People with advanced dementia have "a duty to die." Or so says Baroness Mary Warnock. My first reaction, after the shiver of shock finished running down my spine, was that whoever this woman is, surely as a baroness she can afford decent care for loved ones in the late stage of disease! And then I discovered that in addition to being a British government adviser, Lady Warnock is its "leading moral philosopher."
"If you're demented, you're wasting people's lives -- your family's lives -- and you're wasting the resources of the National Health Service," this philosopher says. With cold morality like that on their side, no wonder people in the UK are in full-scale panic over its dementia explosion. (You can't even get NHS reimbursement for drugs like Aricept over there.)
Of course she has it all backwards. The duty in end-stage Alzheimer's lies not with the afflicted but with the people around them -- and not to kill them but to love them, or at least act as humanely as possible. End-stage disease brings only rights (to a life of dignity, compassion), not duties.
That said, late-stage care can be rough, time consuming, and costly -- for the afflicted and their caregivers.
What you should know:
*Be aware there's a movement afoot to move toward palliative-care-only in the late stages. That is, if those with advancing dementia break a hip or develop pneumonia, they probably won't benefit from advanced testing and treatment. They're more likely to die within six months than someone without severe dementia who receives similar treatment, a famous 2000 study pointed out. So tread carefully if a health crisis develops. Did the person make his or her health wishes known before the dementia? Ask your loved one's doctor about his attitude toward palliative care, which is considered ethically acceptable in these circumstances.
* Don't go blindly. It's less scary and stressful if you learn all you can about what to expect.
* Engage as many resources as you can. If you're providing home care, you need helpers -- paid or unpaid -- more than ever. Consult a hospice as soon as the late-stage is reached. Hospice is all about comfort and dignity.
* Don't be overly heroic. Some situations are rougher than others. Even if you "promised" never to "put" your parent or loved one in a facility, round-the-clock care, incontinence care, and other issues common in end-stage Alzheimer's can simply be impractical for your circumstances.
*Stay open to the gifts within the duty. Others' caregiving stories can sometimes sound treacly or depressing, depending on your own life circumstances. And yet a thread that I hear so often is: "Man, I couldn't do it again -- I'm spent -- but I am so glad I did it."
Of course, Baroness Warnock would never discover those satisfactions. Since people with advanced dementia aren't even capable of deciding on suicide, perhaps she'd rather they do themselves in right at diagnosis! Never mind the quality of life that most people with the disease enjoy for years, often right to the end.
Image by Flickr user Aussiegall, used under the Creative Commons Attribution license .
Dear Jeciron, you write beutifully. Sandy's/Dear One of Mort
I understand the writers frustration with caring for helpless cases but her point of view leaves humanity out the door. What we need is focused caregiving that keeps the end result in mind but doesn't throw away the human being. I am a believer in comfor measures only for Alzheimer's sufferers. But if he breaks his hip, he won't be comfortable unless it's fixed. I have my husband at home and my goal is to keep him feeling loved and safe. I do not force him to eat and would not put in a feeding tube. But I will give him whatever he wants and will hand feed him if it's too much bother to him to feed himself. If he has a stroke, I will take him to the ER for TPA so that paralysis won't complicate caregiving for me. My stage three Alzheimer's husband listens to me even if he doesn't seem to. If I sing the wrong melody for the song's words, he smiles and shakes his head. Yesterday I was reading an article about rare earth elelments to him (he had been a chemist). He wanted to know where the sites of development were in North America and corrected my pronunciation of one of the elements. He is still there somewhere inside and we continue to love each other. Sandy's
Compassionate, loving care at the end of life should be no different for a patient with dementia, Alzheimer's Disease or a hospice patient with cancer. After almost 40 years in nursing one of the most rewarding experiences is making an individual feel safe, comfortable and at ease during the end of life. Anything less than kindness in my mind is unacceptable. FirstLight HomeCare hires caregivers based on testing of these important character values.
