long period of time. At that point I changed my advance directive. Rather than the young single mother in the next state I chose two backups to my husband who are retired, live nearby, and have both the time and energy to make the myriad decisions involved in on-going, as opposed to near-death, decisions. Then I wrote them all a five page letter, outlining my wishes in greater detail, using examples of people we all know, and situations that might occur. I listed some family members who might be helpful in the decision-making and support process, and those who will not. It's not a perfect solution, but it's the best advice I can give them, which I hope will give them peace of mind should their involvement ever be needed.
60
My plan is to have a loaded gun and to shoot myself or anyone who tries taking advantage of me as an over eighty person. Don't be a ageism casualty--WE will fight back.
21
I do not find these: Links anyone? NYTimes?
Both The Conversation Project and Prepare for Your Care provide links to the advance directive/durable power-of-attorney forms legal in each state.
1
On the Prepare website, click the Advance Directive button and you will see forms for 11 different states. At the Conversation Project, I couldn't find state-specific information either.
Put poison in a bottle that says: "Drink me when you don't know what I am." That's my plan.
20
Unfortunately it's likely that by then you will also be unable to read.
14
Nicely explained. Being in charge of one's own needs and wishes helps everybody, as decisions remain a valuable guide when we ourselves are rendered incapable of doing so. Of course, having our wishes written on paper apply much beyond the specific confines of dementia. Similar to our directives in euthanasia or medically-assisted death, we must remain in the lookout for foul play. Otherwise, it should provide us great relief, and a sense of control.
1
I have been in the end of life business for 30 years. I do not have a living will. My wife, who knows me well, will speak for me if I cannot speak for myself. When caring for people with dementia, I would much rather consult a loving family member than a document, however cleverly drawn. As a matter of law, if there is any seeming contradiction between what the loved one you have appointed as healthcare power of attorney says you wanted, and what the living will says, a judge will make the final decision.
Living wills are an important innovation for those who do not trust their loved ones to carry out their wishes. For the rest of us, loving, caring family are better at informing the healthcare industry about our end of life care than a cold piece of parchment.
In short, if you appoint a loved one as power of attorney for healthcare, they get the final say. If you sign a living will, even if you have a power of attorney, a judge gets the final say.
9
And if your wife dies or becomes incapacitated before you? And if your other loved ones disagree about the course of action to be taken? You do yourself a disservice not to have this plan laid out by you, to be followed if no one is left or can't agree.
10
what if your wife dies before you?
6
And everyone out there has some family members still alive and able to speak for them ... what arrogance. some have to prepare without a safety line ... that's why these discussions are happening.
Where can I find a copy of this advance directive?
1
see the link in the article
1
“They have potentially many years in which they wouldn’t want a directive that says ‘do not resuscitate,’” Dr. Gaster said.
What is our hangup here in the US with DNR/DNI? As a medical professional, I can’t tell you how often hopelessly ill or very aged people fastidiously remain FULL CODE, despite all of our best efforts to explain to them and their families, in detail, what that means (broken osteoporitic ribs included). If nothing else, it means that I have to cause suffering to you in order to bring you back to life.
There is nothing wrong with being allowed to die a natural and unprolonged death.
We have got to change how we think about death in this country.
94
Indeed, it's amazing to me how utterly terrified of dying so many are. The fact is it's going to happen. We can 'beat it' maybe once, maybe twice, maybe even three times. But eventually we will 'lose' the battle.
I find it interesting, how rife our everyday vernacular is, with sending home the message of death = bad. 'Death and taxes'. 'I'd rather be dead.' Etc.
What exact is it that we fear?...the moment when we are actually dying? Or is it what comes after that...the wonder of whether or not we have some other type of 'experience'?...or no experience at all? Has anyone ever come back from the other side to tell us 'oh boy...you are right to fear death...you have NO idea what you are in for!'??
I think it's a simple fear of the unknown. And a total lack of comprehension of 'why' this happens...how can someone right next to us...who is talking, preparing a meal, giving a speech, designing the next technological advance, etc. ...how can such a person be 'gone' in an instant? As for fear of the unknown, I would posit that each day on earth we are living the unknown. We have no clue what the next hour or day might hold for us. We could be hit by a car, swallowed by an earthquake, served divorce papers, etc. Why is the idea of death...of Being dead, so much more terrifying? I've no reason to think that being dead could be any 'worse' than life itself, and its many potential difficulties.
9
Thank you. If I should develop dementia I would not want my family and loved ones to suffer needlessly.
13
When I downloaded the directive, I noticed that there is no place for the signature of a witness. As this is a prominent feature of my existing health care proxy form, would this document have any legal standing?
11
Unfortunately, advance directives are only legally binding in a handful of states. It's the medical power of attorney that rules in all the others, so you have to make sure you appoint someone who would not be afraid to stick to what you wanted. Those without such a person in their lives had better move.
2
Not only should there be witnesses, this document should be notarized, and should have an affidavit attached to it that notarizes the witnesses signatures in case they cannot be found. Basic law. NYT, you have legal counsel: fix this.
3
Conway Burbank — Just modify the form yourself to add lines for witnesses. Also, if there are matters of substance that you want to change or add, do that too. Nothing prevents anyone from personalizing directives.
When my mom died (at 101) she had been on hospice care for the very unusual time of over two years - she kept meeting the criteria and being renewed. For that period, she was in a full fledged, do-nothing-heroic, legal state. Still she lived on, deeper and deeper into the dementia that had become evident at 97, and by my observation extremely unhappy. As it was not Alzhieimer's, it was not fatal, and her healthy body kept on working. I do not want to repeat that as my final time for sure, and all the discussion about the emotional turmoil and financial nosedive with that kind of end just adds to my determination to make the decision for myself now while I'm still (more or less) of sound mind.
82
For profit hospice care makes their money off continuously recertifying. That's their business model. Every day in hospice is another dollar for them. I dated someone who sold hospice service. It's disgusting.
2
I looked at that directive and saw this statement at the end of most of the care choices: "Reason why: I would not want the possible risks and trauma which can come from being in the hospital."
Simplistic language aside, there's a huge nit to pick that I'd like to make here. Where is it stated that "I would not want to have to lie facing a television set blathering moronically -- something I do not even own, thank you -- or being chirpily spoken to by a bunch of nincompoops (paid personnel or volunteers) day in and day out that I'd never have tolerated near me in happier days.
