Organ Procurement Guidelines, Health Care Decisions and People With Disabilities

bioethics, dcd, diane coleman, donation after cardiac death, national catholic partnership on disability, organ donation, Our News & Commentary Blog, public comment, Stephen Mikochik, united network for organ sharing

Less than two months ago, I was introduced to a new policy arena about which I still have much to learn:  the organ procurement and organ sharing system.  In the U.S., the federal Department of Health and Human Services contracts with the Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) to manage the nation’s organ transplant system.

Among other functions, OPTN/UNOS provide guidelines pertaining to organ procurement practices in hospitals.  In March 2011, OPTN/UNOS proposed changes to the practices related to organ donation following cardiac death (“Proposal to Update and Clarify Language in the DCD Model Elements” [“DCD Proposal”]; apologies that the documents are pdf files).  The proposed changes explicitly mentioned people with “upper spinal cord injury” and “musculoskeletal or pulmonary disease”, and comments were due June 10. 

Since I have a lifelong neuromuscular disability and increasing respiratory issues over the last decade, I can’t help but view the proposal both professionally and personally.  About a year ago, Stephen Drake mentioned that Belgian doctors were bragging about harvesting high quality organs from people like me and other people with disabilities. There are people close to me who need organ transplants, and I respect organ donation.  But the Belgian story was a bit unnerving. 

The UNOS listing of “Affected Groups” in the “At-a-Glance” summary of the DCD Proposal does not include organ donors or prospective organ donors, except to the extent that they are included as members of the “general public.”  I’m not aware of any disability groups that were alerted to this proposal in time to submit comments.  In particular, I’ve confirmed that the very active health care advocates at United Spinal were not aware of it, and I suspect this is likely true of other relevant disability groups.

The proposed changes were scheduled to be voted on by the OPTN/UNOS Board at its November meeting.

On November 8, NDY sent a letter to “request that the comment period be reopened for the Proposal to Update and Clarify Language in the DCD Model Elements in order to enable the development and submission of comments by organizations representing people with spinal cord injuries, brain injuries and neuromuscular disabilities.”  Essentially, we argued “Nothing about us without us.”    

Stephen Mikochik, a blind attorney and law professor at Temple University who chairs the National Catholic Partnership on Disability, also submitted a letter urging that the comment period be reopened.  He did not mince words in describing the proposed changes as discriminatory and worse:

. . . [B]y identifying patients with upper spinal cord injuries as DCD candidates, requiring solicitation of their organs for transplant, necessarily entailing withdrawal of life-support and their deaths, the proposal singles out a class of persons, disabled under federal civil rights law, for adverse treatment.  This constitutes discrimination.

Another goal of the proposed changes is “to maximize the number of donors and transplants by identifying the currently unrealized donor potential through the clarifying and updating of language.”  To that end the changes eliminate the requirement that evaluation of patients’ candidacy for DCD occur only after the decision to remove life-support is made.  The potential for undue influence this creates is obvious.  Those suffering from upper spinal cord injuries often adjust to their conditions over time and, despite their impairment, can lead meaningful lives.  Not surprisingly, they and their families are most vulnerable at the onset of the injury and most open to the suggestion of those required to identify “unrealized donor potential” that they can salvage some good through ending their lives and giving their organs to others.

. . . [T]here are virtually no safeguards at all to ensure that the donation decision is voluntary.  It is difficult to avoid the conclusion that such safeguards were thought unnecessary because such patients were considered more valuable when dead.

Mikochik concluded that HHS would not be able to approve changes that would involve discrimination in violation of section 504 of the Rehabilitation Act of 1973.

I’m not aware of any other letters from the disability community, but am gratified to report that, in response to all of the letters it received, UNOS sent an email notifying me and others that it withdrew the proposed changes and plans to reissue them for public comment in the near future.  The reissued proposal may incorporate some of the input already submitted, but the previous version can be viewed online, and interested groups can sign up to receive notification of future proposals issued for public comment  .  It appears to be time to add these issues to the disability agenda. – Diane Coleman

Massachusetts: John Kelly of Second Thoughts Interviewed on Boston Neighborhood Network

assisted suicide, john kelly, Massachusetts, media coverage, Our News & Commentary Blog, Second Thoughts

On December 9, we shared the press release of the newly-formed Second Thoughts disability group in Massachusetts.  The group formed to oppose the Massachusetts assisted suicide initiative, which is being promoted by what is more or less the local branch of Compassion & Choices (aka “conflation & con jobs”).

Second Thoughts is led by disability activist John Kelly.  On December 13, he was interviewed on the local cable Boston Neighborhood Network.  The interview is embedded below.  I apologize for the lack of captioning.  Although Youtube claims to have a beta version of transcription for its videos, it really doesn’t deserve the label of beta – it’s more like “crappa.”  That means “don’t bother.”  For those that can listen to the interview click on the embedded image below:

Disability Activists, Advocates and Others Pile on Time Magazine’s Error-Filled Kevorkian Tribute

assisted suicide, bint alshamsa, blog recommendations, Carol Loving, diane coleman, euthanasia, john kelly, Kendall Corbett, Kevorkian, media issues, Our News & Commentary Blog, Time magazine

My thanks to readers of this blog.  Several entered into the surprisingly short comment thread in Time Magazine‘s “Fond Farewell” to Jack Kevorkian, which I wrote about last week.  (Among other issues, the obituary referred to the people Kevorkian “helped” as ‘dying.)

