Behind the Decision: Emory Experts Discuss Ethics of Transplant Decisions

Emory University Hospital (EUH) has faced backlash in the form of several protests and prayer vigils by the Emory and Atlanta community members for its decision to delay A.J. Burgess’ kidney transplant. The two-year-old child was born prematurely without kidneys, and his father, Anthony Dickerson, is a perfect match. EUH had delayed the child’s transplant operation from Oct. 3 to January 2018 at the earliest because Dickerson had violated his parole, according to the Atlanta Journal-Constitution. He was arrested Sept. 28 and released from jail Oct. 2, the AJC reported. EUH told the child’s mother that Dickerson could not donate his kidney until he showed proof of compliance with the terms of his probation for three months, according to the AJC. EUH has maintained that it is following United Network for Organ Sharing (UNOS) guidelines and wants to help A.J. Burgess.

The issue has sparked debate regarding the ethics of decision making in transplant surgeries. The Emory Wheel interviewed separately April Dworetz, Paul Root Wolpe and Kathy Kinlaw about ethical dilemmas surrounding kidney transplants and the media coverage of the situation. Dworetz is an assistant professor of pediatrics at the Emory University School of Medicine and a bioethicist. Wolpe is the Asa Griggs Candler Professor of Bioethics and the director of the Center for Ethics at Emory University. Kinlaw serves as the director of the Center for Ethics’ Program in Health Sciences and Ethics and a member of the Centers for Disease Control and Prevention (CDC) Ethics Subcommittee of the Advisory Committee to the Director.

The transcript has been lightly edited for clarity and length.

The Emory Wheel: What are ethical concerns one might have when being prescreened as a donor?

Paul Roote Wolpe: The ethical concerns are wrapped up in the clinical concerns. Emory’s responsibilities in this case would be to the donor. The donor is the patient. The question they would be asking is we are about to undergo a voluntary major surgery. Remember, we’re not doing this for the donor’s health. In fact, we’re going to make the donor sick. We have to be especially vigilant about taking care of this person. Are they fit enough for surgery? Is the surgery worthwhile? Are they compatible? Is that kidney going to work out with the recipient? Has the donor shown him or herself to be fully capable of complying with post-surgical medication regimen, with the kinds of restrictions we put on people post-surgery (such as you can’t do any heavy lifting for about six weeks)? Are they going to show up for their follow-up checkups? Do they have a history of being compliant with their medical recommendations? Are they going to end up in jail during the time that they’re getting rehabilitated? Have they recently been in jail? Because if you look at the UNOS regulations, they recommend, I think, a 35-day waiting period after someone’s been in prison because people who have been in prison are at a high risk for hepatitis C and other diseases that make transplants undoable.

There are whole series of issues you have to clear before someone is eligible to be a donor. Then on the sort of ethical and less clinical side, is the person really doing this of their own true will? Is there any coercion there or someone trying to convince them? Is someone trying to guilt them into giving a donor organ? Are they mentally fully stable enough to make an independent decision? Do they really understand the implications? Do they think, “Oh they’ll take the organ out, and tomorrow I’ll be back at work and everything will be fine,” or do they really understand the implications of giving an organ and undergoing a major surgery? Also questions like are they on any drugs they shouldn’t be on, legal or illegal? What people don’t understand is that, yes, in a case like this, there could be a child’s life at stake, though a child like that could live a decade or more pretty easy on dialysis, but it’s a voluntary surgery on the part of the donor. We look at voluntary surgeries differently than we look at mandatory surgeries, that is, a surgery we need to actually save the donor’s life, so the bar is higher.

Editor’s Note: The UNOS guidelines do not explicitly state that those who have recently been incarcerated do not qualify to be donors. However, the guidelines require potential donors to disclose whether they are at risk of Hepatitis C. A 2013 CDC study found “Adults in correctional facilities are at risk for Hepatitis C because many people in jails or prisons already have Hepatitis C.”

April Dworetz: One is good physical and mental health. There are certain tests donors need to pass. There needs to be absence of certain diseases like diabetes, cancer, hepatitis. The patient also needs to be 18. Even if they pass those kinds of tests, there are other issues that are important. For example, they need to provide informed consent, and that takes into account two specific issues. One is that they need to be well-informed of the risks and benefits for both the donor and the recipient. For example, if the donors [are] going in thinking that they’ll donate and give a kidney to whoever it is, or even if it’s a donor who’s giving it to somebody that they don’t know, then they need to know that it’s possible that [the recipient] may not survive the kidney transplant. We don’t want them thinking that person will definitely live, and then they feel like they made a mistake because the person didn’t survive.

At the same time, they need to know the risks for themselves, and there are risks to being a donor. Besides the initial surgery, there are long-term risks, and there are probably long-term risks maybe even with kidney donation [and] we don’t know what they are yet. We may find that out in the future, so they need to know that there may be unknown risks. Also they need to know that there are no medical benefits and that although there may be psychological benefits for them, there are also psychological risks.

The other part of the informed consent is they need to be willing to donate their kidney, but it needs to be voluntary, and so there is an evaluation of the donors to make sure their motives are appropriate. For example, their motive [should not be] that someone threatened to leave them if they didn’t donate.

