Philadelphia: Young Girl Being Denied Transplant Because Her “Retardation” Doesn’t Make Her “Worthy”

Children's Hospital of Philadelphia, death through denial, medical bigotry, medical decisionmaking, medical discrimination, organ donation, organ transplants, Our News & Commentary Blog

Recently, Diane Coleman wrote about new proposals to increase the pool of donor organs, and that have particularly disturbing ramifications in terms of the care and treatment of newly disabled individuals.  We already know that organ transplant teams are more than willing to obtain organs from individuals with long-term disabilities, as highlighted by the case of Ruben Navarro.  Even though a jury found no crime was committed in his death, the chaos and disregard for medical protocol associated with his final hours should embarrass any medical facility.

Navarro was a young man with cognitive disabilities.  At the time the story broke, I had one observation I shared on this blog that’s very relevant in the immediate present:

Ruben Navarro would probably have been rejected out of hand as eligible for being a recipient if he had needed a transplant. It makes the circus of horrors accompanying the rush to make him a donor all the more appalling.

No one knows how many individuals with cognitive disabilities experience discrimination – even fatal discrimination – in the US medical system.  But every once in awhile, a disturbing example comes to light.  When we’re lucky, it even comes to light in time for us to do something about it.

Rachel Cohen-Rottenberg was the first of several people on Facebook to call this to my attention.  Right now, the top article on wolfhirschhorn.org (a website devoted to families of individuals with Wolf-Hirschhorn syndrome) is titled Brick Walls.

The writer has a daughter, Amelia, with Wolf-Hirschhorn and the family has known for some time that Amilia’s kidneys are failing and she will need a transplant.  They’ve had good medical support at Children’s Hospital of Philadelphia (CHOP) up to this point. But things take a very bad and ugly turn at the meeting with the transplant team.  The story itself is long, and people should read it.  The excerpt below appears near the end of the article:

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”

I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”

“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”

“And then who do I see?”

“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”

They both get up and leave the room.

A couple more pieces of information are in order here.  First, the family plans on finding a living donor for Amelia.  They plan to have themselves tested for a tissue match and a number of people in their large family have also indicated willingness to be tested for compatibility. Also, although I wish I could say the doctor was breaking some kind of law in this instance, physicians are apparently given a lot of latitude when it comes to exercising anti-disability bigotry in the transplant arena.

So what can we do?

First, go and check out “Who deserves a kidney? CHOP says no kidney for Amelia” on the site titled “Kidneys and Eyes.”  The woman who writes the blog has two children with disabilities who have both received kidney transplants. She provides several useful pieces of information in terms of taking some kind of action:

There’s this link to a petition demanding that the transplant team at CHOP approve the kidney transplant that Amelia needs.

This same wonderful writer provided the following in regard to CHOP (link and excerpt from patient rights and contact info for CHOP):

CHOP PAtient’s Bill of Rights
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.

File a suggestion, complaint, or grievance by discussing with the clinic, unit, or department manager or other supervisory person, or by contacting The Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983), by e-mail at FamilyRelations@email.chop.edu, by fax at 267-426-6990, or by mail addressed to the Family Relations Office, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104.

PLEASE CIRCULATE WIDELY.  AT THIS TIME, DISABILITY ADVOCATES IN PHILADELPHIA COULD BE VERY HELPFUL IN PRESSURING THE HOSPITAL TO REVERSE COURSE.  –Stephen Drake

NDY President Diane Coleman’s Letter to National Post re: Poll on Assisted Suicide

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Last week, the National Post reported on a recent poll of Canadians in which 67% of the poll respondents indicated their support for legalized assisted suicide for people who are “terminally ill.” 

NDY President Diane Coleman fired off a letter to the Post and it was published on Tuesday, January 6.  The link for the letters section is here.  Diane’s letter is the first letter in the letter section labeled “Three votes against assisted suicide…”  Text of the letter below:

Tom Blackwell’s article reporting that 67% of Canadians poll in favor of assisted suicide is déjà vu all over again for readers in the United States. The superficial and often misleading poll questions on this topic produced similar statistics in a number of U.S. states over the years.

One superficial assumption is that there’s no meaningful distinction between suicide and assisted suicide — most people know that it could tip the scales if your doctor and family members agreed that it was time for you to go.

Another factor is that the phrase “physician-assisted suicide” implies that a trust-worthy doctor is the only assistant. However, the language of assisted suicide laws actually immunizes all potential suicide assistants from any type of liability, not just doctors.

And, finally, there’s a vague sense of comfort that safeguards can ensure that the process is voluntary. But even if the relatively flimsy protections leading up to the lethal prescription are assumed to be ironclad, once the lethal drugs are in ones home, the law does nothing to ensure that they are taken voluntarily.

All in all, a closer look at this complex issue raises so many doubts that only two of our 50 states have legalized the practice by ballot referendum, and no bill has made it through the scrutiny of a state legislature, even after 100 attempts.
Diane Coleman, president/CEO Not Dead Yet, Rochester, N.Y.

Organ Procurement Guidelines, Health Care Decisions and People With Disabilities

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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

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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

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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