The Viewpoint letter “Healthcare at the End of Life” (FJ Oct. 2001) addressed several concerns on which many of us may agree, but I was shocked by the approach taken in one of the early paragraphs, and would like to address these words directly.
“During post‐retirement we undergo an inexorable decline in our own enjoyment of existence and in the pleasure that we give to others, and an increase in the psychic and physical burdens we impose on others.…” When stated as a certainty, as it is here, this is dangerous nonsense. Although a physical decline may be “inexorable,” this in no way requires that a comparable decline in enjoyment and intrinsic value is also “inexorable.” We must seriously question our society’s idea that only the young and able‐bodied have valuable contributions to make. I understand that the signers of this letter were speaking for their own experiences and probably for cases where extreme ill health makes living difficult in many ways, but they imply that certain conclusions should be drawn from these experiences and difficulties—such conclusions have frightening implications, are inapplicable in many cases, and cannot be used as the basis for decisions in our communities.
The danger lies in the fact that by voicing our own possible concerns about “being a burden to others” we suggest that it is natural we should feel this way, and that the honorable solution is to bow out gracefully and die as soon as possible. Others who may have many years of happy and valuable life ahead of them may feel, and are encouraged to feel, that they should spare others the “burden” of caring for them physically or financially.
As someone who works with elderly and terminally ill people, I see much despair and drain on families, and much unhappiness in individuals, but I’ve also seen many, many other individuals who, even in the extremity of dementia or physical illness, feel continued joy in their lives and bring great joy to others. Personally, I receive more spiritual, intellectual, and emotional “resources” from these people than from many busy, productive people “in their prime.” I would not want those lives to be shortened by one moment, even if a great effort on my part was required to support them, and I know that most families feel the same way even in situations where many hardships and miseries are involved along with the joys.
I agree with the signers of this letter that people in post‐retirement who feel that their lives are substantively over should be encouraged to seek a clearness process and explore all possibilities that may be available to them—even including suicide—without a blanket “reassurance” and dismissal of their concerns on the part of well‐meaning friends. But I think it is absolutely essential that we never, under any circumstances, encourage people to think of themselves as a burden, especially if this is based primarily on the fact that they are no longer wage‐earners. If a person perceives one’s own life as burdensome and approaches a decision that it is time to end it, then that is something to consider deeply and fully. But if any person is perceived as a burden by others, for whatever reason, then we as a society are the ones who need to consider—and change ourselves.
Two factors may lead to the perception of a person in post‐retirement as a burden. First, the very real and horrible financial and personal pressures that are placed on family and friends when a person is ill or disabled for an extended period: these problems are huge and can cause despair, but they must be addressed through social change, with the assumption that people in old age, just like those who do not work for reasons of illness or disability, are of as much value as those who are working, young, able‐bodied, and financially productive. When society cannot meet these challenges, it is a problem like any other terribly troubling social problem. We would not attempt to eliminate poverty, for example, by encouraging the poor to see themselves as worthless, or to paraphrase Scrooge: “If they are dying of hunger, then let them do it and reduce the surplus population.” In real and present situations where families are struggling with such unsolved social problems, Friends communities need to come to their support in complicated ways geared to individual circumstances, not offer simplistic solutions that ignore, or exacerbate, the larger problem.
The second reason that people may perceive others as a burden is that we have been taught, as a society, to base our own and others’ intrinsic value on tangible qualities like income, appearance, productivity, participation, etc., so that when such tangible things become less evident it can be easy to assume that life is not worth living and we have nothing to offer. This is not a belief that is based in any deep consideration of the value of life itself. We cannot know what our value is, ultimately; we can only live our lives as well and as fully as possible. At the same time, we do know in our hearts that the simple presence of a loved person can be more than enough value for the one who loves them, even if they are completely disabled or aged, even if the financial and personal struggles can be enormous.
We are all “burdens” to ourselves and each other at times, in large and small ways—but please, Friends, when we are thinking about what a human being is “worth,” let us “sink down to the Seed” in ourselves and each other, perceiving that which makes us “worthwhile” at the deepest level. Let us never tell anyone that “we should stop consuming the human and physical resources that sustain our metabolism” at the point when we have stopped being productive. When we are ready to die, whether it is when the body is ready or when we determine that we have had enough, it should not be a practical matter that can be measured by our limited concepts of what we have to “contribute.” We must trust that even if the circumstances are difficult, while we are alive we are contributing something vital—perhaps in ways that we cannot be aware of, and perhaps to others even more than to ourselves.