Nope. That kind of suffering isn't for me. Suicide is the best and only answer for smart people (so far.)
49
Wow. The pain of my mother's dying from the late stages of dementia caused by a medical condition were alleviated so much by my knowing that while I could do nothing to contribute financially to those underpaid caretakers who did the sacred work of caring for her, they were doing it because they genuinely felt a calling. They were not nincompoops. Nor were the volunteers who brought in lively music and encouraged the patients to sing and clap, who did free reiki, or who did hand massages and engaged my mother in conversations she found difficult.
Your casual dismissal of them as nincompoops pisses me off.
51
Don't worry. If you are in a hospital you will likely be ignored for long periods of time. They have neither enough staff or volunteers to hang around chirping.
11
Add lively music, singing and clapping, free reiki (whatever that is), hand massages and conversations to my list of suffering which I have no intention of enduring in my final bout with life.
2
The main thing to do is to have fun and drain your savings as many people are like Trump and his deplorables--they will steal everything of value from you, so don't give them a chance.
19
Why would I want to drain my savings? Maybe I will live to be an active 100.
I'm a very healthy practicing attorney. I never get sick. I have very low blood pressure and cholesterol. I work out everyday and have a very healthy home-cooked diet. I'm 67 and look 45. Your cynicism is icky.
But if I ever do get very ill and lose my independence, I have left explicit instructions to pull the plug.
If there is any money left over, I am thrilled to help my brother's children, and help my grandchildren or even leave money to a nonprofit.
And FYI -- I am having fun regardless.
2
Of much greater concern to me is what happens before your medical condition predicates intervention. I just watched someone with dementia/brain damage spend 4 years destroying their life and the lives of loved ones financially and emotionally. This is because the law doesn't consider "the inability to make decisions" as anything short of a literal vegetative state. That stands despite having a clear diagnosis of dementia, brain damage, etc., even with power of attorney and advanced directive. Nightgmare. Our society is very consumed with the rights of the individual even when that individual is mentally incompetent. Where is the middle ground on this?
45
I live in Israel, where I went through a process (she went through tests and examinations, meetings with a social worker, a nurse, a doctor, with much resistance) to be appointed as my mother’s guardian by the family court. My mother lost control of her bank accounts to me, and she hated me for it until she no longer understood anything. But I was thereby able to get her the assistance she needed, even if she claimed that she was fine. Her executive function was kaput before the worst symptoms, and it was a necessary step.
6
I should add - the family court requires reports on spending, so that control of my mother’s account did not mean that I could empty her account or use it for myself. I had to submit a detailed expense report and bank statements each year.
5
Actually, the courts grant guardianship to a petitioner in cases of dementia diagnosis and brain damage. Guardians can be appointed to make both financial and medical decisions. Here's a useful link: https://www.alz.org/national/documents/Adult_Guardianship_Factsheet.pdf
2
Sometimes one can get into trouble, when the mind doesn't fade, over certain things! Having a steel trap memory isn't necessarily always a G-dsend...
4
Nobody "stumbles into the advanced stage of dementia" except through denial. There's no routine cognitive testing for something that you have a huge chance of getting after age 70. Even in Holland, slippery slope supposedly, you will only have 100 proactive Alzheimer's patients out of 45K that will choose medical aid in dying. The other 44,900 are content to live life out to the bitter end. My plan is do my own testing, the SAGE test from the University of Ohio is good. Catch the early stage. Then here in Canada we have an evolving "medical aid in dying" guideline. It now includes stuff like severe arthritis pain with less than 10 years of life expectancy. If I get rejected here, then I will spend the 30K to take the "business class to Zurich." There is no dignity with Alzheimer's. It's a disease of selfishness, with the entire burden dumped onto the low-status primarily immigrant women who do the caregiving. It smacks too much of "massah and the slaves" to me and is a ridiculous waste of money.
42
With so many readily available ways of killing oneself, I've never understood why people insist on getting physicians involved in it.
4
A business class ticket to Zurich from North America costs much less than 30K. You can use the rest of the funds to enjoy Europe, have nice meals and take in the art and scenery. All these add to one's quality of life - something we don't talk enough about when discussing health care in the later years.
2
I agree. The best one, to me, is the terminal fast. Hospice will help with this in most places. 10 days to two weeks is the average time from the first day you deny yourself water and food.
1
A must book for us all to read is Final Exit(The Practicalities of Self-Deliverance and Assisted Suicide for the Dying), by Derek Humphrey. Palliative care just won't cut it for many of us.
Americans should enjoy a right guaranteed in the European Declaration of Human Rights -- the right not to be forced to suffer. It should be considered as much of a crime to make someone live who with justification does not wish to continue as it is to take life without consent.
53
i don't believe that this book covers a terminal fast, which seems the simplest and easiest for most people.
Everyone should have such documentation. Father in law? Alzheimers, Mother in law? dementia. As personal rep on more than one will for other people, the Terry Schiavo case was very relatable. A busybody right to lifer had to have a restraining order placed to keep her from a family. In another case, the hospital priest had to be removed. Make your wishes known to your entire family up front and don't become another cause celebre for the right to life crowd.
32
Good. But my state, NY does not recognize these directives as binding. Our medical system is in a conflict of interest. It is paid for services, but what it the service is to let myself die and end the services they can bill. But by orders or values they may want to bill in an all out, nothing not done effort to continue life?
22
This is well-intended but the real problem with tailoring care to one's needs and wishes is that the healthcare system is too fragmented. As a Family Physician practicing in one site for almost 30 years, I can tell you that a patient going to the hospital is treated like a complete unknown. The primary care provider is almost never consulted and the family is on their own. The forms are just a part of the ongoing relationship between providers and patients that gets lost in the shuffle. Getting to know a patient, their wishes and helping them understand what may happen doesn't occur in one visit. It takes time and commitment. We need a radical return to a comprehensive relationship model of healthcare so that once discussed, a patient's wishes are respected. We had this not so long ago but economics has caused it to wither.
220
We lost my grandmother to complications from Alzheimers three years ago this week. As she was being treated, in and out of doctors offices and emergency rooms and long-term care facilities, I carried a folder of advance directives with me from place to place. I kept extra copies in the car. The first thing I did every time she was being admitted was to ask for the attending physician so I could give him/her copies as well. You are correct in noting how broken the system is, and how much better it can become. But this story and this comment thread can at least show patients/families what they're up against and how to make their wishes known. If there's one thing caregivers are pretty solid at, it's persistence.
