An Advance Directive for Patients With Dementia

As you get older and friends and family die off a a new problem arises, particluarly for those never married and with no children. What are suggestions for how to handle a situation where there are no family members to choose and there are no close friends to take on the responsibility?

I'm so grateful that my 83 year old mother has filled out a living will with her Medicare provider. Also, she has has discussed her wishes with me and her other two sons. We understand what to do and what not to do if she should succumb to Alzheimer's (or some other form of mental incapacity). It's a great relief when you know what your loved ones want. It gets more complicated when one or more family members are deeply religious. There may be serious disagreements between caregivers. We don't have that problem, but many families do.

My mother tried to say no dialysis in my father's latter hours--and the doctor said, "You are murdering your husband." She was stricken! Decades later, at 95, long memory-challenged but OK physically, she was hospitalized with a brain bleed of some sort--I kept asking about TPA, they said no--she was out of it. A few hours later, someone from hospice came and kept telling us "It's free, it's free"--meaning no copay, I guess. My sister and I finally agreed and within an hour, an ambulance put her in a residential facility, beds of people unconscious. No food, no water--they said she had stopped eating the night before the event--completely not true, she had two desserts even. After eight days, she succumbed. So I guess some "providers" more or less remove the feeding issue from your concern. I know many people laud hospice--I am sad when I think of it.

At some point anything other than appropriate comfort care is merely prolonging death, not life. Having watched two loved ones die of dementia, I know how important these advance directives are. Excellent article.

Is this the same as Physician Orders for Life-Sustaining Treatment (POLST) in CA?

It's quite obvious that some commentator have gone through anguishing experiences with loved ones, and I fully sympathize with them. But in all such cases we must refrain from ignoring advanced directive wishes. We must try not to place the need to reduce OUR pain above the need to reduce the total sum of THEIR pain. In other words, we must refrain from unnecessarily extending their torture thru means that they did not want taken while they were still able to rationally make such end of life decisions. Life is never easy. Neither is death.

Dementia is an illness fraught with emotional baggage. I recall a friend whose husband had early onset dementia enjoying the rare times he seemed like the man she fell in love with. Personally, I do not want to be alive past the point when I enjoy life, much like the Australian Mr. Goodall, who at 104 has flown to Switzerland in hopes of euthanasia. Thanks for the reminder to address these important issues if I do receive a diagnosis of dementia.

Make sure you check the "abandon me on an ice floe" option. When the court determines you are old and useless the state will fly you to Hudson Bay (as part of the new NAFTA agreement) or Switzerland, whichever is closer. Assisted suicide is a crutch for people who want others to be complicit; those who want others to shoulder their guilt. Rarely is it people who lack the means to commit suicide; mostly it is people who lack the will to commit suicide. When the time comes find your own "ice floe". Don't jump in front of a subway or hire a serial killer of depressed people (a la Kevorkian).

Thank you!

Interesting that what is missing from this article is the fact that age related mental illness dementia comes along to play with our perverted probate elder's legal system. Racketeering to own the elder's and to drain and steal his family's bank account is not mentioned? Judges and lawyers feed themselves through the guardian probate system and can hide it forever from an open democratic review, just take a look at what is going on with billionaire Summer Redstone, "oh he is 90 plus and therefore his age states he can not come to a court hearing that would show over and over again that he " totally suffers from age related dementia and is held by caretaker kidnappers" and lying money sucking lawyers . Here at least they try to keep him alive, others are locked, drugged and denied prophylactic medical care in rest homes, WHERE ANYTHING THAT IS MEDICALLY WRONG IS INTERPRETED AS 'DUE TO DEMENTIA' by a house quack. Adding to that, look up the % of rest home autopsies in this country, it is less than one percent. You think your paper work today will not be re written? Time to change our legal system bottom up and to get rid of our lying lawyers and judges that line the bottom of the probate swamp. M.O.N.E.Y. rules

I have had a kind of bad month, feeling foggy, and finding it hard to make decisions. Seeing the topic, Ithought - oh, no another reminder that I man be losing it. But this turned out to be something important, something that I welcome, and will share with friends. Too late for our parents who se "now" selves have moved beyond the line of understanding, but in time for most of us boomers. One more set of papers, but the odds are that they may be very important papers.

While I appreciate this advice, there is no way that I plan to still be around at a point where I need someone else to decide whether I am voluntarily eating, or not. Admittedly, it would be easier in my case, since I don't have a spouse or children. But why anyone would still want to be alive, when they usually don't know who they are, is beyond me.

