Advance medical directives: Have you done enough for your patients?
By William A. Reynolds, FACP
End-of-life issues have received a great deal of emphasis in recent years. One aspect that most internists need to address is patients' personal preferences when it comes to end-of-life care.
It is important for patients to express their health care preferences before they become mentally incompetent or otherwise unable to make such a decision. Sadly, for up to 70% of Americans, someone else will decide whether to provide life-sustaining medical care when illness becomes terminal or irreversible.
The "ACP Ethics Manual" states that patients should create a living will and appoint a proxy decision-maker to ensure they receive the care they want should they become mentally incompetent. Laws regarding end-of-life care vary state by state, so physicians need to familiarize themselves with local law.
Typically, however, living wills apply only in cases involving a "terminal condition," generally defined as an irreversible condition that makes death imminent. Thus, living wills do not usually apply to patients in nursing homes with advanced Alzheimer's disease or to patients in a chronic vegetative state, unless a terminal state develops.
Even though most state statutes do not contain language that allows an advance directive for nonterminal states, there are several legal precedents that allow patients to expand living wills to cover all future care. Most courts, for example, have addressed the issues of withdrawing artificial life support, discontinuing nutrition and hydration, and the right to refuse treatment in settings not covered by living will statutes. These issues can be covered in an addendum to a living will. Nearly 20 years ago, I wrote an addendum to my own living will, and I systematically encourage my patients to do the same. (For a model of a living will addendum, see the April 1987 issue of the Western Journal of Medicine.) Because laws on these issues vary from state to state, you should get a legal opinion before advising patients about such directives or carrying them out.
I have found that to actually convince patients to execute a living will and addendum requires more than an informational discussion. Physicians need to supply the proper forms and a written guide or example of an addendum. Attorneys can provide useful advice regarding advance directives and heath care power of attorney, but formal legal advice is not required because advance directive forms are fairly easy to complete.
Most of my patients have elected to sign the copy that I provide, either with or without changes. For patients who want to write their own living will addendum, see "The Medical Directive: A New Comprehensive Advance Care Document," published in the June 9, l989, issue of the Journal of the American Medical Association. I request that patients mail a copy of their living will to my office; I then display the words "living will" in red letters on the front of their chart.
In addition to creating a living will and an addendum to cover nonterminal conditions, patients can also appoint a proxy decision-maker through a "durable power of attorney" statute for health care decisions. This grants decision-making power to someone acting on behalf of the incompetent patient.
Ethical considerations are clearly involved when discussing life-and-death issues. Ethical principles from ACP and the AMA recognize that the principle of patient autonomy, sound medical treatment and practical considerations should guide the physician in these scenarios.
Physicians must thoroughly discuss the matter and allow patients to express their wishes and concerns. Ethical principles clearly state that patients have the right to choose their own future care, a right that physicians must respect. (The subjects of euthanasia and assisted suicide are different issues and not part of this discussion.)
Living wills may be hard to talk about, but in my general internal medicine practice I have found that most patients—particularly seniors—are eager to talk about the subject and often complete an advance directive once the documents are made available.
Some naysayers regard living wills as ineffective and cite studies that show living wills are ignored by doctors about half the time. I suspect that such is not the case in community hospitals, where terminal care is supervised by the primary care physician.
I feel strongly that all primary care physicians should have forms available that are tailored to their state statutes. These forms should include living wills and durable power of attorney for health care or proxy agents, as well as an example of addendum instructions to living wills as described above. Forms of the first two types can be obtained from your state or purchased from the AMA, 50 forms for $17 (800-AMA-3211). The public can purchase these forms from the American Association of Retired Persons (AARP) for $5 (Legal Counsel for the Elderly, AARP, P.O. Box 9647, Washington, D.C. 20090-6474) or from Choice in Dying Inc., for $3.50 (Box 397, Newark, N.J. 07101-9792). These forms are tailored to the individual state requested and accompanied by a guide book.
All physicians, particularly the patient's personal or primary care physician, have an ever-increasing list of obligations and duties to carry out in providing comprehensive care, but I would rank advance directives at the top of this list. Advance directives may require some effort to obtain from each of our patients, but they help ensure that an individual's preferences for end-of-life care are clear and legally enforceable. Have you completed your own advance directive?
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