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Alternatives in Dying Well: California Doctors Must Now Tell All

Although mentally competent citizens of the United States do not have a right to die, they do possess the right to refuse any medical intervention even if doing so results in their foreseeable deaths. Unfortunately, many dying patients needlessly suffer because they don’t know this. On September 30, Governor Arnold Schwarzenneger of California signed into law legislation that I think will help.

Known as AB 2747, or the “Right to Know End-of-Life Options Act,” it requires physicians and other authorized health care professionals fully to inform terminally ill patients about their legal options when they ask about them. If these professionals do not want to do this, they must refer their patients to others who will.

This legislation creates no new rights. Neither does it require professionals to discuss these alternatives with patients who do not ask about them. It merely requires professionals to tell their inquiring terminally ill patients the truth, the whole truth, and nothing but the truth about their existing legal rights.

In 1986, the California Supreme Court established the right to refuse even lifesaving artificial nutrition and hydration—food and fluids—in a case regarding Elizabeth Bouvia. She was a bright young woman with quadriplegia who checked herself into a hospital and requested that she be kept comfortable as she starved herself to death.

I was involved in some of the deliberations about Ms. Bouvia’s requests more than two decades ago. They were difficult to honor because they pressed the doctors into an ethically uncomfortable position between their duties to do no harm, on the one hand, and to respect their patient’s autonomy, on the other. I think we hit bottom when a legal specialist from elsewhere facetiously suggested that we have her arrested for trespassing the hospital’s property.

I now wish that we were more successful in forming a “contract” with her wherein we would grant her wishes, but only after she had given us a mutually acceptable length of time to deal with her depression and to improve her circumstances. The fact that she didn’t exercise the right to refuse treatment that the California Supreme Court eventually granted her, and all other similarly situated patients, tempts me to think that greater success along these lines might have kept the case away from the media and out of the courts. According to a May 10, 2008, Los Angeles Times obituary for longtime University of Southern California professor and disabilities activist Harlan Hahn, Elizabeth Bouvia is still alive.

Four years later, in 1990, the United States Supreme Court confirmed the right of all competent citizens, or their appropriate surrogates, to refuse lifesaving medical treatment in a case regarding Nancy Beth Cruzan. She was another bright young woman who had been irreversibly unconscious since the night of January 11, 1983, when she was found lying facedown in a ditch with no breath or pulse. She was not far from the road in Missouri where she had lost control of her car about fifteen minutes earlier.

After it had become clear to all that she would not recover, her parents asked that the artificial nutrition and hydration procedures (“tubes”) be removed and she be allowed to die. The medical center refused, the trial court sided with her parents, and the Missouri Supreme Court reversed its ruling on the grounds that her representatives had not provided “clear and convincing” evidence that she did not want to live this way.

The U.S. Supreme Court determined that the state of Missouri was constitutionally entitled to mandate this standard and returned the case to the state, having ruled on this narrow issue. Yet it also stated that “we assume that the United States Constitution would grant a competent person a constitutional protected right to refuse lifesaving hydration and nutrition.” This assumption makes all the difference!

At the new trial in Missouri, the court was satisfied by the additional testimony of Ms. Cruzan’s friends, who had missed the earlier deliberations because they had not known her by this name, that the norm of “clear and convincing” evidence had been met. The artificial nutrition and hydration were discontinued the middle of December in 1990 and Ms. Cruzan died the day after Christmas. Her father took his own life six years later. Two years after that, in 1998, her mother reportedly died after refusing chemotherapy.

Some who say that the right to refuse treatment should not include the right to reject artificial nutrition and hydration denounce this new law because it does. In its preliminary lists of definitions, it states that

‘Refusal or withdrawal of life-sustaining treatment’ means forgoing treatment or medical procedures that replace or support an essential bodily function, including, but not limited to, cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration, dialysis, and any other treatment or discontinuing any or all of these treatments after they have been used for a reasonable time.

This opens the door to medical suicide and other horrible abuses, they assert.

I see this differently. Many of those who now object to the right to refuse artificial nutrition and hydration belong to groups that previously objected to the right to refuse the other interventions: resuscitation, ventilation, dialysis, and so forth. Over time, they agreed on the other issues and I think it likely that they will eventually concur on this one too. This trend is well under way.

Those who disagree often assert that there is an important ethical difference because all the other interventions are therapeutic in nature whereas providing food and water, even when artificially conveyed, is not a medical procedure. They consider food and water as gestures of basic human respect and dignity that are always obligatory.

I am not persuaded. I view all of them as medical interventions that should be used or not used in harmony with the patient’s wishes and needs.

Those who retort that we are talking about starving or dehydrating our patients to death fail to do sufficient justice, in my view, to the fact that we typically lose our desire for food and water as we approach death. Every dying patient should receive all the nutrition and hydration that he or she desires but no more. Forcing unwanted food and fluids into the bodies of these patients typically extends their dying and increases their suffering, as specialists in palliative care valiantly try to teach us.

When our own bodies are shutting down, I am certain that we will not want others to prolong the process and make it more painful by insisting that we suffer the consequences of their well-meaning but misguided choices. It is usually a good idea to treat others as we will that they treat us!

David Larson teaches in the School of Religion at Loma Linda University.

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