Draft:God Committees

• Comment: It looks like a reviewer formerly declined this submission for the same reasons as I have chosen to and no changes were made before resubmitting. IntentionallyDense (talk) 01:16, 3 September 2024 (UTC)

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In 1962, kidney dialysis began to be used to treat chronic kidney disease. However, equipment for long term dialysis was not widely available. In 1962 the first the first out-of-hospital dialysis center in the country was launched: Seattle Swedish Hospital's Artificial Kidney Center... The center needed to decide who would and wouldn’t receive this treatment. They created a panel to decide who would and wouldn’t receive treatment based on a measure of human worth (as opposed to medical need).

This panel became known as a God committee because of beliefs that these panels were deciding between who would live and who would die. Other kidney centers around the country established similar committees, which were used until 1972, when Medicare implemented universal coverage of dialysis for end stage kidney disease. These panels, and the problems with trying to measure social worth, have led to the development of modern bioethics.

The COVID-19 pandemic reignited discussion of how to decide who should receive access to medical care when supply is limited and demand is high. Although God committees no longer exist, they were used as an example of what not to do when selecting patients.

Background

The term “God committee” originally referred to a specific committee, based at Seattle Swedish Hospital's Artificial Kidney Center (now, Northwest Kidney Centers). This committee was needed because of the limited availability and high demand for dialysis machines. Dialysis machines are used to treat patients with End Stage Renal Failure, allowing machines to act as their kidney, filtering toxins out of their blood.

The concept of dialysis was invented in 1854, but it was not used for medicine until the 1900s. In 1943, Dr. Willem Kolff invented the first artificial kidney, but he had little success. He treated 16 patients with little progress, but he eventually treated a patient in a uremic coma, who regained consciousness and lived for 7 more years after the treatment.

Before the 1960s, kidney dialysis was not a long term treatment. Dialysis was a treatment for patients who had acute renal failure (sudden failure of kidneys, but not necessarily permanent). It was not a treatment for chronic kidney disease (a gradual loss of kidney function, eventually leading to permanent failure of the kidneys) because the methods that had been used quickly exhausted the veins that could be used for dialysis.

In 1960, a doctor at the University of Washington, Dr. Belding Scribner, created a solution that would allow kidney dialysis to be a more permanent treatment for kidney failure. This shunt, a “U-shaped arteriovenous tube” allowed doctors to repeatedly tap a single vein to dialyze the blood. Even though the shunt had the possibility to save many lives, availability of this new technology was limited. The kidney center had finite resources, so they could not treat everyone who wanted dialysis. The lack of space created a need for a process to decide who would and wouldn't receive this new treatment.

History

Seattle's Swedish Hospital

The original God committee at the Swedish Hospital in Seattle came out of a need to select which patients would receive the life-saving and rare kidney dialysis treatment, which was not yet widely produced. Dr. Belding Scribner originally proposed the idea, wanting to create a committee composed of people from different backgrounds who brought different perspectives to the decisions made.

The purpose of the God committee was to decide who would receive the extremely limited dialysis treatment, and who would be excluded. The original Seattle committee was comprised of seven members of the community most of whom weren't in the medical field: a lawyer, a minister, a housewife, a banker, a surgeon, a labor leader, and a state government official. The goal of this diversity was to offer the most amount of perspectives in the decision-making process, notably though, the committee was all White.

Patients were referred to the committee by a physician and then chosen based on their social standings, criminal history, and number of dependents. The committee was originally meant to remain anonymous and away from the public eye, but a 1962 article written by Shana Alexander brought scrutiny and unwanted attention to their operation. Her article They Decide Who Lives and Who Dies moved the committee into the national spotlight, both popularizing and demonizing the idea of a God committee.

Popularization

The original idea of a God committee didn't take hold instantly. By the 1980s, only around 1% of hospitals in America had a God committee. These communities were generally seen as successful by the doctors and nurses of the hospitals, but there are no records of how patients regarded them. Unlike the Northwest Hospital committee, some of these boards were purely advisory and didn't have the final decision when it came down to life-and-death choices.

