I Hate Dialysis Message Board
Off-Topic => Off-Topic: Talk about anything you want. => Topic started by: okarol on July 25, 2011, 11:18:50 PM
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If you've never read it, you might find it interesting to read the story about early dialysis and the committee who decided which patients would be eligible to receive it. The article was written by Shana Alexander (reprint from LIFE Magazine, Nov. 9, 1962)
They Decide Who Lives, Who Dies
John Myers has known about his kidney trouble since a routine physical examination at the time of his Army discharge in 1945. But until two years ago he felt fine. Then the headaches began and his blood pressure began to rise. By last summer there were days when he could barely drag himself out of bed to get to his office. He was 37 years old. Neither he nor his wife Kari had any idea that he had come, irrevocably, to the terminal stage of his disease. But a glance at his case history was enough to tell any physician that John Myers’ death would be ugly and soon.
Last Christmas morning when Myers awakened at his home in Bremerton, Wash., his heart was pounding violently. He could not stop coughing. Blood was running from his nose. He had an indescribable headache, a horrible taste in his mouth, dreadful nausea. His face and lips were grossly swollen. He was rushed to a hospital where it seemed certain he would be dead within a matter of hours. But today, 11 months later, Myers is still alive. He is no longer even an invalid in the usual sense of the word. He is back at his old desk with an oil company, and he is living comfortably at home with Kari and their three young children. To the casual observer, John Myers looks and acts just like everybody else. But he is different, in a very special way. There is now a small, U-shaped plastic tube sutured into the blood vessels of his left forearm.
Every Monday and Thursday afternoon Myers takes an hour long ferryboat ride across Puget Sound from Bremerton to downtown Seattle. By 6 p.m. he is making his way down a short flight of steps into an unmarked basement in an annex of Swedish Hospital. Inside, he exchanges his business suit for a green hospital gown and climbs into bed. A compact hunk of medical plumbing which looks like a stainless steel washing machine is wheeled to Myers’ bedside. From its innards a technician unfurls a pair of clear plastic tentacles six feet long. A nurse connects these to the little tube in Myers’ forearm, and twiddles a few controls. Suddenly, in one bright spurt, one of the tentacles becomes red as John Myers’ blood rushes out to fill the bedside machine.
The machine is an artificial kidney. Because it can be coupled at will to the U-shaped tube in Myers’ forearm, it has become the first true artificial organ in medical history. For the rest of his life Myers will spend two nights a week joined by a plastic umbilical cord to this machine which keeps him alive.
At present the miraculous machine requires 10 to 12 hours to cleanse Myers’ blood of accumulating poisons which otherwise would kill him. The procedure is quite painless, and Myers has now become so accustomed to the whole idea of surrendering his life’s blood to a medical laundromat twice a week that during the cleansing he just goes to sleep. A nurse monitors the blood-flow and makes sure he does not roll over and kink the tubing.
Every Tuesday and Friday morning his nurse brings Myers his breakfast--jam, tea, ersatz
bread--checks his blood pressure, and unhooks him. He carefully weighs himself (he usually finds he has lost two to four pounds of excess fluids overnight), showers, drives back to the ferryboat and sails off to work.
John Myers knows that so long as he keeps his regular rendezvous with the machine, and so long as he sticks, faithfully to a diet consisting chiefly of cornstarch mixtures, leafy vegetables and fruit, and so long as he takes scrupulous care of what is in effect a permanent open wound in his forearm, he should be able to live the semblance of a normal life. He knows too that without regular access to the machine he would die within a week or two.
Talking about his unique way of life, Myers today says, “When you go on the machine you feel absolutely nothing at all. You just watch the gal hook you up. I have no emotional reaction, and I’m glad I don’t. I don’t feel I’m a prisoner of the system—even though I know perfectly well I am.” In the opinion of Myers’ doctors, this matter-of-fact attitude is as important to Myers’ continuing good health as the diet and the rest of his strict regime.
The cause of John Myers’ multiple agonies last Christmas is properly known as uremic poisoning and congestive heart failure due to end-stage kidney disease. Each year it kills about 100,000 people in the U.S. alone. Of these 100,000 doomed patients, only one in 50 at present can be considered a suitable candidate for wearing Seattle’s new U-shaped tubes. These few have kidney disease in a fairly pure form, uncomplicated by other afflictions. They are both physically strong and emotionally mature enough to endure the treatment.
Today Seattle’s Swedish Hospital cares regularly for five patients who wear the tubes. In addition to Myers, they are a car salesman, a physicist, an engineer and an aircraft worker. By the end of this year there will be five more. All 10 will be part of an unprecedented two-year trial program to determine whether and how the rugged and expensive new treatment—at present the cost is $15,000 a year per patient—can be made feasible on a mass, nationwide basis.
Until the results of the trial in Seattle are known, many doctors feel it would be premature to set up additional treatment centers elsewhere, even if unlimited funds were available. The same treatment which keeps John Myers and his four companions gratefully alive has driven less carefully selected patients to pray for a swift and merciful death.
As medicine advances and invents assorted other mechanical organs, millions of people with “fatal” diseases may be given the same second chance at life which John Myers was one of the first men in the world to receive. But the Brave New World in which people may literally have hearts of gold or nerves of steel is not yet at hand. In the interim, agonizing practical decisions must be made. For the present, someone must choose which one patient out of 50 shall be permitted to hook up to Seattle’s life-giving machines and which shall be denied.
There is in Seattle a small little-known group of quite ordinary people who have now made this choice five times, and will make it five times more before this year is out. For John Myers and his fellow patients were not chosen by lot. They were not even chosen by physicians. Each was selected individually by an organization named “The Admissions and Policies Committee of the Seattle Artificial Kidney Center at Swedish Hospital.” Behind this magnificent polysyllabic façade stand seven humble laymen. They are all high-minded, good-hearted citizens, much like the patients themselves, who are selected as a microcosm of society-at-large. They were appointed to their uncomfortable post by Seattle’s King County Medical Society, and for more than a year now they have remained there voluntarily, anonymously and without pay.
These seven citizens are in fact a Life or Death Committee. With no moral or ethical guidelines save their own individual consciences, they must decide, in the words of the ancient Hebrew prayer, “Who shall live and who shall die; who shall attain the measure of man’s days and who shall not attain it; who shall be at ease and who shall be afflicted.” They do not much like the job.
In the summer of 1961 the seven members of Seattle’s Life or Death Committee met for the first time. They were a lawyer, a minister, a banker, a housewife, an official of state government, a labor leader and a surgeon. Few of them know any of the others, and most had only a sketchy idea of their committee’s true purpose. Needless to add, none of them had ever heard of John Myers, with whose life they would soon be so intimately involved.
At this first meeting the committee was briefed by two physicians, both kidney specialists, who described the new Artificial Kidney Center then under construction, and explained why some grim life-or-death choices would soon have to be made. The doctors explained that-the committee would never be asked to make medical decisions. All prospective patients would be prescreened by a board of physicians which would weed out all medically or psychiatrically unsuitable candidates. This medical board in fact already made certain rather arbitrary decisions designed to lighten the committee’s burden as much as possible.
For example, the doctors recommended that the committee begin by passing a rule to reject automatically all candidates over 45 years of age. Older patients with chronic kidney disease are too apt to develop other serious complications, the medical men explained. Also, the doctors thought that the committee should arbitrarily reject children. The nature of the treatment itself might cruelly torment and terrorize a child, and there were other purely medical uncertainties, such as whether a child forced to live under the dietary restrictions would be capable of growth. In any case, the doctors believed it would be a mistake to accept children and thereby be forced to reject heads of families with children of their own.
Finally, the two doctors conducting this initial briefing offered to sit in on all the committee’s future meetings in an advisory capacity. “We told them frankly that there were no guidelines, they were on their own. We really dumped it on them,” one of these doctors has since said.
Before this first session broke up, the seven stunned committee members gratefully voted to accept the doctors’ offer of future guidance. They also voted to keep their own names strictly anonymous. At their second session, they decided they did not want to know the names of the patients either. They will be reading John Myers’ real name for the first time in this article. Then they drew up a list of all the factors which they would weigh in making their selection: age and sex of patient; marital status and number of dependents; income; net worth; emotional stability, with particular regard to the patient’s capacity to accept the treatment; educational background; nature of occupation, past performance and future potential; and name of people who could serve as references.
At the committee’s third meeting they finally got around to facing the problem of choice head-on. Somehow they must drastically narrow the field of candidates. “Where do we begin—the universe? the solar system? the earth?” one committee member asked wryly. Finally they agreed to consider only those applicants who were residents of the state of Washington at the time the feasibility trial got under way. They justified this stand on the grounds that, since the basic research to develop the U-shaped tube had been done at the University of Washington Medical School and at its new University Hospital—both state-supported institutions—the people whose taxes had paid for the research should be its first beneficiaries. “This was arbitrary too,” one committee member admits, “but we had to start somewhere!”
Six months after the first meeting, the Kidney Center was complete, special medical crews were trained, and the committee had hammered out its bylaws. In the same six months John Myers had changed from a healthy-appearing young executive to a tottering invalid too weak to stand up in the shower. The net effect of the preliminary committee bylaws had been to reduce the number of candidates for treatment that the odds for each remaining eligible, such as Myers, to be selected had increased from one in 50 to about one in four. At least these new odds could be rationally comprehended, the laymen felt.
The meetings of the Life or Death Committee are held in the small, ground-floor library of a nurse’s residence hall in downtown Seattle. The room is actually only a few hundred feet away from the three-bed Kidney Center where John Myers and his fellow patients come to be hooked up to their life-giving machines. But save for the comings and goings of the white coated doctors, there is absolutely no traffic between the two rooms. Neither the patients nor the committee wish any such confrontations. Their relationship is far too intimate for casual informality. To protect the integrity of their work, the members of the committee do not disclose exactly how many meetings they have held or how many patients they have considered. But neither do they wish to conceal the way they try to reach a decision, and all seven members have contributed to the preparation of the following facsimile. The dialog has been pieced together from the memories of the people who spoke it. If the exchanges as recorded here seem stilted, the people are nonetheless real, as are the five patients under discussion, and the dynamics of the debate are wholly accurate. The lawyer, who is the committee’s chairman, has just called the meeting to order.
LAWYER: The doctors have told us they will soon have two more vacancies at the Kidney Center, and they have submitted a list of five candidates for us to choose from.
HOUSEWIFE: Are they all equally sick?
Dr. MURRAY: (John A. Murray, M.D., Medical Director of the Kidney Center.) Patients Number One and Number Five can last only a couple more weeks. The others probably can go a bit longer. But for purposes of your selection, all five cases should be considered of equal urgency, because none of them can hold out until another treatment facility becomes available.
LAWYER: Are there any preliminary ideas?
BANKER: Just to get the ball rolling, why don’t we start with Number One—the housewife from Walla Walla.
SURGEON: This patient could not commute for the treatment from Walla Walla, so she would have to find a way to move her family to Seattle.
BANKER: Exactly my point. It says here that her husband has no funds to make such a move.
LAWYER: Then you are proposing we eliminate this candidate on the grounds that she could not possibly accept treatment if it were offered?
MINISTER: How can we compare a family situation of two children, such as this woman in Walla Walla, with a family of six children such as patient Number Four—the aircraft worker?
STATE OFFICIAL: But are we sure the aircraft worker can be rehabilitated? I note he is already is too ill to work, whereas Number Two and Number Five, the chemist and the accountant, are both still able to keep going.