Please forgive me, if I'm a little off topic, but I must recommend Dale Bredesen's book, "The End of Alzheimer's, The First Program to Prevent and Reverse Cognitive Decline", 2017. I'm a retired neuropsychiatrist and discovered the importance of maintaining or restoring vitamins, minerals, and supplements in my patients', and my own, diets for brain health. I used a much simpler protocol than Dr. Bredesen's, consisting of B vits. (especially B12), the seaweed Kelp (for iodine needed in thyroid hormone synthesis), and the OTC hormone precursor DHEA (supports sex hormone and cortisol synthesis in the adrenal glands). Most of my patients complaining of short-term memory problems recovered their baseline functioning. The triad of magnesium, L-argenine, and B3 (niacin) improves over-all circulation, including brain. I've taken all of these, as did many of my patients. Thanks for the info in your article, but I'd rather die with a fully functioning brain! Stress R Us

A week or so after my mother turned 90 (in 2009) she decided to stop eating or drinking because she was ready to go. She had been in an "assisted living" facility for seven years at the point and hated it. She had advanced dementia but could clearly see her way to this decision. She died about a week after starting to refuse anything by mouth; I was glad she could control this when everything else was beyond her control.

My Dad created his AHCD and DPOA documents decades ago. Unfortunately when dementia did develop he could not understand that he was impaired. He resisted all attempts to get him the care he needed to be healthy and safe. Next he hired an attorney who revoked all his advanced care plans and POA leaving him without care. He was exposed to and did many dangerous things during this time. Eventually he was found wandering by police and hospitalized and conserved by the county. Even withdolid plans people w dementia are so vulnerable to abuse and exploitation

Prepare the legal documents and update them regularly. Why update? The legal situation can change, your residence may move to another state with differing regulations, your lawyer may retire or become ill, and if not recent (i.e. ten years ago) your wishes might be challenged. I always suggest preparing such documents as a New Year's resolution. Tangible compared to the diet resolution. Then again it may spur you on in your pursuit of healthy living.

The question here is do the directives in actual practice "follow " the patient and are their wishes honored by medical personnel? There have been many reports from family members of discovering do not resuscitate orders not being followed: which is quite a quagmire. Charting these directives electronically to ensure they are honored seems to be a problem.

It's a great idea. I had a loved one whose advanced directive specified "no IV antibiotics, no feeding tube" yet they still lived the better part of a decade bed-bound, complete care, hand-fed, recurring infections (UTIs) controlled by oral antibiotics...until the last turned septic. I still feel guilty, years later, about prolonging their terminal disease by using oral antibiotics. Those of you who have not yet traveled this road will find there's a huge bias from institutions (hospitals, nursing homes) to "cure" any infection even in patients with advanced dementia. As a result I'm making sure my advanced directive says "NO antibiotics if I have dementia/other terminal illness" but I'll also work with my lawyer to incorporate the "no hand feeding if dementia" language as well.

This advance directive addresses only the very end of life. What's needed is help for people who do not wish to live for years with dementia - no longer themselves and a torture both emotionally and financially for their families.

There are already an advanced directive for patients with dementia. Its called a DNR/DNI order.

This article skips over an important piece of information that Kaiser Health News was careful to point in its recent coverage of this same topic. It has not been established legally, and can still remain quite controversial, whether one can refuse oral feeding in advance. Artificial nutrition (tube feeding) is considered to be medical treatment by the courts. And all patients have the right to refuse to medical treatment. But many will argue that oral feeding is basic care, not medical treatment. By all means put this wish in writing if it is want you want for yourself, but understand that your wishes may not be followed. Especially if someone is going to be residing in a care facility, it would be very important to find out ahead of time if the institution would be willing to go along with withholding of oral feeding.

Common Practice has a tool called "Hello" that helps walk families through these terrifying conversations. It's a wonderful way to guide the conversation in a way that feels open instead of confrontational.

This article missed a critical point. Assisted suicide laws need to be amended to permit people to authorize their health care agent to arrange for assisted suicide at the appropriate time (if the person executing the advance directive so wishes), and also not wait for the last 6 months of "life" as has been a common requirement. We are currently far kinder to dogs than we are to people, requiring them to "live" on, unable to communicate, incontinent, trapped in bodies that no longer function, unable to recognize loved ones. I for one certainly would rather have a more pleasant, planned death, surrounded by loved ones, aided by morphine, at a time generally selected by me in advance (or by someone whom I trust), instead of being forced to have my own money used to pay for my continued torture.

Thanks Jane Brody for this important article. I downloaded the "Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia" document. Once I complete the document, what do I do with it? How do I ensure that my wishes are known if and when I have dementia?

Bless you Jane Brody--once again. So grateful for the practical end-of-life info your provide. I've been a fan way before you quoted my husband -- ICU physician Dr. Adelman--in Guide to the Great Beyond. My mom --here in NJ--has had dementia for 10 years and has had to be fed by her nursing home attendants for the last 2--she gets absolutely no pleasure from eating--as you describe, she just opens her mouth by instinct. If only she could have indicated she wouldn't want this years ago--you can be sure I'm going to. And I only hope our wishes will be enforceable in the future-- we all must speak up loudly and clearly. A million heartfelt thank-yous to you for your educational journalism--and to organizations like End of Life Choices who carry on the fight for quality end of life.

