RELEASE: Massachusetts Disability Rights Activists Relieved That Voters Defeated Assisted Suicide Initiative

assisted suicide, Ballot Question 2, disability activists, disability rights advocates, Massachusetts, Our News & Commentary Blog, Second Thoughts

Massachusetts Disability Rights Activists Relieved That Voters Defeated Assisted Suicide Initiative

Massachusetts disability rights activists from the group Second Thoughts breathed a sigh of relief Tuesday night as voters appear to have closely defeated Question 2, which would have legalized assisted suicide in the state. National Not Dead Yet applauds Second Thoughts leadership in the Massachusetts efforts to clarify the dangers in the initiative.

Boston, MA (PRWEB) November 07, 2012

Massachusetts disability rights activists from the group Second Thoughts breathed a sigh of relief Tuesday night as voters defeated Question 2, which would have legalized assisted suicide in the state. Members had gathered at Boston’s Littlest Bar to await the election results. According to the Boston Globe, with 51 percent opposing the initiative and 93 percent of the vote counted, proponents of the measure conceded defeat.

“We changed the nature of the campaign,” said John Kelly, Director of Second Thoughts. “This is the first assisted suicide campaign in which the disability rights perspective has reached so many people.” Kelly, a power wheelchair user since a spinal cord injury in 1984, became a leading spokesperson for the opposition. He debated half a dozen different proponents across the state, squaring off against lead advocate Dr. Marcia Angell three times. Two of those debates are archived on WBUR.

Over the last six weeks of the campaign, support for Question 2 plunged from a high of 68% to a steady 49% throughout last night. “Simply put, Massachusetts had second thoughts, ” Kelly said.

Second Thoughts was formed in December 2011 by Massachusetts disability rights activists, and brought a progressive perspective to a debate so often portrayed as part of the culture war between secular liberals and religious conservatives. The group burnished its progressive credentials, for example, by producing a bumper sticker calling for “Yes on 3/No on 2,” because medical marijuana is also a disability rights issue.

“Assisted suicide proponents tried to paint all opposition as religious and extreme,” said Denise Karuth, Second Thoughts spokesperson for Western Massachusetts. “But progressives changed their minds when they heard, for example that no independent witness was required when the drugs are taken. It’s a recipe for elder abuse.”

“We fight for social justice,” said Eileen Feldman of the Second Thoughts steering committee. “Besides unreliable safeguards, Question 2 stigmatizes conditions that are a normal part of living as disabled for many people. Physical incapacity or incontinence does not take away your dignity.”

The national disability group Not Dead Yet served on the Second Thoughts steering committee. “We applaud the articulate leadership that Second Thoughts provided in efforts to clarify the dangers in the initiative,” said Diane Coleman, Not Dead Yet’s President and CEO.

Second Thoughts now hopes to capitalize on its media exposure by continuing its advocacy on life-and-death healthcare issues, which impact people with disabilities across the age spectrum.

“Question 2 galvanized our community,” said Kelly. “We live on the front lines of our health care system, and our knowledge and experience can improve the system and make it more responsive to people faced with serious chronic and terminal illnesses.”

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To access the fully formatted press release (pdf version available) please go to PRWeb.

Bioethicist Endorses Mass. Assisted Suicide Bill in a Sloppy and Intellectually Lazy Essay

Art Caplan, assisted suicide, ben mattlin, bioethics, Compassion & Choices, disability rights advocates, final exit network, Massachusetts, Oregon, Our News & Commentary Blog, reality check

Art Caplan has an opinion piece that came out yesterday – and it’s linked from just about every conceivable place on NBC and MSNBC.  It’s an endorsement of the proposed legalization of assisted suicide on the ballot in Massachusetts.  While disappointing, it’s not that big a surprise; Caplan has been sliding toward this unqualified endorsement of legalized assisted suicide for several years.

I’ve long had mixed feelings about Caplan.  He can write some insightful analysis and even show a willingness to break from the ranks of fellow bioethicists as he did in at least two instances – the so-called “Katrina killings” at Memorial Medical Center in New Orleans during Hurricane Katrina and in his criticism of the so-called “Ashley Treatment.”  And, while he’s ended up on the same side as disability activists in some instances, he’s never given us more than a casual mention, at least in anything I’ve read.  I know he reads this blog occasionally, so he gets information on disability rights activism and advocacy from here when he does stop by.