LABOR LEADER: I know from experience that the aircraft company where this man works will do everything possible to rehabilitate a handicapped employee….
HOUSEWIFE: If we are still looking for the men with the highest potential of service to society, I think we must consider that the chemist and the accountant have the finest educational backgrounds of all five candidates.
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 this man is active in church work. This is an indication to me of character and moral strength.
HOUSEWIFE: Which certainly would help him conform to the demands of the treatment….
LAWYER: It would also help him to endure a lingering death….
STATE OFFICIAL: But that would seem to be placing a penalty on the very people who perhaps have the most provident….
MINISTER: And both these families have three children too.
LABOR LEADER: For the children’s sake, we’ve got to reckon with the surviving parents 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.
SURGEON: How can we possibly be sure of that?....
The central problem of such a Life or Death Committee is, of course, that nobody can be sure of anything. But at the end of an hour-and-a-half’s discussion two patients actually were chosen. Both are alive and well today. One is the aircraft worker. The other is the small businessman, John Myers.
Because of the careful groundwork by the trustees of the medical society in appointing the seven members, Seattle’s Life or Death Committee has functioned smoothly in its precedent-setting tasks. If the members have had private doubts, they have tried not to inflict them on one another or on their two doctor-advisers. But in private, the members do not shrink from facing or discussing their delicate assignment. On the contrary, they seem rather to welcome the opportunity to speak out about their uneasy doubts and hopes. THE LAWYER is prosperous, soft-spoken, and dead sure. One would not like to face him in court. He says, “When I was first invited to be on this committee, I said I would prefer not to serve. But I knew I was capable and I felt I would be impartial. We are dealing in this work with life that is being artificially sustained for experimental purposes. The so-called “rejected” patients would have died with or without the committee—as, of course, we all will some day. I cannot honestly say I am overwrought by the plight of the patients we do not choose—the ones we do choose have an awfully rugged life to look forward to. Not all men would wish it.
“As human beings ourselves, we rejected the idea instinctively of classifying other human beings in pigeonholes, but we realized we had to narrow the field somehow. Well, we didn’t know it then, of course, but the very first rule we made—to take only candidates from the state of Washington—actually eliminated our very first candidate. She was a doctor’s wife, from a neighboring state.
“Then I raised the question: what do we do if someone of great wealth says to us. “Take my candidate, and I’ll finance your whole program here”? I tried to point out that this is a two-sided problem: special attention to one candidate might well work out for the greatest benefit to all. But the others couldn’t see it that way.
“We soon realized that our committee was of such a totally new nature that it was useless to try to anticipate our problems; we would only be borrowing trouble. The fact is that progress in this world comes about through the existence of crises, not the anticipation of them. For example, how much chance would a great artist or composer have before our committee? In theory, I believe that a man’s contribution to society should determine our ultimate decision. But I’m not so doggone sure that a great painting or a symphony would loom larger in my own mind than the needs of a woman with six children.”
THE MINISTER is young and only rarely wears his collar. But when he doesn’t, he has an incomplete look. He says, “I went into this thing with a sense of bewilderment. I had never heard of this research or met any of these other people before I was asked to serve. After our first meeting, I was very bothered. I felt I was forced to make decisions I had no right to make, and I felt that, of necessity, our selections would have to be made on the basis of inadequate information. Yet oddly enough, in the choices I have made, the correct decision appeared quite clear to me in each case. The principle of this thing has bothered me more than the practice.
“As we tried to work out our ground rules for selection, I felt a deep sense of awe, almost that we were going beyond our domain. As a clergyman, I have to deal a great deal with life and death, and there has been something helpful to me in recognizing life with some degree of reverence. I know that even with the best of care, there comes a time when life—physical life, as we know it—ceases to be. The realization that each of us is going to die suggests to me that, so long as we are a part of life, we are in a position of responsibility to use that life to help others.
“In the years since my ordination, I find too that my own viewpoint toward death has changed. Death itself is not the worst thing that can happen to a man, and just to live is not the greatest blessing. I’ve often lain awake nights wondering: would I want to take this treatment, if it became a medical necessity for me? But then I’ve thought: well, wouldn’t refusing treatment be a sorry admission of cowardice—an easy way to escape my responsibility to my wife and children?
In my work on the committee, I tend to favor those candidates who have younger children. My thinking on this is—a child who is older has had the privilege of a parent longer, and ought to be better prepared to face life alone. But I often wonder—suppose I should somehow meet a man I had voted against? What would I say to him? I believe I would face it. I would tell him my reasons. The purpose of our committee is to protect the medical men from just such highly emotional situations. If they have to go through emotional stress, they cannot conserve their energies for their own work. A doctor’s job is the practice of medicine. My job is to help people form a set of life values. And to help them accept the fact that, like birth, death itself is a part of life—not, wham, the door slams!”
THE HOUSEWIFE is an uncommonly pretty grandmother and she is no fool. She says, “All my life I have always been disgustingly healthy. Perhaps for that reason, I am not at all medically minded. In fact, the truth is that I think doctors are apt to be terribly stuffy—especially about new things. So it is wonderful to me to have a chance to help in a real breakthrough. This is not something like cancer, where you still don’t know. This treatment works! That gives me terrific hope.
“I realize the doctors must use people, not animals, for this research, and I think in a funny way that actually helps me to serve on the committee. Because I do like people so much. I feel our own anonymity is vitally important too, because it is only if we are truly unknown that we really can be a buffer for the medical profession.
“At the same time I do wish we could somehow see the patient and get a personal impression. It is so hard to judge from a sheet of paper whether or not a man could take the treatment and hold-on. I know he’d have to be an optimist by nature because it does limit your life.
“You know, the doctors usually give us their estimate of how long a patient will live without treatment, and this information affects our thinking a good deal. We always have hope that by some miracle the facilities can be enlarged in time to save the patient who has some chance of living longer without this treatment.”
THE BANKER is direct and peppery. He looks like a retired general. He says, “I’ve never had any idea how a kidney works, and I still don’t. But I do have reservations about the moral aspects, the propriety of choosing A and not B. for whatever reason. I have often asked myself—as a human being, do I have that right? I don’t really think I do. I finally came to the conclusion that we are not making a moral choice here—we are picking guinea pigs for experimental purposes. This happens to be true: it also happens to be the way I rationalize my presence on this committee.
“The situation, as I see it, is life and death, complicated by limitations of money. In this situation our function is to take the pressure off the doctors. I don’t know if we’re doing the right thing or not. Maybe this whole deal is futile. Probably it is, in a sense, now, but maybe some economics of operation can come out of it so that everyone who needs treatment can have it, without becoming a burden on society. It costs $15,000 a year to keep each of these patients alive. And once you put a man on the artificial kidney, it’s for life. His life. Where is the money coming from?
We have limited funds, we take whom we can, and that’s it. So far, fortunately, we have not had to make a choice between two absolutely equal candidates. I suspect that somehow the doctors started us out this way deliberately, to make things easier on us until we got used to the idea of choosing. But what happens when we get two men with the same job, the same number of children, the same income, and so forth? We could face that dilemma at any moment.
“I have asked myself—suppose I got this kidney disease, would I apply for treatment? Well, I think I would, like a shot! And if I was denied it, I’d feel bitter. I’d think society would owe it to me if they owe it to another individual.
“We send billions of dollars overseas to people we know nothing about, many of whom despise us. If Congress or somebody wanted to provide the money, we could take care of all our kidney people. But where do we stop? Who decides who needs treatment? The federal government would soon be treating the medically ill, alcoholics, old people, blind people, deaf people, people who need false teeth—everybody! Is this what we really want? I frankly don’t know.
THE STATE OFFICIAL acts so meek and mild he almost manages to conceal his flashing intellect. He says, “The central problem here is that medicine has moved forward so rapidly it has advanced beyond the community’s support. Our committee must try to bridge the gap. Our chief problem so far has been inadequate information. We have forced ourselves to make life-or-death decisions on a virtually intuitive basis. I do have real faith in the ability of kindly, conscientious, intelligent people to do a good job guided simply by their instincts, but we ought not to go on this way.
“Up to now, our only source of information has been the patient’s personal physician, and he is in no position to ask the questions we want answered because he knows we might turn his patient down. In any case, a physician isn’t geared to this approach. He is under the pressure of urgent medical problems. The committee needs its own staff of private investigators; a social worker, a vocational guidance counselor and a psychiatrist. We agreed to set up such a staff at our last meeting. We did not do this sooner because for a long time we feared that going directly to the patient for information would cruelly raise false hopes.
“I have come to believe we can tell the patient, if we say something like this: In order to help you best—a person who has a chronic illnesses, and who may be expected to have it for a long time—it is necessary to know as much about you as possible. I believe patients will understand our attitude. The resources of the human spirit in adversity are truly remarkable. These people can face more than we give them credit for.
THE LABOR LEADER wears an old-fashioned gold watch chain and the scrubbed, pragmatic expressions of a railroad conductor with long tenure. He says, “The way I look at it, if the Seattle trial is to be a pilot for other committees, we cannot afford any human failures. Also, we just haven’t got the funds. So I want to pick the man with the most will power, the fellow who is least likely to give up.
“Suppose we take someone on the program, keep him going for three months, and then he blows up on us? Suppose he fails to take care of himself, or follow his diet, or gets depressed and tries to take his own life? That can happen in these cases, you know. Well, this would deprive another patient of the opportunity we can offer. That’s why knowing about a candidate’s past life would rate so heavily with me—it’s an indication of character. A man’s job, his education, his wealth—that means nothing to me. But I do think a man ought to have some religion, because that indicates character. And I imagine a large family would be a great help—a lot of kids help keep a man from letting down even when the going gets rough.
“The wonderful thing to me about this work is that we are finally past the stage of experiment. We know we can prolong life. These doctors got an idea and they made it work. With the mass production facilities we have in the country, I believe we can eventually take care of everybody. Meanwhile we say to these patients, in effect, “We’re going to help you prolong your life by choosing to put you on this machine. Now, what can you do for us?”
THE SURGEON is an enormous man with a tiny voice, a courtly air and great patience. He says, “Medically speaking. I am not a disciple of this particular approach to kidney disease. But in the larger view, this project will not just benefit one disease—it will benefit all aspects of medicine. We are hoping someday to learn how to transplant live organs. So far, the body will not accept foreign tissue from another person, but eventually we will find a way to break this tissue barrier. Meanwhile I serve on this committee not as a doctor but as a citizen and, I hope, a humanitarian.
“You know, at our committee’s first meeting we seriously discussed selecting candidates by drawing straws. We were going to make it easy on ourselves by having a human lottery! Frankly, I was almost ready to vote for the lottery idea myself. In the practice as a surgeon, the responsibility of making life-or-death choice faces me practically every day, and I can tell you this: I do sleep better at night after deciding on one of these committee cases than I sleep after deciding a case of my own. I’m awfully glad, too, that we just know these candidates by number, not their actual names.
“Being a medical man, I sometimes hear it via the grapevine when a patient whom we have passed over dies. Each time this happens there always comes a feeling of deep regret, and then the dreadful doubt—perhaps we chose the wrong man. One can just never face these situations without feeling a little sick inside….”
