On seeing an Alzheimer’s patient (or any other person) lying comatose and terminally ill in a nursing home bed, almost everyone thinks, “I don’t want to die like that!” (See my last post). That raises the question of suicide.
When I believed I had Alzheimer’s, I didn’t seriously entertain the possibility of killing myself for a number of practical reasons. The most important was that people with dementia are still capable of meaningful relationship well into the course of their disease, and many readers (Lee Ann Gerleman, among others) insist that the often-difficult season of caring for a person who may not even recognize family offers many joyous times, too. The only reason I could imagine for checking out early was to prevent the burden of caregiving on someone I love. No matter how deep our relationship, I didn’t want to burden my wife Marja with caring for me when I became completely incapable of relationship or unable to tend to my own physical needs.
I thought often about the conflict between my unwillingness to foist upon Marja my care in the last stages of my illness and my choice not to suicide. At one point, however, a woman wrote me that her husband (who had Alzheimer’s) decided upon something “in between” suicide and the burden of care in the last stage of the disease. They agreed that when he reached the point where he could no longer feed himself, no one else would feed him, either. When the time came and she withheld food and water, her husband died within two weeks.
At Joseph’s House, we’ve had analogous experiences of people unable to eat or drink as they neared the end of their lives. As we do for all other residents, we accompanied them around-the-clock, and death from lack of food or water seemed to us no more painful or difficult than the deaths of the many others we accompany.
I’ve asked myself whether deciding against food or water when I am terminally ill is a form of suicide. I don’t think it is. It’s rather more like deciding against what the medical world calls “extraordinary measures,” for instance, choosing not to put a terminally ill patient on a respirator, an acceptable and common medical practice. I can see little moral or emotional difference between, on the one hand, not feeding a person and, on the other, choosing not to put in a feeding tube or treat an infection in the last stages of disease.
Arranging not to be fed seemed like a good middle ground. I talked about it extensively with Marja, my children and some others close to me, and we agreed upon that course. We realized that if I were in a nursing home, however, such a decision would probably not be allowed, so my family would have to take me out to die at home … a better choice, anyway. I made my decision formal by filling out the appropriate legal documents. Legally, then, this would be my decision alone, and no one else would have to risk guilt or the disapproval of others by making such a “heartless” decision for a dying person. I’m keeping that living will intact in case my impairment begins progressing again or I’m in the same situation from another cause of death.
I would offer several cautions from my experience as a physician. First, talk the decision through with everyone who is close to you or might be able to cause trouble when the decision needs to be made. At Joseph’s House we’ve had relatives come out of the woodwork at the last minute to insist upon a different course of action than that decided by the patient and close family, even threatening legal action when we, for instance, didn’t hospitalize a patient for whom nothing medically could be done. Second, get it written down; everyone should have a written living will (or advanced health care directive), anyway, but especially in this situation. This does not need to be prepared by a lawyer or any third party (see Five Wishes). Third, find a hospice provider or physician in your area who will agree to provide support. Finally, review the decision with family regularly, perhaps once a year, until you are no longer capable of doing so.
There was no debate in our family; it seemed right to everyone. I’m sure Marja would never have protested the burden of caring for me, but it was important for me to protect her from those meaningless months or years when the demands of care were enormous and I was no longer aware of much of anything.
Dr. Hilfiker- i've been reading your blog for about a year, and i think this is the first time i've commented. i'm responding to your comment that witholding nutrition would not be allowed in a nursing home. i'd like to let you know that (at least in VA, for sure) witholding nutrition (food and/or water) is allowed in a nursing home, so long as you (or your wife, if she is making decisions for you) agree to it. many nursing facilities would have you put it in writing, in a living will or other documents to prepare for the end of life. there are some nursing homes which have hospice sections, and this choice is frequently made as part of hospice care. people who work with people with dementia realize that these illnesses are eventually fatal. additionally, there is very good research that putting in feeding tubes does not increase a person's life span or his/her quality of life.ReplyDelete
there may be many other good reasons to bring someone back home from a nursing home as they are dying, but this shouldn't be one of them.
Very helpful information. Thanks for writing.Delete
Just to add to this - my grandmother had a stroke in her 95th year and decided she did not want to go on with the resulting disability. Her only option was to refuse to eat or drink. The nursing home asked my mother if she wanted my grandmother forcefed, and my mother said no. So my grandmother was allowed to die as she wished. This was in Florida in 1998.Delete
Just a thank-you for an immensely insightful and helpful blog. The last post about shame supported me in reaching out to a family in which cognitive decline is emerging and causing both fear and shame because their culture is secret-keeping. Openness is tough but pays off again and again.ReplyDelete
Thanks for your very thoughtful and I daresay brave article on a topic that is critically important but often skirted. Appreciate the discussion!ReplyDelete
Wow. I have been following this because my mother-in-law has Alzheimer's, but little did I know that my own mother would suddenly start to fail -out of the blue- with a kidney problem that lead us to discover that she had cancer. We had not talked about anything other than the "no extraordinary measures" kinds of things. Within 2 weeks she stopped eating. We kept giving her water until she quit asking for it. We had wonderful hospice care and helpful information all along the way. What we were not able to prepare for was the fact that once she started the final phase and they told us it was time to gather around her bed -- that she would go in a matter of hours -- she lived for 6 more days. With no water! At about the 3 day point, we started wondering if we had made a mistake. It felt kind of awful because at that point, what do you do? Start feeding her water again? We felt that would only prolong things so we just kept the vigil going. It was more complicated than we thought it would be, but all along the way we felt it was the most humane thing we could do. This post was a gift to me today. Thank youReplyDelete
Stories are the most powerful way to communicate, so thanks you for this wonderful story.Delete
Working hospice, family usually asks "if I go home to shower, will I need to be here?" They want an answer. They want to know whether their loved one will die before they can get back. I usually told people, "Whenever I have tried to predict someone's time, God shows me that we are on God's time. I cannot predict anything. I can say this person will live another week, and God will laugh and take them home right away. We are on God's time now."Delete
Your loved one may have been trying to go, trying to push herself out. But I believe one's death is at one certain moment of life whether its in a car, or in a hospital bed. Its that one moment you are supposed to go. CAn't go early and can't go late.