As I’ve said, Caplan produces some excellent analysis at times.  Other times – as in his latest effort – I get the feeling he more or less “phoned it in.”  By that I mean that he provides nothing more than very superficial statements and arguments with few concrete facts.  That’s exactly what he does in his latest, an endorsement of legalized assisted suicide, and it’s little more than a reproduction of the talking points assisted suicide advocates are using right now in Massachusetts.

Here’s an excerpt:

The proposed Massachusetts law is very restricted and contains important safeguards. Experience in other states shows little reason for worry about abuse or misuse.  Instead the more people who are going to die know they can end their lives sooner if they choose, the more many of them fight harder to live.

Even the editorial board of the Oregonian had questions about the glowing reports of the success of the safeguards as they stated in September of 2008 (editorial is unavailable except through paid archives):

On the negative side, Oregon’s physician-assisted suicide program has not been sufficiently transparent. Essentially, a coterie of insiders run the program, with a handful of doctors and others deciding what the public may know. We’re aware of no substantiated abuses, but we’d feel more confident with more sunlight on the program. (Emphasis added.)

Daniel Callahan, President Emeritus of The Hastings Center, shared similar sentiments just yesterday:

I have not said much about the potential abuse of “death with dignity” laws. I have no special reason to believe there are serious abuses in Oregon and Washington, or that there need be any in Massachusetts, but we will never really find out if there is. The potential for abuse that most worries me is the legitimization of suicide, whose numbers are now rising. There are all sorts of reasons for people of all ages without terminal illness to want to get rid of their unhappy lives. They should not think that suicide is an acceptable and rational way to cope. Beyond that, I cannot see any good that can come of legalization of PAS. “Choice,” that all-purpose value word these days, used by the liberal left and the market right, is not a good enough reason to change some deep and valuable traditions of the doctor-patient relationship.

You can read his entire article on The Hastings Center’s “Over 65 Blog.”

Caplan’s sloppiness doesn’t stop with that small item.  Making one of his rare references to disability groups, he makes sure to pair us with the “usual suspects”:

Some disability groups and religious organizations are fighting hard to get a “no” on the “Question 2,” initiative as well.  They believe that the terminally ill who are disabled deserve better palliative care and emotional support rather than a prescription of deadly medicine. They also worry that people may feel compelled or coerced into choosing death because their care is expensive, they see themselves as a burden to others or because relatives are thinking that they do not want to spend the grandchildren’s college tuition to keep grandpop going in a nursing home or ICU. Given the current push to contain medical costs, the biggest fear is that the vulnerable will get the bum’s rush to the hereafter. (Emphasis added.)

A little later he adds this “straw man” version of concerns of opponents of assisted suicide:

The critics are worrying about a shift to mass suicide inspired by heartless doctors and families pressuring dying patients to end it.

As luck would have it, there are several disability-centric related critiques of assisted suicide that have been published lately.  Just today, the NY Times published an op-ed by Ben Mattlin titled “Suicide by Choice? Not So Fast.”  Here’s an excerpt, relating some concerns – the real concerns upon which Caplan built his Straw Man:

I was born with a congenital neuromuscular weakness called spinal muscular atrophy. I’ve never walked or stood or had much use of my hands. Roughly half the babies who exhibit symptoms as I did don’t live past age 2. Not only did I survive, but the progression of my disease slowed dramatically when I was about 6 years old, astounding doctors. Today, at nearly 50, I’m a husband, father, journalist and author.

Yet I’m more fragile now than I was in infancy. No longer able to hold a pencil, I’m writing this with a voice-controlled computer. Every swallow of food, sometimes every breath, can become a battle. And a few years ago, when a surgical blunder put me into a coma from septic shock, the doctors seriously questioned whether it was worth trying to extend my life. My existence seemed pretty tenuous anyway, they figured. They didn’t know about my family, my career, my aspirations.

***

This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.

Just yesterday, The Phoenix – a Boston weekly paper – published a long article by S.I Rosenbaum, titled “Killing with kindness: Why the Death With Dignity Act endangers people with disabilities.”:

I think my opinions about doctor-assisted suicide crystallized the night Mike — my wheelchair-using, ventilator-breathing boyfriend — choked on pineapple juice, passed out, and died.

