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DEATH AND DYING

A few weeks before he died last spring, my father-in-law went back to the hospital, unable to breathe. He felt the same as he had just before learning he had cancer, and he suspected that fluid again had built up in his chest.

The same surgeon who had drained his chest before performed the procedure. My father-in-law, leaning over the table next to his bed, groaned as the doctor inserted a long needle between his ribs. No fluid. Another try, with more pain, and nothing.

Outside my father-in-law’s hospital room, the surgeon told my mother-in-law there was nothing more he could do. As he talked, the surgeon ever so slowly backed away.

Two days later my father-in-law returned home. Except for a few phone calls, there were no more contacts with a doctor. Instead, my mother-in-law was given information about a hospice.

The same thing happened a few years ago, when my mother’s parents died several months apart, both from cancer. They had wonderful hospice care, but at the end, doctors were out of the picture.

Such stories are all too common, says Dr. Ellen Fox, director of the clinical ethics program at the University of Illinois at Chicago’s School of Medicine.

At the end of a lecture she attended on hospice care, “one of the doctors in the audience was inspired” to tell the speaker “how wonderful he thought it was that `you people are around so that there’s something for us to do with the patients when our job is over.’ “

“And I just thought that was a very good reflection of a very big problem with medicine with regards to dealing with dying patients,” says Fox.

Say what you will about Dr. Jack Kervorkian, dubbed Dr. Death, but he has forced the medical industry, educators–and the rest of us, for that matter–to look squarely at care for the dying, or rather, the lack of it.

Last December the American Medical Association passed a resolution opposing physician-assisted suicide and called for increased training of medical students and physicians in end-of-life care. The AMA reaffirmed that position during its June House of Delegates meeting in Chicago.

That may seem like a sea change. But a caring and compassionate society should expect no less of its medical care.

The trouble is that we have forgotten how to die. We have forgotten that death is as much a part of life as birth. Instead, we do everything we can to avoid it. God forbid we will actually do what is natural–get sick, grow old, die, some a little sooner than later.

And just as we have forgotten how to die, our doctors have forgotten how to care for the dying.

We “have a very peculiar attitude toward death and dying, in that for some people the thought of an illness or any discomfort or any lack of control over their life is such a perceived insult or injury that they cannot tolerate it,” said Dr. Myles Sheehan, a Jesuit priest and assistant professor of medicine at Loyola University Medical Center in Maywood.

“I think we have a death-denying culture, and many times medicine is seen as the way to solve the problem of death,” Fox added. “And I think for the general public and physicians, death can be seen as a failure of medicine.”

“All too often patients are, in fact, abandoned,” said Patrick Hill, research scholar with the Park Ridge Center in Chicago, a unit of Advocate Health Care that explores the connection between religious faith, health and ethics.

How do you care for the terminally ill? Ease the pain, first of all. And be there and listen.

“The primary obligation of the physician is to limit suffering and not abandon a person to the experience of illness,” says Sheehan. “I think that the fears people have are precisely . . . that they will be left alone and feel no one cares for them during their dying.”

Too often, Sheehan said, doctors are not even adequately trained in relieving pain. And yet, “in the vast majority of cases, effective pain relief is possible without (patients) being drugged and unable to think and enjoy the time they have left.”

Sheehan also had a revealing story “about someone who asked to be killed, and the doctor starts talking about ways in which it could be done. The patient got furious and said, `You’re not supposed to agree with me. You’re supposed to give me reasons why I should keep on living.’ “

“There is a deeper level, particularly in the care of dying and critically ill patients, that modern medicine does not yet seem to understand or deal with,” Hill said. That is the capacity of physicians to deal with patients’, as well as their own, feelings of “sadness, anger, frustration.”

For Hill, doctors must have the capacity “to be compassionate, to talk with the dying patient through to the very end, rather than stopping when you begin to realize . . . death is inevitable.”

Can it be done? Can compassion, caring and a healthy attitude toward death be taught?

It will require considerably more than the one or two courses–often elective–to which medical students are exposed. Also, assuming such training is effective, will these physicians still be able to provide compassion in the era of managed care, with its stress on efficiency and bottom line?

There still is the matter of our various ethical, moral, cultural and emotional makeups; it may be asking too much for us to agree on the question of assisted suicide. There will still be those who seek help in dying, and there will be doctors and nurses who help them.

“Our primary support is for increased training in palliative and hospice care,” said Charlotte Ross, executive director of the Death with Dignity Education Center in San Mateo, Calif. “But we think it is less than honest to say it can take care of everyone’s problem.

“People as a rule don’t want to die, and they are not looking to die,” Ross said. Yet for some, even the most skilled pain management isn’t enough “and the only alternative is help in the dying process.”

Whatever the choice, the caring and compassion should be there right to the end. Death with dignity.

My father-in-law died in the arms of his wife, daughter and son, cradled in love. The doctor was not around. He had not been around for some time. Too bad. It was sad and wondrous, but life-affirming.