33
Dr. Merrill has pointed out the serious flaw in our struggling medical system. Regardless of diagnosis, limitations, actual physical and cognitive abilities most of us will be admitted to a hospital through the ER, transported by ambulance with no information from records or even texts with the patient's physicians. A blank slate to the ER staff, most will have hours long waits in the ER for attention. My husband is 93 yrs old with Alzheimer's with Dementia - confused by noise, unfamiliar places, unfamiliar procedures... The hospital is not a safe place for him to be. We have the MOLST Form and legal documents to protect him - at home, at adult daycare, my job is to keep him safe. Dying is not de facto 'a bad end'. Dying is natural. What we do to to try prolong life can be a hodgepodge of misinformation, misunderstanding, and outright disregard for the legally recorded wishes of the patient. The 'modern' hospital complex is a reproduction of Henry Ford's assembly line- one flow chart fits all.
20
Thank you. A "comprehensive relationship model of healthcare" still exists in many countries. Based on my experience 60 years ago in the US and now outside of the US, "Getting to know a patient, their wishes and helping them understand ... takes time and commitment."..is still a matter of course. In these countires, the family physician provides a much better quality-of-life long before any directive is needed.
Note: The US is ranked 49th in quality of care and 2nd highest in cost.
17
Dementia isn’t a prison it is purgatory. Day is night and night is day and cocktails to control aggression and mood have to be constantly adjusted. Food has no taste, and help is needed for every custodial need. They breathe but do not live. No thanks - soylent green me - a much more humane ending than purgatory.
59
What is the point of writing all these depressing articles on Alzheimer's when there is no cure for it yet?
2
Did you read the article? The point is advance planning, to sign a document that enables a person with a high likelihood of developing Alzheimer's to not be kept alive in a situation where they would not wish to be kept alive.
49
Do you think at that point you even care or know what is happening to you? And what if there is a cure by then? This is not the first time I see people writing about how bad Alzheimer’s is and making the article even more miserable by adding friends a sad picture. I expect NY Times to encourage big pharmaceutical companies not to halt research in this area instead of writing articles like this which has no good.
1
@Hossein: Those suffering from dementia still have the capacity to suffer. And if a cure becomes available, I presume that it would be offered. Again, I believe you have missed the point of the article, which is to propose that people prepare for a time when they may not be able to express their wishes. Advance preparation of this kind does not preclude ongoing research into the treatment and prevention of Alzheimer's and other forms of dementia. Why do you react as though these are mutually exclusive aims?
13
What my elderly mother with Lewy Body Dementia wanted but couldn't have was assisted suicide. Consent is issue with dementia. She declined slowly for more than two years and cried that she didn't want to live this way - death by inches. She had palliative care and was made comfortable but could do nothing for herself and had no quality of life. That's one thing missing from this dementia advanced health care directive that I want for myself. If I can no longer feed or clean myself I want it to end. Assisted suicide is permitted for other terminal health conditions and the same should be made available to plan for dementia patients because it's a cruel end.
231
My father had terrible dementia and it is my greatest fear of growing old. I have all my advanced directives, but don't have sufficient confidence they will be carried out despite their air-tight legal nature. I am tempted to discontinue regular medications that I may be on in my mid-70s (Lipitor, Cumadin, etc.), the age that my father started losing his capacity, to help ensure I don't live long enough to ever go through what he went through.
146
Paul if you just discontinue all your medications then you might set yourself up for other health conditions that might not kill you but make you suffer more. There’s Alzheimer’s in my family and I sent this article to my two remaining sisters who I fear for also. Selfishly I’d rather be the one to go first but perhaps I would be OK being treated if I was in the mild stage but also happy. Anything beyond that I honestly would try to find a way to put myself down in a loving way like I can do for my beloved animals.
22
Make sure to not pay any more taxes and spend all of your savings to prevent others from taking it.
2
My mother had a lingering dementia of 15 years, also my greatest fear. But stopping your medications won't help. If your health status suddenly changed, you would be hospitalized and you would be restarted on all those meds because it is the medical-legal "standard of care". You wouldn't have any veto power. In fact, if you stopped coumadin, you might suffer a stroke and actually prolong an impaired life. Your best bet is your healthcare POA must know your mind and be your STRONG ADVOCATE!
7
I think any person of this age have seen others in the past But without much scientific proof and with larger families in past I got to know so many elderly persons up to their nineties not afflicted by dementia or alzeihmers.
Why there is so much cancer dementia and alzeihmers adjusted for population suggests need for causes.
it is going to get to a point people while healthy may only take the only logical step kill themselves before xxx age which perhaps is the intent
4
I decided back in my 60s -- I'm now a strong, healthy and employed 80 -- that I would kill myself when I felt life was no longer full of fun.
Suicide is a personal choice, Cardoso. Worry about yourself, leave the rest of us alone.
14
My precious Daddy died of Alzheimer's, and I know he would have hated living as he did, no longer able to care for himself or communicate in any meaningful way. So like many writing here, if I develop dementia I do not want to live with it, staring blankly into space, being lifted by hoist from bed to chair and back again. And I have exacted promises from my husband and my dearest friend, a former U.S. Attorney, to do everything within their power to find a way to end my life legally.
Still and all, two incidents leave me with ever-so-tiny doubts:
--Once when Daddy had forgotten every name but mine and had long since been unable to communicate beyond saying hello to me, I gave him a cantaloupe-colored polo shirt for his birthday. He didn't acknowledge the gift, nor even appear to notice. But then, easily six months later, when he was wearing the shirt, I said, with my usual effort at bright prattle, "Oh, Daddy, I like your orange shirt." And he turned to me and said with a smile and perfect coherence, "Well you gave it to me!"
--Another time, toward the end of his life, long after he'd forgotten my name but before the light went out in his eyes, he was speaking his usual gibberish to me, and I said, "Oh, Daddy, I'd kill to know what you were saying." On a dime, his expression changed to rage, and I had to cajole him back to his usual sweet temper.
Could it be there is more is going on in those plaque-clotted brains than we know?
42
Maybe. But what about the other 99% of the time?
