DECISIONS NEAR THE END OF LIFE: THE RAGGED EDGE OF THE ETHICAL AND LEGAL CONSENSUS

Bruce Jennings, MA
Senior Research Scholar
The Hastings Center

Thirty years ago medical ethics and the law faced a novel and very disturbing challenge. Can life-extending medical technology be deliberately withheld or withdrawn when the patient refuses to consent to those treatments or when they offer no benefit but only serve to prolong the patient’s dying?

There was a time when a physician was on solid ethical ground in doing “everything possible,” to stave off death. An advancing half-way technology in medicine beginning roughly in the 1960s put an end to that. Not powerful enough to cure and to restore health, the technologies used with critically ill and dying patients were nonetheless powerful enough to sustain vital biological functions for a lengthy period, even though the patient was permanently unconscious due to severe brain injury or would never be restored to activity or interaction that was meaningful to the patient himself or herself.

That first challenge came in the landmark case of Karen Ann Quinlan in New Jersey, and the answer has evolved in over 100 appellate level court rulings, culminating in the U.S. Supreme Court decision in the Cruzan case in 1989, in statutes in all 50 states, and in scores of documents from medicine, nursing, the allied health professions, churches, government commissions, and academic experts in bio-medical ethics.

From these sources something like an ethical, legal, and professional consensus has taken shape. It is centered on the right of the individual patient to refuse any and all forms of medical treatment, including life-sustaining treatment. It is an individualistic and autonomy-respecting consensus. Since it places such a strong emphasis on the voice of the patient in the decisionmaking process, one of its main goals is to continue to be guided by that voice as much as possible, even when the patient has lost decisionmaking capacity and can no longer speak or decide for himself. Hence the emphasis that has been placed on educating patients to fill out advance directives (living wills and durable powers of attorney for health care).

Unfortunately this consensus alone will not be enough to carry us into the new century. Another, even greater challenge, looms on the near horizon, and that is the aging of the massive baby boom generation. Already some ragged edges are appearing in the end-of-life care consensus, and these may lead us to reconsider its underlying philosophy as well as its practical implementation.

I believe some of the most serious shortcomings are the following:

• The excessive rationalism of the consensus. The consensus works best for those who plan ahead for their terminal illness. Most Americans find that exceedingly hard to do. The denial of death and the reluctance of individuals to engage in advance planning remain very strong in mainstream American culture. The number of people who prepare advance directives remains abysmally small. The consensus forces us to acknowledge the limits of what medicine can promise and the limits of our own mortality.

• The excessive individualism of the consensus. Patient autonomy is the cornerstone, both ethically and sociologically of the way we have approached decisions near the end of life for the past three decades. The legacy of that emphasis has produced a movement in favor not just of the right to refuse medical treatment, but also the right to medical assistance with suicide. The end of life is not the best time to wage battles on behalf of autonomy. Caring, family, mutual respect and love, and attentiveness to the dying person are the qualities most needed then. Our consensus has if anything been rather distrusting of families, and tends to make them morally invisible in the official dying process. They are empty conduits of the patient’s wishes. Mothers and fathers, brothers and sisters, relatives lose their names in bioethics and become “surrogates” or “proxies,” appropriately cold terms to denote an impersonal role.

• The middle class cultural bias of the consensus. Already suggested by the rationalism and the individualism of the consensus, this framework for decisionmaking at the end of life does not travel well across cultures and traditions within our increasingly pluralistic society. Durable powers of attorney for health care may literally be translated into many languages, but substantively they may often be incomprehensible. Is planning and decisionmaking the only or the most appropriate response to the recognition that one is dying? Is everyone’s first thought a concern to protect the family from being burdened? How does one respond to the suspicion, built up over a lifetime of experiencing discrimination, that advance directives are racist documents designed to limit resources offered to persons of color?

• The misdiagnosis of the problem. The consensus has always believed that inappropriately aggressive and unwanted treatment at the end of life is fundamentally a problem of prognostic uncertainty and poor communication. And yet, as the SUPPORT study demonstrated, physician behavior is not altered significantly by addressing uncertainty and poor communication alone. These are elements of the physician-patient relationship seen as a personal interaction. The fundamental problem with end-of-life care, however, may be structural and institutional in nature. In the modern acute care hospital virtually everything is oriented toward the use of life-sustaining equipment and techniques, not to forgoing them. The informal culture of specialty medicine, the reward system, the institutional pressures faced by family members, the range of choices people in extremis are being asked to make—each of these factors and more make up a system that is remarkably resistant to change when confronted with an ideal, counter-cultural decisionmaking model, even one that is to some extent backed up by the force of law and professional ethics.

Decisions Near the End of Life: The Ragged Edge of the Ethical and Legal Consensus by Bruce Jennings published in the Spring 2000 edition of the Ethics Network News, 6(2).
Article available on-line at: https://www.angelfire.com/on/NYCLTCethicsnetwork/My2000jennings.html

Next Article; More Good News
Previous Article
Spring 2000 edition of Ethics Network News
Ethics Network News Home Page
NYCLTCEN Home Page