RECENT DEVELOPMENTS IN END-OF-LIFE DECISIONMAKING

By Thomas J. Murphy

            In May 2004, the Maricopa County (Phoenix, AZ) Bar Association had its annual ethics seminar that focused on the troublesome and delicate issues involving end-of-life decisionmaking.  The featured speaker was NAELA member William H. Colby, the Kansas City attorney who had represented the Cruzan family in their legal battle against the State of Missouri to allow the family to withdraw the feeding tube from their daughter, Nancy, who was in a persistent vegetative state. 

The Cruzans’ eight-year ordeal is chronicled by Mr Colby in his extremely well received book, “Long Goodbye: The Deaths of Nancy Cruzan”.  The case ultimately found its way to the United States Supreme Court resulting in the landmark case, Cruzan v Director, Missouri Dept of Health, 497 US 261 (1990), which Mr Colby argued on behalf of the Cruzan family.  The Supreme Court ruled that individuals have a constitutional right to refuse unwanted medical treatment.  While the Cruzan case helped clarify many of the legal aspects on end-of-life decisionmaking, there still remains serious practical problems, as indicated in the recent Schiavo case in Florida.  Mr Colby and a panel of medical experts discussed these problems and the potential solutions.

Mr Colby began his presentation by discussing the extraordinary advances in medical technology during the past 40 years.  He noted that, until then, the heart, brain and lungs all died at the same time.  The fact that is no longer true is the crux of all problems encountered in end-of-life decisionmaking. 

Mr Colby’s presentation focused on how practitioners can help families in resolving these vexing issues.  His solution is to emphasize to clients the need to talk with their spouses, adult children, parents, doctors, clergy members and anyone else who may play a role in our clients’ healthcare decisionmaking when our clients are no longer able to do so. These desires, in turn, need to be sufficiently explained in writing in a living will. 

The Cruzan case made it clear that it is the patient’s expressed desires that control.  The Patient Self-Determination Act, 42 USC 1396(a), passed shortly after the Cruzan case was decided, codified this concept.  But the litigation and other disputes in this area normally center around determining what those desires are when the patient is no longer able to express them.  The legal problems begin when the family members or other surrogate decisionmakers disagree as to what the patient wants. 

The ongoing Schiavo case is indicative of this.  Mr Colby noted that Florida law is very clear: when there is no living will, healthcare power of attorney or other advanced medical directive, Florida, like most states, sets forth a hierarchy of surrogate decisionmakers with the spouse having top priority.  The ugly dispute has erupted because Ms Schaivo’s parents disagree with the husband’s assertions as to what were Ms Schaivo’s intentions.  The law provides no easy answer to this situation.

Mr Colby had a similar experience in Cruzan.  The Supreme Court had ruled that it was permissible for the State of Missouri to require clear and convincing evidence of Nancy Cruzan’s own wishes before treatment could be withdrawn.  On remand, Mr Colby and the Cruzan family had to prove this.  The Cruzan case generated considerable national publicity.  Things broke the Cruzans’ way when two former co-workers of Nancy heard of the case and notified the family that they had had lengthy discussions with Nancy several years before her automobile accident regarding her desire to forego certain end-of-life treatments.  Their testimony at trial constituted sufficient evidence for the trial court to rule in the Cruzans’ favor.

But Mr Colby warned his audience not to count on such lucky breaks.  Instead, practitioners need to be urging our clients to have “the talk” with family members and other potential healthcare decisionmakers.  Mr Colby noted that there is a very important point that has not been reported by the national press covering the Schiavo case – Terry Schiavo and her husband lived with her parents for many months after they were married but they never had “the talk”. 

It is never too early to have this talk.  It is not just a matter for the elderly.  Mr Colby emphasized that both Nancy Cruzan and Terry Schiavo were young women in their 20’s when tragedy struck. 

In short, family squabbles need to be eliminated at all costs.  Not only can it tear apart a family, but it can also disrupt the medical care that the patient is receiving.    Mr Colby stated that, on three different occasions, Florida courts have ordered Ms Schiavo’s feeding tube to be removed and then later ordered it be reinserted.  Or, if a child is upset with the decision and is threatening to retain a lawyer or complain to the local media, Mr Colby warned that hospital administrators will never overrule the angry child, regardless of the opinions of the other children. 

Mr Colby’s presentation was followed by a panel discussion with Dr Gillian Hamilton, a Phoenix gerontologist, Barbara Volk-Craft, a prominent hospice nurse, and John Rivers, CEO of the Arizona Hospital Association.  Most of the panel’s discussion dealt with drafting more precise and effective living wills.  Dr Hamilton noted that virtually all living wills are only triggered when the patient is terminally ill and in a irreversible coma or persistent vegetative state.  The problem is with patients suffering from Alzheimer’s/dementia or a stroke.  These are conditions that are not considered to be terminal by the medical community.  Proper drafting needs to include these conditions as being terminal so that, if the patient is comatose, the living will can be implemented.

