There's also a right to fight to live 'No one can estimate the power of the human will'

Janet P. Zinzeleta

October 04, 1990|By Janet P. Zinzeleta

THE SUPREME COURT'S ruling that the parents of 32-year-old Nancy Cruzan have no right to remove the feeding tube that is keeping her alive cannot be forgotten. It seemed a cruel decision. It forced her parents to watch their child linger, perhaps for years, in her irreversible, unconscious, vegetative state.

The hearts of the nation have gone out to this family in their tragedy, which centers around the highly publicized and controversial right to die.

But there is another thing to consider when discussing the complex issue of patients' rights. That is the need for understanding and encouragement when a patient decides to fight to live.

When I arrived at the hospital during my husband's second treatment of chemotherapy for acute monocytic leukemia, he said, "I hope you'll understand, but I'll never go through this again. I'd rather die."

Yet each time he relapsed and was told that without more treatment he would have about three weeks to live, he chose to enter again into what seemed a living hell: fevers spiking to 106 degrees, shaking chills, vomiting, hallucinations -- and all without the possibility of a cure.

In a period of over three years, he endured seven treatments of chemotherapy, as well as three other hospitalizations for complications. He suffered from pneumonia, dehydration, spinal meningitis contracted from a contaminated transfusion, an operation for embolisms, nerve damage in his hands and feet, vertigo and hearing loss caused by the chemicals he received. He did not realize himself how strong his will to live was until he was confronted with the alternative.

We were fortunate in having a supportive, caring doctor who, with each relapse, offered the best treatment available for the situation. Yet three of the nurses who attended him expressed their opinions that he should take no further treatment. One of these well-meaning young women suggested, very gently, that other patients had chosen instead to spend their last days at home with their families and implied that he should do likewise.

Another nurse embarrassed him by sarcastically commenting on his being back in the hospital again for more chemotherapy. A third told me that she and other nurses had discussed how they "felt like shaking" patients who put themselves and their families through such torture by continuing to take treatment.

I was appalled by the audacity of these outsiders to presume to know what was best for the patient. None of them could look at things from my husband's perspective. His decision to continue fighting as long as any treatment was available was not a frivolous choice. He wanted to live -- it was that simple. He had only one chance at life; when that was over there would be no second opportunity. He wanted to get every drop he could from his cup of life.

As dying patients often do, my husband established goals: to see a daughter graduate from high school, another get her doctorate, a son return to college after having discontinued his education. Each event he lived to see gave a new dimension to his existence and to ours. Each sharing of a major happening involved him a little longer in our lives and in our memories. We have the consolation of knowing that he did all in his power to stay with us.

There are many cases when a patient decides that he or she wants to leave the pain and misery; he or she chooses to forgo further treatment. This decision should be honored when it is ascertained that it is the patient's wish. But not all patients want to shorten life, and when this is the case, the person's desire to struggle should be honored. We frequently hear of people living beyond all medical predictions, for no one can estimate the power of the human will. Nor can anyone, even the closest relative, presume to know another's wishes.

The case of Nancy Cruzan is tragic. In all likelihood, if she could be given the opportunity, she would choose to die. The Supreme Court's decision has resulted in many Americans preparing a durable power of attorney to provide a way for others to avoid such a tragic situation.

Appointing a guardian who knows one's wishes and has the legal standing to decide medical treatment if one is unable to decide can provide peace of mind. Most of us think such a document only appropriate for the elderly. The Cruzan case shows that it is not.

But those patients who are still able to express their wishes should receive all the help and support their courageous decisions deserve. If that decision is to forgo further treatment, there are places, such as hospices, to help them through their final days. If that decision is to pursue every avenue available until the end, those who minister to them do them an injustice if they do not make every effort to encourage them in that decision.

Janet P. Zinzeleta writes from Ellicott City.

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