Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: MONDAY, November 27, 1995 TAG: 9511270097
SECTION: EDITORIAL PAGE: A5 EDITION: METRO
SOURCE: CHARLES HITE
DATELINE: LENGTH: Long
This dismal outcome is the latest evidence that the process of end-of-life communications is a complex and tricky business. It also underscores the failure of federal legislation designed to address this problem.
Four years ago the Patient Self-Determination Act was heralded as a way to assure that patients' preferences about medical treatment would be followed when they could no longer speak for themselves. The law capped a series of events over the previous two decades that sought to give more power to patients to make decisions about the way they lived and the way they died.
After a number of court decisions helped establish a consensus that patients did indeed have the right to refuse life-sustaining treatments, documents known as advance directives were seen as a way to extend that right to patients who lost their decision-making capacity. The Patient Self-Determination Act required hospitals and other health-care institutions to inform patients about their rights to control medical decisions through the use of living wills, durable powers of attorney for health care and other advance directive documents.
But the results of the mandatory and massive education program required by the act have fallen far short of what many had hoped for.
Despite the intent of the act, we know the vast majority of patients have not completed a formal advance directive.
We know that most patients have not had any sort of meaningful discussion with their physicians about the type of treatment they want at the end of their lives. Patients and doctors seem engaged in a game of ``Don't Ask, Don't Tell.'' Patients are waiting for the physician to initiate discussions about end-of-life decisions, but physicians remain convinced that to do so would upset their patients or undermine their trust.
We know that many patients believe their family members or their physicians will make the treatment decisions they would have made, yet studies show that families and physicians quite often have very different perceptions about what the patient really wants.
We know that some patients are comfortable with the notion that surrogate decision-makers might override the instructions outlined in their advance directives if there appears good reason to do so.
We know the treatment preferences and directions expressed in advance directives are often quite vague and difficult to interpret in specific situations.
We know that the preferences patients express in advance directives are very dependent on the way a question about treatment is phrased.
A review of journal articles over the past few years easily could lead one to believe that the Patient Self-Determination Act has been largely ineffective and that advance directives have done little to enhance the likelihood that patient wishes are an integral part of medical decision-making. Consider these few excerpts:
``Despite public enthusiasm for the use of advance directives and great efforts to promote them, we found little evidence that these documents are associated with enhanced communication between patients and physicians about end-of-life treatment decisions.'' That from an April 25, 1994, article in Archives of Internal Medicine that described structured interviews with 115 seriously ill cancer patients and their physicians.
``Advance directives were infrequently available and had little impact on the pattern of care.'' From the March 1995 issue of Chest describing a study of patients in a 13-bed medical intensive-care unit of a community teaching hospital.
``Quite simply, as far as we could tell, advance directives were irrelevant to decision-making.'' That from a study that looked at end-of-life decisions for more than 3,000 seriously ill patients at five major medical centers.
``The effectiveness of written advance directives is limited by inattention to them and by decisions to place priority on considerations other than patient autonomy.'' From a New England Journal of Medicine article in March 1991 describing a study of nursing home residents and family members.
While not all research on advance directives casts doubts on their usefulness, there are clearly some fundamental problems that need to be addressed. Some have suggested there has been too much emphasis on advance directives as an event rather than a process. Rather than view advance directives as written documents that are discussed, signed and locked away, we need to embrace the notion of advance care planning. In this scenario, advance directives are just part of what has been described as ``the larger process of communication among patients, their health-care providers, their families, and important others regarding the kind of care that will be considered appropriate when the patient cannot make decisions.'' This is a process that occurs over time, not just at one sitting.
Certainly physicians need to be encouraged to participate in the process. Physicians must realize that most patients are very receptive to having discussions about the type of care they want at the end of their lives. They need to know that these discussions generally do not provoke fear or mistrust in patients but rather that they can be vehicles for building trust in the physician-patient relationship.
Physicians must also receive education and training in how to have these discussions with their patients. At least one study has shown that simply providing physicians with a didactic lecture on end-of-life decision-making has very little effect on their willingness to talk to patients. What does help is for physicians to have mentors, colleagues whom they can actually observe having conversations with patients.
Even if we learn to overcome the barriers that prevent good communication and understanding of patient preferences, many perplexing issues still arise in advance care planning. What is the role of families in end-of-life decision-making? Are there limits to what patients can ask for in advance? How do we resolve differences among ethnic and religious groups about limitations on patient preferences? Can advance directives be overridden and, if so, under what circumstances?
Clearly the Patient Self-Determination Act has not assured that patient preferences always will be followed when the patient is unable to communicate those preferences. But it has forced us to pay more attention to the way decisions are made. And it has helped us recognize that good decision-making is an ongoing process involving patients, physicians and family - not a piece of paper frozen in time.
Charles Hite is director of Biomedical Ethics for Carilion Health System.
by CNB