My father turned 90 today. He has Parkinson’s disease and dementia, both of which involve his brain, but the rest of his organs are going strong. He lives in a nursing home, where much of his time is occupied by basic activities—washing up, dressing, shaving, eating, and going to the bathroom—all of which he needs help with. My father doesn’t say very much and spends most of the rest of his time staring at the NY Times, which he can no longer understand but which my mother brings him faithfully, and sitting in the dining room doing nothing. My mother visits with him and walks with him almost every day. Very occasionally, he agrees to attend one of the many nursing home activities such as a current events discussion group or a concert. He is in no position to make decisions about anything important, certainly not about what approach to medical care makes most sense for him.
It’s hard to know what kind of medical care my father would choose for himself if he could miraculously emerge from his state of debility and dementia and see himself as my mother and I see him. I think he would be appalled: he was always a very controlling, capable, resourceful person and now he is none of those. I asked my mother whether she thought he would want life-prolonging treatment for himself—again, assuming he could step outside himself and see his current condition—and she wasn’t sure. When he was physically well but suffered from panic attacks, he used to express anxiety about dying. My mother thought perhaps that implied he wanted to keep going, no matter what the circumstances. I didn’t think the anxiety he experienced years ago was relevant to the present situation. I thought that if my father had known then that one day he would have dementia and need so much personal care that he had to live in a nursing home, he would have been horrified. I believed he would only want medical treatment that kept him comfortable, treatment for pain or shortness of breath or nausea or whatever symptoms he might develop. My mother and I agreed that since we couldn’t be sure what my father would want, we would decide on his behalf (my mother is his health care proxy and I am the alternate).
We decided that the focus of my father’s care should be his quality of life. The goal of medical treatment should be to alleviate discomfort and to preserve whatever limited capacities my father has. So in addition to controlling a cough or a fever, treatment should be designed to preserve vision and hearing. We agreed that we would not want to subject my father to burdensome treatment, the sole purpose of which was to prolong life. In particular, we would not authorize attempted cardiopulmonary resuscitation. In general, we did not think he should be hospitalized; rather, he should get whatever simple treatment is available in the nursing home.
Over the years as a practicing geriatric and palliative care doctor, I have spoken with countless families about their wishes for relatives who are in a position similar to my father’s. Most of them share my perspective that as dementia progresses, so too do the goals of medical care, with life-prolongation playing less and less of a role and maximizing comfort becoming more and more important over time. Some families disagree, usually either because they feel so guilty about limiting medical treatment in any way, anxious that they would be depriving the person they love of something important, or on religious grounds, believing that life-prolongation is the only acceptable goal of medical care. But I realized that my perspective—and that of my patient’s families, when they understand the relevant issues—is not shared by most health policy makers.
In this month’s Health Affairs, a leading health policy journal that devoted the entire April issue to articles about dementia, the otherwise perspicacious overview article, “The Long Reach of Alzheimer’s Disease: Patients, Practice, and Policy,” takes as a given that until the very end, patients with dementia should receive conventional medical treatment, and only when they have very advanced disease, with a life expectancy of 6 months or perhaps a year, should a more palliative approach be considered. The challenge, according to this perspective, is how to be sure that patients with dementia get state of the art care, given that they often cannot express what is bothering them (making diagnosis difficult) and that they often resist when doctors try to perform procedures (making treatment difficult).
It seems so obvious to me that if patients (and their caregivers) understood how frightening a hospital often is for someone with cognitive impairment, how anxiety-producing a CAT scan can be, and how often conventional medical treatment causes worsening confusion and other complications in someone with dementia, they wouldn’t want usual care. That doesn’t mean they wouldn’t want any treatment. But surely taking a pill at home would be far more appealing than getting intravenous treatment in a hospital, even if the risk of death with oral treatment were somewhat greater than with hospital care (and it’s far from clear that usual care is really the most effective care in people with multiple medical problems, one of which is dementia, even if the goal is life-prolongation), once people realize what the two approaches would be like for someone who has dementia. Alzheimer’s disease is not like heart disease or cancer, where many people are willing to put up with painful or otherwise unpleasant treatment in exchange for longer life because they understand both the purpose and the limited duration of the treatment. Alzheimer’s disease is not like heart disease or cancer, where many people accept painful treatment because they continue to enjoy life, conditions where only at the very end of the journey do patients sometimes perceive life as no longer worth living.
Maybe it’s time for me to show this is true and not merely to argue that it is. To that end, I am designing an interlinked series of short educational videos for caregivers intended to help them make crucial medical decisions for their loved ones—decisions about the goals of care as the illness progresses and specifically about hospitalization and hospice care. I will test whether those videos, which will show caregivers what treatment is really like, influence the choices they make about medical care for the person with dementia. Then, perhaps, we will be able to provide medical care to patients with dementia that is more consistent with their wishes.