People have a real problem sometimes with withholding food or water from their loved one. Actually, dehydration takes away pain. Someone dehydrated, in a coma or sleeping most of the time doesn't feel pain anymore. Its nature's way.ReplyDelete
But I remember when my Mom was dying, my Dad insisted on giving her sips of orange juice, because his entire life, feeding was considered loving. Withholding food was considered cruel. It took me (a long term care and hospice nurse), both my kids and the hospice nurse to get him to put the juice away.
My Dad had a part in his living will where he said, "when there is no hope of recovery, basing my life on quality instead of quality, if it is decided that I will not recover, for any reason, all antibiotics, IVs, and meds are to be stopped . My brother, bless him, the electronics engineer who was the POA sent him to the hospital six times for IV fluids because he was dehydrating. All the way home from the funeral, I kept looking up saying, "And you had to pick the engineer for the POA, you couldn't pick the nurse." lol
I also have a living will, stating that after an accident, they could insert a TPN line for temporary use. When that TPN line has to be removed, no peg tube, no J tube, and no other TPN tube is to be inserted. If I'm not well enough to feed myself, they are to let me go. I have discussed this with my daughter (my POA), my doctor, my attorney and the hospital. And they are fine with it.
quality instead of quantity. Oops. I never seem to recheck my typing.Delete
Thank you, also, Lee Ann. We need different kinds of stories, and we need to share them with each other. One of the issues around cognitive impairment, dementia, and death in general is that it is so difficult to tell our stories that we end up feel isolated, not knowing that lots of others are going through the same thing. Tell your own story and others feel freer to tell their own.Delete
I applaud you for taking on this difficult topic.ReplyDelete
I too have been reading regularly and passing on posts to other staff in the nursing home where I am a chaplain.ReplyDelete
Thank you for this thoughtful post. I'd like to add a few comments about the idea of not being fed when one can no longer feed oneself: in our nursing home setting, when someone is having difficulty chewing or swallowing or pushes away food, the first step is usually moving to a food texture which is easier to manage, such as minced food, or adding extra gravy. A further step would be to pureed food. In many cases, residents still feed themselves these meals. Another thing we see is that when people stop feeding themselves when given a fork & knife or spoon, they may still feed themselves very well when provided with finger foods such as sandwiches or cookies or a banana. And they may drink very well when the cup is placed into their hands but not drink at all if they are to reach for the cup on their own.
I add these comments not to muddy the waters but to encourage any of you considering this option to consider these further questions as well.
Deep thanks to you, David Hilfiker, for your writing and insights. I am learning so much from your posts.
Thanks. This is a very helpful comment. What seems to me most important in it is that those folks who are considering not drinking or eating at any point in the dementia process be very careful to be as specific as possible in your advanced directives. This comment, for instance, suggests that there are various levels at which a person "can no longer eat by themselves." Which level do you want? Be careful to specify that.Delete
Just to add to the above--my name is Beverly Suderman-Gladwell. I'm a chaplain in Waterloo, Ontario, Canada.ReplyDelete
What to do about ending one's own life while in the throes of dementia is truly a personal decision. I would encourage anyone with or without dementia to visit a nursing home to observe people dying of dementia bit by bit, tied to a bed or a wheelchair, howling, drooling, smelling of waste (even in the "good" nursing homes), many of them without ever having a visitor, much less a loving family member, to look out for them. If we could all be guided to the end by an extraordinary nurse like Lee Ann Gerleman, there might be some comfort there. But my experience watching two relatives dying of dementia in a nursing home, along with others like them, has convinced me that should I be diagnosed with Alzheimers, I will be merciful to myself and my family and spare us all that slow motion death.ReplyDelete
I don't know about other countries, but the US is now largely restraint free. Instead of side rails, they will put a mattress on the floor. Instead of restraints in a chair, they will put a certain pillow in a wheelchair that kind of leans them back. Then if they do stand up, there is an alarm that say, "Joan, please sit down." Usually they will sit back down.Delete
IF I worked anywhere where there was howling , somebody's head would roll. Even smelling of waste usually means the staff put the diaper in the trash in their room. Most places I have worked we put the diaper in a plastic bag and remove it from the area, then spray the air.
Naturally in a facility with 100 or 200 residents, there will be failures in care. Sometimes they're understaffed, sometimes there is a flu going through the building. But if you had that bad an experience with a long term care facility, there is always a state ombudsman to contact with concerns. They are regulated by the state, and the state will come in to audit the facility (in most places, anyway).
The squeaky wheel gets the grease. If someone is unhappy with the care received, complain. And hang around as often as possible. They will all be alerted to ensure that your person is clean and in clean clothing. Most places don't give personal care like a family home would. and it is kind of institutional. But cares should be done on a regular basis. Or someone needs to fix the situation.
Very seldom have I seen a really bad situation. And I've worked long term care/hospice for over 20 years. I have, however, instructed my daughter on which places around here I would willingly go, and the ones that they'd have to drag me in kicking and screaming. LOL.
You should read Helen Nearing's book, Loving and Leaving the Good Life. Her husband Scott chose exactly this path, and I believe that you would find her account of his death process both informative and comforting. God bless.ReplyDelete