Approaching Death : Improving Care at the End of Life

When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening.

Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care.

This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life:

• Determining diagnosis and prognosis and communicating these to patient and family.
• Establishing clinical and personal goals.
• Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances.

Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."

The Institute of Medicine (IOM) study of end-of-life care was initiated by a request to develop guidelines for limiting futile treatments, but it was soon determined that such a task might itself prove futile. Instead, the IOM embarked on a large-scale study of a broader issue -- the status of care for the dying. The study sought to evaluate the state of knowledge in the field, methods for assessing outcomes, patients' preferences, and the quality of care and to identify barriers to high-quality care and propose steps for improvement. An impressive amount of thought and energy went into the work of the 12-member committee of experts and its staff, which held public meetings, reviewed and critiqued literature and testimony, and compiled a 418-page report. As a summary and critique of the state of affairs nationally, the IOM report can certainly be viewed as a definitive work.

If death is a part of everyone's life, why was such an exhaustive study thought to be necessary? In fact, since the IOM study was conceived, there have been many national and regional initiatives to improve care at the end of life; the 42 listed in this book represent only some of the growing number of alliances, local and regional programs, and other initiatives that are appearing on the scene. Likewise, funding for research, education, and programmatic initiatives for end-of-life care has increased briskly. What accounts for this surge in interest?

In parallel with the frenetic pace of research since the mid-1960s on ways of saving and extending lives, the death-and-dying movement was growing. An early response of the public was the living-will movement. My first encounter with a living will was in 1981, while reading through the chart of a new patient. The healthy and genteel woman in her late 70s leaned across the desk and pointed to a document in the chart, tapping her finger on it repeatedly. "That's my living will," she said, looking at me steadily, "and I want you to honor it."

The federal Patient Self-Determination Act now mandates that the health care system notify the patient of his or her legal rights, and not the other way around, and today, all states have laws governing advance directives. However, the living-will movement was consumer-driven -- a cri de coeur from Americans who wanted control over the process of dying. More recently, the highly publicized suicides assisted by Dr. Jack Kevorkian have met with anger and ridicule from many health professionals but with support, if not praise, from many health consumers. Assisted suicide remains highly controversial and generally illegal, but until patients feel confident that their physicians and the health care system will meet their needs at the end of life, there will be loud calls from the public for methods that circumvent established patterns of care. Meanwhile, as the IOM report notes, there is a demographic and social imperative: the population is aging, and end-of-life care is largely paid for by public funds. Although death and public funding are by no means exclusive to the elderly, 70 percent of those who die are elderly persons covered by Medicare, and half of all the costs of nursing home care are paid by Medicaid.

The introductory chapters of the IOM report provide thorough background, define fundamental terms and principles, and profile death and dying in America, including a historical overview of death rates, causes, and the places and ways in which people die. Attitudes are discussed, and it is interesting to learn that widely based assumptions that America is a death-denying society are not well documented. Rather, one may need carefully to examine the contention that altering our attitudes about dying will necessarily reduce our anxiety.

The many ways in which people die are illustrated with composite cases. These cases will ring true to clinicians who have dealt with such situations, but it seems of the utmost importance to include these graphic representations of reality, for this work will be read by policy makers who will have to tackle issues well detailed in this report, including issues of accountability, reimbursement, health care delivery, legal and economic realities, concepts of quality of care, and educational and research imperatives. These same policy makers may, however, have had little or no experience with clinical realities at the grass-roots level.

The cases illustrate the important aspects of end-of-life care -- namely, the physical, psychological, emotional, spiritual, and practical dimensions -- and the importance of continually redefining goals for the patient. Whereas pain control might be the most important need for some patients, for others, maintenance of cognition, function, or dignity might be prime. Others might wish only to avoid being a burden on their loved ones. In the case of someone without cognitive function, the greatest distress might be experienced by family members who "can't bear to see him suffer" but might gain comfort from knowing that the patient's suffering is less than their own.

The types of end-of-life care are enumerated -- in hospitals, in nursing homes, at home, with and without hospice care, and by managed-care organizations. In each setting, there are important questions to ask. How does the care given address the needs of the patient and family? How well are clinicians equipped to meet those needs? How are transitions from one care setting to another handled? How is the quality of care assessed and ensured in each of these settings? We read that caution is needed in applying traditional ways of measuring outcomes to end-of-life care. Obviously, mortality rates are an inappropriate measure. Rather, outcome measures must address the management of symptoms and new issues, such as self-image, sense of control and dignity, spiritual well-being, and autonomy. In reality, these do not differ much from the goals of healthy persons. However, addressing these issues becomes much more consequential for the dying, since they have little time left.

Outcome measures linked to cost can be particularly misleading in severe and terminal illness, because, wrongly applied, these measures might lead to the rewarding of systems that exclude the very ill. Moreover, costs are disease-specific; chronic illness is always more expensive than illness that leads rapidly to death. An interesting chapter on financial and economic issues expands on these complex issues and takes on the troublesome task of dealing with issues of cost while at the same time addressing hospice services, advance directives, futility guidelines, rationing, and other sensitive questions.

The IOM report on end-of-life care has wide applicability. It provides not only recommendations for policy makers, but also data, critical review, prognostic guidelines (with commentary), and useful lists -- resources, assessment tools, programmatic initiatives, and tools for developing curriculums, to name a few.

Reviewed by Judith C. Ahronheim, M.D.
Copyright © 1998 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.