This post is a part of our Bioethics in the News series. For more information, click here.
By Tom Tomlinson, Ph.D.
Back in the middle of March, there was a flurry of news about a study by Rush University researchers, reporting that the death rate from Alzheimer’s disease was much higher than previously thought. (James et al.). The New York Times and Washington Post both noted that according to the researchers’ estimate, Alzheimer’s disease kills an estimated 500,000 people a year. This makes it the third leading cause of death in the US, right behind the big killers, heart disease and cancer, and catapults it up from its previous sixth place ranking.
In the Washington Post article, Keith Fargo, director of Scientific Programs and Outreach at the Alzheimer’s Association, complained that the study demonstrates that Alzheimer’s disease research is woefully underfunded compared to heart disease and cancer, receiving only $500 million from NIH in 2012. More recently, a New York Times columnist noted that Alzheimer’s disease causes more deaths in the US in one year than AIDS did in three decades. Alzheimer’s disease needs a social movement to combat society’s ageist neglect, she suggested, just like AIDS needed Act Up to combat homophobic disinterest in combating that disease.
My first problem with all this hoopla is that death is far from the worst thing about Alzheimer’s. Things wouldn’t be better for Alzheimer’s sufferers if somehow, everything else being equal, they lived longer because of it. Quite the contrary, things would be much worse, if you agree with the overwhelming majority of people who think that a severely demented life is worse than death. (Gjerdingen et al.; Williams et al.)
It’s a blessing, then, that the immediate cause of death for Alzheimer’s patients is not Alzheimer’s itself, but its consequences—becoming increasingly immobile, bedbound, and unable to swallow and protect the airway. These in turn lead to malnutrition, dehydration, and infections, including pneumonia (the most common reported cause of death for persons with Alzheimer’s). These conditions can be fatal, but can also often be successfully treated, at least in the short term. When they occur in the Alzheimer’s patient, therefore, they present an opportunity to withhold treatment so that patients can die rather than survive in a condition they would almost certainly find unacceptable.
So chances are, the proximate cause of death for many Alzheimer’s patients is a merciful decision to withhold treatment. Until we find something better, it may be the best remedy we have. It’s the remedy prescribed in my advance directive, where I ask that my life not be prolonged by any means if I become irreversibly disoriented x 3, and unable to coherently communicate with those around me. I recommend it, and hope that 9 out of 10 doctors do as well.
The other problem here is the idea that death is something to be beaten back, no matter what the age. Not very surprisingly, the Rush University researchers reported that the median survival following diagnosis of Alzheimer’s dropped with age: 4.4 years for those 75-84, compared to 3.2 years for those 85 and over. More strikingly, a British study reported that the median age at death for persons with Alzheimer’s is 90 for women, and 87 for men. (Xie et al.) Life expectancy at birth in the UK was 82 in 2012, according to the World Bank. It’s a cruel irony that the persons most at risk of Alzheimer’s disease are the ones lucky enough to have lived longer than expected.
So now my question is whether there should be some age-related limit to our efforts to conquer death. We might first take that to be a question about fairness. In the context of limited resources—for delivering medical care or doing medical research—is it unfair to focus on those conditions that affect the young more than the old? One very influential argument claims that doing so is not unfair, if opportunity for a normal human lifespan is what we think should be equally distributed. (Daniels) The young person with AIDS has a long life ahead of him if we can prevent his death from that disease. The (very) old person with Alzheimer’s has already enjoyed his chance for a full life. On this conception of fairness, it’s ethically bizarre to draw a parallel between Alzheimer’s disease and AIDS, by suggesting that the resources devoted to them should be the same.
But there is a second way to understand the question about limits, that’s not a matter of fairness, and that goes deeper. Imagine that resources for medical care and research are unlimited, so that money spent on extending the lives of the elderly carries no price for the lives of the young. Should conquering death at any age be our goal, and the measures of our success not just rising life expectancy at birth, but at 65, 85, 105… ?
I confess I’m highly ambivalent. On the one hand, so long as I’m getting a kick out of life, more of the same sounds like just what the doctor ordered. But will I be getting as much kick at 90 as I got at 20? Do people get tired of living only because they’re tired of suffering the effects of illness and disability? Or does life itself become stale at some point, just more of the same old, same old? If there is such a thing as this existential ennui, a terminal illness with good palliative care gives me a way out. But if my ennui strikes at 80, and my terminal illness is still 25 years away, what do I do? Hmm. Suicide, or soma?