He was dead for several minutes, on a steel table in the ER. The doctor shocked the pulse back into his heart and dropped him into an induced coma, but it still wasn’t clear whether he would make it. As I stood by his bedside, shaking, one of the nurses touched me on the shoulder.

“Maybe it’s better this way,” she murmured.

I’ll never forget that moment. We’d been watching a movie together a few hours before. We had plans to go clubbing. Maybe it’s better this way?

I’m not a violent person, but I wanted to punch that lady in the face.

When I started going out with Mike, I thought that prejudice against people with disabilities was something we’d left behind along with Jim Crow and sodomy laws. I was shocked, again and again, to find that I was wrong. So wrong. Everyone I met had ideas about what it must be like to date Mike — that we never went out, that we couldn’t have sex, that I must have to take care of him all the time — that were so false as to be laughable. We did laugh at that stuff. We had to. But for every person who came up to us to congratulate Mike on his “bravery” in taking a trip to the mall, there was someone who actually thought he’d be better off dead.

Some of those people were doctors.

I defy anyone to interpret anything in either of those articles as saying there’s a great fear from “heartless doctors.” (There are some outright bastards out there, but that’s not the real issue)  The real issue is the fear of medical professionals wanting to be “compassionate” based on what they believe about our lives.

I can already hear Caplan and others voicing objections – saying that assisted suicide legislation is limited to people who are “terminally ill.”  We’re just being paranoid.

No.  We’re informed.

The organizations pushing legalization of assisted suicide are sophisticated and well-funded.  And, like many advocacy organizations, they are following an incrementalist strategy in terms of their policy goals.  Through polling, focus groups and experience, they’ve developed a vocabulary about these topics that draws a favorable response from the public.  And, for the moment, the more “respectable” groups are sticking to policy that is allegedly limited to people who are “terminally ill.”

But the signs of more expansive “advocacy” are already in evidence.  The assisted suicide vigilante group Final Exit Network (FEN) facilitates the suicides of old, ill and disabled people and makes no secret that they don’t limit their “eligibility” to “terminally ill.”  Think of them as the Tea Party arm of the “Right to Die” movement (and, no, that’s not a compliment).  Their activities and agenda clearly involve people with disabilities.  Recently, Derek Humphry (Hemlock Society co-founder, FEN advisor) sent an email to his “right to die” email list announcing a chapter of FEN was opening in Oregon, where they will do the kind of “underground” assisted suicide the “legit” advocates claimed that the law would prevent.

Meanwhile, the “legitimate” group Compassion and Choices is engaging in a campaign to promote the “death with dignity” of elderly people who are just plain tired of living through “VSED” – voluntarily stopping eating and drinking.  They are successfully enlisting hospice and palliative care professionals to facilitate the process.  Ironically, Caplan recently published an article in The Lancet about the death of a man who had horrible bed sores and refused to let staff move him to try to help the sores heal.  Caplan thought a case like this – which ended in the man’s death – deserved a discussion of the limits of autonomy, the effects on medical professionals, and the effect on patient care over time.  Frankly, I think that the program by C & C is much more deserving of that kind of conversation, as they are actively engaging a growing body of palliative care practioners to become comfortable in playing a role in the deaths of people who are simply old and say they don’t want to live any more.  That is going to have a much more far-reaching range of effects than the one individual who wanted his bed sores left untouched.

But questioning the effect of an effort like C & C’s would mean inviting the retaliation of a large and powerful advocacy group.  That’s probably farther than a certain bioethicist is willing to go.  Maybe he’ll just wait until they’ve pushed agenda and it’s viewed as acceptable by the public and the medical profession.  Then he can write and tell us that it’s all ethically OK – and use their talking points to do it.

h/t to Bill Peace for alerting me to the Over 65 blog and Callahan’s post.

The Atlantic: “Physician-Assisted Suicide Is Not Progressive” by Ira Byock

assisted suicide, hospice, ira byock, Our News & Commentary Blog, palliative care

Ira Byock is a friend and someone whose work is widely respected.  Unlike many people writing on assisted suicide, Ira has spent decades working intimately with patients and their families, giving aid, comfort and treatment to all affected during the final chapter in that patient’s life.