The concept of the little U-shaped tube that started it all germinated two years ago in the mind of a deceptively mild professor of medicine at the University of Washington Medical School named Belding H. Scribner. Within a week the first experimental tube was made and sutured into the arm of a patient who was on his deathbed from Bright’s disease. It worked—the man is alive today—and within a month it was successful again then three more “hopeless” cases. Then abruptly for 13 months, the entire experiment was shut down. Before taking on any more patients it was necessary to perfect certain practical techniques. In the beginning, the tubes wore out too fast, or clotted, or became infected and had to be removed and resewn into other parts of the body. The early machines themselves were tricky to handle. The primary need was to simplify the entire technique from a complicated “operating room” type of procedure to a relatively simple routine, like making ex-rays. Until this was done, the technique would remain more a research triumph than a new treatment.
The problem was solved literally in the bodies of the four original patients at the University Hospital. The very first was Clyde Shields, a 42-year-old machinist, who has now survived the implantation of 11 successive sets of U-shaped tubes and has lived totally without any natural kidney function for over two years. Despite his ordeal as a human guinea pig, Shields says he feels better now than at any time since his treatment began.
The most battle-scarred of the original patients is a high-spirited shoe salesman named Harvey Gentry. One month after his treatments, Gentry felt so well he decided to go clam-digging. He got sand in his first set of tubes, lost others through infections, and is now on his 13th set. “I’ve given the docs a pretty bad time, but they’ve learned a lot from me and they always manage to keep ahead somehow,” he says with apparently indestructible optimism.
Another of these research patients is 37-year-old Kathy Curtiss. Between visits to University Hospital for treatments, she is able to carry on a full schedule of cooking and housekeeping for her husband and two teen-age sons. These patients and the dedicated University of Washington medical team which works with them have now proved that the new technique can be made to work. At the same time these patients are living proof that the possibilities of mass treatment must be determined at once.
During the 13-month moratorium on the experimental program, no new patients were accepted, and truly cloak-and-dagger measures were taken to keep the story out of the newspapers. Already, as word of the experiment circulated within the medical fraternity, the doctors were receiving agonizing appeals from colleagues to take on more patients than they could possibly care for. To avoid such intolerable pressures, the novel double-screening device of a medical board back-stopped by a lay committee was proposed in the application for a $250,000 research grant which was made to the John A. Hartford Foundation. Then, even before they were sure the money would come through, the doctors went to the trustees of their own medical association and asked them to appoint members of both the board and the committee.
The trustees agreed to act. This was a crucial decision. It meant acceptance of the principle that all segments of society, not just the medical fraternity, should share the burden of choice as to which patients to treat and which to let die. Otherwise society would be forcing the doctors alone to play God.
As a buffer between the doctors and the public, the committee has functioned well. It has protected doctors from having to make intolerable choices among their own patients. But in the 11 months of its operation a host of new problems has arisen to plague both doctors and laymen which neither group anticipated at the outset.
What happens to the kidney patient who has been maintained in good health by the machine for some time and then suddenly has a stroke or gets cancer? Is he now removed from the machine in favor of a “healthier” patient who only has one fatal disease, not two? Who decides? The patient? The doctor? The committee?
Compared to other vital organs, the kidney is relatively simple in function. It is a filter. What happens when, sooner or later, medicine learns to manufacture other artificial organs? Are we moving, in the name of science and mercy, toward a nightmare world in which a segment of our population is kept alive by being hooked up to ingenious machines operated by the other half? In such a world the most fit individuals would devote their lives to keeping the least fit alive.
Consider, also, a few of the strictly practical problems which have actually arisen in the committee’s recent sessions. The patient’s case history is written up by his own physician. Some doctors write better than others. How should the committee avoid being swayed by the inadequacy or excellence of the presentation?
In any event, the facts at the past meetings have seemed inadequate. But in the future, when a committee has in its employ a professional social worker, a vocational counselor and a psychologist to report on each patient, how can the relative abilities of these three staff members—say, their ability to write up case reports—be judges? And won’t they have unconscious prejudices? And won’t they have to be anonymous too? And if all these questions are fairly answered, then won’t the committee be abdicating its own responsibilities and making the little three man subcommittee bear the dreadful burden of choice?
No matter who decides, aren’t the final choices all shaky, all arbitrary, all relative? They depend on a patient’s unique worth, but on his comparative position in a particular slate of candidates. Who really is the more suitable patient under the present committee rules—the man who, if he is permitted to continue living, can make the greatest contribution to society; or the man who by dying would leave behind the greatest burden on society?
On the basis of the past year’s record, a candidate who plans to come before this committee would seem well-advised to father a great many children, then to throw away all his money, and finally to fall ill in a season when there will be minimum of competition from other men dying of the same disease.
As the shock waves of each new committee decision reverberate further and wider over our moral and social landscape, we can look back to John Myers’ hospital room the afternoon following Christmas Day. The delicate two and-a-half-hour operation to implant the tube in his arm was done at his bedside, under local anesthetic. As soon as the surgeon finished, the artificial kidney was wheeled into the room and hooked up. Myers’ long, slow physical decline had unexpectedly accelerated so rapidly that there was no time to wait for the wounds in his arm to heal. Such sudden speedups and slowdowns are characteristic of the disease. They explain why, though by the committee, Myers’ arm had not yet been prepared for the machine.
The kidney as set up at the head of Myers’ bed, and he asked for his wife Kari and her compact so he could watch in its little mirror what happened to his blood. But what he mainly remembers is staring at the frightening sight of his own face. “My skin had turned funny, dark-gray color, my eyes were pink, and I looked exactly like a very sick seal.”
By mid-January, Myers was able to return home, and soon he went back to work, though only for an hour at a time. Now he is up to a seven-hour day and he feels better than he has in two years. “Of course I never feel like running a race or staying up all night,” he admits. “Like all the patients, I still have high blood pressure, and I still get tired easily. But at least I’m like other people again.”
Like the other patients, Myers is a veteran of many grimly efficient hospitals and he is greatly impressed by the easygoing, casual atmosphere at the Kidney Center. Indeed, at times he finds the whole place almost impossible to believe. So do outside visitors who happen to drop in. While their blood percolates through the machines alongside them, the patients read, chat, eat, watch TV or simply drift off to sleep. All the patients and the medical personnel call each other by their first names, and they all appear as cheery and relaxed and downright folksy as the customers and the attendants at an exclusive health spa. Says Myers, “What a terrific experience this has been”! Even if we were paying through the nose, we wouldn’t expect this kind of attention. The personal care they give you here—it borders on affection.”
Though all the patients at the center are now aware that they owe their lives as much to a committee of unknown laymen as they do to the doctors and nurses and machines, they find the committee a far more difficult subject to talk about. John Myers says, “I guess that as long as facilities are not unlimited, somebody has to pick and choose. And then they have to go home and sleep at night. What a dreadful decision! It’s like trying to play God. Frankly, I’m surprised the doctors were able to round up seven people who were willing to take the job.”
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The text is from "They Decide Who Lives, Who Dies" - transcription taken from a recent KidneyTimes http://kidneytimes.com/article.php?id=20110304143111
or view the original article with photos on Google Books here http://books.google.com/books?id=qUoEAAAAMBAJ&lpg=PA1&dq=life%20magazine%20nov%201962&pg=PA101#v=onepage&q&f=false
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That's the most frighteningly fascinating thing I've read in a long time. Thank God for progress.
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thanks okarol for sharing. it's a long read but finished it in one sitting. very interesting.
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Oh, thank you so much, Karol! I have been looking for this article for ages and my google skills failed me.
Apparently, this is the article that caused the public furor. They really missed their guess with it, thinking that people would find it interesting but not morbidly offensive. Surprise!
I have not read the whole thing yet, just the first bit while waiting at labs. The u-shaped tube, that's a scribner shunt. I had one of those 14 years later, and it was not painful at all. I posted a picture of my shunt from back in the day if anyone wants to see it, but that was probably a year ago. Personally, I wish they still used them, but doctors have all said that they are dangerous and ghastly to work with, so I guess it's not a dearly missed access (for doctors anyway). By now, there really should be a way to give dialysis that involves no pain (fistula, graft) and no risk of lethal infection (catheters).
So far, my only comment is to the sentence that said one must be "strong enough" to be selected. Ick. By the professions mentioned in 1962, they obviously were only picking males. Barbaric, to put it mildly.
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From what cariad says, there must be a follow-up article that expresses the unexpected offense. Any chance someone can give us a link or copy it here?
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That's a good point, Stoday. I don't know if there is such an article, but I would love to read it, too.
I hope this link works - it is to the Letters section of the late November edition. (I had no idea Life used to be a weekly....) Out of the six printed letters, 2 are from outraged readers. Perhaps the only record of overwhelming public disgust was a stack of similar messages? Anyhow, page 25 if it does not take you directly there.
http://books.google.com/books?id=rUoEAAAAMBAJ&lpg=PA17&dq=life%20magazine%20nov%2030%201962%20letters&pg=PA25#v=onepage&q&f=false (http://books.google.com/books?id=rUoEAAAAMBAJ&lpg=PA17&dq=life%20magazine%20nov%2030%201962%20letters&pg=PA25#v=onepage&q&f=false)
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i think you call these people the "GOD SQUAD"
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Here's the iconic photo that was published with the article
I bought this issue on eBay for $3.00. The cover is the Cuban Missile crisis.
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And here is a version of the photo that was never published. I found this one day when I was in University of Washington archives. looking through old files.
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And here is a photo of Clyde Shields dialyzing (notice his shunt), he was the first chronic patient Scribner treated in March 1960.
This experience was really the birth of bio ethics. It is easy to look back today, fifty years later, after fifty years of hard earned lessons and scholarly work in the field of ethics, and find fault with Scribner and Haviland's choice but in the context of his times I think Scribner and Haviland made a wise choice.
The main thing the admissions committee did was to take the decision away from doctors and that was very controversial but I think it was smart to give the responsibility to the community. Ultimately no one should have to make the choice but it shouldn't be left to chance either so it came down to volunteers for some hard duty. It would not be a job I would want.
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And here is a version of the photo that was never published. I found this one day when I was in University of Washington archives. looking through old files.
That's cool Bill. I had never seen that photo before.
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This is turning out to be a most interesting thread. The outraged in Cariad's newspaper link do not suggest any alternative method of selection; if it is not to be by a committee, then there is an implication of selection by lot. With resources that cannot meet the demand for some years, selection is unavoidable.
Even so after 50 years, we can comment on the morality of selection by lot. It would have avoided the apparent bias in favor of middle class males. That committee was not a balanced selection of the general population so it is hard to expect them to make an unbiased, if disinterested, selection.
The two photos Bill Peckham has uploaded seem to me to be contemporaneous. They are not the same of course, but I think they were taken only seconds apart. Look at how legs are crossed by some. Particularly the vicar's peculiar way of crossing his legs.
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Well, call me a horrible old cow, you wouldn't be the first, but I still feel outraged and disgusted with these people and find myself wishing organ failure on all of them (maybe not the banker). But just try to convince me that any of them were not secretly high on the power given to them, at least at some level.
It was already a well-established fact from the field of anthropology that whenever you ask people to rank other humans, they quite suspiciously put people exactly like themselves at the top of the hierarchy. This was revealed when early anthropologists decided to wrestle with the pointless question of what makes a society "civilized". Why, white male leaders, of course, and a formalized school system, and proper clothing, and hand me a mirror, I'll tell you more....
I feel like the Labor Leader was stabbing me in the back. Et tu, my fellow Dem?
