American College of Physicians: Internal Medicine — Doctors for Adults ®

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From the President

Palliative care is the real focus of end-of-life medicine

From the July/August 1996 ACP Observer, copyright 1996 by the American College of Physicians.

This year the debate about whether physicians should be allowed to actively assist in hastening the death of patients has reached a new crescendo. Dr. Jack Kevorkian, who has caused the deaths of more than 30 people, is viewed as a kind of folk hero, and 60% to 70% of Americans consistently say they believe physicians should be allowed to provide a lethal medication to a patient facing a terminal illness who requests to die.

What is going on here? Do all these millions of people really want to commit suicide?

I believe the answer is no. What they are saying—and the message that physicians ought to be listening to—is that they are frightened to die in our hospitals and nursing homes. Many Americans have had a personal experience—with a family member or a close friend—of a prolonged death with unrelieved pain and suffering, with loss of dignity and human contact, and without any way to achieve personal or spiritual meaning from the closure of a life. Hospitals are dehumanizing places, and we have for too long taken this for granted, assuming that there is nothing that can be done about it.

The hospice movement has made major strides in the last 20 years toward providing a much better alternative. Now funded by the Medicare Hospice Benefit, hospice predominantly provides home care to patients who are not expected to live more than six months. But hospice, with its emphasis on home care and a fairly predictable course, will never really be able to take care of the majority of patients who die. Many patients do not have family members at home who are able to provide hands-on care for more or less 24 hours a day. It is unrealistic to expect families to drop everything and care for a dying patient at home for as long as it takes. Furthermore, many illnesses cannot be managed well at home.

But just because 80% of people who die are not able to benefit from our traditional hospice programs does not mean the principles of hospice care cannot be applied to them when they are dying. I hope this will be the major impact of the current debate about physician-assisted suicide.

The most important thing such discourse could result in is improved care of dying patients. In Oregon, a form of assisted suicide was legalized last year, and although the law is still being appealed, it is already having an effect on patient care. Susan Tolle, FACP, former member of the ACP Ethics Committee, reports that even though the Oregon law has not yet been implemented, hospitals have rushed to put in place palliative care teams. Awareness of the importance of comfort measures for dying patients has increased enormously, even in the year since the state legislation passed.

Additionally, activities to promote better care of dying patients are occurring on a number of fronts:

  • The American Board of Internal Medicine has just published a resource document for internal medicine training programs to improve the clinical competence of internal medicine residents in the care of patients at the end of life. This document draws on expertise in palliative care, including management of pain and other symptoms such as dyspnea, nausea and vomiting, as well as the psychosocial dimensions of working with families and acknowledging the spiritual significance of death for many patients.
  • The Institute of Medicine has begun a study of the quality of care at the end of life and is examining broad issues such as medical education and training, but it is also looking at how hospitals are structured, how payment is made and how social and professional assumptions pose barriers to the frank and open discussion of end-of-life issues.

Foundations and federal agencies are interested in studying how quality-of-care measures can be used to identify health plans that are performing either very well or poorly. Many worry that in the current environment of aggressive cost containment, rhetoric about improving care for dying patients may translate simply into less care, and not better care, for those facing critical or terminal illness.

  • HCFA has announced that as of Oct. 1, a new palliative care code for hospitalizations will be available. Because there has been no billing code or DRG for terminal care, physicians have feared that hospital days would be disallowed and the care not adequately paid for. This, undoubtedly, is part of the reason hospitals have not been aggressive about meeting the needs of dying patients and providing comprehensive, hospice-type care. HCFA's plan to study the use of the palliative care code and develop an appropriate payment rate for a DRG for terminal care should alleviate this problem and open the door to more explicit documentation about the real goals of comfort care for this group of patients.
  • The AMA is engaged in a major project on end-of-life care and is exploring ways to promote physician payment for palliative care under Medicare and Medicaid.
  • The Milbank Memorial Fund, a health policy foundation in New York, is supporting a task force on appropriate policies for end-of-life care that brings together palliative care experts with policy-makers to examine state legislation about controlled substance prescribing. Laws designed to control illicit drug abuse have often led to arbitrary and restrictive physician practices in drug prescribing. In many states, physicians are afraid to prescribe adequate doses of narcotics to patients with chronic pain or terminal illness because they have legitimate fears that their license may be jeopardized if they do so.

As physicians it is important that we be able to analyze all of the different factors going into this problem and develop strategies for overcoming them. In addition to more reasonable approaches to drug regulation, to improving medical education at the CME level as well as the medical school and training level, and to adequate assessment of pain and symptoms and to treatment, we also need more research on pain management and comfort care. We also should be learning how to hold difficult discussions with our colleagues and friends about facing our own mortality and, in the process, perhaps learning that therein lies the potential for personal growth of the physician as well as meeting the needs of patients and their families. We should be working with our hospitals to make sure we have the interdisciplinary expertise to identify preventable suffering and to treat it effectively.

If we do all these things, the situation will improve and the public demand for physician-assisted suicide will decline. It will probably never disappear altogether, so we must also engage in public dialogue about policy in this arena. As many opponents of assisted suicide point out, it will never be a clear-cut issue for us as long as we have so many vulnerable people who may be made to feel undue pressure to end their lives—not because they are exercising personal autonomy, but because they feel undervalued by society because they have no insurance, because they have profound disabilities or because they are so old that they are becoming a burden on society.

We should never allow these reasons to drive a patient's wish to die, but we should always be willing and able to talk to patients about their fears as they face the end of their lives, and offer them our very best effort to provide meaning and dignity and a guarantee of comfort in the last days of life.

Christine K. Cassel, FACP

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