Bio blurb from The Nation:  Ira Byock is director of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and author of The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.

The book cited above will be discussed and reviewed in the coming weeks.  Short version of review – not only should you read it, so should your doctor.

 

Physician-Assisted Suicide Is Not Progressive

Excerpt:

The issue of legalizing physician-assisted suicide doesn’t fall cleanly along liberal-conservative lines. However, it’s fair to say that most social conservatives ardently oppose assisted suicide, while a clear majority on the political left support legalization. That’s the case in Massachusetts where Question 2 is on November’s ballot, and according to recent polling is very likely to pass.

I am an outlier, in that I am a registered Democrat and progressive, as well as a physician who has cared for people with life-threatening conditions for more than three decades. I support universal health care, voting rights, disability rights, women’s rights, Planned Parenthood, gay marriage, alternative energy, and gun control. I yearn to see an end to the war on drugs and the war in Afghanistan. And, I am convinced that legalization of physician-assisted suicide is something my fellow progressives should fear and loathe.

When cast as a rights issue, it’s hard for progressives to resist. But “the right to die” is just a slogan. No civil right to commit suicide exists in any social compact. Human beings have a biologically imposed obligation to die; and, as Jean Paul Sartre reminded us, suicide is always an option. However, even if a civic right to suicide did exist, suicide and assisted suicide are very different things. Suicide might be a purely private act; but physician-assisted suicide involves two people, one of whom is trained, certified, licensed, and compensated by society.

Supporters of initiatives to legalize physician-assisted suicide worry about people who die badly. On that we agree. If the moral worth of a society can be measured by how well it cares for the most vulnerable of its members, the America in which I live and practice medicine scores poorly. Much of the suffering I see among people with advanced illness is preventable. Many of the indignities I witness are imposed.

Sick people commonly endure undertreated physical suffering and a dizzying array of system-based personal assaults. There is a maze of appointments, irrational insurance hoops, and requirements, and indecipherable bills. I hear patients express embarrassment at becoming a burden to those they love, dread at the prospect of draining their family’s savings and shame of being forced into medical bankruptcy. Public policies could go a long way to dissolving this quagmire, but legalizing physician-assisted suicide isn’t one of them. Giving doctors lethal authority would address none of the deficiencies in medical practice, health care financing or social services that bring ill people to contemplate ending their lives.

Please read the rest of this excellent article here.  And please leave a comment in support of his article.  You do have to sign in to leave a comment but can do so through your facebook or twitter accounts.

NY Law School – Justice Action Center’s Upcoming Annual Justice Symposium Not Fair to Disability Advocates, Let Alone “Just”

"end of life", "special", alicia ouellette, Ann Neumann, assisted suicide, bioethics, Compassion & Choices, hypocrisy, New York Law School, Our News & Commentary Blog, right to die

On Friday, November 16th, the Justice Action Center, part of New York Law School, is presenting a symposium titled ” Freedom of Choice at the End of Life –Patients’ Rights in a Shifting Legal and Political Landscape.”

It would be understandable if you thought that this was actually an event planned and presented by Compassion and Choices, with the Justice Action Center merely playing the host.  It would be clear because the presence of Compassion and Choices activists dominates this symposium.  As nearly as I can determine, here is a list of C & C representatives at the Symposium in their respective sessions (in all but the ‘welcome’ session, there are additional participants/panelists as well):

Welcome

  • Peter J. Strauss, Symposium Chair,  is listed as Adjunct Professor, New York Law School – he’s also on the Board of Directors of Compassion & Choices of New York;
  • Kathryn L. Tucker, JD, Director of Legal Affairs, Compassion & Choices, Adjunct Professor of Law, Loyola Law School/Los Angeles;

Panel I: Taking Control and Preserving Autonomy

  • Peter J. Strauss, Symposium Chair, Adjunct Professor, New York Law School (and C & C of NY Board Member) moderates the panel;
  • David C. Leven, Executive Director, Compassion and Choices of New York as one of the panelists

Panel II: Real Time Critical Issues

  • David Muller, M.D., Professor of Medicine and Dean for Medical Education, Mt. Sinai School of Medicine, New York; Director, Visiting Doctors Program (and, although it’s not mentioned, on the Board of Directors of Compassion and Choices)

That pretty much takes up the morning.  In all fairness, it looks like the presenters at lunch and the concluding session have no direct connections to Compassion and Choices or the New York chapter.

