Dementia, Long Term Care and Feeding

Since my last post, I have given a lot of thought to the plight of my patients with dementia. My approach is to ask the question, "What if I got dementia?" How would I want to be treated? In addition, there have been recent articles and even books built on the observation that "physicians die differently" than the rest of the population. We are less likely to have terminal chemotherapy, less likely to die in a hospital or intensive care unit, and more likely to die at home. Perhaps the reason is that doctors have given a lot of thought to issues of illness, ageing and dying whereas most people have not. Physicians also understand the workings of the modern medical system - what it can and can't do - much of which I described in my previous blog, at least as it related to the person with dementia. So, I humbly submit that my thoughts on this issue may be timely and welcomed by others.

For example, as I noted before, I have seen the excellent nursing staff and aids in a nursing home keep a patient with severe advanced dementia alive for years, including patients admitted to the nursing home from a hospital with hospice care. Basic nursing care and good hygiene are necessary to keep someone comfortable and to prevent skin infections, but what about feeding? Tube feeding in the face of advancing Alzheimer's dementia has not been shown to prolong life. Patients can still aspirate and get pneumonia even if they are not actively eating food or swallowing liquids. A tube feed is not the answer.

What about the patient who is just beginning to refuse meals, who forgets to eat or who actively refuses feedings? Right now I have a patient in a nursing home losing weight. The staff tell me that she "clamps her mouth shut" when they try to feed her. Does she know what she is doing? Is she just not hungry? Is this just a reflex of some kind, or does she want to refuse nourishment?

What if it were me, and I had some vague knowledge of my deteriorating condition, and although I could not speak, I could still control whether to open my mouth and chew food? How could I send a message to my caregivers that I no longer wanted to be fed, that I wanted to be allowed to die? Apparently there is no way, short of using the ability to communicate that I no longer possess, to give such direction.

Let me add a comment here for those who have been lovingly feeding people, patients and loved ones, sometimes for years, sustaining their lives and health. I have tremendous respect for those who give care to people with all sorts of needs and disabilities. I am in awe of the dedication of parents and spouses who provide love and support to their family members and to the nurses and health aids who do the same for strangers. As a physician, I provide some of that care but it is nothing compared to the day to day toil of maintaining hygiene and nourishment for a person who can't take care of themselves. My remarks here are in no way intended to undermine or denigrate the efforts that have been made by others. I am trying to look at the situation from the perspective of the patient, for myself in particular were I to become a patient, starting from the position I am in today with full abilities and faculties.

I think we have to respect each individual's humanity, regardless of their ability to communicate using language and logic. For me, if I get to the point where I am no longer able to feed myself as a result of progressive dementia, I do not want to be fed by tube feed or by hand against my will. Is it possible to express that will by refusing to open my mouth, spitting out food, or refusing to swallow? Possibly. My experience is that in the nursing home or hospital, feeding is appropriately felt to be critically important to preserving life and function. Without a specific instruction not to feed, it will happen, even if the patient makes it difficult.

To overcome the problems inherent in determining when and whether to stop feeding, I would like to propose a simple rule, to be followed by my care givers in the event it is necessary: allow me to eat or not eat on my own without attempts to feed me against resistance that comes out indirectly like those examples above. If it is clear that I want food, am asking for food and water or indicating that I want it, by all means, let's provide it and make it available, even helping to feed when it is requested, but let's not assume that death by starvation is such a bad thing. It may be a very quiet, easy and merciful way to go.

When the time comes, under circumstances that I have described before, my request is to keep me comfortable, with no efforts to prolong life, no feeding tubes, hospitalization or antibiotics, and no forced or even assisted feeding, unless requested. I don't know if others would be comfortable with such an "advance directive," but other health professionals I have spoken with have felt comfortable with it.

The comments in this blog and the one that preceded it may seem morbid or grotesque to those not used to thinking about these issues. I write my comments for my own family and for those who are interested in thinking about how to shape their own lives in a world which is all too ready to shape our lives, and our deaths, for us, even against our own will.