Directive: take your time

Dr. Erik Steele’s invitation in your April 26 edition to join him and other professionals on May 11 for a workshop and discussion about “end of life care” and advanced health care directives represents an important opportunity and service to the public. Indeed, Eastern Maine Medical Center and St. Joseph Hospital are to be applauded for sponsoring this event.

However, it seems both unnecessary and inappropriate to stimulate interest in this very important matter by romanticizing the tragic circumstances and unprecedented publicity surrounding Terri Schiavo’s death. In fact, two earlier situations involving the rights of a young woman in a permanent vegetative state provide the constitutional basis for all of us to seriously consider completing such health care directives. George Annas – a leading medical-legal expert and ethicist – has summarized that history in the April 21 New England Journal of Medicine as follows.

In 1976, the New Jersey Supreme Court ruled in the case of Karen Quinlan that life-sustaining treatment – in that case a ventilator – could be removed when “no reasonable possibility of a patient returning to a cognitive, sapient life” existed and that physicians and others involved in the case could not be held responsible for the death either criminally or civilly.

In 1988, the Missouri Supreme Court ruled in the case of Nancy Cruzan that tube feeding could be discontinued based on the individual’s right to self-determination. However, if the individual had not made that decision previously and could not do so presently, then tube feeding could be stopped only if the evidence that he or she would refuse tube feeding if he or she could speak for himself or herself were “clear and convincing.”

In 1990, the U.S. Supreme Court affirmed the Missouri Court’s ruling in a 5-4 decision and acknowledged that the state had the authority to adopt such a high standard of evidence (although it was not required to do so). Justice Sandra Day O’Connor pointed out in her concurring opinion that even a simple oral statement clearly defining one’s wishes or intentions in such a situation should serve as a constitutionally protected authority to decide about treatment. Subsequently, the Cruzan case energized a virtual movement encouraging all of us – both young and old – to create appropriate written documentation of our designation of someone to make health care decisions for us if we are unable to do so by completing a health care proxy, directive or power of attorney.

Unfortunately, the Schiavo case was plagued by a family dispute that degenerated into a feud fanned by the media and played out at the bedside, in the courts, and in the U.S. Congress itself. Hopefully, that shameful display will stimulate all of us to become informed fully about the issues involved and to document our wishes appropriately.

However, when one sits down to actually define one’s wishes and to contemplate the various circumstances that might be involved, one often finds that the matter is more complex and far more difficult than one might have imagined. These are not issues that we look forward to grappling with, and, more often than not, multiple discussions are necessary over time. Furthermore, these discussions usually require the personal assistance of someone whom we trust to help us work through the possibilities and details – individuals including loving family members and-or friends, our personal physician, and-or our attorney. In addition, absent an emergency or immediate need for such a health care document, many professionals advise that the individual not attempt to finalize his or her thoughts and not execute such a document during an initial discussion.

Therefore, I strongly suggest that the goal of completing a health care directive at the workshop on May 11 is ill advised for most individuals. To be sure, the workshop, public discussion, and opportunity to learn more about what is actually involved will do more than justify the effort made in sponsoring this event. In my view, however, the evening should be considered a first step. The issues and decisions involved are too important to be rushed and, under most circumstances, should not be dealt with quickly.

It may be that some who will attend will feel well-prepared to complete such a document after obtaining helpful information earlier in the evening. Others will not be so well prepared, even at the end of the evening. All of us will benefit from attending and participating in the workshop. However, based on my experience discussing such matters with individual patients in the past, and having thought about these issues seriously long before completing my first health care directive only to find myself modifying it subsequently, I suggest that one ought not rush to “bring home the gift of an advanced directive for you and those you love” at the end of this very informative evening.

Richard C. Dimond, M.D., is a retired physician living in Southwest Harbor.