Surprisingly, aside from one person who made the tired old “we’re kinder to our pets than to humans” argument – an argument that relies on mythology more than cold, hard reality, there was only one real representative from the ranks of the pro-euthanasia fanatics.  Carol Loving, whose son Nicholas was an early addition to Kevorkian’s body count, makes it a practice to jump in any blog or online story where assisted suicide is being discussed.  She doesn’t have much to add – her main purpose is to promote the book she wrote about her son’s death in a futile attempt to further cash in his suicide and her part in it.  More about her later – from some other voices.

Diane Coleman (President and founder of NDY) jumped in with this comment:

Slightly more than half of Kevorkian’s reported assisted suicides were women with non-terminal disabilities.  Many of these women had multiple sclerosis.  One of his earliest was Sherry Miller.  In The Suicide Machine, the Detroit Free Press described her as a woman who had been abandoned by her husband, who also took her children.  Having known women with MS who raised children, I see Sherry Miller’s despair as having been caused, not by MS, but by her husband.  As a disabled woman, I see Kevorkian as a serial killer who exploited women like Sherry Miller, who didn’t get the same suicide prevention a non-disabled woman would have a right to expect.  The press who helped Kevorkian get away with it, by combining anti-disability bias with laziness in reporting about his “crusade”, should be ashamed.

Kendall Corbett, a disability advocate from Wyoming.  Kendall is a disability advocate and a fellow “first generation” shunt recipient for childhood hydrocephalus.  We met each other on a hydrocephalus email list sometime over 15 years ago.  Here’s his comment, which really resonates with me on a personal level:

I find it disquieting that anyone convicted of murder would be givven a “fond farewell”  by a national magazine, since his “claim to fame” was the very thing that led to his conviction. 

I was born in 1960 with a condition (hydrocephalus) that very few survived and a much smaller percentage were perceived to have any “quality of life.”  My parents were presented with the option of not treating the condition and letting “nature take its course.”  They chose to treat it, and since then I’ve led a productive life, even though I have at least two secondary disabilities related to the condition that Dr. Kevorkian and his supporters might consider sufficient reasons to take the “final exit.”

John Kelly, a long-time NDY activist and friend who lives in Boston, wrote this:

The “plight of the dying?” As other commenters have repeatedly noted, most of his victims were not in any way “terminally ill”. But Time never did let the facts get in the way of a good story.

John Kelly is also the Director of the newly formed Second Thoughts, an organization so new its webpage currently consists of the group’s initial press release.  The organization consists of people with disabilities opposed to legalization of assisted suicide and are mobilizing opposition to the Massachusetts Assisted Suicide Initiative.
In addition to these folks, Lake County RTL, sandee soloway and someone with the username of “lampshar” also wrote very good comments.
The real “star” of the commentary, though was Bint Alshamsa, who was one of the very earliest on the scene, the most prolific – and almost certainly the most eloquent.  In her Blogger profile (see link above), she says – in part – the following about herself:
Above all else, I am proof that having an incurable cancer doesn’t mean that your life is over. I am also the mother of a gifted child who has been an artist since she was born. We live in the southern part of the beautiful state of Louisiana. I’m a biology student on hiatus as I heal from treatment.

Her blog, My Private Casbah, covers the range of her varied interest and passions.  I spent some time last weekend reading a number of her posts and I’ll be returning to read more.  I’m someone who has to read a lot – and it’s wonderful when I find a blogger who is consistently a “good read” – a hard to define set of characteristics that means I look forward to reading the material instead of doing it mainly to see what information I can get out of it.

You can read her comments back at the Time magazine site, but you really have to go check out her entry on the obituary and her experiences in dealing with Carol Loving on the site.

Here’s the link to Jack Kevorkian and Carol Loving: Self-Promoting Partners in Crime, with an excerpt:

Stephen Drake, who maintains the Not Dead Yet commentary blog wrote about Time Magazine’s sloppy and inaccurate obituary for Dr. Jack Kevorkian (the serial killer of people with disabilities) in their “Person of the Year” issue. After reading Drake’s post, I went to post a comment on the magazine’s web edition of the obituary.

I read it and took a look at the comments that had already been left by others. One of them stood out. It was from Carol Loving (I know, the irony is just too much for me to address).

What I find bewildering about this article is the lack of factual knowledge about the doctor and his method of assisting the dying. I guess that is a sign of the times.
Dr. Kevorkian is the man of the century, the 20th century.
The most honest and dignified account of his service to mankind has been incorperated into a play, created in 2009, at Western Michigan University, in collaberation with Tectonic Theater Project.
The play is GOOD DEATH: A Community Conversation. In August of this year, the play received stellar reviews in Edinbugh, Scotland. It has the power to inspire all who see the performance.
We will see euthanasia follow the good works of Dr. Kevorkian !