They also need to have good support and a social network. That has to do with the fact that those with social networks do much better and have less risk after the surgery. It affects quality of life down the line. No substance abuse problems [are allowed], and if they have a mental health diagnosis, it has to be well-controlled. One of the big risks of kidney donation is depression and anxiety. One of the things people take into account is, “Is this person going to be able to return to work and everyday activities?”

There are other [issues] besides psychosocial issues. People [who] donate their kidneys have a higher risk of needing dialysis than those [who] don’t because they have another kidney if one fails.

EW: Are there any ethical concerns in allowing someone with a criminal record or someone who was recently arrested to donate?

Kathy Kinlaw: Just because someone has a criminal background, does not, as far as I understand the guidelines, would not in any way preclude their being considered as a donor.


PRW: No. The only ethical concerns that have to do [with criminals] is the likelihood of re-arrest or incarceration in the period of recovery. You don’t want to have just had major surgery and end up in jail. There are lots of infections there, which is why UNOS doesn’t want someone to give an organ right after coming out of jail. There is also more of a background concern not specifically about being arrested and rearrested, but about people with long arrest records who have those records because they have bad impulse control or are deeply antisocial. This may not necessarily be the case at all. You have to think about that and assess the person. But incarceration itself is not, even repeated incarcerations, is not in and of itself reason to not accept someone as a donor.


EW: Are there any hard ethical standards to which doctors must adhere when making decisions?

PRW: Yes. The reason that the bar is higher for a voluntary surgery is that it is the doctor’s responsibility to do what’s in the best interest of the patient at all times and not bring them into any harm. In surgery, you’re harming the patient; you’re cutting into them [after] determining the good that’s being done is much greater than the harm. The idea that doctors should not do any harm is wrong — they should not do any net harm. That is, the harm that they do should be exceeded by the good that they do. In a broader sense, when we say “do no harm,” we mean ultimately, not in the moment. That’s why if the main ethical principle of a physician is to do what’s in the best interest of the patient and that the patient comes to no harm, a voluntary donation of an organ is there to benefit the someone else, and not the patient in front of you. So, your responsibility to him is all that much greater because you’re not doing this for his benefit, so you have to be extremely careful that all of the reasons it’s being done are upright, that post-operative care can be done properly, that he or she understands what they need to do for proper postoperative care. All of those things become even more imperative when the operation is not for the benefit of the person.

EW: What are your thoughts on the Burgess case?

PRW: I am a clinical ethics consultant to the Emory Healthcare system, and for that reason, I cannot talk about a specific case like this because it would violate HIPAA regulations. But I will say this: In cases like this, when the Emory Healthcare system can’t talk to the media or the public, the media almost always has a very one-sided version of this. The media version of this has both factual errors and interpretations. That is because, due to HIPAA regulations and the Emory Healthcare’s inability legally to comment on the case, they have a very one-sided view of what happens. Some of the things that have been reported are misleading and some of them are factually erroneous. [Media] need to be really clear that they only have one side. They also need to understand the topic they write about; for example, no one who covered transplants would ever believe that a transplant team would decide against a transplant for the trivial reasons that the media claimed were operative in this case. There were some caveats that many reports used to say some of this, but they were usually buried in the last paragraphs.

EW: What are ethical concerns doctors consider in regard to pediatric transplants?

AD: With pediatric transplants, the considerations that are very ethically contentious at times has to do with the ability of the parent or parents to care for the child after the transplant. If the parent has not been able to make doctor’s appointments, has not always given the child the medications the child needs or some other kinds of factors like that, then there would be a concern by the medical team and the organ transplant organization that those parents would not be able or willing to care for that child after the transplant.

Since organs are so rare, then there is a tendency to want to provide organs for people that we think have a better chance of successful transplant. It’s ethically hard when you’re the physician of an innocent child who happens to have parents that aren’t capable or willing to provide the care. Sometimes it’s a social situation — talk about contextual issues so a single mother who does not have a car and has to take a two-hour multiple bus and MARTA trips to get to the hospital and has other kids that she has to get to get to school and pick up from school afterward and doesn’t have a great social or family network who is able to take care of those kids when she’s so frequently [ending] up not able to get there. Sometimes it’s a societal issue; it’s not necessarily parental issues, unfortunately that’s the society we live in.

EW: How do the UNOS guidelines factor into transplant decisions?

KK: Transplant programs are absolutely required to follow the UNOS guidelines. They would put their transplant program at risk if they did not follow the UNOS guidelines. There are some clear aspects of the guidelines related to what a medical evaluation would look like, and the compatibility of the organ to the potential recipient, a risk of infectious disease would be a risk to the recipient. There are a number of things that are fairly detailed in consideration. In addition, there are some areas where the guidelines leave some discernment up to the facility as to how they write their specific policy. There are some specificities to the way individual policies are written that are not going to be specifically detailed in every part of the guidelines, so that needs to be thoughtful. What would be more detailed in a policy than the guidelines want to define leaves the facility with some degree of responsibility for making sure those policies are well done and reflect the guidelines. But again, transplant centers going against UNOS guidelines probably would be very, very difficult to justify.

 

Melanie Dunn and Richard Chess conducted the interviews. Anwesha Guha helped transcribe the interviews.

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