ethics news & views

If I Should Die Before I Wake

A woman accompanies her husband to the emergency room after calling 911. It is 11:30 p.m. when they arrive - over two hours have passed since she began noticing the frightening signs of a stroke in progress. She had found her husband unable to speak clearly, his face sagging slightly on the right side, and his right arm weakened. She will have to make decisions rapidly now. Has too much time passed or is he still a candidate for administration of TPA? And if he is, will this have the desired effect of dissipating the clot and allowing for return of functioning or will it lead to further bleeding? If the effects of the stroke are severe, how much medical intervention does she want? Should the patient be a "do not resuscitate" patient? Does she know what her husband would want under these circumstances?

In most United States communities less than 20% of us have completed advance directives, documents instructing loved ones and health professionals about what medical care one wishes to receive if one is no longer able to communicate or make decisions for oneself. Perhaps a slightly larger number have discussed their treatment wishes, but research by Georgia Health Decisions and American Health Decisions indicates that Georgians and individuals nationwide resist having these difficult conversations. Many participants report that they assume their loved ones will simply know what to do. They are reluctant to talk in detail or put anything in writing that might lock them into a specific decision. Some report being concerned that talking about it will make it all too real, indeed might anticipate or cause something negative to occur.

Allowing oneself to think on these things, though uncomfortable, may be the most responsible, caring act we can make for closing out the living of our lives. Communicating clearly with loved ones about the wishes and the values that support your choices often provides immeasurable support to those whom we do not wish to be burdened by these weighty decisions. Though support for this process of advance planning is most typically rooted in the ethical concept of respect for individual autonomy or self-governance, another core, compelling concept is that of respect for interdependence.

Why interdependence? We are dying older, more often than not in institutional settings and typically after a protracted treatment process. Even for individuals who retain their ability to consider and communicate their preferences, care decisions are not solitary ethics exercises. Rather, care decisions are made in the whirl of the interchange of information, blankets of emotion, existential ruminations, values discernment, and relationships, old and new. Even the heartiest independent souls, once in this unfamiliar territory, find themselves in a tangled web, and if they are honest, may be glad that they are. Who would wish to wade through diagnostic, prognostic, and therapeutic information alone? Few really wish all their tears to be in isolated silence.

Being in relationship around a difficult decision presupposes a deep desire that those on whom you "inter-depend" are worthy of your trust and are good, caring counselors. Communication becomes an exquisite resource. Many physicians and nurses have much to learn about listening and creating an atmosphere in which patients and families feel free to talk about this most intimate area of illness, bodily insult, and death.

Ideally these conversations can be constructed long before an illness or accident necessitates the discussion. Beginning them at the point of arrival to the emergency room is far from ideal. Those who review their wishes with their physician on an annual basis and intentionally set aside time with family and loved ones to talk about their hopes and fears will have a much different basis for the tough questions. Well thought through and executed advance directive documents will only be of real use if they are founded on such conversations. In our initial analysis of surveys on current end-of-life practices in Georgia, heath care professionals report that in the face of family disagreement, patient wishes are often not followed. Preliminary conversations can avoid many of these destructive standoffs.

What guidelines or values do you hope would guide decision makers in your care? Though it is hard to look ahead to particular circumstances or to know with assurance what you might wish at that time, could you begin discussing some of your concerns with loved ones? Don't look for this to be a brief conversation. It may need to occur over time. And each potential member of the decision web should ideally be included. You may wish to record some of your reflections for future decision makers and consider attaching them as a codicil or attachment if you complete an advance directive. The fear and heartache of critical care and end-of-life decisions may be eased somewhat by embracing that dialogue now.

*There are two advance directives in Georgia, the Living Will and the Durable Power of Attorney for Health Care. You can obtain copies of these documents, which you can complete on your own, through most local hospitals. One internet site for obtaining state-specific directives is Choice in Dying at www.choices.org.

[ Posted by Kathy Kinlaw at February 1, 2000 02:11 PM | More Health Science Ethics articles ]

© 2000-2000 by the Center for Ethics, Emory University. Some rights reserved.