It’s become fairly clear over the past few years that two trends in medicine are in conflict, albeit mostly under the radar. On one hand, several promising research and clinical developments have given reason to be cautiously optimistic about the recovery potential of at least some people with significant brain damage, and has led to calls to devote more time and research to promote recovery of people with significant brain injury.
At the same time, advocates for organ procurement have pushed more expansive criteria in terms of ‘eligibility’ for being an organ donor (to put it bluntly – you don’t have to be as dead as you used to be) and have gotten more aggressive in approaching families even while their loved ones are still receiving life-sustaining medical care.
People who have followed this blog over the past few years have probably noticed that, to some degree, the concerns expressed here over developments in procuring organ donors, ‘rush to judgment‘ in brain injury, and loose standards in determining brain death increasingly seem to overlap. That ‘overlap’ covers the areas of conflict.
The first hint I noticed in public about this was in the midst of an excellent article published in The Times in the UK. Unfortunately, the article is no longer accessible without a subscription to the paper, but I wrote about it a few years ago when it was still accessible to the impoverished masses:
“The Undead,” published in The Times, is simply the best discussion of the complexities of researching human consciousness that I’ve seen in the media. As anyone who follows these issues knows, there has been periodic attention given to research involving the differences between people in persistent vegetative state and those in a “minimally conscious” state the U.S. media as well as the UK. This article really stands out.
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Toward the end of the article, European researcher Steven Laureys makes some assertions that would sound radical and alarmist coming from someone like me:
According to Steven Laureys, professor of neurology at Liège University, there is constant pressure in many parts of the developed world to withdraw sustenance from vegetative patients in order to allow them to die so that their body parts can be harvested. In a recent study, Laureys reports, “slightly less than half of surveyed US neurologists and nursing-home directors believed that patients in a vegetative state could be declared dead”. His remarks should be set against the background of widespread shortages of organs and body parts for transplantation. (Emphasis added.)
I was surprised to see that statement from Laureys at the time, but since the allegation came from him – based in Europe – the implications regarding practices in the USA were tenuous. Recently, though, I was surprised once again when Diane Coleman alerted me to a recent article by Dr. Joseph Fins. Before I excerpt and discuss the article in question, here’s a little about Fins from his faculty website:
Dr. Joseph J. Fins is The E. William Davis, Jr. M.D. Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College where he also serves as Professor of Medicine (with Tenure), Professor of Public Health and Professor of Medicine in Psychiatry. He is also an Attending Physician and the Director of Medical Ethics at New York-Presbyterian Weill Cornell Medical Center and on the Adjunct Faculty of Rockefeller University where he is a Senior Attending Physician at The Rockefeller University Hospital. Dr. Fins is an elected Member of the Institute of Medicine of the National Academy of Sciences (USA) and was elected a Fellow of The American Academy of Arts & Sciences in 2012.
He’s also the current president of the American Society for Bioethics and Humanities (ASBH). More from his faculty site:
His current scholarly interests include ethical and policy issues in brain injury and disorders of consciousness, palliative care, research ethics in neurology and psychiatry, medical education and methods of ethics case consultation. He is a co-author of the landmark 2007 Nature paper describing the first use of deep brain stimulation in the minimally conscious state. His forthcoming book, Rights Come to Mind: Brain Injury, Ethics & The Struggle for Consciousness is under contract with The Cambridge University Press.
So if you haven’t heard of Fins, it should be clear that he’s someone who should be taken seriously when he expresses some ethical concerns about evolving practices in medicine that trouble him.
