Bioethics and Transplantation: Who Has a Kidney?

Sally Satel, MD; Resident Scholar, American Enterprise Institute
WH Brady Program in Culture and Freedom Staff Psychiatrist, Oasis Clinic, Washington, DC

Q: How high is the demand for a kidney?

A:There are almost 100,000 people waiting for an organ and kidneys represent about 75% of them. If every person in the country signed an organ donor card, there still would not be enough because less than 1% of the two million people who died last year were considered physiologically eligible to donate a kidney. Last year, only about one fourth of all people waiting for a kidney received a transplant.

Q: The waiting lists for organs in general seems insurmountable. Do you think more people would come forward if live organ donors received payment or some other type of incentive? 

A:I believe we need to give incentives to people who give a kidney and save a life so that others will be motivated to do the same. The organ shortage has been a problem since the first successful kidney transplant on December 23, 1954. I found a transcript from a 1966 symposium on medical ethics where the permissibility of paying donors arose and this idea has surfaced again several times as the waitlist for organs gets longer and longer. By 2010 it is estimated that the wait for a kidney will be 10 years – which means at least 50% of people will die before getting a kidney. Altruism is a beautiful virtue, but it is inadequate as public policy. We have a moral imperative to conduct pilot studies on incentives.  

Q:  In the case of a kidney in which many of us have two in working order, what keeps us from the idea of being live donors?

A: Right, you’ve got two kidneys; you only need one to live. But once it’s gone, then it’s gone, which makes people nervous…Some people would like to give but think, “Well what if I need it someday...” The chances of that are tiny, but if it did happen, the reassuring news is, you’d be put at the top of the waitlist. However, your kid won’t should they need one, which is often a reason people offer for not donating. I think that organ donors should get a voucher that would allow a first degree family member to go to the top of the list should they need an organ in the future. Donating a kidney is less risky than say donating a portion of your liver. However, the liver regenerates itself, the kidney does not.

Q: Do you think the US should take note from Europe and make organ donation upon death an absolute assumption unless expressed otherwise; instead of vice versa?

A:  Yes, the opt-out system. Actually, the UK is currently debating this – a very heated debate. Our system is opt-in – if you don’t designate it on your driver’s license, you are not a donor. In some countries in Europe the default assumption is you want your organs to be donated unless you decide to opt-out. If you do an online search on the organ donation debate in Europe, you’ll find that people are very indignant about the opt-out idea – they feel that “the government is taking my organs!” This prospect is very problematic to some critics. I think we should focus on living donors who can make fully informed decisions about whether to engage in a transaction.

Q: Many of your recent publications seem to focus on dispelling myths, especially about health care and access. Let’s begin with political correctness…does it suppress good health care?

A: In many ways it corrupts academic excellence. When political agendas creep in (anywhere) they displace rational inquiry because they divert the goal of scholarship from uncovering the facts and the goal of medicine from meeting patient needs to promotion of a political agenda. Good examples within the mental health arena take the form of opposing involuntary treatment of gravely disabled patients or refusing to recognize that un-medicated, severely mentally-ill people are more violent than those who are psychotic with positive symptoms and un-medicated. These people truly have a brain disease and many do not have insight into their condition and so don’t see the need to take anti-psychotic meds.One of the biggest problems is keeping people on medication and unfortunately, the Center for Mental Health Services hasn’t been especially effective in dispelling the myth about violence and the mentally ill. Instead, they promote the ‘recovery model.’ The idea is fine, but it’s important to recognize that some people probably will never enjoy reintegration or a reasonable quality of life unless medicated. 

A lot of the financial and ideological firepower obstructing common sense reforms comes from the nation’s lead agency on mental health, the Substance Abuse and Mental Health Services Administration (SAMHSA), which is part of the Department of Health and Human Services. The Administration houses a program called the Protection Advocacy System (P&A). Each state has a P&A agency. They have done some good things (e.g. put a wider array of medications on state formularies and called attention to maltreatment and overcrowding in state facilities) but they have been destructive as well. Protection is fine, advocacy is often problematic. There was a tragic case in Maine where the P&A actively facilitated the hospital release of a dangerous young man against the better judgment of psychiatrists and his parents who forcefully stated their opposition. Three months after discharge, he killed his mother. Numerous examples of death/ injury resulting from a failure to apply these laws are documented by the Treatment Advocacy Center, Arlington, VA.

Q: What about health disparities… is this whole idea just a misconception?

A: It depends on how you define health disparity. There are certainly differences in health status between minority groups and whites. The word disparity is a perfectly innocent word that means difference, but now has taken on the connotation of ‘difference due to discrimination.’ A lot of this is traced back to a 2002 Institute of Medicine (IOM) report that effectively developed the ‘biased doctor model of disparities’ – e.g. if a white doctor had a white and black patient, he would treat the white patient better, irrespective of insurance coverage, etc. However, there is no evidence to support this. It’s one thing to look at the reality that African-American patients have poorer health outcomes on many measures and receive fewer procedures, e.g. cardiac catheterizations than white patients, but it’s a big stretch to say it’s due to bias. In fact, an avalanche of data now points to differences in access to quality doctors, quality hospitals, and also health literacy as the true culprits which affect everyone.

Q: Where do you think psychiatry stands as a profession as it relates to treating the addicted population?  

A: I have not seen much progress in the treatment of addiction. Drug courts were the last noteworthy innovation in my opinion. Furthermore, the folks at NIDA are promoting a public health campaign aimed at conceptualizing addiction as a “chronic and relapsing brain disease.” Not only do non-clinical populations of drug addicts remit, as a rule, it is not particularly helpful to adopt a medicalized slogan that puts addiction in the same category as severe mental illness, Alzheimer’s and multiple sclerosis. This is because, at least today, our best treatments are behavioral in nature and the patient must be a fully active participant in recovery. Characterizing addiction as a brain disease misappropriates language more properly used to describe conditions that are neither brought on by sufferers themselves nor modifiable by a wish to be well. 

Q: Of your Op-Ed pieces to date, which do you like the most and which would you recommend to other physicians?

A:It wasn’t an Op-Ed piece, but my memoir in the New York Times about finding a donor. For psychiatry residents, I recommend my article(s) on PTSD, e.g. ‘The Trouble with Traumatology: Is it advocacy or is it science?’ (2007), “The Trauma Society,” (2003) and ‘For Some, the War is Never Over” (2006) [see www.sallysatelmd.com for these links and more]. I think we have made a number of serious mistakes in the psychiatric care of Vietnam veterans and we can’t afford to replicate those errors. In the late 1960s and early 1970s, the profession didn’t even recognize PTSD as a diagnosis. By the time many of these veterans came to the VA medical centers for care, ten to fifteen years elapsed. 

Q: What’s next for you?

A:  I’m writing a book to be published by the American Enterprise Institute on what a donor compensation system could look like. Also, I am becoming interested in the role of bioethics in medicine and its positive and negative influence on medical practice and research.