When Does Life Begin and End? -- the Debate Continues

Frederick Grinnell of Oxford University press in his blog post, Redefining Death — Again responds to the recent Nature editorial, “Delimiting death.” Grinnell’s post contributes to the ongoing public policy debate regarding the relationship between biological and spiritual life.

In addition to this post, there are several other articles that are of significance: Dr. James Bernat, neurologist at Dartmouth, wrote an article entitled Chronic Consciousness Disorders, Annu. Rev. Med. 2009. 60:381–92. The article notes that new functional neuroimaging techniques using PET and fMRI provide a new and complementary way to assess consciousness; that fMRI technologies are showing that 'persistent vegetative state' is not always clear cut -- that there is more of a continuum and that some 'PVS' patients are in fact closer to 'minimally conscious.' The author cites recent provocative studies suggesting that fMRI in unresponsive patients may detect evidence of conscious awareness when a careful neurological examination cannot.

Second, while doing research for my chapter on regenerative Nanomedicine, I came across this very interesting article, available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672310/ , entitled Shorting Neurons with Nanotubes by Gabriel Silva, a professor of bioengineering at UC San Diego. The abstract explains that new insights are emerging about the interactions between brain cells and carbon nanotubes, which could eventually lead to the development of nanoengineered neural devices, i.e., possible neural prostheses.

Finally, there are excerpts on CNN of Dr. Sanjay Gupta’s Cheating Death, available at http://www.cnn.com/2009/HEALTH/10/12/cheating.death.excerpt/index.html, which explores novel applications of therapeutic hypothermia to prevent injury to the brain, along with other stories of life-saving medical discoveries.

These articles and recent findings all have profound implications for end-of-life decisionmaking. While recently, an editorial in Nature magazine called for expansion of the definition of death in order to increase organ donation (http://www.nature.com/nature/journal/v461/n7264/full/461570a.html ), it seems that between the new diagnostics, the potential for neuro-prosthetics, and what we are finding out about 'cheating death’, that we should not necessarily be expanding the definition of death, but realizing that we that are expanding the boundaries of life. In doing so, we need to consider the implications for an aging population, as well as the societal and environmental impacts.

Controversial Infant Heart Transplant Redefines Death

Surgeons in Denver are happily announcing a major break-through in infant cardiac transplants: using hearts from infants that have died of cardiac-related deaths. According to the Wall Street Journal,

Until now, it was thought that hearts from those donors were too badly damaged to be transplanted successfully. Only hearts from donors who were brain-dead -- and whose hearts were still functioning after they were declared dead -- have been considered suitable for transplant.

To make the donors' hearts more viable, doctors at Children's Hospital in Denver altered the standards for declaring the patients dead... The Denver researchers narrowed to as little as 75 seconds the time between when the donor was pronounced dead and when the heart was harvested. Current guidelines call for waiting up to five minutes as a way of making certain that the heart does not start beating again on its own. But removing the heart earlier increases the odds of a successful transplant since it limits the damage caused by a lack of oxygen to the organ.

Most professional medical types I know, be they bioethicists, doctors, nurses, etc, agree that there are significant and severe problems with how transplants are handled in this country, and that we need to do something to increase the number of available organs. Many people support Robert Veatch's suggestion that death not be whole-brain death but higher-brain death, opening up a much larger market for available organs; given that he's been advocating this for 35 years, it's not surprising that he's the bioethicist commenting on the NEJM article. Veatch questions whether removal of the heart after such a short period of time is even legal, saying

"If a heart is restarted, the person from whom it was taken cannot have been dead according to cardiac criteria... Removing organs from a patient whose heart not only can be restarted, but also has been or will be restarted in another body, is ending a life by organ removal."

While the law is certainly something to consider, I agree with a former professor of mine who said that the law should be known and acknowledged, but not actually influence consideration of whether or not a practice is ethical.

And so, is it ethical? In the case of the infants who died, the parents had opted to withhold or withdraw life support; all of the infants had severe neurological injuries but were not considered brain dead. So in this very particular, structured situation, parents had agreed to allow their severely injured infants to die - so removing the heart (almost) immediately after cessation doesn't appear to be terribly problematic; even if the heart did restart on its own, they would just allow it to stop again. There is no effort at saving, rather a withdrawal of treatment and then immediate reaction to the intended end result. And I can understand parents wanting to have their child's death mean something positive for someone else; a chance for a bit of their child to live on, a chance for someone else's child to live.