The March 2012 issue of Virtual Mentor, American Medical Association Journal of Ethics featured an article by Dr. Fins titled Severe Brain Injury and Organ Solicitation: A Call for Temperance. Unlike many journal articles, this one is freely accessible. Here’s the intro:
Several years ago I resigned from a board position with the local organ procurement organization (OPO) over the status of organ retrieval from those with severe brain injury. I resigned with a heavy heart but a wary brain because I am a supporter of organ transplantation. Why else would I have agreed to join the board of an OPO? It was pro bono service in the pursuit of a good—the giving of life to patients in dire need of replacement organs in the face of end-stage disease. But there was another set of goods, emerging goods, for a different constituency—some patients with disorders of consciousness—that seemed in opposition to some of the policies pursued by the mainstream organ donation community. I was particularly concerned about patients who were in the minimally conscious state (MCS), a brain state just above the vegetative state.
Fins spends some time giving an overview of the distinctions between coma, vegetative state, and minimally conscious state. He also gives what are regarded as the standards for recovery times. You can find some of that info by searching this site or read Fins’ article yourself. In the next section, Fins gives a description of some of the issues that trouble him in blunt language:
Federal regulations require that Organ Procurement Organizations (OPOs) be notified of the impending death of potential donors [10]. The timing of this notification can be self-evident: the patient on life support and vasopressor agents that maintain the blood pressure artificially, whose end is inevitable, no matter the intervention. But sometimes, the end is contingent upon decisions about the withholding or withdrawal of life support.
Case in point: what to do about those who have sustained a severe brain injury. Totally dependent upon ventilator support for at least airway protection if not ventilation as well, they can quickly become the imminently dying if a decision is made to withdraw the ventilator. And once such decisions are contemplated, regulations would have it that the OPO be notified about the possibility of what is commonly and euphemistically termed a potential organ harvest.
My problem as an OPO board member was that, too often, patients like these were viewed as if they were destined or compelled to die. They were seen as organ donors even before their organs had outlasted a viable body—and brain. As an ethics consultant at an academic medical center, I had seen OPO representatives hover in an ICU, waiting to sweep in—as some intensivists have described it to me—and collect what they viewed as rightly theirs—organs that would have a salutary effect on another human being.
I use the word “hover” deliberately, if a bit provocatively, because that is how families of many brain injury patients viewed it. I know this from interviews with more than 40 families, each with a member who had a disorder of consciousness, who came to Weill Cornell Medical College for enrollment in neuroimaging and EEG studies designed to elucidate mechanisms of recovery. While they were here, we conducted extensive interviews with patients’ surrogates about their experiences with the care system as they made their journey from acute injury on through rehabilitation and chronic care [11].
One of the most powerful scenes, often repeated, occurs early in the course of care, when patients are still in the ICU: surrogates are approached for organ donation. After the patients survive and recover to varying degrees of function, these families still resent what is often described as the predatory behavior of OPO representatives. Many families report zealous attempts at procurement and a near-certainty about their loved one’s prognosis: death was inevitable, ventilators should be withdrawn, and organs should be redirected for some greater good. But with valuable hindsight, families later ask, how did they know? And how could they have been so wrong, both medically and perhaps ethically?
Fins ends with his call – or plea – for temperance. I’ll leave it to readers to follow the link to read his recommendations. The excerpts here should be more than enough to show that the writing is eminently readable.
I am grateful to Dr. Fins for writing this. But I admit that I’m not very optimistic about his call – or plea – being heard or heeded. I’m not sure he’s fully in touch with just how devalued people with significant brain injuries are – uncertain prognosis or no. And what Fins is calling for is something that will demand more money and resources – that may not “pay off” in a way that is sufficient to satisfy his colleagues.
And on the other side of the equation are the OPOs – Organ Procurement Organizations. They’re well organized and well-intentioned. They are not going to embrace the longer waiting periods for recovery in the case of brain injured people that Fins recommends. The OPOs will fear loss of suitable donor organs – some due to complications developed during the longer waiting period. Still others may not experience significant recovery, but become independent of a ventilator. That leaves removal of a feeding tube as the means to death – dehydration doesn’t leave the organs in very good shape.
Don’t get me wrong. I agree with Fins and would like to see the ‘rush to judgment’ cases come to a halt. I’m just not sure many of his colleagues will see things that way. –Stephen Drake