Mrs. S. had lived with progressive emphysema for years. During her last admission, she was brought gasping for breath into the emergency room of a local hospital. The staff asked if she wanted help breathing. She nodded her head "yes," and she was put on a respirator. Her niece arrived at the hospital hours later. She showed us her aunts Living Will, which specified no breathing machines. We followed her wishes. She died comfortably with her niece and daughter at her side.
Contrast Mrs. S.s situation with people who are in nursing homes, unable to converse, walk, or eat, and whose lives are maintained with feeding tubes and aggressive care when they develop pneumonia or bedsores.
We have recently seen the death of Jackie Kennedy Onassis, who asked to leave the hospital, stop her treatments for cancer, and stop antibiotics so she could die as she had lived, privately and with dignity. Richard Nixon had a Living Will that specified he wanted no "heroics." He, too, was allowed to die as he wished. Decorated Vietnam veteran Lew Puller and Kurt Cobain, lead singer for Nirvana, ended their lives by suicide. Dr. Jack Kevorkian gives people the means to end their lives before their diseases do. Washington State recently overturned the ban on assisted suicide. Clearly as a society we are repeatedly challenged with life-and-death issues.
I have journeyed with persons who are ill, their families, and the staffs who take care of them. And I am a religious person committed to the sanctity of life. Some of the ethical principles involved in seeking guidelines about life and living and death and dying include autonomy or self-determination, beneficence, non-maleficence, fidelity, and justice.
Individuals have a right to determine what happens to their body, and thus there are consent forms. As long as a person is able to communicate, he or she remains in charge of their body. It is part of retaining ones dignity. It is why Onassis was able to leave the hospital and to stop all treatments except those aimed at keeping her comfortable. Nixon and Mrs. S. were no longer able to express their wishes in person, but they did so through their Living Will and durable power of attorney.
Beneficence is a principle that says medical decisions should be based on what would most benefit the patient. For example, Onassis decided that the treatments she was receiving, including antibiotics, were more burdensome than beneficial.
Non-maleficence is the duty not to harm others. Sometimes technology acts more to prolong the dying than to help with the living. At a religious conference on the question of ethics, a participant began to cry, saying that she was a devout Christian and a registered nurse and that she was having difficulty reconciling the two when she was caring for terminally ill people who were receiving very aggressive but ultimately futile care. She said that rather than feeling she was helping people, she felt she was torturing them.
Fidelity is keeping promises. We can keep our promise not to abandon the dying, but we have to couple that with the principle of justice. Part of Kevorkians attraction is that people feel trapped in a health care system that does not listen to them or provide adequate pain and symptom management.
Why do we have so many problems recognizing that there is a time to be born but also a time to die? One reason is our fear of dying. The vast majority of people do not fear death but the dying process. They fear being in pain. The hospice movement is one way of meeting that need. We are good at managing physical pain if health practitioners use the many medications we now have available. It is unconscionable and unjust for anyone to die in pain today.
Another fear is being isolated. We are a society that denies death. This is seen in the inappropriate use of acute care hospitals, where we know that many of the sickest patients are going to die but we do everything to prevent that at the cost of great physical suffering for the patient, mental suffering for the patient, family, and caregivers, and financial expense for society. As we come to acknowledge that death is a natural part of our life as mortal human beings, we can become creative about how to address the fear of isolation.
The high cost of illness is another fear. A shifting of resources is needed, so that the emphasis is on care and comfort and not on cure in cases where a disease is progressing.
Finally, there is a fear of the unknown. Great comfort can be found in the stories of people who have had near-death experiences and those who tell us clearly or symbolically what is happening to them as they get sicker. They all talk about feeling loved. Such stories can help lessen the fear of death, if not of dying.
But what of a person who has an incurable illness such as AIDS or Alzheimers but for whom death is not imminent? A person has the right to decide what constitutes a good quality of life. If she or he is not in crisis physically, emotionally, or spiritually and has been able to discuss all their fears and concerns with someone who believes in the sanctity of life, a case could be made that the person has a right to end their own life before the disease does. Health care providers should not be asked to assist directly, but some would say that it is valid to give the person information about medications. (Mental illness, on the other hand, is overwhelmingly painful but not incurable, and therefore seems a different situation than those involving terminal physical illnesses.)
A belief in the sanctity of life is not necessarily in conflict with a willingness to let go of this life when the body can no longer persevere without the artificial help of machines. There is a time to be born and a time to die.
PHYLLIS TAYLOR, a registered nurse at Hospice of the Delaware Valley, co-coordinates the ethics program at Philadelphia College of Osteopathic Medicine.