Disabilityscoop fails to get the real scoop – Disability, organ transplantation and the HHS

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On September 14, three representatives of the National Disability Leadership Alliance (NDLA) met with the Health and Human Services (HHS) Division on Transplantation.  Two major concerns were brought to the meeting.

Kelly Buckland, the Executive Director of the National Council on Independent Living (NCIL), was one of the participants and NCIL published a brief report on the meeting on September 19:

On September 14, 2012, NCIL Executive Director Kelly Buckland, along with other representatives of the National Disability Leadership Alliance, a national coalition of consumer-controlled organizations, met with the HHS Division on Transplantation.

NCIL stands firmly against discrimination in organ transplants, which are often denied based solely on disability, and discrimination in organ procurement practices, which may soon allow organ procurement to be discussed prior to the decision to withdraw life-sustaining treatment from some persons with disabilities.

Also in attendance at the meeting were ASAN President Ari Ne’eman and Not Dead Yet President Diane Coleman. The NDLA representatives urged HHS to “issue strong and unequivocal legal guidance” on these issues. NCIL will continue to advocate strongly against policies that have recently resulted in clear cases of disability discrimination in life or death situations.

In three short paragraphs, the NCIL report informs readers who was at the meeting and exactly what issues were covered.

Earlier today, disabilityscoop, an online publication that describes itself as the “premiere source of developmental disability news,” published an article on the same meeting.

As the title of the article indicates (Advocates Call for End to Transplant Discrimination), the article focuses on the issue of the denial of transplant consideration to people with disabilities, based solely on their disability.  The emphasis is understandable for a publication that focuses on developmental disabilities.  What is not understandable is the total omission of the other concerns brought forth at the meeting regarding increased reports of pressure brought to bear on families by discussing organ donation when a loved one is on life-support.  These situations involve newly-brain injured people of any age (and those under the age of 21 are considered to be developmentally disabled) and people with disabilities of any age dependent on technology to live.

Prior to publication, Ari Ne’eman, head of the Autistic Self Advocacy Network, put Disability Scoop in touch with Not Dead Yet concerning the organ procurement concerns raised at the meeting.  Not Dead Yet provided the publication three letters(1 is here, 2 is here, and 3 will be up soon) we had previously submitted in response to requests for public comment to the Organ Procurement and Transplantation Network.  “Not Dead Yet actually invited me to the meeting to address the organ eligibility issue since ASAN has been active on that front,” Ne’eman says.  “We’re grateful to NDY for taking the lead on the organ procurement issue, which also affects people with developmental disabilities.”

Unfortunately, readers of disabilityscoop will come away with the impression that transplant denial was the only issue covered at the meeting.  That’s incomplete and inaccurate reporting.  The decision to exclude a major part of shared concerns brought forth at the meeting is inexplicable.

‘Second Thoughts’ Director John Kelly Debated Assisted Suicide Advocate Marcia Angell on WBUR (MA)

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We’re told that there will be another exchange on WBUR between John Kelly and Dr. Marcia Angell on Monday (9/24) on WBUR's morning edition,twice. It will either run during the 5 AM/7 AM hours, or 6 AM/8 AM hours.

Primer: Pro And Con On Mass. Assisted Suicide Ballot Measure

John Kelly and Marcia Angell

Con and pro: John Kelly, disabilities rights activist and founder of Second Thoughts, who opposes Question 2; and Dr. Marcia Angell, senior lecturer in social medicine at Harvard Medical School and former editor of the New England Journal of Medicine, who backs the measure. (Jesse Costa/WBUR)

Come November, if you live in Massachusetts, you’ll face a vote on a life-and-death issue (I mean, even more directly life-and-death than Obama v. Romney.) It’s Question 2 on the ballot, also known as the Death With Dignity initiative and the physician-assisted suicide measure.

It’s a big, rich debate infused by reports from earlier such measures in Oregon and Washington, and this 24-minute segment on Radio Boston is a great way to acquaint yourself with it.

You can listen to yesterday’s debate at this link.

Massachusetts Medical Society Announces Opposition to Legalization of Assisted Suicide (No on 2)

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Last Friday, September 14, the Massachusetts Medical Society announced its opposition to ballot question 2 – in which a ‘yes’ vote would legalize physician-assisted suicide in that state.  Below is a link and the announcement in its entirety.  This is a very welcome development!

Question 2: Prescribing Medication to End Life

September 14, 2012

The Massachusetts Medical Society opposes this ballot question.