The vicar should have flatly refused to participate in such a barbaric exercise. Is he playing God? Of course he is. Shame on him. The reasoning for excluding children is bizarre to me. Why they keep talking about what they want to see in "a man", and the housewife just sits there listening, never bothering to say 'hey, just a second here....' She's no fool? She meets every definition of one that I can muster. They see no value in women, they picked a shockingly young cutoff age, they see no value in the arts, and all of it because 'they have to start somewhere'. That is sheer intellectual laziness, and they were allowed to go on like this for years!!! I have needed dialysis twice in my life, and both times I know that I would have been rejected by their criteria, a clear message that they do not think I am worth it. And this is what I see transplant has turned into, in a society that lists inalienable rights like life, liberty and the pursuit of happiness and principles such as all men are created equal, then only winks at these concepts when it comes down to action. I know I am just spluttering with impotent rage, but I see these same arbitrary judgments being made today with regards transplant, and it sickens me. The only criteria I really feel they were justified in making was to exclude people from outside of Washington state.
I strongly feel that the doctors should have taken everyone who could have survived the procedure and drawn lots. When it was in the experimental phase then OK, select your dream candidates and then prepare to be amazed when they let you down. (Sounds like one of them was just the tiniest bit non-compliant, no?) But as soon as it moved on to other hospitals, it should have been a straight lottery - and don't put people through the stress of knowing that there is a chance and then telling them no. Draw your participants, then contact them, and if one turns you down, fill the slot with another draw. Why they were still doing this five years later faileth human understanding to borrow a phrase.
Bill, those pics are amazing. Thank you! Now at least I know what the people I wish to smack look like.
Oh, and I got myself embroiled in a vicious debate over this years ago when another transplant patient mentioned that one of his doctors (at UCLA) had been on the life or death committees. Oh, but he HATED the job, so I guess that makes it OK. To me, there was a doctor to avoid at all flipping costs and I still cannot understand how on earth one could still go to such a doctor after such an admission.
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cariad I think you'll be interested in this three page article by Father Darrah - he was the priest on the committee. He was the only member of the committee willing to discuss his experience publicly - which I think speaks to how unpleasant they found the experience.
I tried uploading the PDF I have of this article but it was too large - so I went the JPG route, hope it is readable.
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Well, call me a horrible old cow, you wouldn't be the first, but I still feel outraged and disgusted with these people and find myself wishing organ failure on all of them (maybe not the banker). But just try to convince me that any of them were not secretly high on the power given to them, at least at some level.
The one who really pissed me off was Labor leader with this sickening tidbit: "But I do think a man ought to have some religion, because that indicates character." Excuse me?! So someone who doesn't believe in an invisible sky being invented 2,000 years ago by a bunch of people who weren't even smart enough to find their way out of a desert for 40 years can't possibly be moral? Really? How moral is that, to let someone die because their beliefs - BELIEFS! - don't fall in line with your own?
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My father was evaluated for dialysis by such a committee in early 1965 when I was 17 years old and a senior in HS. He had PKD that had progressed to ESRD but had no other health problems.
He was 48 years old and was working at the time of the evaluation. As part of the evaluation he was given dialysis treatments and it was amazing how well he responded to the treatments. One of the questions asked concerned how many children he had and their ages. I had two brothers that were older than I.
He was passed over by the committee and died within two weeks after his release. My understanding is he was passed over because I, being the youngest, was old enough to support myself.
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Oh dear God, ahamner, I just can't imagine, just can't imagine. How horrifying. This is the stuff of nightmares.
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Thanks for that article, Bill! It was most certainly readable.
I cannot say that I feel any friendlier toward John Darrah after reading it. He mentions early in the article that he turned them down, but yet went to the meeting all the same. There they fed him some nonsense about "We're not asking you to choose who dies, just who lives." Then he writes "I detected a change in perspective." Well, I detect shielding oneself from one's own conscience through eager rationalization. Was he really surprised that someone asked him how much he enjoyed the power? Because that was what instantly came to mind for me, and I had not read this article yet. His reasoning seems to be "I had to do it, because someone was going to do it, and that someone might not be me and make all the superior decisions that I would make."
I submit this: what if they all gathered at that meeting and one of them stood up and said, in front of the lot of them, No. You cannot do this, it is wrong. Draw the flipping lots. And by the way, choosing who lives IS choosing who dies, so don't try to confuse me with your fancy talk! How different this history might have been.
In researching this a bit further, I came upon a presentation and long article entitled What Scribner Wrought (it may have been a book excerpt). I transcribe the following from this, because I think it states my case well. (And I did not read this before writing my earlier reply, which is a bit spooky, because I think I would be charged with plagiarism by any university for not citing this):
This type of selection process reflects "an ethical muddle and worse" charged David Sanders and Jesse Dukeminier in their influential 1967 Law Review article. The Life piece and a similar one in Redbook provide "numbing accounts of how close to the surface lie the prejudices and mindless cliches" that measure worth by a "middle-class suburban value system" and would disfavour creative non-conformists. "The Pacific Northwest is no place", they write, "for a Henry David Thoreau with bad kidneys."
(That last bit made me smile :))
To continue:
Sanders and Dukeminier grant that when the committee began its work, chronic dialysis was truly an experimental program and broad selection discretion was perhaps justified. Once it is no longer experimental, however, they argue that justice requires a transparent and fair selection process. The law does not, they note, provide much specific guidance here, although principals underlying the Constitution's equal protection clause "may require a more impersonal method of selecting who is to be saved from among the dying".
There is next discussion of other situations in which life or death decisions must be made (Titanic sorts of scenarios) with this conclusion:
Sanders and Dukeminier consider a variety of other selection criteria and conclude that while none is perfect, and they do not know which is best, any are preferable to ad hoc comparative judgments of social worth.
The fact that their thought process so closely mirrors my own, some 45 years later, suggests that this was common sense, even back then.
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Thanks for that article, Bill! It was most certainly readable.
I cannot say that I feel any friendlier toward John Darrah after reading it. He mentions early in the article that he turned them down, but yet went to the meeting all the same. There they fed him some nonsense about "We're not asking you to choose who dies, just who lives." Then he writes "I detected a change in perspective." Well, I detect shielding oneself from one's own conscience through eager rationalization. Was he really surprised that someone asked him how much he enjoyed the power? Because that was what instantly came to mind for me, and I had not read this article yet. His reasoning seems to be "I had to do it, because someone was going to do it, and that someone might not be me and make all the superior decisions that I would make."
I submit this: what if they all gathered at that meeting and one of them stood up and said, in front of the lot of them, No. You cannot do this, it is wrong. Draw the flipping lots. And by the way, choosing who lives IS choosing who dies, so don't try to confuse me with your fancy talk! How different this history might have been.
In researching this a bit further, I came upon a presentation and long article entitled What Scribner Wrought (it may have been a book excerpt). I transcribe the following from this, because I think it states my case well. (And I did not read this before writing my earlier reply, which is a bit spooky, because I think I would be charged with plagiarism by any university for not citing this):
This type of selection process reflects "an ethical muddle and worse" charged David Sanders and Jesse Dukeminier in their influential 1967 Law Review article. The Life piece and a similar one in Redbook provide "numbing accounts of how close to the surface lie the prejudices and mindless cliches" that measure worth by a "middle-class suburban value system" and would disfavour creative non-conformists. "The Pacific Northwest is no place", they write, "for a Henry David Thoreau with bad kidneys."
(That last bit made me smile :) )
To continue:
Sanders and Dukeminier grant that when the committee began its work, chronic dialysis was truly an experimental program and broad selection discretion was perhaps justified. Once it is no longer experimental, however, they argue that justice requires a transparent and fair selection process. The law does not, they note, provide much specific guidance here, although principals underlying the Constitution's equal protection clause "may require a more impersonal method of selecting who is to be saved from among the dying".
There is next discussion of other situations in which life or death decisions must be made (Titanic sorts of scenarios) with this conclusion:
Sanders and Dukeminier consider a variety of other selection criteria and conclude that while none is perfect, and they do not know which is best, any are preferable to ad hoc comparative judgments of social worth.
The fact that their thought process so closely mirrors my own, some 45 years later, suggests that this was common sense, even back then.
I think Sanders and Dukeminier represent a strong critique but it is quite a stretch to suggest they were repeating the conventional wisdom of the day. Neither they nor Anthropologists had developed the modern sensibility that you and Desert Dancer are coming from.
Here is a paper from a conference in 1975 that reflected on the 1962 experience, on the 13th anniversary of the Life article.
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I think Sanders and Dukeminier represent a strong critique but it is quite a stretch to suggest they were repeating the conventional wisdom of the day. Neither they nor Anthropologists had developed the modern sensibility that you and Desert Dancer are coming from.
Here is a paper from a conference in 1975 that reflected on the 1962 experience, on the 13th anniversary of the Life article.
Bill, it seems to me that those who were 'called' to serve on this committee had a responsibility to step outside their cultural sensibilities and question both their communities' conventional wisdom and their own assumptions; they had an obligation to be entirely objective. This is not a modern skill. Indeed, the first instinct of the committee was to draw straws; it was seriously discussed and discarded at the first meeting, and cultural prejudices were allowed to supplant that first burst of objectivity. Not once in the representative discussion did I see anyone challenging a single assumption, such as: why do we consider someone childless less worthy than someone who's fathered children? Why isn't there a more equitable representation of women among the patients considered? (The fact that the only patient to confront them - accompanied by a lawyer - was a 'minority' speaks volumes also.) I see them discussing the relative merits - financial and otherwise - of the patients presented, but not once do I see any of them questioning their own societal conditioning. The ability to do so should have been a pre-requisite and from what I can gather not one of the committee members recognized this lack in themselves.
Personally, I did not get the impression that any of them 'got off' on the power they held (at least not consciously); they seemed to be generally earnest and sober about the job with which they were tasked.
I suppose it's easy to judge without having been in their position. I also don't think I would have accepted such a position. How does one say, "I can't play God!" and then go right ahead and do so?
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Oh, and Bill - thank you for the pictures and the articles! :thx;
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I think Sanders and Dukeminier represent a strong critique but it is quite a stretch to suggest they were repeating the conventional wisdom of the day. Neither they nor Anthropologists had developed the modern sensibility that you and Desert Dancer are coming from.
Here is a paper from a conference in 1975 that reflected on the 1962 experience, on the 13th anniversary of the Life article.
Bill, it seems to me that those who were 'called' to serve on this committee had a responsibility to step outside their cultural sensibilities and question both their communities' conventional wisdom and their own assumptions; they had an obligation to be entirely objective. This is not a modern skill. Indeed, the first instinct of the committee was to draw straws; it was seriously discussed and discarded at the first meeting, and cultural prejudices were allowed to supplant that first burst of objectivity. Not once in the representative discussion did I see anyone challenging a single assumption, such as: why do we consider someone childless less worthy than someone who's fathered children? Why isn't there a more equitable representation of women among the patients considered? (The fact that the only patient to confront them - accompanied by a lawyer - was a 'minority' speaks volumes also.) I see them discussing the relative merits - financial and otherwise - of the patients presented, but not once do I see any of them questioning their own societal conditioning. The ability to do so should have been a pre-requisite and from what I can gather not one of the committee members recognized this lack in themselves.
Personally, I did not get the impression that any of them 'got off' on the power they held (at least not consciously); they seemed to be generally earnest and sober about the job with which they were tasked.
I suppose it's easy to judge without having been in their position. I also don't think I would have accepted such a position. How does one say, "I can't play God!" and then go right ahead and do so?