However, there are multiple and major problems with the third panel of the Symposium.  Here’s the title and description of  that section:

Panel III: Special People, Special Issues
This panel will discuss the issues of concern for people with disabilities and the conflict between organizations dedicated to protecting their rights and end-of-life advocates. The panel will discuss the views of some of the major religion (sic) and whether conservative theological values can co-exist with patient choice. Finally, the panel will conclude with a discussion of the quality of medical care provided to prisoners and how their end of life choices are treated.

The title about “special” people should alert readers immediately that there will be no disability advocates or activists describing our conflict(s) with so-called “end of life” advocates.  Most of us roll our eyes, make gagging noises or give other subtle cues that we detest the “special” label when someone uses it around us.  This session, btw, is moderated by yet another board member of Compassion and Choices.

I would bet that the lion’s share of the load in terms of “discussing” the “issues of concern” that disability activists and advocates have will be the job of panelist Alicia Ouellette.  Ouellette recently published a text on bioethics and disability – apparently becoming the newest bioethicist who wants to become known as the “disability-conscious” bioethicist – someone who can relate slanted, distorted and outright ‘straw man’ versions of disability critiques, concerns and strong objections to both bioethics and so-called ‘end of life’ advocates.  (I’m not linking to her book – I hear it’s not selling well and it would be nice if it continued on that path.)  Suffice it to say, Ouellette gets many things wrong about disability issues in her book – especially when it comes to NDY-related issues.  Small wonder – she didn’t reach out to anyone we know of (in checking her preface) in disability advocacy who was actually involved in cases she talks about in her book – Elizabeth Bouvia, Larry McAfee and Terri Schiavo to name a few.

I am also guessing that the part of the session relating to “conservative theological values” will be dealt with by Ann Neumann who, aside from her role as “Editor, The Revealer, The Center for Religion and Media, New York University,” also writes on her blog ‘Otherspoon.’  Neumann is a ‘true believer’ in all things labeled ‘death with dignity’ and has a longstanding marked disdain for disability advocates who organize against pro euthanasia and assisted suicide groups.  In her last post on ‘Otherspoon,’ she gave a good example of how she could drag disability activists into her discussion of ‘conservative’ religious activists.   In a familiar move that privileged people make when they’re about to demean and dismiss members of a minority, she writes about her great ‘friendship’ with Bill Peace (Bad Cripple).  That’s a conventional shield for what comes next in her post:

I would never take him to task for how he feels.  Or over not seizing his autonomy from hypothetical others, including “pro-life” organizations that have worked very hard to recruit disabled individuals and groups to “their side”–with scary threats of a “culture of death” just waiting around to kill off the “abnormal.”

In that second sentence, she manages to do two things – instead of giving a fair account of the concerns of disability advocates (including Bill) about these issues, she inserts extreme slogans from the Religious Right – and then implies that we are jumping on their bandwagon.  But she doesn’t hate us – we’re just poor, scared little cripples who can easily be “recruited” by the right propaganda.  She denies the agency of disabled people – those stands we take that she disagrees with can’t be our own – so we must have been slyly “recruited” (seduced or brainwashed are terms that are probably closer to what she’s actually implying).

That’s the kind of respect we “special” people can expect from this session.

What makes it all the more appalling is that this will happen under the auspices of the University’s Justice Action Center.  The Center describes its goals, in part, this way:

… the Center seeks to instill in students a deeper intellectual understanding of the law regardless of their final career goals, and to present opportunities to maintain their ties to the social justice community beyond law school. Recognizing that students will pursue varied careers, the Center aims to provide a framework for analyzing the pervasive questions and contradictions relating to social justice in American society, irrespective of the context in which they may arise.

The main “contradiction” attendees will see at this symposium is the Justice Action Center’s failure to show even a modicum of respect in making sure the perspectives of disability advocates and activists are represented fairly and accurately.  Do I have to add that ‘justice” would mean having disability activists themselves speaking for ourselves?

Shame on the Action Justice Center for showing everyone just how little respect and regard they have for people with disabilities.

