Choices for the Most Desperate of Us : Bouvia Ruling Indicates There Is Right to Zone of Comfort

A man, no longer able to watch his wife of more than 50 years wallow in the degradation and delirium of advanced Alzheimer’s disease, kills her. A patient with end-stage cancer that cannot be treated with chemotherapy tells his physician that he is going up to a cabin in the mountains, and isn’t going to return. Should the police be dispatched to bring him back?

A woman, paralyzed with cerebral palsy, helplessly dependent on others for even the most menial of care and with severe pain requiring constant high doses of morphine, begs to stop a hospital from force-feeding her so that she can let her life run the course that she deems natural. Should one, must one, let her? In the case of Elizabeth Bouvia, the California 2nd District Court of Appeal has ruled that one must.

With this decision the court was not sanctioning suicide per se. Rather it was saying that Bouvia had the right to make certain decisions concerning her own life.

As pointed out in the judicial opinions, Bouvia’s wish to control her situation stemmed from the hopelessness and helplessness of her condition. She had no one willing to care for her, and was immensely uncomfortable from the pain.

This was not a spur-of-the-moment desperate act, but a deliberate attempt to seize control over what was left of her existence. If there were a cure for her condition, she would have sought the remedy. But death appeared, at the least, like sleep at the height of exhaustion--a release from her trap of torment. And if there is to be a life after death, as Bouvia appears to believe, then death may be a passage to a better state.

Certainly there are many in our hospitals who suffer agonizing pain and debilitating illness. Some with cancer or severe heart disease can hold on with the strength of hope in the next medication or treatment. Sometimes an accommodation with the illness can be made and a tolerable existence achieved. But such is not the case with Bouvia. She has no hope of curing or arresting the disease--only the prospect of years of dependency, degradation and pain.

More to the point, the very nature of her condition precipitated the dilemma. There was no dialysis machine to turn off and wait for the kidneys to fail. There was no chemotherapy to abandon in the face of a ravaging cancer. Her only choice was to self-limit nutrition.

While nutritional deprivation may be more natural than an overdose of pills or a gunshot wound to the head, the inexorable ebbing of life can be excruciating for others to acknowledge. In this case there is also a whiff of being on the cusp of euthanasia.

The very nature of Bouvia’s helpless state requires the presence of others. There is a complicity inherent in helping her achieve her goals. She will need someone to bathe her, to turn her, to give her medication and to know that they are not feeding her.

Since this one case was set up by the courts, those who must help Bouvia won’t have to fear the consequences. But who will judge the competency of the next case? Who will decide how hopeless an existence, how unbearable the pain? And is the desire to control our ultimate existence transferable to others by the durable power of attorney or by court commitment to an institution?

Mercy killing may only be in the eye of the beholder. Is competency the question, or severity of condition? Is the government, through the courts or legislation, to be in the business of coloring society’s morals to say that individuals can speak for themselves in this matter, but not for a demented wife or a comatose child? Individuals commiting suicide take their precedent out of this world with their flesh. But institutions and health-care professionals begin to establish standards that evolve with their society.

The Bouvia case speaks as much to the failure of society. The human community should have a window of life to offer to Elizabeth. Yet there was little support left to her until she stirred up her caretakers by demanding that they let her starve herself to death.

This case speaks directly to the handicapped. Not to the active functional disabled, who are participating in society, but to those who are running out of options. Our community must examine our support for the most dependent around us. When the only choice left is to demand your own self-determination to exit this world, we all have failed to some extent.

But this is also about personal choice. We have a right to medical care. We should also have a right to refuse care. But can we ask others to give us just the treatment that we want, even if that conflicts with their reasoned judgment?

Physicians have always prided themselves on their patient advocacy. When illness can no longer be cured, we must be prepared to guide and ease our patients as their lives end. Using the Bouvia ruling as a guide, physicians and hospitals should seize this opportunity to work within society to develop a zone of comfort with the widest range of choices for the most desperate in our population. This is as noble as any endeavor that we will undertake.