Doctors and end-of-life issues

The movement that favors euthanasia and physician-assisted suicide has been trying lately to change words around to make their cause more acceptable to people who hold strong life principles — as in, all life is sacred from conception/fertilization to natural death. Some think the one word change from “suicide” to “death” takes away some culpability, so they made it ‘physician-assisted death.’ That movement also took on names like ‘compassionate care’ to soften the image and the reality of what they want.

This is confusing enough to the public. But the doctors are in a quagmire over this changing landscape of end-of-life treatment.

Researchers who in the mid-1990s observed more than 9,000 seriously ill patients in five American teaching hospitals found substantial shortcomings in the care of the dying. More than a third spent at least 10 of their last days in intensive care. Among patients who remained conscious until death, half suffered moderate to severe pain. And fewer than half of their physicians knew whether or not their patients wanted to avoid cardiopulmonary resuscitation.

The researchers then made a multimillion-dollar effort to improve communication between patients and doctors on end-of-life care. They generated frequent reports to physicians on patients’ expected survival and hired specially trained nurses to talk with patients, families, physicians and hospital staff about prognoses, pain control and advance care planning.

Yet after two years, the problems they had identified were undiminished. The changes in practice had done nothing to get physicians to better communicate with dying patients. As the investigators wrote, the doctors “did not wish to directly confront problems or face choices.”

This study — called the Support trial — was a wake-up call for the medical profession. Physician leaders responded by creating specialized curriculums in end-of-life care, and licensing boards widened their competency requirements to include this expertise. Professional organizations issued mandates to improve standards of care for the terminally ill, while hospitals began offering more palliative care consultation services. Interest in end-of-life care surged; by early 2005, the American Academy of Hospice and Palliative Medicine grew to more than 2,000 members, from only 250 in 1988.

Still, many of us remain unwilling to talk with patients about death.

This is a profound, and profoundly personal, reflection by a physician struggling with the best way to care for patients in the minefield of biomedical possibilities and moral certainties.

I think there is a simple way to change. We could add one question to every discussion we have about patients with terminal illnesses: “How good is this patient’s end-of-life care?”

The forums for posing this question are plentiful in medicine. Every morning and late afternoon, physicians in hospitals “round” on their patients, discussing their decisions in small groups or writing progress notes on patients’ charts. Doctors hold “grand rounds” (lectures before their colleagues) monthly or weekly, and in academic centers, physicians hold regular teaching conferences.

If in these settings we could bring ourselves to ask about each patient’s end-of-life care, we could influence one another in a more personal way than the Support study did. And while we might not get all the details right at first, we would grow more familiar with advance directives and pain treatment and learn to manage our patients’ resuscitation wishes.

We also might find ourselves…one step closer to being the compassionate doctors we have always dreamed of becoming.

Unlike the euphemisms, this is true compassionate care.