And what might be the social consequences, as more and more of the population is older and older, and still healthy?
And still working? Whether yes or no, either answer might have consequences for the younger persons still waiting for employment or promotion, or paying more to support the growing leisure class.
And still capable of new ideas? Humans are creatures of habit, and the longer we practice our habits, the more deeply entrenched they become. If death is one of the great lubricants of human progress, is pursuing immortality really a good idea?
A bunch of questions that leads only to the wimpy conclusion that conquering death may not be an unambiguous good.
When it comes to Alzheimer’s disease, then, I’d rather conquer dementia.
References:
Bahrampour T. New study ranks Alzheimer’s as third-leading cause of death, after heart disease and cancer. The Washington Post. March 5, 2014. http://www.washingtonpost.com/local/new-study-ranks-alzheimers-as-third-leading-cause-of-death-after-heart-disease-and-cancer/2014/03/05/8097a452-a48a-11e3-8466-d34c451760b9_story.html
Bellafante G. Alzheimer’s, a Neglected Epidemic. The New York Times. May 15, 2014. http://nyti.ms/1lvSRz8
Daniels N. 1985. Just Health Care. New York: Cambridge University Press
Editorial Board. High Mortality From Alzheimer’s Disease. The New York Times. March 12, 2014. http://nyti.ms/1grdmKO
Gjerdingen DK, Neff JA, Wang M, Chaloner K. 1999. Older Persons’ Opinions About Life-Sustaining Procedures in the Face of Dementia. Archives of Family Medicine 8: 421-423.
James BD, Leurgans SE, Hebert LE, Scherr PA, Yaffe K, Bennett DA. 2014. Contribution of Alzheimer’s disease to mortality in the United States. Neurology 82(12):1045-50.
Soma in Aldous Huxley’s Brave New World http://www.huxley.net/soma/somaquote.html. Accessed May 2014.
Williams N, Dunford C, Knowles A, Warner J. 2007. Public attitudes to life-sustaining treatments and euthanasia. International Journal Of Geriatric Psychiatry 22: 1229–1234.
Xie J, Brayne C, Matthews FE. 2008. Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. BMJ Feb 2;336(7638):258-62.
Tom Tomlinson, Ph.D., is the Director of the Center for Ethics and Humanities in the Life Sciences and a Professor in the Department of Philosophy at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 12, 2014. With your participation, we hope to create discussions rich with insights from diverse perspectives. You must provide your name and email address to leave a comment. Your email address will not be made public.
MSU Bioethics 
As an individual from a younger generation, we have been raised with understand two related concepts. 1. Don’t ever plan on retiring because either Social Security won’t be available or the age to collect SS will be extremely old. 2. Do not fret over point 1. because you will most likely live a very long time. By manipulating research allocations, the former point is more inevitable than the latter. Thus, our generation is counting on research to expand life spans so that we might one day become members of this “leisure class” that currently exists.
Obviously, the growth of this “leisure class” and the the societal need to support it is growing substantially, and the financial implications are immense. However, these financial implications are variable and contingent upon current and future healthcare practices and desires for reform. Given the variegated characteristics of these financial implications, I argue that it is more worthwhile to concern one’s self with opportunities for research on conditions expanding life-spans since its financial implications will most likely transform congruently.
However, my opinion is biased because I have family members who suffer from both Alzheimers and Parkinsons. Both individuals are females who were diagnosed in their early 70’s, well before the average age discussed in this forum. For this reason, I am potentially more likely to value research in this area than other individuals.
I also strongly believe that one should consider definitions pertaining to the quality of life when attempting to prolong life. For this reason, while I am in support of research for diseases which primarily influence life-spans, these advancements should not occur at the expense of research on the quality life. Given limited financial resources, I would ultimately argue for the need of research towards dementia rather than Alzheimers in particular. Especially when considering how many more individuals are effected by dementia and how the scope of dementia research is likely to help more individuals.
I’m not entirely sure, but I think we agree, Nicole. I support research into Alzheimer’s disease like you do– primarily because it causes profound dementia, not so much because it shortens life. The fact that it shortens life is, I venture to say, a good thing. Good for the individual suffering from dementia; good for the family bearing the heavy burdens of care-giving; good economically for retirement and health systems groaning under enormous costs; and good socially in increased opportunities for the young.
As we work to combat the diseases of aging, we need to ask ourselves whether cheating death is sometimes a very bad idea.