9
Yes. Oh, that is heartbreaking. We were fortunate - well, "fortunate" is totally the wrong word of course, but in the sense of "Things could always be worse" - that when my father gradually lost language and gibberish started taking over, for a long while he did *not* lose the ability to laugh at himself. He would say something that almost half made sense, but the last couple of words would come out totally mixed up - like, "You know what I'd really like for dinner?" - pause while he looked for the word - then: "carburetors" or "alarm clocks" or "shoelaces" - then realize what he had said, and start laughing uproariously.
5
Yes, Steel. We do not know enough. I have seen this also. People in advanced dementia suddenly completing bible verses when bible readings occurred during services on dementia units, people singing beloved hymns. These are people who rarely vocalized. Staff were shocked when witnessing these incidents.
Dementia cries out for more research, including of behavior of those with advanced dementias.... in other words: qualitative research and observation. We do not know what we do not know.
5
Please understand there is widespread level of services. At least in Florida.
Who is ur doctor? No longer ur well known primary? He or she may not admit.
He or she if he admits not a hospiitalist
may see u but the specialist may be in charge.who come in groups Depending on ur insurance and many elderly trust more the sprouting clinics you may be restricted from better hospitals
Money and wealth prevail in the level of care to recover health or die a peaceful death.
3
The worrying undertone in every comment shows how thought provoking the article is. There is no 'right' answer, just the one you make (or don't.) A medical alert like medallion addresses document availability for me, I can't control whether my wishes are respected. PS: In case I forget, Thank you and goodbye.
10
Death is inevitable timely or untimely death of those we love or love us best is a terrible pain in our spirit. Even if in time we are at peace for them or for us. Dying alone is much worse or for unfortunate ones that live in homes while many profit from them. Most old persons have seen more ill persons than today that families
live apart and other illnesses appear
There has to be research on these illnesses and their causes. Death is nothing new but why people are succumbing to these diseases is an issue as the viability of not succumbing. And dying of something else.
But instead of celebrating the positive the sick and the old are a source of profit to clinics to poor quality homes to disagreeable ads. This is a good article but how much of this do we need.
Who does not know about directives.
The intensity of media on this subject in the absence of balance is abhorrent.
While this is a reality it is not for everyone and will not cease until the US as in some countries we may ask to help us die once past 65 or younger.
As I was a child people died of heart and other diseases but any or old I knew 80s and nineties all were of sound mind but normally arthritis was the worse. Those that then were reportedly mentally ill and in a time of no drugs of today were young.
Suicide only is the true and only avoidance.
........and I fear as often as this articles appear the objective long term that intellectual and disabled people have identified
2
It was called' senility' - believed by many to be part of aging. The care was usually provided at home by family - remember the large families who could share responsibilities for those who had financial, physical, or aging needs. If needed, Rest Homes took in elderly who needed watching and help with daily living. There were few if any regulations and care was not complex. Many would die of pneumonia - "the old man's friend' - before antibiotics. Everything is much more complex now - life in general, medicine's vast increase in knowledge and treatment. Moving illness, treatment and death from the home to the clinical facilities has left many with little or no understanding of the processes of living and dying. There are options for all of us - but we have to continually ask questions and assume our real, legal responsibilities as caregivers, with legal documentation to protect the choices made by our families and friends.
10
Everyone of adult age should have a directive not only our parents. A former New Yorker I inform in Miami Florida u are asked for that directive if i go for cataracts or a minor surgery. Younger people in accidents or other as well may find themselves critically ill.
The worst aspect is that major hospitals here do not have a Hospice Wing. So people get farmed out to substandard hospices where conditions are deplorable
Not all illnesses are easy to be managed at home in end stage and in a recent article here or WP that was explained by a reader
The elderly under normal income have become a source of income at the expense of quality.
9
Helpful informative article but it fails to acknowledge that Advanced Medical Directives are routinely ignored by hospital physicians, particular in E.R. It has no legal or compelling force.Even the POLST--Physician Orders for Life-Sustaining Treatment--which is legally binding is often ignored in E.R.
This does not address the wishes of those who do not desire to live beyond the milder cognitive decline stage. That's terrifying to those of us who have watched loved family members "live"--if you can call it that--beyond the early stages.
Regrettably the only alternative is suicide before one is no longer able to make and carry out their "exit." This deprives them and their family and friends of the years when it's still possible to enjoy the blessings of life and relationships.
23
Where is the link for this form?:"For each stage of dementia, the patient can choose among four options. "
3
It is the first link, in the second paragraph of the article.
4
I guess I'll move to Oregon.
8
i suggest you read the article in this Sunday's New York Times Magazine before making that move.
1
Maybe the west coast of Oregon?
The final choice in the Directive for Dementia is extremely vague. To quote:
".... I would not want ANY CARE that would keep me alive longer."
The "any care" should have been spelled out clearly. Is giving a glass of water to me not keeping me alive?"
It is best to spell out when you don't want food and water provided to you. There are several stages of one's ability to eat and drink. At what stage do you want no help with food or water?
Having witnessed four siblings in their final stages of dementia, I think the directive for food and water should be spelled out as explicitly as possible.
144
And "any care that would keep me alive longer" include medications such as cuomidin, insulin, heart and blood pressure medications. If those medications were basically keeping me alive, I would want them discontinued.
5
Look at POLST: physician orders for life sustaining treatment. Best for nursing home and hospitals but anyone with advanced stage of age or illness should have one. Clearly defines care options.
Why should food and water not be included in that "any" care, Jaque? Any care means any and all care, to me.
A dish of awful, awful Jello, forced on my dying mother, was the worst case of "caring" I have ever witnessed. She'd never have touched the stuff had she been able to fight for her rights. (I fought the nitwits off for her.)
4
I just read an article about end of life care, and learned that in one survey, almost 60% of doctors said they would ignore a valid DNR that they knew to be available, on file. In another, 89% of academic medical doctors said that they would want to forgo aggressive treatment at the end of their lives, yet the majority of doctors said they would provide aggressive care to their patients at the end of their lives.
25
It would be helpful if this survey had asked why so many doctors would act this way. Are they afraid of being sued by family members?
14
They would provide aggressive care against their patients’ wishes? Or that they would provide aggressive care if their patients (via advanced directives), or their patients’ proxies requested it? There is a difference.
