Worse than death

Arthur Caplan

July 27, 1993|By Arthur Caplan

WHAT frightens you the most about becoming seriously ill? What do you think of when you hear of a relative, friend or celebrity stricken by cancer, heart disease or Alzheimer's?

Maybe you think most people would say dying. But according to a recent study by a team of researchers at the University of Washington in Seattle, many of us think there are many things worse than death.

Unfortunately, our health-care system is not doing what it should to attend to these concerns. Robert Pearlman, a physician specializing in geriatric care at the Seattle Veterans Health Center, and a group of his colleagues published a fascinating study on patient assessments of states worse than death earlier this year in the Journal of Clinical Ethics.

Dr. Pearlman's group conducted in-depth, structured interviews with 56 adults. These were not just folks off the street. They were people who had stared death squarely in the face. Some of those interviewed had AIDS. Some had spent time in a coma following a heart attack. Eight had a terminal illness such as cancer.

The researchers asked this group under what circumstances they thought it might be preferable to be dead rather than alive. The answers they gave are fascinating, disturbing and illuminating about changes that are long overdue in our health-care system:

Ninety-six percent said that they felt it would be worse to be kept alive under hopeless circumstances, when "death is just outside the front door," than it would be to actually die.

Eighty-two percent believed that the total loss of independence would be worse than death. They found the prospect of their bodies becoming incapacitated, being left by disease or injury unable to feed, dress or clothe themselves more frightening than the prospect of death.

Seventy-nine percent said they hated the idea of dying in a strange place more than the idea of death itself.

And 73 percent were so averse to a life of unremitting pain and suffering that they would rather be dead.

How well is medicine doing in helping patients cope with these concerns? To say lousy would be a generous assessment. Doctors and nurses spend far too much time manipulating technology and too little talking to their seriously ill patients about their hopes, fears and concerns.

As Dr. Pearlman and his colleagues note, the concerns expressed by those they interviewed "are not the usual subject matter for clinician-patient discussions."

Not only are the subjects of hope, independence and setting of death rarely discussed, a just-published survey in the Annals of Internal Medicine conducted by a team of doctors headed by Jamie Von Roenn of the Northwestern University Medical School in Chicago indicates that there is much too high a chance that those who fear pain and suffering more than death have reason to worry.

Dr. Von Roenn and his team asked 897 doctors -- including surgeons, hematologists, oncologists, internists and radiologists -- who care for patients with cancer about the treatment of pain in those patients.

Nearly nine in 10 of the doctors said they think that the majority of cancer patients do not get adequate medication for pain control. Only 51 percent of the cancer specialists thought that the pain control in the institutions where they practice is good or very good.

Why? Three-fourths thought that inadequate efforts to assess pain in patients was the single most important obstacle to good pain management.

Other major barriers to the treatment of pain are the reluctance of some doctors to prescribe narcotic drugs due to worries about side effects or addiction; patient reluctance to say they are in pain; and patient fears about the side effects of pain-relieving drugs, such as becoming incoherent or overly tired.

Dr. Von Roenn and his associates think a revolution in the training of physicians and nurses in pain management is in order.

Those who treat patients with cancer and other serious illnesses need to know how to properly assess pain in their patients. They also need to reassure patients that complaints about pain do not mean they are "bad" patients.

And physicians and patients need to learn to talk to one another about how to use the drugs that are available in ways that permit pain to be controlled with tolerable side effects.

For many of us, there are things in life that are worse than death. For too many who practice in the health-care field, the only thing to worry about is death. Unless our health-care system begins to take hope, independence, comfort and pain more seriously, there is every reason to fear that the public will insist on laws and legislation that let those who are seriously ill choose death as the lesser evil.

Arthur Caplan is director of the Center for Biomedical Ethics at the University of Minnesota.

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