But I worry. I worry about the people who fear that because they are organ donors, they won't be treated the same, that they will be allowed to die so that they can be harvested - people who buy into the very utilitarian idea that one person dying to save many is okay, and that doctors do such calculus on a daily basis. I worry about over-eager doctors realizing that an infant or child will die, and being less willing to perform life-saving medical interventions because they realize it's futile in the long-term, even if it might buy slightly more time in the short term.

Mostly, though, I worry about a redefinition of death that is happening not via committee or discussion, but action. It smacks of asking forgiveness after acting, rather than asking permission. (I should clarify that I am certain the doctors involved followed their ethics and IRB committee's to the letter, and mean more general community discussion.) It seems like an on-the-fly redefinition that actually moves away from the way the discussion was moving - towards refining what it means to be brain dead - and back towards a much more traditional and potentially troubling definition of what it means to die.

-Kelly Hills (who really does remember how to use this thing, honest...)

'Rapid Organ Recovery' ambulance proposed in NY

In the NY Times, a number of bioethicists comment on a plan to deploy a special ambulance to collect the bodies of people who have died suddenly from traumas or heart attacks and try to preserve their organs: "The organ team would wait five minutes after EMTs give up on resuscitation, to create a clear demarcation between efforts to save lives and those to preserve organs. 'The process of resuscitation would be very distinct from the process of organ recovery so that we would be sure that, ethically, there's no potential for an overlap or misconstruing of what's going on,' said Bradley Kaufman, a top medical director for the New York City Fire Department, which operates ambulances."

However, a number of bioethicists, such as Michael A. Grodin, Robert Truog, Art Caplan, Leslie Whetstine, and Nancy Dubler, who is helping vet the plan, have expressed concerns that the plan may undermine public trust in emergency medical care and the organ donor system and aggravate fears of disadvantaged groups that already harbor deep distrust of the medical system.

Access to the full article here.

SIGMA More Than SciFi

I've heard rumours of a science fiction writers group that advises national/homeland security officials for years, but this is the first time I've actual confirmation of the group, called SIGMA. (Of course it's called SIGMA. They're science fiction authors, they're going to have a cool name.)

SIGMA is apparently a loosely organized group of around 24 authors who advise Department of Homeland Security Undersecretary Jay Cohen, head of the science and technology directorate. Aside from Cohen simply liking their ideas, this makes sense - science fiction often becomes science fact, not just because the authors inspire the people who become scientists (show me someone at NASA right now who wasn't a Star Trek fan growing up), but because they seem to have a knack for prognostication: the cell phone, cyborg, robot, MRI and CT scans, even the very idea of the internet itself, can all be traced back to science fiction. And the same can be said for the biological: I've mentioned Frank Herbet's The White Plague here before, and think it's still one of the most scarily accurate visions of what DIY bioterrorism will end up looking like.

Given this, it's with extreme disappointment that I read about the latest SIGMA offering, which comes from Larry Niven, best known for Lucifer's Hammer and his Ringworld books. Niven's suggestion is, and I'm just going to quote it, to

spread rumors in Spanish within the Latino community that emergency rooms are killing patients in order to harvest their organs for transplants.

Niven goes on to acknowledge, after his sometimes-writing partner and fellow SIGMA member Jerry Pournelle pointed out how politically incorrect the idea is, that while it might not be possible to implement, it would work, and that

"The problem [of hospitals going broke] is hugely exaggerated by illegal aliens who aren’t going to pay for anything anyway.

Not that I think it's necessary, but I'd like to just go on record saying that this is by far one of the stupidest ideas I've heard in a while (and I've spent most of the day reading about bad romance novel tropes, so that's really saying something), and that not only would it spectacularly fail in its intent, it would have several other major impacts on social health as a whole:

1. It's not just illegal immigrants who speak Spanish. Put that rumour out there and it's going to fly around Spanish speaking communities and right into the English speaking community, and do nothing but reinforce the fears that doctors are evil, and willing to kill people for their organs. We have doctors being stupid all by themselves, and don't need the help of rumours to feed the persistent social fear that if you're an organ donor a medical team won't work nearly as hard to save your life.


