> Advance directives & end-of-life decisions

Advance directives & end-of-life decisions

Charles Hite

The USA has been the testing ground for living wills for several years: as the UK steps up its own awareness of such documents, can we learn from the experience across the Atlantic? Or are we in danger of falling prey to optimistic enthusiasm? Bioethicist Charles Hite is the Director of Biomedical Ethics Sertvices for the 13 hospitals and allied health organisations in Southwest Virginia. In the following article, taken from his introduction to a recent conference in Roanoke, Virginia, entitled "Deciding How We Die: The Use and Limits of Advance Directives", Professor Hite outlines some of the known facts about advance directives and some of the common misapprehensions.

Nearly four years ago the Patient Self Determination Act came into being in the United States with the hope of assuring that patients' preferences about medical treatment would be followed when they could no longer speak for themselves. This federal law was the latest in 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 became the latest vehicle for promoting autonomy, requiring hospitals and other health care institutions to inform patients about their rights to control health care decisions.

The results of the mandatory and massive education program required by the act have fallen short of what many had hoped for. Despite the intent of the act, we know that 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 the game "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 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 could easily 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. Listen to these few exerpts:

"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 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 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 co-authored by Dr Joanne Lynn, that looked at more that 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 patients 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 doubt on their usefulness, there are clearly some fundamental problems that need to be addressed. Some have suggested that 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, there are still many perplexing issues 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 overriden and, if so, under what circumstances?

Charles Hite is general editor and contributing author for "Introduction to Clinical Ethics" published by University Publishing Group in Frederick, Maryland in the Spring. We hope to bring you more about this pivotal conference on living wills in a future issue. (This issue: see also p.13) We continue to suggest to readers to view your living will as only one part of an overall and ongoing communication process with your doctor.

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Advance directives & end-of-life decisions

Charles Hite