Once a patient was referred to the kidney dialysis treatment by a physician, a separate medical committee narrowed down a pool of around 50 patients per slot to around 4 patients per slot. They determined eligibility based on age, preferring those 15-45, with no preexisting conditions, and without familial history of cancers and non-kidney-based diseases. They were then passed on to God committees, who used controversial and belief-based strategies to decide who would receive kidney dialysis, and this usually favored white people who lived traditional lives. Money was taken into consideration as well. A candidate would become instantly ineligible if they could not show that they had the $30,000 required on hand for the multi-year treatment. The major factor that would be considered in this process was social standing. The committee preferred married white people with children and a steady job.

Not all committees used the decision-making form that the Seattle Swedish Hospital did. In many early God committees, the board of citizens and the medical committee worked together to narrow down the candidates based on their social and financial situations, age, and number of dependents and then used a lottery to make the final choice. This was considered to be a fairer way of picking candidates to receive the lifesaving treatment, but its effect on the patient’s view of the situation was often negative.

The treatment was a risky investment, so when choosing the patients that would receive it, finances were taken into account heavily. The treatment cost around $300,000 in today’s money, and not everyone could front that much. The job of the God committees often came down to who would be most reliable to pay their medical bills.

God committees first fell out of fashion in 1972, when the US government made the decision to fund dialysis with Medicare, eliminating the need for choosing between patients. This decision was part of the ESRD program (End Stage Renal Disease) which allocated federal funds to fight kidney disease and to make treatment available to those on social security.

Ethics committees became a part of healthcare in response to the high-profile ethical cases of Nancy Cruzan and Karen Ann Quinlan and controversial discussions over the right to end the life of a patient. Ethics boards were established in 90% of American hospitals by the end of the century, and remain a key part of the decision-making process to the present day. These boards regulated the actions of medical professionals in cases that would have previously been determined by God committees.

The difference between these and the original committees comes down to the people in them. While Swedish Hospital’s board was made of ordinary citizens and community leaders, newer ethics boards are made of trained professionals who take an in-depth course on bioethics.

Something to take into consideration is the difference between medical ethics committees and God committees. God committees were composed of regular citizens like lawyers, clergymen, housewives, and businessmen, while members of ethics committees are trained professionals in the field of bioethical considerations.

Controversies

The original God committee, and other iterations quickly became controversial. Instead of making a medical decision about who most needed dialysis, they were making a decision about who was most worthy of dialysis.

Public concern about the God committee was documented in the media, including in an NBC documentary titled Who Shall Live. The Seattle committee faced questions that still do not have a definitive answer, more than half a century later. These questions and the God committee led to the creation of modern medical bioethics.

Potentially problematic criteria were used before patients were even referred to the committee for consideration. As explained above, to even be considered, patients needed to be referred by a physician. At the time, hospitals were still segregated, and there were very few Black doctors. This had implications for who could be recommended for consideration. Additionally, candidates were required to show ability to pay for three years of treatment upfront, at a cost of $30,000 (adjusted for inflation, approximately $300,000). This requirement effectively excluded poor people. Patients were also required not to have any underlying conditions and be between the ages of 15 and 45.

After meeting these criteria, patients were referred to a medical committee to have their psychological health evaluated. Patients who were poorer, without certain types of jobs, emotionally unstable, unmarried, or who did not attend church were often deemed mentally “flawed” and deemed incapable of handling long term dialysis. Ultimately, the treatment center and their medical committee did the vast majority of the evaluation, going from about 50 applicants per spot to about 4 that the God committee had to choose from.

The God committee set out to determine the patient's social worth. Their conversations suggest that what they determined to make someone worthy was a matter of personal opinion, considering factors that did not objectively determine someone’s worth (participation in church, number of children, educational background).

The factors that the God committee considered, and their process for selection resulted in them selecting patients with similar backgrounds as themselves. All members of the committee were White, and all but one were male. Most of the patients selected for treatment were White and male, even though chronic kidney disease has been found to affect women at a higher rate than men .

