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A SUMMARY OF IMPORTANT CONTRIBUTIONS TO THE COMPASSIONATE CARE OF DYING PATIENTS

Bernat, James L. MD

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Dr. Bernat is Professor of Medicine (Neurology) at Dartmouth Medical School in Hanover, NH.

CARING FOR PATIENTS AT THE END OF LIFE: FACING AN UNCERTAIN FUTURE TOGETHER BY TIMOTHY E. QUILL 248 PAGES • OXFORD UNIVERSITY PRESS 2001

Timothy E. Quill, MD, of the University of Rochester School of Medicine and Dentistry, is a remarkable physician. He is at once a leading practitioner and teacher of palliative medicine, a national spokesman for improvements in the care of the dying, and a prominent figure in the movement to legalize physician-assisted suicide. Caring for Patients at the End of Life–his most recent book – is a short, well-written, and highly personal series of essays on various aspects of palliative medicine in the care of dying patients. It contains an anthology of rewritten articles published previously, and a few new ones.

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DEATH AND DIGNITY ARTICLE

Dr. Quill achieved national attention in 1991 following the publication of the New England Journal of Medicine (NEJM) article, “Death and Dignity: A Case of Individualized Decision-Making.” This essay told the poignant story of his patient Diane, a plucky young woman for whom he had cared over a number of years prior to her terminal illness. Within a brief time, she developed acute leukemia, refused chemotherapy, became terminally ill, requested a prescription of barbiturate capsules with the intent of using them to commit suicide, and apparently did so at home after saying goodbye to family and friends.

Dr. Quill stated her cause of death on the death certificate as leukemia but clearly believed she had taken the barbiturates to commit suicide. The NEJM Editor-in-Chief, Marcia Angell, MD, who also wrote this book's foreword, found the story moving and important. She wanted to publish it but worried about the legal consequences for Dr. Quill, because in the article he seemed to have confessed publicly to assisting a patient's suicide, an illegal act in New York.

As is now well known, following Dr. Quill's stated willingness to proceed, NEJM published the story. Its publication evoked a firestorm of reaction in the scholarly and public press similar to the reaction to the “It's over, Debbie” story of casual euthanasia published in the Journal of the American Medical Association (JAMA) three years earlier.

Some commentators praised Dr. Quill's courage and fierce loyalty to Diane while others attacked him for unethical behavior and publicly flaunting the law. A zealous district attorney combed through county death records until he found Diane's case and then impaneled a grand jury to charge Dr. Quill. But in a widely reported decision, the grand jury refused to hand down an indictment.

Figure. This most re...
Figure. This most re...
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PUBLIC ROLE AS PLAINTIFF

Dr. Quill's next prominent public role was as plaintiff in the case of Quill versus Vacco, a case that tested the constitutionality of a New York law prohibiting physician-assisted suicide. The case reached the United States Court of Appeals for the Second Circuit in 1996. In a highly publicized decision, the Second Circuit Court ruled that the New York law banning physician-assisted suicide was unconstitutional because it violated the equal protection clause of the 14th Amendment.

One month earlier, the United States Court of Appeals for the Ninth Circuit had issued a similar ruling in Compassion in Dying versus Washington because it violated the “due process” clause of the 14th Amendment. Both courts propounded the counterintuitive view that there was no important legal distinction between the established constitutional right of citizens to refuse life-sustaining therapy and their purported right to request physician-assisted suicide.

The following year, in Vacco versus Quill and Washington versus Glucksberg, the United States Supreme Court overruled both US Circuit Court decisions in their ruling that there was no constitutional basis for a right of citizens to receive physician-assisted suicide and therefore state laws banning it were not unconstitutional. The Supreme Court affirmed the common-sense view that patients' refusals of therapy were constitutionally protected but their requests for specific treatments or acts (like physician-assisted suicide) were not.

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ADVOCACY FOR THE DYING PATIENT

Although Dr. Quill has attracted the greatest national attention for his advocacy of legalizing physician-assisted suicide, his current book shows that this concern accounts for only a fraction of his interest in the care of the dying patient. The editing and republication of a dozen of his mostly co-authored papers over the previous decade comprises an impressive opus of thoughtful, compassionate, and practical commentary on the care of the dying patient. They are well worth reading even if one read many of the chapters when they first were published.

Dr. Quill organizes the book into three sections: underlying values and assumptions; the medical interview; and difficult clinical and ethical issues. The story of Diane is reprinted in the first section followed by a lengthy commentary analyzing the meaning of the case. In this section, he includes his excellent paper with Christine Cassel on the fundamental ethical duty of non-abandonment of patients. This duty and the concept of partnership between doctors and their dying patients (discussed in a separate chapter) formed the basis of his decision to provide Diane with barbiturates when she was terminally ill and in pain. His essay on humanism in medicine provides a reasonable definition and useful criteria for measuring this essential but elusive quantity.

The second section contains Quill's helpful paper on delivering bad news that he had written originally with his wife. An excellent chapter follows on how to discuss palliative care with patients, written originally with Bernard Lo and James Tulsky.

The chapter on palliative care for patients with severe dementia is of particular interest to neurologists. His chapter, “Doctor I want to die. Will you help me?” published originally in JAMA, thoughtfully discusses how physicians should respond to patients' requests for assisted suicide or euthanasia.

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CRITICISM OF THE DOUBLE EFFECT RULE

The final section contains several controversial topics including Dr. Quill's outspoken criticism of the validity and usefulness of the ancient rule of double effect in medical ethics. The rule assesses the morality of a single act that produces two opposite effects: one desirable and intended, and one undesirable and unintended though foreseen. He argues that the rule is unnecessary, that it unrealistically characterizes physicians' intentions, and fails to account for patients' wishes. Readers should be aware (because Dr. Quill fails to mention it) that a careful rebuttal of this criticism was published in 1999 by Daniel Sulmasy and Edmund Pellegrino (Arch Intern Med 1999;159:343–350).

Two of his recent papers on the topic of “palliative options of last resort” with Bernard Lo and Dan Brock are combined and reprinted here. He makes a head-to-head comparison of refusal of life-sustaining therapy, refusal of hydration and nutrition, terminal sedation, physician-assisted suicide, and voluntary euthanasia.

Dr. Quill's definitions are standard and generally accepted. He makes two useful points: that the precise categorization of a particular act may depend on its clinical context and observer interpretation; and that despite fairly clear theoretical boundaries among these palliative options, some cases reside in gray areas between the categories.

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WRITING STYLE

Dr. Quill's writing style is relaxed, conversational, clear, and rational. He presents a series of personal patient case reports in considerable detail to illustrate points he makes and to explain the lessons his patients taught him. He ends with a poignant case report of his own brother's tragic death in which Dr. Quill ironically finds himself on the family side of the medical conversations about a dying patient.

This book is an able successor to Quill's popular book A Midwife Through the Dying Process (Johns Hopkins, 1996). It comprises an important summary of the contributions to the compassionate care of dying patients made by Timothy Quill and his colleagues over the past decade.

©2002 American Academy of Neurology

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