Carol Loving, Author
My Son, My Sorrow: The Tragic Tale of Dr. Kevorkian’s Youngest Patient

I almost have choked upon reading this! This woman had a son, Nick Loving, who was diagnosed with Lou Gehrig’s disease. When her son became depressed about his limitations and became suicidal, she wrote to Jack Kevorkian asking him to help her kill her son.

 As you might imagine, she has quite a bit more to say.  So please go and check out the rest of her excellent post at this link.

My thanks to everyone who jumped in and weighed in on this piece of journalistic fiction.  –Stephen Drake

Time Magazine – Sloppy and Inaccurate Kevorkian Obit Written by News Director in “Person of the Year” Issue

assisted suicide, euthanasia, Howard Chua-Eoan, Kevorkian, media issues, obitiatry, Our News & Commentary Blog, reality check, Time magazine

I’m sure this won’t be the last of these articles now that we’re at the end of the year, but Time Magazine has printed an obituary for Jack Kevorkian in its “Fond Farewells” section in its “Person of the Year” issue.  The obit was originally written back in June of this year and was written by Howard Chua-Eoan, a News Director at Time Magazine.

I think most people would expect a higher standard of accuracy in an article written by a news director, but Chua-Eoan’s obituary is as full of misinformation on Kevorkian as some of the rankest amateurs writing.  Here’s the obituary, which can be accessed here:

“My specialty is death,” Dr. Jack Kevorkian once told TIME. In the 1980s he began weighing in on the issue that would make him infamous: euthanasia and the plight of the dying. By the time his own end came — on June 3, at 83, from kidney-related complications — the physician was said to have had a role in more than 130 deaths. Many of them came about through use of the Thanatron, the infamous “suicide machine” he rigged to let his patients self-administer lethal levels of narcotics.

In 1999, after Kevorkian had deftly avoided criminal responsibility in several cases, he was convicted of second-degree murder when video surfaced of him administering a deadly dose. Eight years later he was paroled; a quiet period followed, and then he resumed his crusade, pushing his cause vigorously though never again assisting in suicides.

His detractors, though, continued to decry his methods, claiming they skirted the subtleties of psychology and palliative alternatives and that the effectiveness of his death machines robbed the dying of the chance to consider other ways to see out their earthly existence. But Kevorkian’s confidence in his quest remained unruffled. “It’s unstoppable,” he told TIME. “It may not be in my lifetime, but my opponents are going to lose. There’s a lot of human misery out there.”

Most readers of this blog know more about Kevorkian than the general public does.  I highlighted two sentences above in which Kevorkian’s concerns and activities are said to have revolved around people who were dying.  There is ample documentation that the majority of people who made up Kevorkian’s body count weren’t termimally ill at all.  Here’s a list of online resources that help provide that documentation, included in an earlier post attempting to do a reality check on the circulation of Kevorkian mythology:

Turns out, like a great number of media people, Mr. Chua-Eoan is on twitter.  It’s a great new tool, IMO.  Many activists and advocates already know from past experience that there are numerous firewalls between journalists, editors, etc and the rest of us when we want to reach someone with a complaint about accuracy in a story.  National media are more than happy to correct the misspelling of a name, but become unreachable and unresponsive when confronted about factual inaccuracy.

This time, at least, I can be relatively sure that the author I want to complain to (and about) will actually be aware of the concerns about what he’s written.  I’ve already sent him a complaint on twitter and I’ll send a link to this blog the same way.

If anyone else out there would like to reach Mr. Chua-Eoan, you can send him a tweet – @hchuaeoan – to let him know how you feel about the fact-deficient Kevorkian obit.

Speaking of the obit, there are very few comments on it right now and two of them are mine.  Please go visit the following URL and add your comment or at least add a “like” to one of mine.–Stephen Drake 

Canada: NDY Board Member Rhonda Wiebe Writes About “Better Dead Than Disabled” in “The B.C. Catholic”

ableism, assisted suicide, better dead than disabled, Canada, dignity, disability rights, discrimination, euthanasia, media coverage, Our News & Commentary Blog, Rhonda Wiebe, suicide, suicide prevention

Rhonda Wiebe is on the NDY Board of Directors.  Yesterday, The B.C. Catholic published an essay by Rhonda titled “Are we better off dead than disabled?”  Here’s the beginning of her excellent piece – a piece that aims to inform sympathetic but otherwise uninformed allies about the most critical barriers and threats facing disabled people:

The perils of the social devaluation of people include legal assisted suicide and euthanasia
By Rhonda Wiebe
The B.C. Catholic

It is not uncommon to hear people without disabilities and people who have recently acquired a disability say they would rather be dead than disabled.

Although politically incorrect, embedded perceptions that life with disability is full of suffering and indignity promote the idea that it’s a death sentence. Able-ist social conditioning equates disability with pain, frailty, incapacity, and poor quality of life. It views persons with disabilities as problems that need to be fixed.

The ‘problem’ of disability

I would argue the “problem” of disability lies more in external social, physical, attitudinal, and architectural barriers.

Please read the rest of her essay at the B.C. Catholic here. –Stephen Drake