2. Public health. If we discourage people from being treated for their illnesses, we're going to have a public health nightmare on our hand, where people are not being treated for common problems, and those common problems will spread through the community. It might not sound bad until you contemplate being one of the many this year who came down with the hellflu - imagine that being a continual concern, or virulent strep throat, not to mention things like whooping cough, meningitis... the list goes on. It would be a health nightmare. And frankly, I don't know about the rest of you, but I have enough of those just knowing what I do about bioterrorism - I don't need any help not finding sleep, I do well enough on my own.

I remain grateful that other science fiction authors did speak up to tell Niven it was a bad idea, and only wish he'd never mentioned it in the first place.

On the, I don't want to say plus side, but other side of the coin, Pournelle spoke a bit about advances in security moving us more towards a republic. I don't know that I agree with him, but the ideas are interesting, nonetheless:

Pournelle said that once mobile phone technology and the devices tacked on them to take pictures and record video become more ubiquitous, then ordinary citizens will be empowered to take security into their own hands — a prediction some have said already has come to pass.

“My guess is we won’t need quite so many paid agents of the state to do that for us, which means maybe we can try being a republic instead of an incompetent empire,” he said, then railed against the Transportation Security Administration for treating passengers like “subjects” rather than “citizens.”

-Kelly, who thinks she ought to get cookies for resisting the urge to go the route of the gripping hand in this post

How many organs do we really need?

The Washington Post reports that up to a third of the people on the national transplant list are ineligible for transplant. Why this matters (besides the logistical inefficiencies and delays it could entail): because reports based on a "padded" list would tend to overstate the need for organ donations. As the WaPo story notes, this is bad PR for the transplant world (and for UNOS, the United Network for Organ Sharing, which oversees the allocation of donor organs in the US, in particular)... and bad timing, too, given recent news coverage of the California surgeon accused of hastening a patient's death in order to harvest his organs for donation.

Unprecedented organ donation: The Onion reports

From the lighter side ... here's a video "news story" from The Onion. And, in case you can't tell from the still below, the video isn't for the squeamish.


Anonymous Philanthropist Donates 200 Human Kidneys To Hospital

Would Paying for Organs Help--a review of Michelle Goodwin's terrific book

iThis is a link from my collegue Gerry Beyer's trusts and estates blog to an abstract of a book review/essay I just published in 33 J. Health Pol. Pol’y & L. 117 (2007) discussing Michele Goodwin's terrific book: http://lawprofessors.typepad.com/trusts_estates_prof/2008/02/the-body-part-m.html. I am trying to get a non-proprietary full text copy.
Professor Goodwin-who is a rock star in the field of law and organ donation- has written a compelling, well researched book which I would recommend for use in a college or graduate school class (as well as leisure reading (non-required reading?) ) as the starting place for someone who wants to understand the current legal state of the organ procurement and distribution system both in the United States and globally.

After the overview, Professor Goodwin builds her argument that people should be paid for donating their organs from the premise that African-Americans are a disproportionate share of the donor pool and, in the case of kidneys, have receive less than their share of donor organs. She then confronts and rejects the argument that this fact strengthens the argument that paying for organs is unethical because it would constitute slavery.
She thinks it would not and further thinks it is racist to deny African-Americans the choice to sell their organs. In reading her book, I did a lot of thinking about why people don't donate and started reviewing the medical literature on this topic. What I found looked to me like a very classist picture of non-donating families as selfish people -unmotivated by altruism-who would be motivated by money.
In this essay, then, I question whether paying people for organs really would increase the supply or whether we are mischaracterizing the motives of families who choose not to donate. I wonder if there isn't something at least classist if not racist in how the medical community views families who choose not to donate. Professor Goodwin has done her own research to delve deeper into the African-American community's reluctance to donate and not suprisingly, found a distrust of the medical system and a fear of being used as a research subject. I urge you to read her book and stay tuned as I rework into a real article the parts of this review which strayed from her book.

