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Author Topic: Dialysis: "They Decide Who Lives, Who Dies"  (Read 29818 times)
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« on: July 25, 2011, 11:18:50 PM »

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.”
   
...........

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
« Last Edit: July 26, 2011, 12:18:57 AM by okarol » Logged


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« Reply #1 on: July 25, 2011, 11:38:48 PM »

That's the most frighteningly fascinating thing I've read in a long time.  Thank God for progress.
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« Reply #2 on: July 26, 2011, 09:09:56 AM »

thanks okarol for sharing. it's a long read but finished it in one sitting. very interesting.
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« Reply #3 on: July 26, 2011, 10:23:02 AM »

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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« Reply #4 on: July 26, 2011, 03:04:51 PM »

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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« Reply #5 on: July 26, 2011, 06:00:42 PM »

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
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« Reply #6 on: July 26, 2011, 07:17:57 PM »

i think you call these people the "GOD SQUAD"
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« Reply #7 on: July 26, 2011, 08:10:22 PM »

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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« Reply #8 on: July 26, 2011, 08:12:57 PM »

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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« Reply #9 on: July 26, 2011, 08:38:56 PM »

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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« Reply #10 on: July 26, 2011, 10:47:59 PM »

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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« Reply #11 on: July 27, 2011, 09:24:23 PM »

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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« Reply #12 on: July 28, 2011, 09:12:36 AM »

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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« Reply #13 on: July 28, 2011, 12:49:34 PM »

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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« Reply #14 on: July 28, 2011, 01:14:18 PM »

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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« Reply #15 on: July 28, 2011, 02:04:48 PM »

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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« Reply #16 on: July 28, 2011, 02:11:03 PM »

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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« Reply #17 on: July 28, 2011, 02:15:20 PM »

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):

Quote
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:

Quote
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:

Quote
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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« Reply #18 on: July 28, 2011, 02:59:10 PM »

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):

Quote
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:

Quote
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:

Quote
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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« Reply #19 on: July 28, 2011, 04:28:58 PM »


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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« Reply #20 on: July 28, 2011, 04:29:55 PM »

Oh, and Bill - thank you for the pictures and the articles!  :thx;
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8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
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10.21.10: Began creating buttonholes with 15ga needles
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Good health is just the slowest possible rate at which you can die.

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« Reply #21 on: July 28, 2011, 05:00:05 PM »


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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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #22 on: July 28, 2011, 06:38:08 PM »


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.
« Last Edit: July 28, 2011, 06:45:59 PM by cariad » Logged

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« Reply #23 on: July 28, 2011, 07:02:00 PM »

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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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
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« Reply #24 on: July 29, 2011, 12:00:55 AM »

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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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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