The homicide that Jack Kevorkian is charged with committing in September and the videotape that 60 Minutes broadcast around Thanksgiving seemed to elicit barely a ripple of medical reaction. University of Chicago medical ethicist Mark Siegler, M.D., was horrified, as was Linda Emanuel, M.D., the AMA's vice president for ethics. So should we all be. But most of us are not.
Just a month before, Joanne Lynn, M.D., and her colleagues reported in the Journal of the American Geriatrics Society that neither patients' preferences nor the seriousness of their illnesses could explain the dramatic geographic disparities in end-of-life care across the country. In some states, patients get a lot more morphine and hospice care than in others.
Are these events — euthanasia and inequitable end-of-life care — related?
I think they are. The link is resources.
Euthanasia is the taking of a patient's life by a physician for illness or mercy. Ill U.S. patients are terrified of dying in pain, alone, in discomfort. That this is so is a failing of modern medicine and shows misplaced priorities, not inhumanity.
The U.S. medical community, though still largely opposed to euthanasia, appears to tolerate it. This is terrible public policy, and yet, it is not that far away.
Inequitable end-of-life care, like outcomes in hysterectomies or coronary artery bypass grafts, is a measurable, correctable problem. On one end of the scale is La Crosse, Wis. A few years ago, its Gundersen Lutheran Medical Center and bioethicist, Bud Hammes, Ph.D., decided to make knowing patient preferences a priority.
In La Crosse, medical officials now know what 82 percent of its adults want near the end of life. Nationwide, between 15 and 25 percent of people have a living will or durable power of attorney for health care. But only a fraction of these forms ever make it to the medical record.
The medical community appears to accept the supply and demand theory of care that John Wennberg, M.D., at Dartmouth promulgated decades ago. This too is terrible public policy, and it is already here.
Less than a month
Hospice is based on estimated life expectancy. Too few patients receive a full six months of Medicare hospice benefits; even fewer take advantage of the little-known six-month renewal.
But most patients last less than a month, and many die within a few days of referral. Why? Many different problems.
Doctors are afraid of losing their patients. Hospice is associated with giving up. No severity-of-need index is available. Hospice providers may be unknown to referring physicians.
And then there are resources. The hard plain truth is that outside of those six months of Medicare hospice, managed care doesn't pay well or easily for end-of-life care. Patients and families are often devastated by the cost of terminal illness. Currently, the care that is available is the care delivered.
If hospital beds and hospital treatment are what is available, then that's what patients will get.
As we baby boomers age and are confronted with our mortality, perhaps we will begin to grapple with the cost of managing death. Perhaps it will not be only disabled ALS patients gasping for air on CBS. Perhaps patients who are disabled, but whose wishes are not quite audible, will also be dispatched. Will their muffled breaths also make it to network television?
I hope they never do, because I hope we show more compassion towards our most vulnerable patients than Kevorkian does. But right now, he's the angel of death, because at least he is willing to sit and listen to people when they say they are in pain and want to die. Most practicing licensed physicians do not sit and listen.
Hit the road, Jack
We can do better. There is more money that is available for end-of-life care research and education now than there has ever been. The Soros Foundation has given millions. The Robert Wood Johnson Foundation is in the tens of millions. Well-intended, skilled hospice organizations are everywhere. Whole, excellent journals are now devoted to palliative medicine, and medical seminars on communication near the end of life are often filled.
End-of-life care initiatives now assume that patients, armed with autonomy and medical information, can and will make better choices and control their treatment and care while dying. Not so. Unless they go to Kevorkian.
We have a systemic quality problem that cannot be fixed with flow charts and rules. What the system needs, desperately, is doctors who are not penalized for doing the right thing. Spending time with patients should be rewarded and required.
Financial incentives, local resources and medical-practice styles must adjust to meet dying patients. Unless physicians form teams with other professionals, and focus on communication skills first and foremost, neither patient preferences nor illness will be most important at the end of life. Resources will.
That's the wrong message to send to patients, dying or not. The values of business should never replace the values of the profession. It's all we have.
End-of-life help online
Here are top resources and their internet locations for anyone in managed care committed to building or improving an organization's end-of-life program and avoiding euthanasia:
John La Puma, M.D., is a Chicago-based internist and author of Managed Care Ethics: Essays on the Impact of Managed Care on Traditional Medical Ethics (Hatherleigh, New York, 1998). He practices at Alexian Brothers Medical Center in Elk Grove Village, Ill.