"In Black Markets: The Supply and Demand of Body Parts, Michele Goodwin (Everett Fraser Professor of Law, University of Minnesota Law School) examines the problems that arise because of a shortage of organs.
Here is a description of her book:
In direct response to indefinite delays on the national transplantation waitlists and an inadequate supply of organs, a growing number of terminally ill Americans are turning to international underground markets and brokers for organs. Offering a contemporary view of organ and tissue supply and demand, Michele Goodwin explores the legal, racial and social nuances of current altruistic institutionalized procurement schemes. It is understandably not publicized that Chinese inmates sitting on death row and the economically disadvantaged in India and Brazil are the most often compromised co-participants in the negotiation process and supply kidney and other organs for Americans as well as other Westerners willing to shop and pay in the shadow of the law. Goodwin suggests that the best alternative model for organ procurement is a market approach or one based on presumed consent and provides an alternative way of studying how to increase the supply of organs and other body parts as well.
Jennifer Bard (Alvin R. Allison Professor of Law and Director, Health Law Program ) has recently published a somewhat critical review of this book in 33 J. Health Pol. Pol’y & L. 117 (2007). Here is an excerpt from the review's abstract:
Black Markets: The Supply and Demand of Body Parts is an important contribution to the body of scholarship and policy analysis about one of the most difficult problems facing contemporary health policy, public health, and bioethics: the fact that the demand for donor organs far outstrips supply. In this book, Michelle Goodwin systematically reviews the general ways in which the United States' current organ-donation and transplantation system negatively affects potential donors and recipients, particularly African Americans. She proposes solving these problems by changing the current system that prohibits payment for organs to one that allows it. However, I argue that the entire discussion of a market-based solution to the problem of a shortage in supply in donor organs suffers from a flaw far greater than the inability to predict how such a market would work, because of a lack of reliable evidence that an offer of compensation would be effective in changing the minds of people who currently decline to donate the organs of their loved ones. "

Major Breakthrough for Transplant Patients

A major breakthrough in transplanted organ surgery may mean freedom from life-long anti-rejection drug therapy and the fear of eventual organ failure and additional surgeries for many transplant patients.
Read details of the pioneering research, from the Washington Post

Kudos to Cato Institute

The Cato Institute has produced an outstanding policy analysis of the ethical issues surrounding live kidney donation and the use of incentives. Written by Arthur J. Matas, MD, it makes a compelling case for ethically appropriate ways to compensate kidney donors in order to overcome the dire shortage. He argues that "allowing the sale of kidneys from living donors would greatly increase the supply of kidneys and thereby save lives and minimize the number of patients suffering on dialysis."

Dr. Matas is a professor of surgery and director of the kidney transplant program at the University of Minnesota. Dr. Matas has been a practicing transplant surgeon for more than 25 years and is the immediate past prresident of the American Society of Transplant Surgeons.

You can read the full white paper here.

Rewarding the Kindness of Strangers (or Friends or Family Members)

While we wrote about Ashwyn last week and whether or not he was unduly influenced to give up a kidney, Sally Satel, a psychiatrist at Yale writes today in the NY Times magazine about desperately seeking a kidney and how her hopes for finding a donor were raised several times only to be dashed at the last moment because the donor changed his/her mind.

As a result of her experience, Sally is urging wherever she can — "in articles, in lectures, from assorted rooftops — that society has a moral imperative to expand the idea of 'the gift'" and to reward the kindness of donors.

She writes, "Altruism is a beautiful virtue, but it has fallen painfully short of its goal. We must be bold and experiment with offering prospective donors other incentives for giving, not necessarily payment but material reward of some kind — perhaps something as simple as offering donors lifelong Medicare coverage. Or maybe Congress should grant waivers so that states can implement their own creative ways of giving something to donors: tax credits, tuition vouchers or a contribution to a giver’s retirement account.

In short, we should reward individuals who relinquish an organ to save a life because doing so would encourage others to do the same. . . But unless we stop thinking of transplantable kidneys solely as gifts, we will never have enough of them."

Seems like a very sensible solution, and something we in the bioethics field having been talking about since the 80's -- but can we convince Congress to do something about it?

Whose Organs are They Anyway...?

The shortage of available and viable organs for transplant both in the U.S., and across the globe, is at a critical mass stage.

We're all aware of the efforts enacted by various states across this country, designed to encourage consistent organ donation on a voluntary basis. In these instances, potential donors have to consent to having their organs harvested. However, the medical community in the United Kingdom is seeking to change that, by moving to an "opt-out" system.

Under the new system doctors would assume that everyone wants to be a donor after death, unless a request has been made ahead of time, either in writing or by notifying relatives, requesting to opt-out.

What do you think? Whose organs are they anyway?

http://tinyurl.com/3bheem