She had been admitted for dehydration this last Friday evening, improving thru Saturday (despite best intentioned medical poking and proding). She threw off the covers to cool down, spoke in short slurred phrases with words expressing more her emotions than exact intent. I held her hand and placed cool compresses on her forehead, as she had done when we were kids. Despite her dementia, mom was frustated and knew what was going down. One niece, a doctor, FaceTimed her distance-prognosis: "Grandma is dying". Sunday afternoon I watched another niece suck juice in a straw, then deposit it's sweet mango flavor between mom's lips as mom couldn't suck on the straw herself. Mom liked mango. Fluids only, she had a small bowel obstruction, said the doctor. She was not going without a fight. Mom was hungry and told us so. It was my turn to overnight this last Sunday evening in the hospital. Everyone was tired and we had to pace ourselves. I tried to simultaneously sleep and listen. She threw off her pillow on top of me. Her breathing raspy, then silent, she moved, the raspiness return, I felt she was OK. But the raspiness stopped and the room became bright. Travis, the nurse, rushed to her bed, the heart monitor showed zero heart beats. Her head moved as if in a struggle while Travis listened with his stethoscope. I rubbed her head, shoulders and arms to give her stimulation. She grew cold and pale. I was impressed how Travis never said she had died. Mom was 100.

Thank you, Jane Brody. This is the kind of thing we often learn about the hard way, through personal experience of watching loved ones suffer. I'm grateful to you for helping us learn about it this way.

ADVANCE CONSENT FOR LIFE-ENDING DECISIONS AFTER WE LOSE MENTAL CAPACITY? End of Life Choices New York has proposed a dementia provision to add to any advance care plan. This provision would give advance written consent to the choice to give up water at the end of life if and when the patient loses mental capacity. The possibility that we might suffer mental decline is why it is so important to make our end-of-life plans IN ADVANCE. This provision allows our proxies to authorize the giving up water and food (provided by any means) if and when we have declined to a certain level of diminished personhood. (This proposal uses the FAST rating system to measure the degree of functional decline.) Perhaps the document could be EXPANDED to include other METHODS OF MANAGING DYING after we have lost the capacity to choose. Could these additional methods of drawing life to a close be added to the option of giving up water?

My mother died in January from complications of Alzheimers. She had an advanced health directive which was followed as my sister and I adjusted the Polst document at the assisted living which was followed. Her directive only said not to insert a feeding tube- no mention of hand feeding. My mother was being fed by hand by private aides through the last 5-6 months of her life. Based on this article, maybe we should have restricted that at some point especially when she entered hospice protocol. I don't think we asked for or were given any suggestions/advice regarding this decision. I also don't know when I would have been ready to make the decison to stop the hand feeding.

Facilites have the legal right, even in the face of a MOLST, to offer food and water a dementia patient admitted under Medicare hospice. Even if it doesn't result in aspiration, it can reduce the natural processes in dying that minimize suffering. The facility's protocols, aimed at minimizing litigation, trump best practices for palliative care. And it's all legal. You sign them in; you have agreed to their policies. And this is in the face of a MOLST or other physician-certified document. A health care proxy isn't worth anything in a facility. How do I know? I watched this nightmare unfold for a family member. Seeing your directive on video won't make a difference for a facility until the laws change.

This article should be re-printed every 6 months to help those who miss it. It is an excellent source for information and offers the link to the paperwork needed to complete your wishes for your family's knowledge and your representative. I like the idea of a video to accompany it all - nothing like leaving nothing to chance or misunderstandings. My grandmother died in 1993 of Alzheimer's. My dad is dying of it now and I am his representative with a complete knowledge of his wishes. Should I be so unlucky, I will fill out this additional paperwork and do the video too so that my granddaughter, who is my representative, will completely understand my wishes and wants. Thank you for this much needed article.

I have saved this article and printed the feeding directive for Alzheimer's to discuss with my lawyer. Thanks for this, it is a big help.

To be blunt, at the end a dementia patient might choke on thin liquids and later, even on thick ones. If there's any sugar in the the thick one, for instance it's ice cream or yogurt, they could aspirate it and develop pneumonia. They don't feel hunger pangs so choice 2, if they open their mouths you can go ahead and feed them, makes sense. Or just be present with them and don't feed them unless they indicate they want to eat. The trouble swallowing can be upsetting for them. It's the hospice workers who will give you the plain truth about what will happen. A feeding tube in a situation like this seems inhumane. What Mom and Dad would want? The truth is they can change their minds at the end which is so stressful. That's a conversation to have with your loved one now. Get it in writing and you'll feel somewhat better but it's still hellish to make that decision when they have dementia and don't recall their wishes.

It can be extremely difficult for many of us to contemplate our final days, weeks and months and the measures that can mitigate suffering. Although there can be much suffering for the dying patient (but as the article points out, not necessarily) but even more suffering for the family without a plan. The patient would never want to see their spouse or their children suffer any more than is necessary. There are many good books on this subject as western society comes to grip with the cycle of life and death.

Thank you. My Mom has MCI and I've been worried about my own memory for years now, so now I have a direction to go in for making sure I don't linger too long if I get dementia. My Dad is doing a great job of caring for my Mom and I will mention this to him too. She's still capable of making these choices, even if she can't remember what she did this morning.