2
Do they realize that aggressive care would just return them to a life of living hell but with the added indignity of being bruised, battered and even more confused and afraid? Gee wiz. Don't do me any favors to satisfy your (doctors) misguided but well intentioned--what? If they could step out of their minds and put themselves in the patients place (with full knowledge of what that patients daily "life" is, which is unlikely because how can any ER doctor read through all the files?)---would they want aggressive resuscitation? CPR, shocks, etc? I think not.
1
A designated decision maker might not fulfill a posited-in-advanced death preference if such death might end income (e.g. social security|annuity|pension).
8
whatever her future, she's a beautiful artist who paints beautifully.
50
Based on these lifetime risks, men have a 70% chance and women a 63% chance of NOT getting dementia.
Another statistic. Most of us won’t have children around to be sure we’re not abused in “care” facilities. We’re going to need more openness about assisted dying.
71
My wife and I both have standard Virginia advance directives. One portion gives reads: "I provide the following instructions if any condition makes me unaware of myself or my surroundings or unable to interact with others, and it is reasonably certain that I will never recover this awareness or ability even with medical treatment." This is followed by a series of options quite similar to what is seen on the dementia directive mentioned in this column.
How many disease-specific directives should be provided for those situations most likely to kill us, some giving us plenty of time to consider, others not so much?
I agree with others here that implementation is a big problem. No matter how this "contract" is crafted, enforcement is spotty. Is this to be done on a state to state basis--not such an odd question given our politics?
This discussion is worth a look: https://www.nrlc.org/uploads/medethics/WillYourAdvanceDirectiveBeFollowe... ("Will Your Advance Directive Be Followed"). I do not agree with all of the focus there, but understand why it was written. Many states (38) allow physicians alone to deny life-sustaining treatments when they deem the "quality of life" too low.
We need a better national system, one that ensures compliance by medical institutions--but can still resist unreasonable requests for life-prolonging treatment. This is a tough one--but does not deny the need for families to address the concerns.
19
I am overseeing my mother's care. She is 92 with advanced dementia. When I read "...any condition makes me unaware of myself or my surroundings or unable to interact with others" I believe this can be interpreted many ways, depending on the personal beliefs of the care provider and doctors. If someone puts a spoon to your mouth and you open it, does that constitute interaction? Some care providers would say yes.
Some directives state as one condition "do not feed me unless I request food." I had to fight to get the care provider to stop plying my mother with nutritional drinks. My mother would open her mouth when a straw touched her lips, which was interpreted as "asking for the drinks." This same care provider said that when my mother's personal funds were depleted, she would not accept medicaid and my mother would have to move.
39
Planning for the worst case is sensible, but preventing Alzheimer's by daily efforts is also sensible as long as our approach is following the right medical suggestions. "There is no medicine for Alzheimer's !", this is what we hear from Alzheimer's experts or from our doctors. However, these people expect a miracle medicine that has never been developed by the pharmaceutical companies. Many researchers without pharmaceutical funding have turned out meaningful treatment methods. One of the examples is Dr. Dale Bredesen of University California, Los Angeles, San Francisco and Buck Institute, over 30-year researcher of Alzheimer's. He came to a conclusion that (1) Alzheimer's is a multi-factorial disease (actually 36 causes), and (2) the best way to treat Alzheimer's is to use multi-therapies (actually 26 therapies). Following his advice, I have been taking annually various labo tests such as A1C, insuline level, vitamin D, homocysteine, testosterone, CRP etc. even though my doctor complains, "What do you do if Alzheimer's hits you next year?" I always say to him, "I will contact Dale Bredesen's office" because he has been training doctors nationwide that use his protocol. He did this in last December in my area. Miami. He has treated about 100 early Alzheimer's patients with great success, and is now treating over 600 patients via his network of doctors. Most of his therapies are based on lifestyle change. If you are interested, please read his book or watch YouTube.
13
Too many red flags. https://respectfulinsolence.com/2016/06/24/the-mend-protocol-for-alzheim...
6
Thank you!
2
Thank you for this article. We do need to plan ahead (pun intended!)
I have designated three MD colleagues as "deciders" and they know my beliefs well. I chose to not appoint my two adult children for the reasons mentioned in this article. I am 65 y.o.
One also needs to plan for funerals and need one's wishes known and documented, because by that time, one can't jump up and say, "no silk lined mahogany coffins, please", and so on.
23
All plans that involve other people are sure to fall apart once you're dead. Face it, Doctor.
What we need is a device that can be worn -- much like the devices used by diabetics -- so we are able to inject ourselves with the killing dose when we decide it's time to sweetly end this.
I hope it's available very soon.
4
" Over the past year, as patients turn 65 and qualify for Medicare — which covers a visit to discuss advance care planning — he has offered them his dementia-specific directive, intended to supplement their other directives.
I have never seen this, though it may be because I turned 65 five years ago, Further, in Manhattan, my doctor - as well as the geriatrics depts. at hospitals like NYU Medical Center and Mt. Sinai -- do not accept Medicare reimbursement for the Medicare "annual wellness visit." If you want an annual physical, you have to pay a consulting fee in the $300 - $400, both at my GP's practice and at the geriatric faculty practices at NYU, Mt, Sinai, etc. So I wouldn't expect this dementia visit if it is in any way related to the "annual wellness exam." It is fascinating to me that doctors, faculty practices and hospitals that are otherise receiving Medicare reimbursement for other things can get away with refusing this benefit.
27
In regard to payment by "health professionals" from Medicare age patients :Over the last 40 years medicine has has become more of a business and less about the people who are the patients.
We have lost a certain humanity. I don't think these people ever consider that many medicare people are on fixed incomes only that paying an additional 300-400 adds to their own bottom line. I read once that the measure of a society is how it treats its old people. I fully expect if we keep on this path that eventually this society will put its old people on ice floats (an old Eskimo practice) and push them out into the ocean to die. Whatever happened to the concept that with age comes wisdom?
8
As far as I know Medicare doesn't cover annual physicals for healthy people who have no medical problems. There are very few people over 64 who don't have some diagnosis of something that needs an annual check: osteoporosis, arthritis, high or low blood pressure, migraine headache etc. You and your doctor can use your imaginations, if necessary, to get that annual checkup with your family doctor paid for by Medicare.
