InkLinks
Aging, Disability, and Two-Ton Gorillas:
Responses to Howard Brody

In the last issue of the MHR, Howard Brody asked whether two moral ideals are reconcilable. (The occasion for his article was a workshop we held last June on bioethics and the disabled. Len Fleck’s “audience response” system garnered some surprising responses.) The first of the conflicting principles was, roughly, “the frailty of old age is a disability, and it is wrong to discriminate on the basis of disability.” The second was, again roughly, “death is inevitable, and at a certain point expensive efforts to prolong life are a misuse of scarce resources.” Several readers have responded to Howard’s question.

InkLinks is a forum for our readers. Let us know what you think.

—JA

A Philosopher: Defining Disability Too Broadly Misses the Point. We Need to Talk.

The “disability movement” is not a single powerful political force. It is a minimally coordinated array of disability interests, very often competing with one another rather than cooperating. The disability movement has sought to expand its political power by embracing a more inclusive definition of disability, hence the move to include the frailties of old age as disabilities. Still broader expansions have been suggested: When persons with significant heart disease and progressive cancer are included, very large numbers of people are brought under the disabilities umbrella. But that expansion is the equivalent of inviting two 800-pound gorillas into your kitchen and not expecting any broken crockery. Take, for example, a drug like Erbitux, which costs $12,000 per person per month. It doesn’t cure; it provides a marginal increase in life expectancy. Cancer care in the US currently consumes about $100 billion per year. Because of drugs like Erbitux that annual cost is likely to be $750 billion by 2015. If there is a political contest for limited health care resources between advocates for persons disabled by cancer and advocates for persons with a range of physical disabilities who need assistive technologies to restore function, which group is likely to “win”?

Instead of that kind of political struggle, it is in the interest of all members of the disability movement that we have a rational public conversation aimed at articulating fair or just health care rationing protocols across the health care spectrum. Allocation and rationing decisions are going to happen whether or not such a conversation occurs. The real practical (and moral) question is whether such decisions will be the result of the exercise of ethically uninhibited political or economic power, or the outcome of a rational social conversation governed by a conception of health care justice we can all endorse as reasonable.

Len Fleck, Ph.D.
Center for Ethics and
Humanities in the Life Sciences

A Disabilities Advocate-Theorist: Invite the Gorillas in, and Then Let’s Talk.

I do think it is appropriate to include people with heart disease and cancer in the disability movement, community, etc., and then I think we have to face what the 800-pound gorilla requires when invited into the room. I do think we need a democratic deliberation on health care rationing, and we may have to have difficult conversations about differences between stable and progressive impairments, between levels of impairment, and so on. The principle that at a certain point death should no longer be aggressively postponed is one I can tolerate. Trying to evade the fact that we will all die is the greatest of foolishness and the worst of a pursuit of the consumerism and perfectionism that puts at a disadvantage everyone who cannot meet norms of youth, beauty, strength, and mental agility.

If people with disabilities felt they would get a fair shake at resources, that their impairments would not be used against them, they would have an easier time imagining that perhaps no one should get heart transplants at age 80. But people with disabilities have every reason to oppose using impairment (even profound cognitive impairment, as in late stage Alzheimer’s) as a reason to avoid treatment, if the treatment would allow the persons to go on living the lives they were living before. To say that any of those lives, however good or bad they are, is worth less than the life of someone without an impairment is simply discrimination. I am not convinced that we should be creating technologies for some that we will not give to all, regardless of age or impairment.

Adrienne Asch, Ph.D.
Wellesley College

A Geriatrician: Let the Elderly Choose for Themselves

The essay on age-based rationing by Howard Brody summarizes very well the debate among bioethicists and advocates for persons with disabilities. These arguments are familiar to those of us in the trenches. But after almost 30 years of nursing home experience, I have come to believe that neither rationing nor the fair and caring distribution of health care resources can be accomplished by crafting public policy incorporating criteria that detail who should or should not receive services. Such criteria will almost certainly be arbitrary because calculated benefits and risks are derived from epidemiologic data that by their nature carry some variability and uncertainty. In addition, the epidemiologically-derived estimates of benefits and risks do not take into account a person’s need and ability to complete the “unfinished projects” that Dr. Brody describes.

Preferable is an approach that offers each individual meaningful choice at times of transition–an approach that also acknowledges the ambiguities inherent in these situations. When an older person starts to decline, we ask, “Is this decline due to an irreversible or terminal process or one that is potentially reversible?” If it is likely to be irreversible, we offer comfort care options to the person in transition. If the decline is due to a process that is potentially reversible, we offer explicit diagnostic and therapeutic options and the most likely outcome for each option. We honor our older patients by giving them and their families the opportunity to choose among these options. By taking this approach, many of the older adults we attend and the family members who love them can find peace by making life-enriching rather than life-extending choices.

Larry Lawhorne, M.D.
Family Practice