As uncomfortable as it is for many Americans to accept, allocation issues are a permanent feature of our health care system, “reformed” or not. Who should get the H1N1 flu vaccine first? In a flu pandemic or a biological disaster, who should be put on respirators and who should not? These hard choices are realities, not conspiracies. And then there are the fictions—which some staunchly believe or promote. Health reform’s imaginary “death panels” voting yea or nay on Grandma’s life are the most widespread of these pernicious notions.
While the death panel idea gained currency because it was attributed to the government, a committee making life-or-death decisions did exist in the U.S. And it was a private-sector creation. Called the Admissions and Policies Committee of the Seattle Artificial Kidney Center at Swedish Hospital, it later became known as the “God committee.” Why it was formed, what it did, and what it led to offer a glimpse into a quintessentially American approach to a health care problem. Nearly 50 years later, this experience is still relevant, especially as health reform proposals include Medicare as a prime candidate for cost saving.
The committee was formed in 1961 to choose which patients would be hooked up twice a week, 12 hours at a time, to an “artificial kidney” that could cleanse the blood of toxins that their failing kidneys could no longer filter. Before 1960, this treatment (known as hemodialysis) could be used only temporarily. Then Belding Scribner of the University of Washington developed a Teflon shunt that could be implanted in a patient’s arm, providing easy, permanent access to a patient’s veins. The shunt expanded the number of patients who could benefit from receiving hemodialysis, far beyond the limited capacity of the Center at Swedish Hospital.
Who should be chosen and on what basis? That task fell to a committee of seven citizens–lawyer, minister, banker, housewife, state government official, labor leader, and surgeon–selected by the King County Medical Society. The committee was created in part to protect doctors from having to make these fateful decisions about their own patients. At their first meeting, the committee accepted kidney doctors’ recommendations to reject anyone over 45 because older patients were likely to develop medical complications. Children were also excluded because, it was felt, they might be traumatized by the procedure. At the second meeting, the members decided that they wanted to be anonymous and did not want to know the candidates’ names.
The third meeting was crucial. The members drew up a list of all the factors they would weigh in making their decision, including age, sex, marital status and number of dependents, income, net worth, emotional stability, educational background, occupation, past performance and future potential, and references.
A Look Into The “God Committee’s” Deliberations
Although the committee’s deliberations were secret, a snapshot of the members’ thinking emerged from a widely discussed article by Shana Alexander in LIFE magazine (November 9, 1962). She was allowed to observe its work over six months.
“HOUSEWIFE: If we are still looking for the men with the highest potential of service to society, then I think we must consider that the chemist and the accountant have the finest educational backgrounds of all five candidates….
“LAWYER: Both these men have made provisions so that their deaths will not force their families to become a burden on society.
“STATE OFFICIAL: But that would seem to be placing a penalty on the very people who have perhaps been most provident….
“SURGEON: How do the rest of you feel about Number Three—the small businessman with three children? I am impressed that his doctor took special pains to mention that this man is active in church work. This is an indication to me of character and moral strength….
“LAWYER: It would also help him endure a lingering death…..
“MINISTER: Perhaps one man is more active in church work than another because he belongs to a more active church.
“LABOR LEADER: For the children’s sake, we’ve got to reckon with the surviving parent’s opportunity to remarry, and a woman with three children has a better chance to find a new husband than a very young widow with six children.”
Today these quotes sound outdated at best and offensive at worst. But these unpaid citizens took their job seriously. John Myers, the small businessman chosen to receive dialysis and the main subject of Alexander’s article, said, “What a dreadful decision! It’s like trying to play God.” With no guidelines, it is not surprising that the committee relied heavily on criteria of social worth heavily weighted toward economic status, reflecting their own values and biases.
A partial solution to this dilemma soon emerged through a combination of technology and money. Once the technology was proven to work, more artificial kidneys came on the market. By the end of the 1960s, the Seattle committee and a few other similar hospital committees disbanded. A problem remained, however: how to pay for this still very expensive treatment. Enter another American specialty—advocacy on behalf of a particular disease.
In October 1971, Shep Glazer, then Vice President of the National Association of Patients on Hemodialysis, testified before the House Ways and Means Committee while being dialyzed. Transfixed by this demonstration and the message that people like Mr. Glazer would die without funding for dialysis, Congress quickly approved, and President Nixon signed, legislation that made treatment of end-stage renal disease (ESRD) a supplement to Medicare. It remains the only disease that is singled out for federal funding. At the time most legislators justified funding for a particular disease on the grounds that some form of national health insurance was expected to be enacted in the next few years.
The Medicare ESRD program has unquestionably prolonged lives. It has also grown far beyond the original estimates — from about 11,000 patients in 1974 at a cost of $229 million to about 527,000 (including post-transplant patients) in 2007 at a total cost of $23 billion. While the original users were mainly patients with polycystic kidney disease (a genetic condition), now the majority are patients with renal failure caused by diabetes and hypertension. Some patients who are unlikely to benefit from dialysis—dying patients in the last few days of life — are getting it anyway. Critics now contend that the dialysis program is too costly and needs updating.
Government funding of dialysis has also unquestionably benefited the private sector. About 80% of all dialysis centers are for-profit organizations. To curb spending, the Centers for Medicare and Medicaid Services has issued new payment rules for “bundling” services and for encouraging home dialysis instead of center treatment. The scarce resource for renal disease is now transplantable organs, including the kidneys that get people off dialysis. These are allocated by the United Network for Organ Sharing (UNOS), based on medical priorities and location.
What can we learn from this experience? When faced with the stark reality of life-and-death decisions, government chose universal access rather than trying to judge on a case-by-case basis. Responsible journalism fostered serious public discussion; Alexander’s LIFE article became a sentinel event in the emerging bioethics movement. Decisions about allocating scarce resources should be made using objective, consistent, and transparent criteria, not social worth. Finally, even beneficial programs should be re-examined in light of changing conditions.
And while today Grandma is safe from “faceless” government bureaucrats, in the private-sector “God committee” model, it’s her well-meaning neighbors she would have to worry about.