June 27, 2013 | Posted By Marleen Eijkholt, PhD

Sarah is a 10-y old girl with cystic fibrosis who, until recently, was in desperate need of a lung transplant. The doctors had estimated that Sarah would only have a couple more weeks to live without a transplant. Recent news headlines reported about her quest for this transplant, the success of the operation and, over the weekend, they issued the happy news about her regaining consciousness. Most of this news paralleled comments about the battle to revise the legislation, and underscored antagonism towards policy or policy makers (lawyers and ethicists), as if hindering good medicine. 

In this post I would like to comment on this antagonism, and propose that the policy makers did quite a good job in Sarah’s case. I propose that we need a symbiotic relation between medicine and policy makers. As a clinical ethicist with a background in law, I feel a lot of fear for ‘lawyers’, and prejudice against the idea that law, ethics and medicine can go together. In this post, I seek to outline how they can go together, and how Sarah’s case provides an opportunity for partnership. I must note here, however, that this issue is a minor one given the terrible ordeal of all the involved individuals.

Initially Sarah was not eligible for a lung donation, as the transplant policy was unfavorable for children under 12. She would have been assigned a place at the end of the list, despite her urgent need. Allegedly, the policy would only consider a child under 12 for transplantation after considering adolescents and adults. However, a court judgment in Philadelphia ruled that Sarah should be eligible for adult lungs and that she should be put on the waiting list in a place of priority. Her urgent care together with an adult donor match brought her the (double) lung transplant that she had hoped for. 

Policy and policy makers are painted as antagonists in most of this case. Physicians raise doubts that the current transplantations policy, based on an opt-in approach, is an adequate policy system. They suggest that a different policy, i.e. an opt-out system, would be unequivocally preferable. Policy makers are painted as puppets of the media, as some commentators are concerned about precedent setting. The case would show that if we can get the media on our side, we can get our loved one to perhaps top the priorities list and instigate a policy change. Art Caplan, a well-known ethicists, is quoted in relation to this issue saying: “And it's important that people understand that money, visibility, being photogenic ... are factors that have to be kept to a minimum if we're going to get the best use out of the scarce supply of donated cadaver organs." Antagonism is finally also in place considering the influence of policymakers at the bedside. Art Caplan is quoted as saying: “Judges or congressmen or bureaucrats shouldn't be the ones deciding what to do with organs at the bedside." 

In reaction, I propose here that policy makers did a good job, and I reject concerns about puppeteering or policy makers as antagonists. The policy makers, being pressured to revise the policy by all the media attention, created an appeal procedure within the transplant policy, rather than to overturn the policy in a rash decision. This appeal procedure, which could be used for young children, seems a wise (temporary) solution, while considering the best options to move forward.  

Ideally a combination of medicine as well as policy makers (ethicists and lawyers) should decide what to do with organs at the bedside, in a symbiotic relationship. Medicine alone has good reasons for the policy, but cannot solely explain or justify its totality. For example, it can explain why children under 12 are excluded from this list. As the list constitutes mainly adult lungs, these lungs would have to be cut to fit a child’s body. So in transplantations, physicians deal only with a small piece of lung, making the likelihood of success is smaller and creating risks of complications. Yet, this reasoning alone does not explain which risks are acceptable for whom? Are more complications perhaps acceptable in life-threatening situations? Or another medical argument is that the policy builds on the delicacy of immuno suppression of the lungs. As the airway system is particularly sensitive to infections, lung transplants are sensitive matters requiring a careful policy. Yet, as both under 12 y olds and over 12 y olds receive this immune suppression, it says nothing about the reasonableness of excluding 12 year olds, or which risks of immune suppression are acceptable. 

So beyond the medical justifications of policy, there are constant elements of value judgments.  Which complications do we find reasonable to justify an intervention, or what likelihood of success is required before an intervention can be justified, are value judgments. Medicine can only inform about part of these things: i.e. medical/physiological feasibility and statistical likelihood. It cannot inform us about the acceptability of an intervention or what is reasonable. Medicine cannot tell us about the value of life or other value frameworks. The question if it is reasonable to (under-)prioritize a patient younger than 12 year old, given potential complications, is a value laden ethical question. This question needs consideration in legal, ethical and medical frameworks and principles, and exceeds beyond the medical details alone. Hence, we need a symbiotic relation between lawyers, ethicists and medicine to inform policy. Sarah’s case is a great illustration of how we should work together rather than being painted as separate players or point to one player as the antagonist.  

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.
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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.