3
I am almost 71 & I have one or two mild things, like a slightly elevated BP that is controlled with medication, exercise, & continuing weight loss, but they still say I need a complete annual physical & refuse to do a Medicare Wellness Check. I try to go in a couple of times a year to give them an excuse to do some tests & otherwise bill Medicare for things Medicare DOES cover, whether I need them or not, & have mammo & breast sono elsewhere Stopped having bone density tests sev yrs ago as doc agreed someone with bones of person 30 yrs younger doesn't need every year.. I think at this large group practice the $300-$400 annual physical is like a "gate fee" for the privilege of their continuing to do business with Medicare patients, as many NYC docs no longer want Medicare patients (I have already been dropped by my ob-gyn)I For the life of me, I can's understand why our NY members of Congress (all members of Congress for that matter) make such a big deal proclaiming their role in enacting these bills that nobody here can take advantage of.
I have had dental bills of $10-$15000 a year the past few years and have had to pay those (actually, borrow money to pay them). But when I saw my "new" GP last month (my old one left) he told me he expected to see me for a physical in June, and I think he meant business -- i.e, if I don't go and pay my $300-$400 I run the risk of being dropped & having to find a new doc. So I just have to decide what to do.
6
You know you don’t die just because you have dementia, don’t you?
My mother is lost to dementia, spends most of her days crying and frightened and yet, her heart goes right on beating. There has never been any DNR situation. She may live to be 100 - she’s nearly there already.
This doesn’t go far enough, I want to be able to choose to leave this life quietly and quickly once dementia is diagnosed. No one should be cursed to live the life my mother is and you can’t count on being lucky enough to have a heart attack.
499
My mother is now in a similar situation. It's incredibly painful and exhausting.
50
Actually, dementia is a progressive and terminal disease, and at the advanced stage, dementia patients are eligible for hospice care.
9
But what difference does hospice care make in such a situation?
1
What does one do when one fears that her highly religious children will refuse to ease her into death? I am designating my best friend to handle these decisions--but she's my age. I expect her to outlive me--goodness knows, she surely tries harder--but I am concerned that my children will feel that their religious feelings outweigh my wishes.
82
My own only hope is suicide. And that's impossibly tricky as things stand. I've seen many people whose attempts failed, and they were left perpetually stranded with even less than they had before. The timing is also fraught with peril, since Alzheimer's has its cruel habit of making one too passive to take that step.
Safe and legal suicide-by-choice, physician-assisted, would be such a blessing. Since it would rid the economy of us "takers," you'd imagine Republicans would be all for it! But you can't expect their aid; they value governmental right-to-choose over human rights, and this is the ultimate personal choice.
107
Just a suggestion, but have you tried involving your children's spiritual leader in talks regarding your wishes? Of course you would want to speak to that person first to understand how they feel about it.
3
... which would, of course, be an outrageous usurpation of your civil rights. "Highly religious" is a condition which is often better expressed as "terminally insane."
26
My father suffered from late-stage dementia. After watching him suffer through two bouts of pneumonia, with active treatment, we subsequently, as a family, and with the support of his doctor, declined active treatment for his next bout of pneumonia, electing for comfort care only. We knew absolutely that he would not want to suffer any longer, and two decades later, we are still sure that we made that right decision for him.
140
You know we can plan, write, sign and have the Conversation with our families and health care proxies, but the bottom line is always going to be this...
Is there someone courageous enough to stand up to the nursing home staff, hospital staff, assisted living staff who may well refuse to act on our stated wishes? Someone to advocate for our directives with the proxy papers in hand, who won't take no for an answer. Someone who will face down the well meaning staff and say "NO this is not what my loved one wanted and we're not going to deviate from his/her wishes, no matter how uncomfortable it makes you feel." Someone who will also stand up and speak truth to other family members who may be second guessing the patient's wishes, or the dire seriousness of the current situation. In short, someone who will carry the decision making on their shoulders and in their soul, long after the patient has passed on. We all need to emphasize to our designated health care proxies that no matter what, we'll be depending on them to stand firm, speak and act clearly and uphold the sacred trust we are placing in them.
375
Thank you for that. I have been that person for my mother (Alzheimer's disease, age 91) and father (Parkinson's, now deceased). But I have been fortunate in this regard for two reasons. First, my mother was a nurse (as am I) and a very practical woman. She told me the day would come when she would need to go into a nursing home and that I should do it for her sake and mine. Second, the nursing home staff and I, as designated power for health care, had a long conversation to discuss all of these very issues shortly after they were admitted within a week of one another. It has been a very difficult road, but I am grateful every day for the wisdom and compassion of my mother and the people who care for her.
25
Sadly, standing up to nursing home or assisted living staff is not enough. These facilities have your loved ones (or your) signature on admission papers that allow them to completely disregard a MOLST or other advance directives that contradict their own policies.
For example, facilities are fully within their rights to offer food and drink to patients that will accept being fed, regardless of a signed request to avoid doing so when it prolongs a life condition that a patient has said would be unacceptable. Even when hospice is involved.
Thinking that we will have control over events at the end of life in all situations is a lie that we tell ourselves to avoid facing the messy, painful and complicated experience of death when someone has dementia.
9
ANother thing you need to ask yourself, especially if you have a limited number of people available for this service, is who among them would be least likely to steal your money, who among them would be least likely to see his/her appointment as a sign of superior status/power? Yes, I have seen both of these.
4
Why don't they just hurry up and find a cure for dementia and Alzheimer's, please.
12
The damage is done slowly over decades. New research is showing that diet and lifestyle changes can help a lot. We are learning. But that puts the responsibility on each of us to actually live a healthy lifestyle in order to improve our odds. I know my own track record is spotty!
13
Im grateful to Paula Span and The NYT for this article and for this regular feature of the paper. As an Elder Law attorney, I handle many Involuntary Guardianship proceedings in NYC courts. These inconvenient and expensive procedures could be avoided with a little planning. To publish regular stories about aging issues the way you consistently do is to provide a much-needed service in our community.Thank you. Brava!
129
An article about Involuntary Guardianship would be a natural topic for The New Old Age, since very few people understand it.
