Our dying patients deserve a good end to their lives

Commentary. By Eric Anderson, MD, AMNews contributor. Dec. 9, 2002. Additional information

It was not a good week for physicians picking up newspapers. On Monday, Last Acts, a coalition of over 400 professional and consumer organizations, called the United States a "cold and uncaring place to die."

Its study, carried out by the national political research firm Lake Snell Perry and Associates Inc., surveyed 1,000 adults who had lost a close relative in the last five years. Sixty percent of those interviewed gave the U.S. health care system a grade of only fair or lower, and 25% described it as poor.

And before doctors could really digest that story, the next day a panel of 16 experts from the Institute of Medicine at the National Academy of Sciences proclaimed, nationwide, that the U.S. health care system was in crisis and "incapable of meeting the present, let alone the future, needs of the American public."

As a physician who has stood guard in the primary-care trenches for 40 years, I'm not always troubled by what the generals, some with their own battle plans, bellow from the castle towers -- though I agree it's scandalous that a country with money for the world somehow doesn't have any to provide heath care umbrellas for our nation's 41.2 million medically uninsured. So I can live with some of the salvos from the NAS.

But as a physician whose life has been one-on-one, face-to-face with individual patients, I am surely bothered that a representative group of our patients finds us wanting in providing end-of-life care.

The Last Acts report should give us pause. Living wills, durable powers of attorney and attempts to promote hospice haven't been enough. We need more. Our patients do. Simply learning how to treat terminal pain better isn't enough of an improvement.

We need to change, radically, our approach to death and dying. We need to get beyond the doctor's belief that death is the enemy, a belief sometimes at cross-purposes with our patients, to whom death might be a friend. We need to consider how other cultures and religions approach death and compare them with our ways in the Western world. And we really do need to keep our terminally ill patients out of hospitals.

As San Diego pulmonologist Kevin Glynn, MD, has written, in the old days, as children went through their childhood, they watched their grandparents and parents die -- and subconsciously developed a plan for how they would manage their own death. "Nowadays," he says, "with the nuclear family scattered and the elderly sequestered in nursing homes, many adults have not experienced the natural life cycle. Adults not only fear dying, they don't understand it."

This willingness for patients to relinquish control of their life's end may be one of the reasons so many deaths happen in hospitals. Other times it's the spouse who insists everything be done. Sometimes it's an attending physician trapped because an overconscientious medic in an ambulance started procedures later found inappropriate for that particular patient's wishes. And sometimes what we are practicing in hospitals is merely legally defensive medicine. Whatever the reason, it's not what many of our dying patients want -- and it wastes money.

In an article "Cost Savings at the End of Life," published in the June 26, 1996, Journal of the American Medical Association, Ezekiel J. Emanuel MD, PhD, reminded us that medical care at the end of life consumed 10% to 12% of the total health care budget and 27% of the Medicare budget. Some rebuttals appeared in medical journals that those figures were too high. I doubt it. I remember two patients we had in our intensive care unit.

The first, a frail 85-year-old man, had severe emphysema, bilateral pneumonia and congestive heart failure. He'd been on a respirator for 22 days without benefit. Unfortunately, with no other family, he'd left powers of attorney for health care in the hands of his two ex-wives. One wife was getting $450 a month alimony and the other $1,600 a month. On his death, all his money was to go to charity. Both wives insisted on continued intensive care.

In the next bed lay a 350-pound, 75- year-old man with severe hypertensive heart disease and diabetes. He'd come to the emergency department semiconscious with a leaking abdominal aortic aneurysm. An emergency physician called a vascular surgeon. Three days and 21 pints of blood later, the patient was still unconscious.

This patient also was on a respirator, all very correct in a high-tech way. The only problem was his office medical record and personal papers contained properly executed documents that he didn't want aggressive care should he become seriously ill. But -- as emergency physicians repeatedly point out -- they seldom have access to that information when comatose patients without a relative come, via a 911 call, to their hospital emergency departments.

Despite the cost, if our high-tech way of confronting death was really what patients wanted; if it relieved attendants, consoled families, calmed children; if it was a model of comfort to the dying themselves; and if it gave a good end to a good life, it would be acceptable.

But it is often none of those things.

Yet strangely, for all its modern magic, there is something medieval, even pagan, about the rituals we've created with medical technology. A cardiologist friend once likened a cardiac arrest with so many people standing around, to a "hanging in the Middle Ages." He also called hospitals' competitive search for new technology "the Medical Olympics."

How do patients want us to remove the sting from death?

I believe they would often prefer the place to be the home. They would want us to be generous with comfort items, especially analgesics, but also generous with our time.

And they would like some continuity of care during this process, the longitudinal care famously given by good family physicians.

Boston cardiologist Bernard Lown, MD, the father of cardioversion and, arguably, of all the technical cardiology that followed, once told me the most important piece of equipment to any ED patient in a crisis was a "friendly, familiar face." Our dying patients deserve no less.

Dr. Anderson is a family physician in a 300-doctor group in San Diego.

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Our dying patients deserve a good end to their lives

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