Culture has changed much in the last 50 years and it is truly impossible to judge them by today's standards at all, they didn't exist at that time. This was the first step recognizing what is excepted as the field of bio-ethics. At that time, there were no ethical standards to dictate how to solve the disparity between supply and demand which far exceeded the supply for several years. Today, we readily see the merits of having a ethics committees make recommendations in difficult cases, but today, we have an entire body of literature to guide these committees. None existed with the Seattle committee, they were the beginning. In such, they made difficult decisions that we can easily second guess today, but I believe that is an unfair criticism to interject todays standards into a committee doing the best they could 50 years ago. They served a purpose that has lead to an entire new field.
In addition, there are many more players in this drama than just the committee including state officials, feds and charities. With treatments costing about double many people's yearly salaries, without outside assistance very few people would have had dialysis. This same situation exists in the majority of the world. We need to recognize what we have in the US with all of its problems is not the norm around the world. I appreciate what we have and understand readily that there were only a certain number of patients that the Seattle system could handle. I believe they did the best with what they knew, what they had and what they did. That is not a job I would have wanted in any form and I don't believe a single one solicited the position, they were asked to serve in a difficult situation. I suspect that their decisions kept them awake at night more often than not. I am also sure it was not a power evoking feeling but one of humility in proceeding with their tasks. My goodness, would any of us volunteer or accept such a position with its duties? I think not.
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I think Sanders and Dukeminier represent a strong critique but it is quite a stretch to suggest they were repeating the conventional wisdom of the day. Neither they nor Anthropologists had developed the modern sensibility that you and Desert Dancer are coming from.
Here is a paper from a conference in 1975 that reflected on the 1962 experience, on the 13th anniversary of the Life article.
Bill, it seems to me that those who were 'called' to serve on this committee had a responsibility to step outside their cultural sensibilities and question both their communities' conventional wisdom and their own assumptions; they had an obligation to be entirely objective. This is not a modern skill. Indeed, the first instinct of the committee was to draw straws; it was seriously discussed and discarded at the first meeting, and cultural prejudices were allowed to supplant that first burst of objectivity. Not once in the representative discussion did I see anyone challenging a single assumption, such as: why do we consider someone childless less worthy than someone who's fathered children? Why isn't there a more equitable representation of women among the patients considered? (The fact that the only patient to confront them - accompanied by a lawyer - was a 'minority' speaks volumes also.) I see them discussing the relative merits - financial and otherwise - of the patients presented, but not once do I see any of them questioning their own societal conditioning. The ability to do so should have been a pre-requisite and from what I can gather not one of the committee members recognized this lack in themselves.
Personally, I did not get the impression that any of them 'got off' on the power they held (at least not consciously); they seemed to be generally earnest and sober about the job with which they were tasked.
I suppose it's easy to judge without having been in their position. I also don't think I would have accepted such a position. How does one say, "I can't play God!" and then go right ahead and do so?
Yes! I agree with all of this. Why did they not put more thought into just exactly what type of person would be best to serve on the committee? And I cannot follow the logic that led them away from simply drawing straws, all I can take away from that is that they would have in effect be admitting that no committee should be formed and that they somehow lacked the ability to do a proper job of this, which was absolutely TRUE.
Everything in the original article suggests that it did not trouble them terribly, at least not all of them. Who said that he had to admit that he did not worry about the people who were not selected because they were going to die anyway, or something? Does this not seem to echo the insurance company argument "We never deny treatment to anyone, we just refuse payment." And the fact that none of us would accept this position was entirely my point - the committee should have instantly rejected anyone willing to serve in this capacity. (Yes, it's a paradox. That committee should never have formed. Doctors can draw lots as well as anyone else.)
Bill, I was taught that anthropologists most certainly did have a somewhat modern sensibility, going back to the start of the discipline. This is a tremendously homogenous field, and Papa Franz (Franz Boas) was known for his hatred of both racism and sexism, not apparently because he was such a strong civil rights proponent, but because he had a strong mother and believed racism was utterly poor science. He would have had much to say to the committee, I suspect, had he still been alive. I am no expert on anthropological history, and can only report what I remember from my schooling ages ago, but it is a very modern science, having only really begun a little over 100 years ago. The definition of the job of the early ethnographers was to record and analyze, and gain understanding which would be difficult to do while also judging other cultures.
Yes, I also agree that it is easy to judge and impossible to say for certain what we would have done, but that's part of the joy of theorizing about it today. I can pretty well guarantee that I would never have served 8 long years at this task without demanding at some point that we reexamine the wisdom of the committee's existence. I somehow imagine that I lack the profound arrogance that it would take to believe that I was so intellectually superior that it was somehow my duty to serve. Two lawyers were able to deduce that the committee came up with the absolute worst way of proceeding. Life received hostile letters from readers, who I think we can assume were just ordinary American citizens. Did the committee members live in a bubble? Did they honestly never happen upon any critique of this? Judge not lest ye be judged is in the Bible, so it can hardly be deemed a modern concept.
Thanks for all the links, Bill. I have not had a chance to look at the latest article, but I have downloaded it and will read it when I get the opportunity. I appreciate the discussion and am finding everyone's perspective terribly interesting. On some level, I really do not know how to forgive these people. I heard similar arguments in South Africa about apartheid - that people who were still racists were not to be blamed because this was how they were raised. I just cannot let any of them off that easily.
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Can I copy and paste this article and post it on my facebook page "Help Lisa Spread awareness of Kidney Disease"?
Atleast people will know how far we have come.
Lisa
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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.
http://healthaffairs.org/blog/2009/11/30/the-seattle-god-committee-a-cautionary-tale/
Once again, we have the benefit of well thought out ethical guidelines today, and we have access to medical technology to large populations that did not exist at the time making their decision process look suspect in retrospect. Yet today, if we had similar resource allocations, I suspect that any decision criteria would likewise end up with inequalities of distribution even with all of our modern ethical paradigms. The bottom line is that I hope we never face such a terrible decision today, it still wouldn't be pretty no matter how much lipstick you put on it.
i would challenge folks to look up current pandemic flu guidelines to see where dialysis patients would end up in the event of a large scale flu outbreak with thousands of people showing up to a single emergency room. According to the current guideline in our modern ethical paradigm, dialysis patients will NOT be treated period, they go home and live or die without treatment. I think before we get on too high a horse about the Seattle committee, we should step forward into today's world and ask whether we have really advanced or not. The Seattle committee had many people of equal survival without the resources to treat them all. I would ask how people today would have made those decisions today? That may be the best way to truly see what these folks faced. I hope we never see those days again here in America, but in fact, we could be months away from an outbreak of a lethal respiratory virus such as Avian flu. This time, it will be doctors making life or death decisions for people standing before them on the spot without the benefit of much information at all.
I don't believe we will ever have an equitable distribution system in the advent of severely limited access to medical care. I suspect however, that those with the greatest economic resources will once again fair better than the poor without any financial resources. I don't believe in the end that much will have changed between those days and now.
Lastly, if you read many of the historical references, the Seattle committee was not the final leg for patients who were treated through innovative wheeling and dealing by Dr. Scribner and his doctors. Dr. Robin Eady I believe was one of those patients who stayed in Canada after Scribner made those arrangements while he waited for programs in England to open up.
The young Eady, who had been healthy his entire life, learned he had kidney failure when
he suffered from severe hypertension as a medical student in London. His health quickly
deteriorated and doctors could do little to help him. Then one day while at the
hairdresser, his mother read in Life magazine about the new treatment in Seattle. Eady’s
family persistently pursued treatment for him in Seattle, where Dr. Scribner administered
dialysis to him for four months. He then moved to Edmonton, Canada, to work as a renal
technician and became one of the first in Canada to receive chronic dialysis treatment.
After the treatment became available in England, he returned to London in December
1964 – again as one of the first to receive chronic dialysis treatment there.
http://www.nwkidney.org/aboutUs/news/Dr_Eady_receives_Clyde_Shields_Award.pdf
Scribner and his colleagues went above and beyond what the committee could do alone through connections with other dialysis centers. The bottom line, there just were not enough machines or centers to care for all of the people who needed the technology. Today, QALY is one of the arbiters of resource allocation and many disagree with this criteria as well since it leads to many disparities as well. QALY is tied into cost per QALY in many ethical analysis, right back to value of life based on money that I suspect people are utilizing in their criticism of the Seattle committee. Would an even more arbitrary lottery system have been better? We did that with the later draft at the end of the Vietnam war. Many people in my generation lived or died by a completely arbitrary number assigned to them. College students had exemptions as well, another social worth decision which I believe simply shows how infantile the study of bioethics was in the 1960's. We can look back today and easily see the difficulties of social worth as denominator of survival, but it reflected societal values of that time that we have now rejected today. Yet, even with the new paradigms, how many feel comfortable knowing an entire population of patients will be excluded from emergency room care in the event of an overwhelming pandemic here in the US. Is that a better system than arbitrary social worth values?
I don't know, but I don't believe we have any perfect system today or yesterday. It will always boil down to very difficult and at times arbitrary criteria that no one will agree with at all times. Terrible personal and family tragedies will follow these decisions no matter what criteria is used. I can't judge the folks on this committer too harshly since we still don't have it all together today to face the same situation.
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The remarkable Voice Expeditions Nephrology Oral History Project (http://www.voiceexpeditions.com/index.php?id=7) has interviewed a number of doctors from that time remembering their own experience with having too few resources to meet demand. One that has always stuck in my head is Sadler (http://www.voiceexpeditions.com/index.php?id=22) describing a situation where a committee in his program declined to allow home hemo for a woman based on her need for a partner and the fact that her live in partner of 12 years a cop, was not willing to tie the knot, for whatever reason. He's quoted as saying "I've been standing by her for 12 years, I am not going to let her go now, but I'm not going to get married." And for that she had to die.
This was not just a Seattle experience. For a first person account of those first years in Seattle, check out Jack Cole's oral history (http://www.voiceexpeditions.com/index.php?id=1012). He was hired to be Scribner's lab tech guy about a month before Clyde Shields received his first treatment and he stayed with Scrib for the duration. Jack is able to speak from a real interesting perspective - a lot more nuts and bolts - about those early days. Here's what he says about the committee:
Yeah. Yeah and Scrib would talk every once in awhile about it. Yeah, it was a, it was an imperfect solution obviously and, and it bothered him. It bothered him. It, it, it, the thing about it that bothered him was having to turn people away that, in his view, well, in his view it was unnecessary and he couldn’t understand and we couldn’t understand why society wouldn’t come to grips with the, the problem. And deal with the problem. It was just, it was pushed to the side. And uh, I’m, I’m glad I wasn’t on that committee.
I think that Scribner thought if society had to shoulder the burden of choosing, then they wouldn't choose, they'd fund enough to meet demand. I'd say that's what happened. It took 10 years but uniquely dialysis is funded in this country - between Medicaid and Medicare 98 or so % of people who need to use dialysis have funding for their care. Would that have happened if Scribner had made the decision? If Scribner had decided to leave it to chance - luck of some sort of draw - would there be a ESRD program under Medicare?
The idea of it being left up to chance instead, is tempting but aren't we moving away from that in kidney allocation? I'd say that antigen match is basically a random occurrence and these days with antigen match seen as having less of an impact on the Tx outcome ... allocating kidneys by "best match" is equivalent to allocating them by chance. But that system didn't seem fair or at least the results of that system appear to be sub optimal. I think an access to treatment allocation system that relied on chance would seem sub optimal in the same way.