2
I'm having the distressing experience of watching a very close friend cope with his mother's dementia badly. He is deeply in denial about how far it has progressed, and unrealistic about how much cognitive function she still has. So, unfortunately, the paperwork is not in place and never will be. I tried many times to get him to talk to an elder care attorney about these issues, both financial and medical, before she became too disabled to understand and make choices, but he procrastinated and avoided dealing with it. So, eventually, the choices will be taken out of his hands. Sooner or later there will be a crisis, and the fact that her real needs are not being met (she is left alone while he is at work, which is far too long since she is not usually rational enough to make decisions in a crisis) will mandate immediate placement in a nursing home. He will not get a choice. But I think that is what he wants -- to have the hard decisions taken off of him. "Sorry, Mom, I don't want this but there's nothing I can do" is easier than "Mom, you have an illness which will progress to where I can't take care of you alone, and we need to make choices about how to handle that."
Unfortunately, for many of us, there really is no one capable of making these decisions as we would wish. I'm in that boat too (single, childless, no family I would trust or friends who will accept the burden and carry out my wishes rather than their own). What then?
94
Even when euthanasia is allowed, the current mental capacity of the patient is evaluated and someone with moderate to advanced dementia will not be considered as capable of making that final decision.
My current paperwork says DNR and I have instructed my children to "pull the plug, turn out the lights, let it go" if I have any serious illness and dementia. I can only imagine the horror of waking up after a vigorous rescusitation event with broken ribs and teeth, incubated and fed via a tube while in the grasp of dementia - not knowing, remembering, understanding. That is not a way to live.
I'll have a look at the new forms, not old enough yet to have them handed to me, but I'm still working out a plan to resolve things on my own terms before they'll ever be needed if I should ever develop dementia.
95
It boggles my mind that we still continue to maintain that the effort and expense of prolonging the lives of patients in late stage dementia should be up to the individual alone. I think if people were asked how much they would be willing to pay out of their own pockets to prolong their senescence once they can no longer do the most basic things for themselves, the choice would be a lot more stark.
How can anybody in this country who hears about children being denied healthcare, or poor people being denied Medicaid, all justified in the name of affordability, justify lavishing care on aging people with dementia? Isn't this obscene?
Medicare and Medicaid should only agree to cover comfort care measures for individuals in late stage dementia. Then let's see what people think they want for themselves.
220
@DebbieR
You may not be familiar with the current scene. There is now widespread acceptance of the futility, and even cruelty, of "lavishing [medical] care" on dementia victims. The medical community overwhelmingly recommends comfort measures and careful nursing, but not invasive, expensive procedures. Goals of care are discussed with family routinely. On the other hand, one does see sloppy care in dementia units, where for example patients' teeth are neglected or they are allowed to develop itchy fungal foot infections, because aides can't be bothered.
After having observed the illness of a loved one with dementia, I have asked my children to direct my care, should I fall victim to this, as they think best, guided by their love for me, by their conscience and by the amount of resources they are able and willing to spend on me. Dementia can last a long time, and is complex and variable, and I do not believe I can spell out in a living will a detailed guide to every eventuality. The best guide you can leave for your children is the way you lived your life, your example. Unless there is major dysfunction, they will inherit these lessons and the principles, if not all the details, which should guide their custodianship.
21
Nursing homes are still very expensive, even if only comfort care is provided.
15
It is very difficult to define stages of dementia - I have patients who would be considered moderately severely demented who have the capacity to recognize me and meaningfully discuss issues that are important to them. Sorry, but you cannot just define when comfort
care is appropriate - it is a case by case decision, not a macro economics decision.
13
What has been noted here by Ms Span is important.
What continues to NOT be noted throughout various media stories about 'old age' is the shame of NYC nursing homes...and/or assisted living/long term care facilities in which elders may continue to develop dementia issues (among other age related illnesses) and receive sub-standard care or even criminal care (never mind being evicted so that the facility can be repurposed into luxury housing!)
Imagine if you will, that your loved one going into a nursing home and needing attention to be toileted...turned in bed to prevent bed-sores...fed...monitored so that there are no elopement 'escapes'...will not have enough staff to care for them. There are NO ratio requirements in the DOH regulations. That's what they'll be subjected to...I kid you not.
Or imagine that your loved one is agitated in that nursing home...there are NO regulations which preclude an understaffed nursing home from over-medicating w/psychotropic drugs to keep them in a stupor without enough aides to attend to them.
Pay heed folks...this is what we have in NY State from the Dept of Heath.
Unconscionable state sponsoring of human rights violations by the agency charged with protecting the most vulnerable...your loved ones and mine.
73
I have this on my list to check into as I have a parent who will need some facility care down the road.
I'm surprised about the lack of ratio requirements, I assumed that there would be something in place similar to what we have in commercial child care facilities where there could be a max of x babies per worker, etc. Would worker - patient ratios be set by the state, like childcare?
7
No there are NO aide required minimums...and for the sub-par nursing homes in NY (which are among the worst in the 50 states (!) they get rewarded by the Governor whose reelection campaign funds rely in part on Nursing Home lobby groups. Yes...where are our state legislators...what kind of shameful oversight continues to abet harm to the elderly? What does the Governor have in mind when he appoints the worst oblivious Public Health and Health Planning Council overseers to certify these horrible last places for our loved ones?
Don't believe me? Check out this link: https://www.nbcnewyork.com/news/local/Cuomo-Approves-Millions-for-Worst-...
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There are industry standards, but they are woefully minimalist, even in posh facilities.
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I'll download the good Drs. plan. I tried to explain my beliefs and desires regarding what to do in all possible cases, vi the advanced directive. It is a hard job. I don't have children, and asked a niece to serve as the Proxy etc, although at present in conjunction with a friend for back up. I did have a conversation with her, and will do it again, because I know how it is when we sort of think we understand but haven't really had The Conversation.
One of my missions in talking to her was to assure her that I was giving her the right and responsibility to make such decisions,and giving her a sort of guide to the kinds of questions to ask Drs. (such as will the proposed test/procedure make any difference in treatment or outcome?) The other side was to make her comfortable with some version of pulling the plug - not a common topic of discussion for most younger folks. The issue being of course, that you have to avoid being "plugged in" in the first place, or avoid being "rescued " at the wrong time. That in turn means moral or philosophical issues have to be resolved way before a crisis.