Critics of the God committee argued that deciding who would get treatment based on so-called “human worth” was an “affront to the idea of equality”. One article about the God committee criticized the system as unfair for patients who do not conform to middle-class America’s idea of worth, stating “The Pacific Northwest is no place for a Henry David Thoreau with bad kidneys”.

Other selection committees did not have individuals pick who would receive treatment by measuring social worth. For example, the Cleveland Clinic opted to use a first come, first served system and remove people from the program if they did not/could not cooperate. However, some other committees used factors considered non-medical traits, such as IQ scores, personality, or likelihood of a return to productivity. Bioethicists have said that a “first-come, first-served” system would have been more equitable and ethical

In present-day America, there are no committees that consider social worth when rationing care in the same way that the God committees did. Instead, systems have been developed to determine who receives limited resources using more objective measures

Present Day

In 1972, following public outcry and pressure from Physicians and supporters about the problem of ethics, and lack of funding for kidney dialysis, Congress established funding for Medicare relating kidney dialysis, rendering God committees unnecessary in hospitals.

Most hospitals proceeded to disband their God committees.. However, their impact continued to last, with many focusing on the display of ethics that they displayed, and using them as a cautionary tale, raising questions about choosing who is to live, and who is to die

Dr. Belding Scribner, a medicinal professor who worked for the University of Washington invented a way for kidney dialysis to be treated at home, leaning into the aspect of portability in the design, and by 1973, around 40% of patients were treated using the method of home dialysis.

While the God committee had been disbanded, similar committees have been established after, particularly focusing on pandemics that affect hospitals strongly, viewing it necessary to establish similar committees that would decide the allocation of certain resources to different people in different events.

The state of Washington, in 2010, held an eight-hour conference with volunteers, allowing anyone to participate in separate incomes, occupations, and races.. This conference was in light of if there was to be a sudden influenza outbreak. They spoke about where specific resources would be allocated. The goal of this conference was not only to allocate resources, but also to garner different points of view, and opinions based on their separate backgrounds. The connection between the Seattle Northwest Hospital, and their God committee, to their meeting in 2010 are speculated to have a connection with one another

While the people of Washington had a conference, they based their scenario on a situation that had the possibility of happening. That became a reality for the people of the world when the COVID-19 pandemic took place.

The COVID-19 pandemic raised similar questions to God committees, as hospitals had to establish committees of their own to decide where resources for treatment for the COVID-19 virus would be allocated, particularly focusing on patients who were hospitalized with COVID-19. This committee, with limited resources, had to decide who gets a ventilator, a breathing device to assist those hospitalized with trouble breathing, and who doesn't. Hospitals possessed limited ventilators, and the committee had to make judgments upon these people, raising familiar moral and ethical issues that still ring true from the day of the god committee.

A separation between the God committees and the decisions for the responsibility this committee possessed to decide who gets a ventilator and who doesn't, is the distinction between medical factors, and societal factors. The god committees of pre-1973 decided who would get treated based on factors that did not relate to their specific medical situation, and rather focused on specific factors that were based on societal and identity-based aspects when making a decision. In contrast, the modern COVID-19 board focused on medical factors, relating to specific focus points such as age, quality of life, and chance of survival, and made their decisions based on those points.

The way states handled the COVID-19 pandemic is different on a case-by-case basis and their relations to God committees differ as well. Each state uses selective methods that involve the use of medical factors and determinations using a specific matrix-like system to determine who is to be treated. Those who are in worse condition are normally favored over those in a higher and more favorable state. The COVID-19 pandemic raised questions about who should be determined as sicker, and the ethics behind making those decisions. They used other factors as well to make the determination.

Maryland uses a method involving points, which takes into account the age of the patient, and the preexisting conditions that the patient suffers from. The system favors those younger. This system raises more ethical and moral questions that greatly relate to the questions brought up by God committees in the past similarly faced, specifically the familiar thought of how you choose who lives and who dies. This method faced less backlash, however, as the factors considered are viewed as ethical to a higher extent than those of God committees.

Currently, over 90% of kidney dialysis takes place in a dialysis treatment center, with numerous methods being available for treatment, displaying a far cry from the former treatment methods and sentiment established by God committees, providing easier access to dialysis for those in need.