The committee's conceit was that they could do a better job than chance. BTW the Seattle committee didn't have to meet after 1967 because of increased funding and the widespread use of home hemo which was less expensive and required fewer bricks and mortar.
One note. When I found that picture I was in the UW archives, looking in old boxes, looking for the minutes of the committee. I've served on enough committees now to believe that there had to have been minutes taken. Finding those minutes is a treasure hunt I've come back to more than a few times - they're my white whale. I have a lead that I'll try to follow up someday - I think they're out there somewhere.
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Yeah. Yeah and Scrib would talk every once in awhile about it. Yeah, it was a, it was an imperfect solution obviously and, and it bothered him. It bothered him. It, it, it, the thing about it that bothered him was having to turn people away that, in his view, well, in his view it was unnecessary and he couldn’t understand and we couldn’t understand why society wouldn’t come to grips with the, the problem. And deal with the problem. It was just, it was pushed to the side. And uh, I’m, I’m glad I wasn’t on that committee.
I think that Scribner thought if society had to shoulder the burden of choosing, then they wouldn't choose, they'd fund enough to meet demand. I'd say that's what happened. It took 10 years but uniquely dialysis is funded in this country - between Medicaid and Medicare 98 or so % of people who need to use dialysis have funding for their care. Would that have happened if Scribner had made the decision? If Scribner had decided to leave it to chance - luck of some sort of draw - would there be a ESRD program under Medicare?
OK, now we are getting somewhere! For this point makes all the sense in the world to me, but requires that one admit that these people were collateral damage for a cause. I guess if that was a conscious decision on Scribner's part, then would he not have chosen to make the committee proceedings public?(not member identities, that could have been a safety issue) This is the most interesting theory that I've heard yet, Bill. I do recognise Scribner as a the great humanitarian that he apparently was, and his enormous contribution to renal replacement therapy. I used one of those shunts, as I've mentioned, and whether I could have had a transplant without it or not is probably a question that cannot be answered.
I don't think HLA match is quite random enough. If you're a white European and you live in America, you will get a kidney off the list faster than minority members of your blood group (in general) because you are part of a majority, and a majority that generally speaking is more inclined to donate than the various minorities. I think within subsets, the list is by chance, and it is as fair as possible for the most part, though I think we need to take age into account. To me, factors like age don't define a person. It is not like saying 'we reject you because you are not college educated' or 'we reject you because you are female'. All of us go through our chronological ages at the same rate. I am not explaining this well, but I think most people will get what I am trying to say.
I rang up my father this morning, because this was still bouncing about in my head - were the 60s really that backward? So I am asked him if he had heard of the Life or Death Committee before I became ill, and his answer was no. Then I asked him when he graduated law school, and he answered 1969. I told him about the Law Review article, but he had not read it, nor would I have expected him to. I asked him if he thought people in the 1960s would have found this shocking, and he said absolutely, yes, and he used the word 'barbaric' and then said that this was what led to Medicare for all renal patients. I sent him a copy of the Life article since he said he had never read it. I don't know that he will read it, but if he does, I would be interested to see if he is able to put himself back in that time period. He did concede that he felt they were in a terrible position because of how new and expensive this treatment was.
I don't know if you are onto something with Scribner's thought process. I suspect that the same thing might have been accomplished by drawing lots, though. Ask people who are randomly declined to give a final interview, let them in on the process to at least give their death some meaning rather than go to their graves with the knowledge that they were judged unworthy.
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I don't think the work of the committee created collateral damage unless you are saying there was some path that could have led to a meaningfully different result. I don't think there was such a path.
If Scribner had instead used some sort of random strategy that you would, today, approve of, it could have produced the EXACT same result - unlikely but possible. So it isn't the results that repulse you, rather it is the process that led to the results.
What I'm saying is that by not doing society's dirty work Scribner left society to figure it out and what was learned is that it can't be done. I think you are taking the position that people should have know it couldn't be done and refused to do it but I don't think it is reasonable, in the age of medical miracles and space travel and a limitless future (the 1962 Seattle Worlds Fair - the Century 21 Exposition (http://en.wikipedia.org/wiki/Century_21_Exposition) - is the context that this happening) to expect people to widely recognized the limits of reason and human judgement.
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I don't think the work of the committee created collateral damage unless you are saying there was some path that could have led to a meaningfully different result. I don't think there was such a path.
I think I understand what you are saying here - if the end result, people dying and getting Medicare after 10 years - was the same, then it is not collateral damage, just something inevitable.
If Scribner had instead used some sort of random strategy that you would, today, approve of, it could have produced the EXACT same result - unlikely but possible. So it isn't the results that repulse you, rather it is the process that led to the results.
Of course people dying prematurely and in pain is upsetting no matter what the route, but this particular process adds extra insult to the dying, in my opinion. I am just trying to put myself in their position, if I had to die for want of a scarce resource, would I prefer to know that a committee put particular thought toward whether I should be saved, or would I rather hear that it was just down to chance. I think I would prefer the latter, but who knows, maybe they are both so bad that it would have made no difference to me. I wonder if ahamner could comment on if it would have made any difference to him? Obviously, I am glad that Medicare for all in renal failure came to pass. I wonder what it will take for similar healthcare to be opened up to all who could be helped or saved through treatment?
What I'm saying is that by not doing society's dirty work Scribner left society to figure it out and what was learned is that it can't be done. I think you are taking the position that people should have know it couldn't be done and refused to do it but I don't think it is reasonable, in the age of medical miracles and space travel and a limitless future (the 1962 Seattle Worlds Fair - the Century 21 Exposition (http://en.wikipedia.org/wiki/Century_21_Exposition) - is the context that this happening) to expect people to widely recognized the limits of reason and human judgement.
Was Scribner trying to publicize this widely? Because it rather reminds me of Dr. Strangelove's Doomsday machine, where "the whole point is lost if you fail to tell the world". It seems you are saying that he set this up to demonstrate to everyone how horrific it would be to deny treatment to anyone, but he did not come out and say this, he just orchestrated the process and waited for the collective penny to drop. I don't know enough about Scribner to say what lengths he went to to advocate for the dying. Did he testify before Congress? The feel I have always got from the committees were that they were secretive and did not want this process to be under display. It is astonishing to me that the doctors managed to pick 5 laypeople who all consented to this from the start. There is a psychology to groups that I was trying to get at in one of my earlier posts - the fact that they were not discussing this with each other, challenging each other with their doubts and guilt, was another of their most unfortunate decisions. I am sure you know the story (some say legend) of Kitty Genovese? Sometimes it takes that one person to be the first, and if no one takes the risk to be that person, the inaction feeds on itself within that closed system.
I had heard that this all ended in the late 60s with the advent of home dialysis, but then I thought that Father Darrah had said that he was on the committee until 1970. What was the committee doing all of those extra years?
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I think the committee had in mind that the public interest was measured in dollars - taxes paid, public support not used. In the 1962 to 1966 period dialysis was primarily available to people who could personally afford it and to heads of household. I think this is true across the country but at least in Seattle that outcome was in part due to the money to treat people coming through vocational sources. The rationale for many of the early funders was around work, dialysis was meant to be a way to get people back to work and paying taxes.
RE Scribner He established an outpatient kidney center, basically inventing outpatient dialysis. While the Scribner shunt is not much used any more his other invention - outpatient dialysis - dominates the provision of dialysis, in the US and across much of the world, for better or worse. That move out of the hospital was a tactic to stretch resources, finding ways to use available resources to treat more people.
In Seattle you can go back through newspaper archives to read about the early years of the kidney center and various deadlines when money would run out and machines would have to be shut down. Very emotional pleas for funding. Individuals were often the focus of fundraising so you can read many articles about bake sales and clam bakes to raise money. And just as today fundraising success was fickle and rarely fair.
The friction in the nephrology community was to my understanding between Seattle and Boston. Seattle took the position that dialysis was a viable treatment and could sustain people indefinitely thus it could be used by a wide range of people. Boston took the view that dialysis was an extraordinary treatment and was at best a bridge to a transplant thus it should be used in limited situations. This dissonance among doctors slowed the wider use of dialysis, but Scribner was the one saying people were needlessly dying.
EDITED TO ADD: I think the committee outlived its use but there was a case that involved the committee through the late '60s. I came across it reading newspaper archives, it gained quite a bit of notoriety in the press and I think in the nascent nephrology community.
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The modern medical ethicists are still fixated on money in the QALY per year dollar amount. Berwick takes a slightly different tact putting the QALY per year dollar amount in terms of age of beneficiaries to give the most benefit to the young and the least to the elderly who have already lived the majority of their life.
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With the government going to hell in a hand basket, do not be surprised if these committees come back. Medicare is going to realize it cannot cope with ALL of the new dialysis patients coming on board as the population ages.
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Medicare is going to realize it cannot cope with ALL of the new dialysis patients coming on board as the population ages.
I don't think that will happen.
Dialysis has an immensely adverse effect on the remaining years life a patient has. For example, a man of my age (70) can expect a further 4 years, whereas the average man of 70 can expect another 14.
An aging population may increase the number of dialysis patients, but the increasing average age will be self-limiting. The average patient will not live so long as they do now because the average age is greater and there are more oldies to die earlier.
You can't expect the number of transplants to increase either since the supply is limited and, quite properly, only the younger patients will benefit from transplants. Tough on the old & wrinklies, but that's life — well, what's left of it.
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I don't think an ageing population is going to be the only thing that increases the dialysis population. I suspect that more younger people are generally less fit with obesity, diabetes and hypertension running rampant, and these maladies cause renal disease and failure. Couple that with the fact that getting preventative care is just too expensive for the average American, and health issues that could be treated if caught early are NOT caught early, the end result being more and more people on dialysis. Can't say what the situation is in other countries, though.
I'd love to know if the incidence of non-diabetic renal disease is increasing. Like my fsgs; I have absolutely no idea why I have this disease. No one in my family has it, and I have to wonder if a good portion of idiopathic renal disease has been triggered by environmental factors. We are so much more apt to be subjected to all sorts of environmental pollutants in our water and in our food.
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Thanks for the information, Bill. This provides a lot more context, and I can see that Scribner at least was doing the absolute best he could. After reading your posts, I can see that it was an important and wise decision to "refuse to do society's dirty work" as you say. I think the approach should have been more direct, and I still think that the panel should never have rationalized themselves into taking on this task. Really, seeing the thought process is what really sickens me. As a natural born atheist and a female well under the age of 18 at the time of my first dialysis, they have made it crystal clear that my life represents no value to them. Funny, as I am quite sure I have sent more than a couple doctors' children to university through my illness alone.
If it was just a matter of being able to buy one's way out, my family would have been in a position to to do just that, and let's assume that they would have. Also, the promise to not sue the hospital that played a large part in destroying my kidneys would probably have been all the contribution that was needed. I hate the idea of people dying for lack of money - always have and always will. Just as I detest the idea that someone would be chosen for slaughter over their religious beliefs - was the labor leader that blind to the history that he was invoking with that creepy statement? It would appear so.
I don't think an ageing population is going to be the only thing that increases the dialysis population. I suspect that more younger people are generally less fit with obesity, diabetes and hypertension running rampant, and these maladies cause renal disease and failure.