Shame on the sponsors of this farce –  the New York Law School Law Review and the Diane Abbey Law Center for Children and Families, the American Bar Association Commission on Law and Aging; the National Academy of Elder Law Attorneys; the Elder Law Section of the New York State Bar Association; and Collaborative for Palliative Care, Westchester/NYS Southern Region.

Shame on all these organizations for putting their collective stamp of approval on this farce.  They should all know better.  Most of them do know better.

If you’re thinking that I accidentally left Compassion & Choices of New York off of the list of sponsoring organizations that should be ashamed – it was intentional.  I expect no better of any branch or chapter of Compassion & Choices.  They have never failed to meet my low expectations of them.

It’s a shame to see so many organizations join them in their total disdain for disability activists and advocates.

NY Lawsuit Claims Organ Donor Network Engaged in ‘Shameful Practices,’ Pressuring Staff and Families

brain death, brain injury, litigation, New York Organ Donor Network, organ donation, organ transplants, Our News & Commentary Blog, rush to judgment

There’s a potentially explosive lawsuit that’s gotten limited coverage so far.  As near as I can tell, the first story on it was published in the New York Post on September 26 of this year.  Here’s an excerpt from the news story in the Post:

The New York Organ Donor Network pressured hospital staffers to declare patients brain dead so their body parts could be harvested — and even hired “coaches” to train staffers how to be more persuasive, a bombshell lawsuit charged yesterday.

The federally funded nonprofit used a “quota” system, and leaned heavily on the next of kin to sign consent forms when patients were not registered as organ donors, the suit charged.

“They’re playing God,” said plaintiff Patrick McMahon, 50, an Air Force combat veteran and nurse practitioner who claims he was fired as a transplant coordinator after just four months for protesting the practice.

The suit, filed in Manhattan Supreme Court, cited four examples of improper organ harvesting.

In September 2011, a 19-year-old man injured in a car wreck was admitted to Nassau University Medical Center. He was still trying to breathe and showed signs of brain activity, the suit charged.

But doctors declared him brain dead under pressure from donor-network officials, including Director Michael Goldstein, who allegedly said during a conference call: “This kid is dead, you got that?” the suit charged.

The patient’s family consented to have the organs harvested.

“I have been in Desert Storm, Iraq and Afghanistan in combat. I worked on massive brain injuries, trauma, gunshot wounds, IEDs. I have seen worse cases than this and the victims recover,” McMahon told The Post.

This could just be a case of a ‘disgruntled’ ex-employee leveling charges against the Organ Donor Network as a way to get even – certainly the charges might seem pretty incredible to most of the public who probably have a hard time believing that scenes such as the ones McMahon alleges could occur in major hospitals in this country.

However, to people who are more familiar with some of the controversies surrounding organ donations and determination of death, these charges don’t seem that wild or bizarre – at all.

Take the issue of brain death – as we’ve discussed on this blog, there is high variability between hospitals regarding  just what protocols are used to make a determination of brain death.  In that post we shared this quote from a 2010 article in USA Today from James Bernat, a leading expert on brain death, referring to a 2008 study:

Dr. James Bernat, a professor of neurology and medicine at Dartmouth Medical School, said the new guidelines will help to remove some of the variability in how doctors determine brain death.

“The 2008 study disclosed rather surprising and disturbing variations in determining brain death, and in some cases there were practices that were just plain wrong,” Bernat said.

The main risk is that a patient will be declared brain dead who really isn’t, Bernat said.

“The authors of this (new) study are experts in their field and have done an evidence-based, authoritative review,” Bernat said. “They are saying, ‘This is the way it ought to be done.’ The goal is to improve the uniformity and the quality of neurological practice.”

As Bernat delicately stated, the variability in practice creates a risk that individuals will erroneously be judged to be brain dead.  The trouble with the new guidelines is that, as before, hospitals are not required to adhere to those guidelines, but are free to set their own standards.

And the practices of Organ Donation Advocates in hospitals?  There’s more than a few whispers of concern about that as well.  We’ve done a fair amount of coverage on the topic, but if you only want to read one thing, check out the link and quote below from a prior blog post here:

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.

So, to make a long story short, the allegations in Patrick McMahon’s lawsuit are all-too plausible.  You can read the rest of the NY Post article here.  Additional coverage at the Huffington Post and Staten Island Advance.