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My siblings and I were fortunate in that our parents had broached the uncomfortable topic of getting a POLST form and talking about end of life decisions. They did not expect dementia, or for my mother to be widowed and her cognitive issues to abruptly come to the fore (who does, even if well informed?). But knowing that neither of them wanted to be on life support or a ventilator helped with many decisions along the way, including the sudden and mercifully brief crisis that finally ended our beloved mom's span on Earth. Even if filling out a form like this, naunced for dementia care, seems like just more paperwork, it CAN offer the opportunity for families to have important discussions and provide a glimpse into someone's wishes, even if the paperwork's not turned in. I know too many people in midlife who are grappling with parents in early mild cognitive disorder phases who adamantly refuse to discuss the issue...as well as nurses and doctors who refuse to acknowledge something is amiss, and won't engage with the family members.
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I was thankful my Mother had forms done and me in place as MPOA.
Weirdly enough she had to get lung cancer dx as an incidental in ER to get eligible for Hospice care. Only last 6 months of seven year Alz was she cared for on that basis--last 3 years Hospice had been lung cancer, did not kill her, and I did not pursue treatment as she could not cooperate anyway.
Our system is screwed up, but Hospice at home with visits was great, just wrong dx.
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My carefully considered wishes, in writing, in the event of cognitive incapacity, where I cannot be fully independent is euthanasia.
One can live a very long time with dementia and VSED is much too difficult a process unless fully supported medically.
I am a retired Nurse with experience from birth to death,
full of joie de vivre.
With euthanasia not legal - and wanting to avoid the "Still Alice"
situation, one must become educated and resourceful, while high functioning.
It would really be good to have open discussion about this taboo subject.
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I wonder how many people reading this have the secret bottle of left over pills in the nightstand. In case.
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I’ve heard this is quite common......but the elderly suffering from dementia forget they have it. Not intended as a joke unfortunately.
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That's what makes dementia so scary--to carry out the exit plan one must still be fairly compos mentis, perhaps not yet emotionally ready to die.
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How do I get Dr. Gaster's form?
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My biggest fear is losing control. Falling into our broken health care system that is designed to keep people alive as long as possible. The whole trick is to kill yourself before you lose control. Early stage is too soon for most, end stage and you can be trapped. Visit any one part of our health systems, you will witness horror. The things I have seen scare the daylights out of me.
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Very recent experiences support your observations and position. Sad and terrifying.
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There are many instances where the overwhelming burden of responsibility for a parent succumbing to dementia is borne by just one of the children or the spouse. For many reasons, the other family members will not or cannot help. They can also make matters much worse.
I am in the throes of this agonizing process and question the value of a dementia-specific advance directive. I believe neither the patient or the primary caregiver can pre-determine what is best for either one, let alone try to achieve a consensus among other family members about what is best for everyone as the patient's dementia progresses.
Generalizations based on "average" dementia care outcomes and goals can have little relevance or benefit in individual situations. Some care giving environments are very good while others are awful. That fact plus family dynamics and resources all play major roles in how to make decisions about when and how much care should be applied. These factors are difficult to assess in advance.
The only enduring wisdom in dementia care is comfort care for the patient and survival care for the caregiver.
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Pretty much agree. But I think that one person has to be the designee - with a back up - and that this should be shared with whatever family there is, so that they can do their best to follow your wishes without second guessing themselves or being made to feel bad by others. You entrust decisions to someone - because you believe that they understand your beliefs. Because if you ever get to a stage of advanced dementia, you won't be able to explain.
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I am that one child who cares for my elderly parents. My other 5 siblings ONLY care about their lives and future inheritances..... I advocate for my parents (whilst both have dementia, they are at different stages)..... I take them to physicians’ appointments, ER visits, do their grocery shopping, buy all household items, clothes, shoes, and anything they might need. I arrange for all home and pet maintenance......
I also have a full time job and husband...... very full life to say the least!!!!! I do NOT want to have dementia and be like my parents (except for me spending time with them, very few others take any time for them)....... what is heartbreaking is that before they developed dementia, they were both active in their lives (working, volunteers in community causes)...... They KNOW that they are not “100%” and often beg me “what can be done to get me back to feeling normal”??? Sadly, I have no answers.......
I would prefer to die than end up living so isolated and knowing that family and friends won’t take time to visit......
My husband knows how I feel and having a “form” that clearly spells out “Euthanasia upon dementia symptoms being “obvious”” will be very helpful!!!!!!!
7
"....for the cohort born in 1940, the lifetime risk at age 70 was 30.8 percent for men and 37.4 percent for women." Why wasn't this part of the coverage of Trump's physical?
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It only means Trump -- by virtue of age -- has a 70% chance of being completely OK. He passed his physical with flying colors.
1
As far as dementia is concerned, if someone else is making decisions for me, I'm already past the point of no return. I don't want to live like that.
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I watched "Still Alice", the beautiful and distressing story about Alice Howland and her progression with early-onset Alzheimer's (which is not the same as dementia). The most frightening moment for me was when Alice could not follow the instructions she had left herself earlier to kill herself once she had met a cognitive loss benchmark. It was horrifying to me that the healthy Alice had lost that one last moment to have control over her life and death by the simple progression of the disease.
I am going to make sure that this additional directive is signed and shared with family and friends. I come from pretty healthy stock and none of the seniors in my family have had dementia at all, but there's no guarantee, especially as we can keep the body going longer.
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MorganK: it's a fine movie, but I am afraid it is quite realistic in that by the time you have dementia....you lack (or will soon lack) the ability to commit suicide. And Physician Assisted Suicide requires the patient be in their right mind and competent. They will NOT provide euthanasia based on what you wanted 2 years earlier when your mind was 100% clear.
People want desperately to game this system -- to get out at the last moment, and avoid the decline and misery of dementia. But it is impossible, as a dementia patient does not really recognize symptoms -- has poor judgment -- is confused -- cannot carry out complex actions like taking overdoses of medications.
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Still Alice haunts me frequently and I wished that I had never watched it.
Important and valuable article. I’m downloading directive.
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When my mother was on life support more than 20 years ago, it helped that she had been very clear about what she would want in that situation.
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Thank you for this important piece and for including a link to the Dementia-Specific Advance Directive.
It's something most people don't want to think about, but so critical in ensuring you get the care you want while relieving your family of the burden of making those decisions.
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Thank you,
This plan will give me piece of mind. I don't want to leave my wife paying to keep me in a nursing home while our estate slips away, it would be the ultimate betrayal.
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