This is largely a myth, the rise of all three of those conditions. The criteria to diagnose each of them has been altered, lowering the standards and pathologising millions overnight. Obesity does not cause renal failure! Diseases like type II diabetes, a common symptom of which is weight gain, are the culprits. If a diabetic alters his/her diet to to a low-glycemic regimen, then the result of this is often weight loss, but weight loss is not the cause of their health improving. These are the fictions that send me insane every single time I hear them parroted back. It is one of the most classic 'blame-the-patient' stances that doctors take because it suggests that a large portion of our population could have prevented their own illness. Maybe in the case of diabetes and high blood pressure there is some truth to that for some fraction of people with those conditions, but obesity, the evidence is not there.
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I don't think an ageing population is going to be the only thing that increases the dialysis population. I suspect that more younger people are generally less fit with obesity, diabetes and hypertension running rampant, and these maladies cause renal disease and failure.
This is largely a myth, the rise of all three of those conditions. The criteria to diagnose each of them has been altered, lowering the standards and pathologising millions overnight. Obesity does not cause renal failure! Diseases like type II diabetes, a common symptom of which is weight gain, are the culprits. If a diabetic alters his/her diet to to a low-glycemic regimen, then the result of this is often weight loss, but weight loss is not the cause of their health improving. These are the fictions that send me insane every single time I hear them parroted back. It is one of the most classic 'blame-the-patient' stances that doctors take because it suggests that a large portion of our population could have prevented their own illness. Maybe in the case of diabetes and high blood pressure there is some truth to that for some fraction of people with those conditions, but obesity, the evidence is not there.
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Actually Moosemom got it right, obesity, diabetes and HTN are mountain a catastrophic epidemic of kidney disease in the US. The sad fact is that about 50% of patients on dialysis did not need to ever go on dialysis. Americans are less healthy than prior generations. I just saw a reality show on whether the teenagers were as fit as a senior citizen and the answer in is no they are not. Kids today in general get very little exercise compared to prior generations. We spent all of our time outdoors summer and winter.
Obesity is a direct risk of renal disease as several articles have shown:
http://www.sciencedaily.com/releases/2006/05/060513122553.htm
Sadly, it is true that some folks are to blame for lung cancer from smoking, blindness from not taking care of their diabetes, and heart attacks and strokes from poor blood pressure control. Renal disease is one of many "end organ damage" entities from these three factors alone. That is why there is now so much attention to preventive medicine on bringing our increasing numbers of dialysis patients under control.
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Here's a bit more info on the study cited by Hemodoc.
http://www.ncbi.nlm.nih.gov/pubmed/16641153
And then there is this from 2004. It's much more technical, but if you can wade through it, it is interesting. http://jasn.asnjournals.org/content/15/11/2768.full
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I haven't looked at the link, but one study does not a risk make. I really do not want to go off on this tangent unless someone wants to start a new thread on it. Then I could debate it all day (not really, but you know what I mean). Correlation does not equal causation!
If you want some excellent reading on this issue try Gina Kolata's Rethinking Thin or The Obesity Myth by Paul Campos. Both are interesting, Rethinking Thin comes from the more science-oriented of the two, as she is an NYT science writer. Campos, as he hastens to point out, is an attorney, but one who looked at just how poorly obesity studies have been carried out and interpreted. Startling how slow the field of medicine is to acknowledge that they may be operating under untested assumptions. I know this particular idea - that obesity is to blame for all manner of horrible ways to die - is near and dear to the hearts of many medical professionals and laypeople alike, so I knew I would not sway anyone, but I don't care. I have researched this off and on ever since I picked up a copy of Marilyn Wan's Fat!So? in San Francisco. It's been one revelation after the next since then.
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Thanks for the information, Bill. This provides a lot more context, and I can see that Scribner at least was doing the absolute best he could. After reading your posts, I can see that it was an important and wise decision to "refuse to do society's dirty work" as you say. I think the approach should have been more direct, and I still think that the panel should never have rationalized themselves into taking on this task. Really, seeing the thought process is what really sickens me. As a natural born atheist and a female well under the age of 18 at the time of my first dialysis, they have made it crystal clear that my life represents no value to them. Funny, as I am quite sure I have sent more than a couple doctors' children to university through my illness alone.
If it was just a matter of being able to buy one's way out, my family would have been in a position to to do just that, and let's assume that they would have. Also, the promise to not sue the hospital that played a large part in destroying my kidneys would probably have been all the contribution that was needed. I hate the idea of people dying for lack of money - always have and always will. Just as I detest the idea that someone would be chosen for slaughter over their religious beliefs - was the labor leader that blind to the history that he was invoking with that creepy statement? It would appear so.
One other thing to keep in mind are the actual numbers. Throughout 1962 and 1963, 10 people (seven men, 3 women) were on dialysis at the kidney center. Ten. And the experience was, people didn't die. All five of the first guys were still alive three years later (they mostly still dialyzed at the UW through Scribner's research program (that also dialyzed Eady)) so the assumption was you put someone on and then had to keep them on no matter what happened. To my knowledge no one was ever taken off dialysis once they were given a spot but reading the newspaper articles when funding was running out (May 1963 for instance - I have a PDF of various clippings but it is 6+MB, I'll email it to anyone who asks) makes it clear that people thought shutting the center down was a possibility.
So in your calculus of selecting people to live (I think you give too little credit to the distinction of selecting people to die v selecting people to live) you'd also want to select people who could live the longest, people who could make the most use of the opportunity. Robin Eady is still alive. He had a complete career as an important doctor for kids who suffer from a debilitating and rare skin disease. Many Mom's around the world think of Robin as a living angel and have no idea about his CKD history.
Who knows how it is, of all the people in the world who needed a spot, Robin got a spot but I think in retrospect, I have to say the spot went to the right person. In his case money certainly played a role, in that the family were people of means but that private funding, foreshadowing the future, is the fuel that allowed Scribner's program to serve people who didn't have private funding, and to continue his research. Scribner trained a guy to dialyze in India (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/first-home-hemodialysis-patient-trained-in-seattle-went-home-to-india.html) in 1963; the reason they found out about the importance of water quality is because their patient in Sudan had issues every year when the Nile flooded. It was a crazy time. A time when some doctors thought chronic dialysis was impracticable for all but sick Boeing engineers in Seattle and it was a time when people all around the world - those who were ill and doctors who looked after them - beat a path to Scribner's door to learn what they needed to know.
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So in your calculus of selecting people to live (I think you give too little credit to the distinction of selecting people to die v selecting people to live) you'd also want to select people who could live the longest, people who could make the most use of the opportunity. Robin Eady is still alive. He had a complete career as an important doctor for kids who suffer from a debilitating and rare skin disease. Many Mom's around the world think of Robin as a living angel and have no idea about his CKD history.
I am sure Robin Eady gave much back to the world, and continues to do so. But we cannot know what we would have seen from those who were not chosen, especially the children. Robin Eady sounds like a rare and wonderful person, and how amazing that he's still alive, and in looking him up, that he did not dialyse as a bridge to transplant, but rather was on hemo for 24 years. It was a great choice to save him, of course, but as they say 'winning the lottery does not mean that it was a good decision to buy a ticket'. I am interested to hear how you view the distinction of "selecting people to die vs selecting people to live" because I really don't see it. To me, ever the cynic I'll grant you, this is a semantics game to make the committee more palatable.
Assuming for a moment that I needed dialysis back in '76 in order to get the transplant, and that I had to go in front of a committee to get it, they would have met a child different in almost every conceivable way from the person I became. I was extremely angry. I was the very definition of non-compliant, (which I find to be an infantalizing and judgmental word to this day). My doctors were not Scribner, they were cold, distant egomaniacs and as a result, I refused to say a single word to any of them and would talk through my parents. "Tell him he's hurting me. Tell him to go away." Like that. I bit a nurse and never felt a moment's remorse. The nadir was probably during a rejection episode, no one had bothered to explain a thing to me and all I could think was that I was back in that House of Horrors, so I climbed up on a ledge and paced back and forth, letting them believe that I was going to jump, and I essentially shut the ward down. (It was chaos in there. They sent me home that day, which is exactly what I wanted and needed.) I am not a doctor and I never saved any lives and I don't think the word 'angel' would be at all appropriate, but does that mean that my life is worth less than Robin Eady's? I guess I am not utilitarian enough for this line of thinking. (And, yes, I can certainly see the argument that my life is worth demonstrably less, but I'd rather not dwell on this rather depressing line of thinking.)
I would love to see those articles. This is a fascinating time in history. I'll send you my email address via PM and if it's not too much trouble, send them on over. :thx;
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I would love to see those articles. This is a fascinating time in history.
I always forget about Google Docs ... here is a link
https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B_NJgQASZkKkNjBiMjdjZjEtM2JhOC00OGE2LThjM2MtNGVlOGM5MmUyMWEz&hl=en_US (https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B_NJgQASZkKkNjBiMjdjZjEtM2JhOC00OGE2LThjM2MtNGVlOGM5MmUyMWEz&hl=en_US)
EDITED TO ADD It probably makes the mot sense to start at the end of the document and read backwards to page 1. Page 10 and 6 go together, I'd read that article first - it features the photos of the 10 dialyzors, 2 women and 8 men (I misremembered 3 and 7) who were the kidney center's only patients in May 1963.
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I am sure Robin Eady gave much back to the world, and continues to do so. But we cannot know what we would have seen from those who were not chosen, especially the children. Robin Eady sounds like a rare and wonderful person, and how amazing that he's still alive, and in looking him up, that he did not dialyse as a bridge to transplant, but rather was on hemo for 24 years. It was a great choice to save him, of course, but as they say 'winning the lottery does not mean that it was a good decision to buy a ticket'. I am interested to hear how you view the distinction of "selecting people to die vs selecting people to live" because I really don't see it. To me, ever the cynic I'll grant you, this is a semantics game to make the committee more palatable.
Assuming for a moment that I needed dialysis back in '76 in order to get the transplant, and that I had to go in front of a committee to get it, they would have met a child different in almost every conceivable way from the person I became. I was extremely angry. I was the very definition of non-compliant, (which I find to be an infantalizing and judgmental word to this day). My doctors were not Scribner, they were cold, distant egomaniacs and as a result, I refused to say a single word to any of them and would talk through my parents. "Tell him he's hurting me. Tell him to go away." Like that. I bit a nurse and never felt a moment's remorse. The nadir was probably during a rejection episode, no one had bothered to explain a thing to me and all I could think was that I was back in that House of Horrors, so I climbed up on a ledge and paced back and forth, letting them believe that I was going to jump, and I essentially shut the ward down. (It was chaos in there. They sent me home that day, which is exactly what I wanted and needed.) I am not a doctor and I never saved any lives and I don't think the word 'angel' would be at all appropriate, but does that mean that my life is worth less than Robin Eady's? I guess I am not utilitarian enough for this line of thinking. (And, yes, I can certainly see the argument that my life is worth demonstrably less, but I'd rather not dwell on this rather depressing line of thinking.)
I would love to see those articles. This is a fascinating time in history. I'll send you my email address via PM and if it's not too much trouble, send them on over. :thx;
The default in my mind is what would happen with no action. If you need a person to go into an nuclear reactor to fix some problem and there is very little chance of surviving (the Spock scenario) and you have a group of volunteers but you only need one then you're choosing who is going to die. Without any action all the volunteers would live (unless they couldn't get away from the nuclear device) so the action is choosing who will have a different fate, who will die.
The Seattle admission committee faced a group of people who all were going to die. In the absence of action the result was 100% mortality so in this case the choosing who will have a different fate meant picking who would live.
