Spiritual issues at the end of life: a call for discussion.

When I am dying, I am quite sure that the central sues for me will not be whether I am put on ventilator, whether CPR is attempted when my heart stops, or whether I receive artificial feeding. Although each of these could be important, each will almost certainly be quite peripheral. Rather, my central concerns will be how to face my death, how to bring my life to a close, and how best to help my family go on without me. A ventilator will not help me do these things--not unless all I need is a little more time to get the job done. Unfortunately, however, bioethics has succumbed to the agendas of physicians. Physicians face ethical concerns about treatment decisions--when to offer, withhold, and withdraw various treatments--and treatment decisions have been the focus of bioethics as well. But the issues that most trouble patients and their families at the end of life are not these. To them, the end of life is a spiritual crisis. Spiritual? The word "spiritual" is ambiguous. As I use it, spiritual refers to concerns about the ultimate meaning and values in life. It has to do with our deepest sense of who we are and what life is all about. Spiritual does not imply any belief in a supreme being or in a life after this. Atheists have spiritual concerns just like everyone else. Spiritual, then, does not mean religious. Indeed, this sense of spiritual forces us to ask, How effectively do organized religions address the spiritual needs of their members? It may be that some organized religions--or some representatives of them--serve to silence spiritual concerns at the end of life or to distract people from them. Certainly many American churches do not talk much about death and dying. One minister confessed, "We talk a lot about what we believe comes after death. But we skip pretty quickly over dying itself, except to say to make your peace with the Lord." Often, there are strong social and religious pressures to suppress any doubts or questions; doubts and questions are taken as a sign of a weak faith. As a result, Christians can still find that their faith gives them no guidance about how to live the final chapter of life. What We Suffer From People facing death suffer from an inability to find meaning in this last chapter of their lives; from a bleak, narrowly confined and abbreviated future; from inability to deal meaningfully with family and loved ones at this final opportunity; from total dependence on others; from loss of capabilities; from being turned from a contributor into a burden on others; from the indignity of being unable to take care of even basic bodily functions; from a sense that their bodies or their minds are betraying them; from being cast out of the world in which the healthy live; from guilt; from a sense of abandonment; from anger about all of this; and from isolation due to the reluctance of the healthy to broach the subject of dying. These are all spiritual issues, or at least quickly bring spiritual questions into view. Facing death brings to the surface questions about what life is all about. Long-buried assumptions and commitments are revealed. And many find that the beliefs and values they have lived by no longer seem valid or do not sustain them. These are the ingredients of a spiritual crisis, the stuff of spiritual suffering. Yet they are not the themes of bioethics. Some will object that they are not properly themes of ethics at all, but if they are the dominant concerns of dying patients, bioethics has failed to address patients' concerns at the end of life. This failure has ramifications throughout the discipline of bioethics. 1) Many patients show little interest in making treatment decisions. "What difference does it make?" one patient told her doctor. She was not asking: her tone and expression made it clear that any difference a treatment decision could make would not be important to her now. Advance directives and the entire theory of proxy decisions are also largely irrelevant to patient concerns at the end of life. …