NEW YORKThe majority of people in the United States die without discussing or documenting their wishes regarding end-of-life care. Estimates of the number of people who have actually prepared advance directives range from 5% to 25%, said Sylvia Pearl, LCSW, during a national teleconference sponsored by Cancer Care, Inc.
Apart from procrastination, there are several reasons people give for not filling out advance directives, said Ms. Pearl, a senior social worker at Cancer Care, Inc.
They may feel that family members will make the right decisions for them when the time comes or that they will upset family members by involving them in end-of-life planning. Others worry that advance directives may make it possible for health care providers and family to neglect or abandon them.
The medical profession, Ms. Pearl noted, has made important strides in supporting and participating in end-of-life planning. Nevertheless, physicians can sometimes present obstacles, she said.
Many physicians believe that their patients are the ones who should initiate discussions about end-of-life planning. Yet studies have shown that patients feel that their physicians should bring it up. Patients also feel that a routine medical visit is an appropriate setting for such discussions. In one study, only 15% of respondents reported having discussed living wills with their doctor, although 61% said they had wanted to do so.
Setting Goals in End-of-Life Planning
Too often advance directives focus on the types of treatment people do not want at the end of life and fail to spell out what they do want, Connie Zuckerman, project director, Hospital Palliative Care Initiative, United Hospital Fund, New York, said during the Cancer Care, Inc. teleconference. She outlined three sets of goals for end-of-life planning.
Physicians may feel that advance directives are unnecessary for young and/or healthy patients and, therefore, may discourage patients from talking about it. But physicians who do believe that end-of-life plans are appropriate for all patients report having more discussions with their patients about it and more patients who complete advance directives.
Family members may also have their own reasons for avoiding end-of-life planning discussions. They may project long-standing feelings or conflicts into the situation that prevent them from bringing it up or discussing it.
Even when end-of-life plans have been completed, they may not be carried out according to the patients wishes. The directive must be available, recognized and honored under clinical circum-stances to be implemented, she noted.
Family members may forget to bring directives to the hospital. Admitting staff may neglect to document the status of the directive or do it incorrectly. A hospital may not forward the directive.
Patients, believing they have a treatable illness and assuming their advance directives are only appropriate for terminal illnesses, may not bring them to the hospital. Family members may not realize there is a need to volunteer advance directive information for patients who are incapacitated.
Finally, physicians may not document advance directives because of their own discomfort with the topic or the belief that documentation is unimportant for a patient with an illness the physician presumes is reversible.
Nor does the presence of an advance directive on a patients medical chart ensure that the patients wishes will be followed, Ms. Pearl said. The physicians values may prove more decisive than the patients values in the end.
Yet, even just the act of formulating these directives may be beneficial to the patient. It can bring about important uplifting and therapeutic discussions between patients, health care providers, and families about issues that are emotionally and conceptually difficult, she said.
Completing an advance directive may lower a patients anxiety about death and treatment associated with the end of life. Often, patients are proud and relieved that they have taken steps they feel will control their care.
Promoting end-of-life planning and implementation requires a broad-based effort, Ms. Pearl said. Greater efforts need to be made through senior citizen centers, hospitals, and other health care facilities to increase peoples understanding of advance directives and to assist them in completing the forms.
Public education efforts on end-of-life planning also need to be directed at younger segments of the population, and more physicians need to learn how to formulate and implement directives.
Finally, advance directives needs to be integrated into the context of the patients life values and experiences (see box). The ultimate aim of advance planning, Ms. Pearl said, is to reduce suffering and promote patient autonomy.