It seems to me that as medicine progresses we are all going to have to make some difficult decisions. When Esther was diagnosed with Alzheimer's we made extensive use of a good psychologist and discussed in depth our philosophies about end of life issues. Years ago Esther had looked into, and I believe made decisions about end of life issues. ( I can see her copy of "Final Exit" on the shelf as I write and, although she no longer remembers them, I know where her stash of prescription medications she saved for an overdose is.) Sandy's post resonated with me. As Esther's ability to connect with and appreciate her existence fades, the degree and definition of palliative care changes. I'm pretty sure that with extreme measures Esther could exhibit some signs of life long after her brain can not control very basic bodily functions. Certainly, to put her in such a position would be a gross betrayal of all she expressed. On the other hand, we've gone beyond many of the markers she set for when she wanted to be institutionalized. Incontinence just isn't that big a deal, and while it's difficult to be sure if she recognizes her good friends in the sense a healthy person might, she clearly enjoys spending time with them, and even if it isn't "fun", I think those of us who spend time with her benefit in deep and subtle ways. I may have overstepped our agreement, but I can be a bit of a greedy bastard, and she isn't complaining. Alzheimer's is not about winning, we know our loved ones will not recover, but instead it is about living, and coming to terms with what that means. I often tell people who express condolences that this is not a bad time, but it is a very hard time. If Esther was to die suddenly from a stroke it would not be a tragedy, but what if she stops caring about eating, or develops pneumonia, or some other serious but potentially curable problem? I haven't had to deal with these questions, and while they are on the horizon, my main thrust is to look for the value of each day. It is unfortunate that the Baroness took that tone, but that does not invalidate the discussion. As it becomes possible to spend an infinite amount of resources to maintain a minuscule degree of "life" we are going to have to explore just what we desire and expect, and feel we are worth as we face our deaths. if we can not have this discussion as responsible individuals, then the government will and should step in. If we don't want society, embodied as government, making decisions about end of life care, do we think we can expect it to foot the costs of extreme measures to maintain life?
I don't disagree but then there is consideration of the allocation of scarce resources. Would you have a heart lung transplant done on a patient with late stage three Alzheimer's?
Seeing the articulation of these points of view is helpful for calibrating my own point of view. I believe that comfort measures only are right for Alzheimer's. But I interpret the term comfort broadly. I don't force food but I try to entice eating with food I know he likes, colorful dishes and special touches. If he broke his hip, I'd have it repaired because a broken hip is painful but I wouldn't put in a feeding tube to maintain nutrition. I continue his medications because he is in a comfort zone. I disagree that incontinence care requires all night efforts. With the right equipment/supplies there can be a 12 hour window of dryness. As for a breathing tube, I will have to see what the situation requiring one is all about. My husband is very dear to be. We continue to have sporadic good moments but most are neither good nor bad. I work hard for a smile, sing to him, people read to him. He reaches for my hand if I am nearby. He cooperates with his care. All of these things are a source of joy for me. Before his illness, he was exemplary as a human being. Everyone he touched felt warmly toward him. When he first became ill, I couldn't turn my back on him. It was very difficult. He became angry, cranky, short tempered and inconsiderate toward me. He was in utter denial about anything being wrong with him yet I think at some level he knew. He stopped taking on new students and withdrew from participation in his research. We couldn't talk about what was happening because to him, nothing was happening. It's difficult to read about these things in others because my fear, hurt and anger are still so fresh. Yet I know that this is a phase of early Alzheimer's and a great trial for a spouse and for some children. Our son couldn't cope with these events and mostly withdrew and we didn't hear from him. Our daughter, thousands of miles away was often critical of my early bumbling efforts at caregiving. It took a long time for me to be able to take this journey with him in a productive manner. I felt that he deserved my commitment but didn't know if I had the gumption to follow through. I still don't know but somehow each major change has engendered the necessary skills and willingness to carry out the necessary actions. Stool incontinence was the most recent before he started wandering. I am unable to perceive his behavior after I'm asleep. It may be months before I get my service dog. He has never been combative. I won't know if this becomes the deal breaker until and unless it happens. And that's the other side of my coin. Sandy's
Good article. Some beautiful things can happen at the end of one's life here on earth, including forgiveness and restored relationships, and the joy of having helped. Beware of this mindset of choosing who is a burden and who gets to decide what "quality of life" is. Especially beware of universal healthcare, as in Canada and Holland, where the medical, healthcare or government industries can decide if your loved one isn't "worth it" anymore, and euthanizes (kills) them. May we be more involved than allowing that to ever happen. Thank you.