The panel also felt it was a mistake to draft a living will in terms of interventions.  (“Intervention” is the medical buzzword for treatment of the ailment.)  Avoid using terms like IV tubes, CPR, antibiotics and so on.  Instead, focus on the goals of treatment.  For instance, is the goal to have the patient return to all possible levels of premorbid functioning?  Or is it to make the patient’s last days as comfortable as possible?  A living will can address what is an unacceptable quality of life, such as inability to communicate, inability to recognize family or friends, total dependence on others for care or pain that cannot be controlled without sedation or confusion.  (For an excellent sample form created by Health Care Decisions, a nonprofit institute in Phoenix devoted to educating the community about advanced directives, visit www.hcdecisions.org or call 602-222-2229 for a very informative packet with forms.) 

The medical community is much more comfortable in approaching the situation in this goal-oriented fashion.  It is almost impossible to adequately list all interventions that a patient may or may not desire since it is an endless list of possibilities that grows longer with each passing day. 

Instead, focus on drafting with the goals in mind.  There is no limit on what can be addressed in a living will or other health care directive.  For instance, one panelist has occasionally encountered the problem of a patient who could no longer be spoon-fed.  This will normally require the insertion of a feeding tube that many patients abhor.  Instead, a precisely drafted health care directive could limit the period of time that it would take to feed a meal to the patient and then refuse further nutrition.  Or another panelist had a patient whose living will stated that, if he was no longer able to play a round of golf each day, then he would refuse any further medical treatment.

Several interesting medical anecdotes were discussed.  The statistics regarding the success rate of CPR for the elderly is astounding.  When CPR is administered outside of a hospital to a person over the age of sixty-five, only three per cent of patients survive to be discharged from a hospital and nearly all of the three per cent live in a skilled care facility.  In other words, the chances of returning to the residence are virtually zero.

This extraordinarily low success rate is due to the fact that CPR was never intended for use upon the chronically ill.  It also reminds us of the limited use of a pre-hospital directive (the document indicating a person’s refusal to allow CPR).  This document should only be used for the elderly or chronically ill.  It should never be used for our younger, healthy clients.

Another interesting medical discussion centered around the progression of Alzheimer’s/dementia.  Strictly speaking, no one dies of Alzheimer’s.  Rather, they die of a condition created by Alzheimer’s.  Most often this is pneumonia.  The reason for this is that a person with advanced Alzheimer’s loses the ability to swallow, causing aspiration problems.  Foreign matter, usually saliva, enters and builds up in the lungs, causing the pneumonia.

The panel had several interesting observations regarding the withdrawal of hydration and nutrition.  Patients do not starve to death in these scenarios.  Medical providers no longer withhold nutrition but only hydration.  Over the past couple decades, the medical profession has learned that withholding hydration causes death much faster than withholding nutrition.  The lack of hydration creates renal (kidney) failure that causes a fairly painless death, usually within days and always within a month on the withholding of the nutrition.

The panel agreed with Mr Colby that the silver lining in cases such as Cruzan and Schiavo is that they are causing people to talk about these issues and heighten awareness.  The elderly are very willing to talk about these issues and are often emphatic in their convictions.  As a result, there is no need for attorneys to tiptoe around this issue.  A well-drafted health care directive has a real and obvious value to these clients.

The panel then addressed the Pope’s recent pronouncement on the withholding of hydration and nutrition.  On March 20, 2004, Pope John Paul II stated that such withholding cannot be “ethically justified” and constituted “euthanasia by omission”.  The Pope went to say that “the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act”.  (Emphasis in original.)

Mr Colby pointed out that this was contrary to the Supreme Court’s holding in Cruzan, where the Court recognized artificial nutrition and hydration as medical treatment.  The panel pointed out that the Pope’s pronouncement has had no discernable effect on the nation’s 600 Catholic hospitals.

Mr Colby’s highly regarded book can be purchased from his website, www.LongGoodbye.org, which also contains useful resources and links on end-of-life decisionmaking.

The entire three-hour seminar was videotaped.  The tape and materials can be purchased by contacting Geoff Cummings of the MCBA, 602-257-4200, x107 or gcummings@mcbabar.org.

Thomas J. Murphy is an elder law, probate and estate planning attorney located in Phoenix, Arizona.  He can be reached at 480-838-4838 or info@murphylawaz.com