February 06, 2016 Farwa Feroze
The Quandary of Organ Distribution
The doctors felt they had no choice; they could not give this five-month-old baby a new heart, thus decreasing his life expectancy to only a few more months. This special baby, Maverick, was diagnosed with a congenital heart defect that could not be improved even after two failed surgeries. Maverick and millions of other people with disabilities do not qualify for organ transplants for different reasons. Medical care providers believed Maverick’s heart transplant would “put him at risk for tumors and infections,” but his mother did her own research and partnered with scientists to prove this rationale wrong (1). She succeeded, but Maverick was still denied the transplant because of a new justification fabricated by his healthcare providers. Unfortunately, this deems true for most people burdened with disabilities, but is this any reason to deny them a vital organ? Why is the healthcare industry dehumanizing people with disabilities and preventing them from attaining a higher quality of life? While the answer should be simple, medical care providers are forced to make difficult choices of their own, taking into consideration the scarce number of organs available. Furthermore, to what extent does discrimination and inequity in the organ transplant system affect people with disabilities? People with disabilities, such as genetic heart conditions and Down Syndrome, often face explicit discrimination by medical professionals who believe any viable organs should go to patients who will live the longest, highest quality lives and make the greatest contributions to society.
We often do not think twice about denying a person with disabilities an opportunity to live a better quality life, but medical care providers must consider the public good and structure of the organ transplant system. There is very high demand for organs, and much fewer organ donors in comparison. As a result, the supply of organs is low, while the demand is exceedingly high. The U.S. Department of Health & Human Services states very clearly on their organ donation website that 121, 654 people are waiting for an organ and 22 people will die each day waiting (5). Not everyone who needs a vital organ will receive one especially if they are lower on the organ donor list, simply because there are not enough organs. The National Organ Transplant Act of 1984 was developed to improve the “organ matching and placement process” because there was a startling shortage of organs and we needed a better system of distributing them (4). As a result, doctors had to make a difficult decision: who gets the organs and who does not. So, how do you judge whether someone deserves to have the organ over another patient? How do you compare the quality of one life to another, especially if someone was unfairly born with a disability? Doctors have decided that organs should go to patients who will live the longest, highest quality lives and contribute to society. However, these decisions are not abrupt; careful considerations and justifications are found for each case. When a doctor refers a patient to a “transplantation surgery program,” there is an initial evaluation by a group of healthcare providers that carefully reviews the patient’s history and conditions. Then, doctors conduct several tests to decide if a transplant is the best option and then patients either have relatives donate to them (usually if they are kidneys), or they are placed on the transplant waiting list (6). A patient may have to wait for a heart or lung for up to four months, and up to five years for a kidney (7). For this reason, doctors have to make certain assumptions for specific patients, such as predicting whether a transplant may cause a more serious medical condition, which may result in the body rejecting the organ or having a reaction to one of the post-surgery medications (1). Paul Corby, a man diagnosed with autism, was denied a heart transplant simply because doctors predicted he would not be able to “maintain the complicated drug regimen” after his surgery (1). They also believed he would not be able to communicate if he was not feeling well after the surgery, so he would not be an ideal candidate. Doctors take into consideration all these reasons when determining who deserves the organ and who deserves to live.
The consequences of the organ transplant system is that doctors have to make a decision by predicting who will benefit most from the organ, which unfortunately may lead to a biased, discriminating decision due to the subjective nature of the situation. Corby was denied a transplant because doctors predicted he could not handle the drug regimen after the surgery, but he was a very high-functioning individual. His mother and everyone in his family takes care of him, so these medical justifications would actually be no problem to him. But, the doctors did not change their mind. Unfortunately, the only logical reason for not having the transplant was that Corby would obviously still grow up with his disability, so it would be “wasting” a heart (1). This is a clear case of discrimination as there is no medical basis for denying the organ transplant. Discrimination was even more apparent in the letter Maverick’s mom received from the Cleveland Clinic, which stated, “We must do our best to assure this precious gift has the best chance of success in bringing a full life to its recipient" (1). In other words, Maverick was denied the heart based on his disability and resulting inability to live a “full” life.
The problem is that doctors have to make subjective predictions, regarding whether a person will use the organ to its “full potential;” otherwise, the organ is wasted. This is an unfavorable outcome, so if doctors find any reason to deny a transplant, they will act on it since these organs are a scarce luxury. The consequence then is that we do not know for sure if people will benefit even a little from the organ because it is too risky to even give them a chance. However, society is trying to take these ethical quandaries into consideration. The Americans with Disabilities Act of 1990 states that an organization cannot discriminate based on disabilities (2). Sandra Jensen was the first American with Down Syndrome to receive a heart transplant in 1996. She won the case because she argued for hospitals to look at her as a high-functioning independent individual, not someone diagnosed with Down Syndrome. Her case proved that hospitals were using “blanket categories” or excuses to deny the treatments, but their underlying decision took into account the person’s disabilities (3). Furthermore, there are several possible solutions to resolve the issue of discrimination and subjectivity in the organ transplant system. Primarily, we need to encourage more people to donate organs as this would lead to an increased supply, allowing more people with disabilities to receive transplants. Another solution to reduce discrimination against people with disabilities is to develop a more holistic system of assigning organs, which would include an individual’s characteristics as a whole and not just their disability. We need to continue making improvements to the organ transplant system by taking into account the ethical considerations and human rights of all individuals, as well as economic factors, such as supply and demand.
References:
1. http://www.cnn.com/2013/11/30/health/disabled-transplants/
2. http://www.dol.gov/general/topic/disability/ada
3. https://web.stanford.edu/~mvr2j/sfsu09/extra/SandraJensen.pdf
4. https://optn.transplant.hrsa.gov/governance/about-the-optn/history-nota/
5. http://organdonor.gov/index.html
6. http://www.dartmouth-hitchcock.org/transplantation/typicalpatientjourney_pancreas.html
7. http://www.donors1.org/patient/waitinglist/