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Children weren't considered because they thought the treatment was too arduous for a anyone but an adult. And reading the accounts I think they were probably right.
I don't think the admission committee faced a situation analogous to the Titanic: Too many people, too few places in the raft; woman and children first.
I'd say the admission committee's choice was more like picking who, from among the qualified volunteers, was going to go out and slay the dragon. At this time people were not sure that dialysis was a good idea and these brave dialyzors went forward to tell us what it was like, was it worth it? - it was their experience that gave people the confidence to make routine dialysis a reality.
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These committees operated throughout the country, in some areas right into the '70s. The Seattle committee is the only one I hear about but I am fascinated by the situation and reading about what actually happened. Someone (or ones) needs to collect the memories of people who interacted with other committees - anywhere there was dialysis in 1964 to 1968 must have had a committee. I'm really hoping to find the minutes of the Seattle committee but someone else needs to track down the history of other selection committees.
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I'm not sure what my point was about Robin other than just how amazing and random it all was/is ... his Mom read the Life article in a beauty salon in Paris. A few months later Scribner carried Robin off the plane after he arrived in Seattle too uremic to walk.
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I am sure Robin Eady gave much back to the world, and continues to do so. But we cannot know what we would have seen from those who were not chosen, especially the children. Robin Eady sounds like a rare and wonderful person, and how amazing that he's still alive, and in looking him up, that he did not dialyse as a bridge to transplant, but rather was on hemo for 24 years. It was a great choice to save him, of course, but as they say 'winning the lottery does not mean that it was a good decision to buy a ticket'. I am interested to hear how you view the distinction of "selecting people to die vs selecting people to live" because I really don't see it. To me, ever the cynic I'll grant you, this is a semantics game to make the committee more palatable.
Assuming for a moment that I needed dialysis back in '76 in order to get the transplant, and that I had to go in front of a committee to get it, they would have met a child different in almost every conceivable way from the person I became. I was extremely angry. I was the very definition of non-compliant, (which I find to be an infantalizing and judgmental word to this day). My doctors were not Scribner, they were cold, distant egomaniacs and as a result, I refused to say a single word to any of them and would talk through my parents. "Tell him he's hurting me. Tell him to go away." Like that. I bit a nurse and never felt a moment's remorse. The nadir was probably during a rejection episode, no one had bothered to explain a thing to me and all I could think was that I was back in that House of Horrors, so I climbed up on a ledge and paced back and forth, letting them believe that I was going to jump, and I essentially shut the ward down. (It was chaos in there. They sent me home that day, which is exactly what I wanted and needed.) I am not a doctor and I never saved any lives and I don't think the word 'angel' would be at all appropriate, but does that mean that my life is worth less than Robin Eady's? I guess I am not utilitarian enough for this line of thinking. (And, yes, I can certainly see the argument that my life is worth demonstrably less, but I'd rather not dwell on this rather depressing line of thinking.)
I would love to see those articles. This is a fascinating time in history. I'll send you my email address via PM and if it's not too much trouble, send them on over. :thx;
The default in my mind is what would happen with no action. If you need a person to go into an nuclear reactor to fix some problem and there is very little chance of surviving (the Spock scenario) and you have a group of volunteers but you only need one then you're choosing who is going to die. Without any action all the volunteers would live (unless they couldn't get away from the nuclear device) so the action is choosing who will have a different fate, who will die.
The Seattle admission committee faced a group of people who all were going to die. In the absence of action the result was 100% mortality so in this case the choosing who will have a different fate meant picking who would live.
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Children weren't considered because they thought the treatment was too arduous for a anyone but an adult. And reading the accounts I think they were probably right.
I don't think the admission committee faced a situation analogous to the Titanic: Too many people, too few places in the raft; woman and children first.
I'd say the admission committee's choice was more like picking who, from among the qualified volunteers, was going to go out and slay the dragon. At this time people were not sure that dialysis was a good idea and these brave dialyzors went forward to tell us what it was like, was it worth it? - it was their experience that gave people the confidence to make routine dialysis a reality.
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These committees operated throughout the country, in some areas right into the '70s. The Seattle committee is the only one I hear about but I am fascinated by the situation and reading about what actually happened. Someone (or ones) needs to collect the memories of people who interacted with other committees - anywhere there was dialysis in 1964 to 1968 must have had a committee. I'm really hoping to find the minutes of the Seattle committee but someone else needs to track down the history of other selection committees.
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I'm not sure what my point was about Robin other than just how amazing and random it all was/is ... his Mom read the Life article in a beauty salon in Paris. A few months later Scribner carried Robin off the plane after he arrived in Seattle too uremic to walk.
Great explanation Bill, you are exactly right, they chose those that would live. I had never considered the best survival and contribution to society to use as an advertisement in a sense of the power of dialysis. When you look at many of the people from this committee who are still alive like Robin and Nancy Spaeth for instance, they truly have lived as a testimony of the power of dialysis. (Hello Nancy if you are out there) Scribner was right and dialysis is still looked upon askance by the medical community as well as by CMS and others. Yet these brave souls that went through many painful procedures which in reality were open experimentation of this new modality and a surprising number are still alive today. Living life well I am sure was one of the goals of the committee. Sadly, they couldn't treat them all like today, but these dialysis pioneers did live well enough to convince congress to open the doors to all in 1973.
Great point Bill, hadn't thought if it in those terms.
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I had never considered the best survival and contribution to society to use as an advertisement in a sense of the power of dialysis.
But in highlighting this, it makes it sound like we should only treat the people who are then going to pay us back in some way. This goes right back to ranking people according to their social value. The end does not justify the means, no, not even in the case of Robin Eady. I also do not want dialysis, or rather money spent on dialysis, to be seen as a waste because a person only lasts a few years. Only the individuals can really tell us whether dialysis is worth it to them, and it is not for us to tell them whether they are worth dialysis.
I can see why they did not try this on children initially. Today, that is an ethical quagmire and as a 'vulnerable class' it takes an intense vetting process to even pass an IRB. However, once they saw how reportedly 'painless' it was, I am not sure why they did not go forward. When did the first child receive dialysis (approximately)? Late 60s? I can tell you in 1976, those kids were not developing normally, but they were alive. There was the 3-year-old who looked like a 6-month-old infant, and there was the little Texan who was 3 years older than I, and I was significantly taller than he. 'Livinglife well' is not for a committee to define, and besides, we know that dialysis came down essentially to money even then. They wanted people who would work and pay the world back. This is a miserable approach to the selection process.
Brave souls? Their alternative was death. They wanted to live and this was their only chance, so I don't see that as bravery anymore than I see myself as brave for undergoing a modern clinical trial. I think the real brave souls are the ones who went through the committee, put themselves forward to be judged and then heard that they did not meet society's definition of worthwhile.
I get your point about picking people to live, Bill, I just don't see it as an important distinction. They all wanted to live, or why would they have put themselves through that ugly process? Again, we will never know what remarkable people we've missed out on. No one would have ever guessed that I would become such a long lasting transplant recipient, and doctors have a tendency to rewrite my history to fit the outcome. It is not in my interest to correct them, so I don't. I had a GP with whom I could be honest, and I really treasured those times I spent with him, talking about the roles of luck and chance in medical outcomes.
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Once again, Bill has placed the context of the dialysis debate in the 1960's, many opposed this new, expensive technology so the aspect of selecting those that would represent the new technology well is evident in all of the lobbying done before congress approved the expansion of Medicare to include dialysis patients in 1973. If Scribner had produced the very disabled group of patients that we have today, no one would have ever approved the 1973 dialysis provision. As it is, as soon as it was approved, the attacks against it began in earnest with several congressional hearings immediately after the 1973 approval.
While we look back from our current perspective where social worth and other such factors used by the committee are easy to criticize, I would be interested in how people would have chosen the few that qualified if they sat on the committee themselves. How would you approach this resource allocation. I suspect that any system proposed will suffer from disparities as well.
I would note as well that Scribner often went outside of the committee to rescue people that the committee did not pick up. It was not the only actor in this drama.
We all agree that the situation was not one any of us would ever want to be part of, but the ethical obligations that the new technology brought to society is one that we are still struggling with today.
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A common problem when studying history is the tendency to project our own knowledge, culture and morals upon the group and/or time period that is being studied. It takes self-discipline and introspection to see history from its OWN perspective--one in which the people of that day had to live without the benefit of knowing the future as we do (their future that is). It's easy to criticize after one knows the final outcome, but people have to make decisions in the present.
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While we look back from our current perspective where social worth and other such factors used by the committee are easy to criticize, I would be interested in how people would have chosen the few that qualified if they sat on the committee themselves. How would you approach this resource allocation.
I probably wrote this about 5 times in the above discussion, but again, screen based on strictly medical criteria, then draw lots.
My take on this mirrors Sanders and Dukeminier, who were writing in the midst of that era, almost exactly.
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This letter is from Scribner to the periodical Seminars in Dialysis in, I think, December 2000. I've been looking for the article that Scribner is responding to but have come up empty - I think it was Rutecki GW and Kilner JF. “Dialysis as a resource allocation paradigm: Confronting tragic choices once again?” Seminars in Dialysis 1999 but haven't been able to get a look yet so I held off posting Scribner's correspondence.
But Scribner does clarify a few things - he seems to be agreeing with cariad :-) As Peter says it's a point worth remembering that Scribner was running his own research program in parallel - it predated the establishment of the kidney center - and he did not have a committee telling him who to dialyze and who to refer to the kidney center.
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And I have to say I think the early dialyzors were brave. There is natural death, the known in 1962 vs. the unknown, dying after letting medical researchers have their way with you for a couple of months.
Early on Seattle's success using the therapy long term was unique in the world, many programs had trouble sustaining people with dialysis. I've heard people who were there say that it was because Seattle didn't have a transplant program until the '70s - the: working without a net concentrates the mind theory. I'd say it probably had more to do with the size of the Seattle program - just as today, number of procedures preformed is a telling metric in medicine.
I also know that Seattle, to this day, has remarkably solute free drinking water. So back then, before people understood the importance of water/dialysate quality, Seattle's natural municipal water supported good clinical outcomes.
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But Scribner does clarify a few things - he seems to be agreeing with cariad :-)
Well, that was quite literally the last thing I expected to read in this discussion. :o :)
That was a great letter, and it certainly does clarify a few things. However, I would point out, as a participant in quite a complex and groundbreaking clinical trial myself, long term survival probably correlates fairly well with how much attention these early patients received toward their care. I came through my second transplant (even though it was a positively grueling process) in large part, I believe, because the surgeon concentrates the bulk of his attentions and energies toward these trial patients. We all have his mobile number, personal email, any little problem I have, he will be on it any hour of any day. I went down to Chicago in the early days after the transplant because I called them with a bit of nausea, and they had the parade of experts come see me over the THREE DAYS!!! that I was in hospital. As was pointed out, if something goes wrong with these early trials, the whole program may be shut down, and chimerism with induced tolerance is currently the closest thing we have to growing a new kidney for someone.
There is no way that my surgeon nor any other could possibly translate that level of care to a large population of patients. So, that is part of the problem why I have enormous trouble with the brave descriptor. People pay a fortune to get the level of care I've received for free. I suspect much of Scribner's success came down to being able to give his best to every single patient.
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:bump; I had been looking for this Life Magazine article from 1962. Glad I posted it because it's tough to find via google.