On November 6, Massachusetts voters will have the opportunity to vote on Question 2, “Prescribing Medication to End Life.”

We are opposed to Question 2 for these reasons:

  • The proposed safeguards against abuse are insufficient. Enforcement provisions, investigation authority, oversight, or data verification are not included in the act. A witness to the patient’s signed request could also be an heir.
  • Assisted suicide is not necessary to improve the quality of life at the end of life. Current law gives every patient the right to refuse lifesaving treatment, and to have adequate pain relief, including hospice and palliative sedation.
  • Predicting the end of life within six months is difficult; sometimes the prediction is not accurate. From time to time, patients expected to be within months of their death have gone on to live many more months — or years. In one study, 17 percent of patients outlived their prognosis.
  • Doctors should not participate in assisted suicide. The chief policy making body of the Massachusetts Medical Society has voted to oppose physician assisted suicide.

The Massachusetts Medical Society has reaffirmed its commitment to provide physicians treating terminally ill patients with the ethical, medical, social, and legal education, training, and resources to enable them to contribute to the comfort and dignity of the patient and the patient’s family.

Lynda M. Young, MD, MMS past president, testified about the MMS policy at a hearing of the House Judiciary Committee on March 6, 2012:

“Allowing physicians to participate in assisted suicide would cause more harm than good. Physician assisted suicide is fundamentally incompatible with the physician’s role as healer. “Instead of participating in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life. …  Patients must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication.”

Loose Ends – Last Two Essays on Bill Peace’s ‘Comfort Care As Denial of Personhood’ Up at Hastings Center Bioethics Forum

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This is kind of old news by now, but it should be of interest to anyone who read previous posts on this topic.  I’d also urge anyone who hasn’t read Bill Peace’s essay to do so, along with the commentary posted on the Bioethics Forum at the Hastings Center Site.

Just to refresh people’s memories and to provide background info on Bill’s essay and the responses, here’s what we wrote in a previous post:

Back in 2010, our friend, colleague and ally Bill Peace, experienced a long, expensive health crisis when he experienced a stage IV skin breakdown – with a long treatment process that was physically and emotionally grueling by his own accounts.

While Bill was hospitalized – and at one of his lowest points healthwise – he was subjected to a late night visit by a hospitalist.  Laying out a grim set of possible outcomes for Bill’s health crisis, the doctor seemed to be urging Bill to just discontinue antibiotics and let himself be given palliative care to be pain-free until the infection took him.

Below are the links to Bill’s essay, and the three commentaries:

Comfort Care as Denial of Personhood by William J. Peace

Commentaries/Reactions to Comfort Care as Denial of Personhood:

  • “Disability Discrimination” by Diane Coleman and Stephen Drake – We discuss evidence that Bill Peace’s account of feeling devalued and threatened in a healthcare setting may be just the tip of an ugly iceberg.
  • “Disability Discrimination: Risky Business for “Consenting” Adults” – Philosopher Anita Silvers writes that Bill Peace’s account “stirs a familiar feeling of fear” – and one that may be shared by many visibly disabled people.
  • “Disability Discrimination: A Doctor’s View” – Palliative care physician Theresa A. Soriano offers Bill Peace an apology for “the fear and alienation” a member of her own profession caused him.  She outlines what the physician should have done, if he wanted to be helpful; things that are standard practice for those competent in communicating about palliative care.

Bill responded to all three essays in a long and thoughtful post on the Forum blog titled ‘Disability Discrimination – The Author Responds.’  (I suggest you go read this after reading the first three responses)

All of us who responded to Bill’s essay were given a chance to submit a second short essay/post in hopes of a longer discussion.  Apparently, we’re the only ones who took the editors up on the offer.  Our latest contribution to the discussion is titled “End of Life,” Value Judgments and Ending Lives.”  Here’s an excerpt:

Bill’s ordeal offers a prime example of why we almost always put scare quotes around the term “end of life.” It’s clear that the physician was steering Bill toward making “end-of-life” choices, which in this case would be defined as “decisions that will end your life.” This is an increasingly common use of the term – to deceptively describe the assignation of a disabled person to “end-of-life” status by virtue of decisions (chosen or imposed) that will end the person’s life, although the person may not, or even definitely would not, die if the decision were different.

In the coming weeks and months, we’ll be revisiting these confused and conflated terms and continue to try to make more sense of them in context.  I predict there will be no shortage of opportunities to do so.

 

Dr. Thomas Szasz Dies at Age 92, Critic of Coercion and Psychiatry

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In the animal kingdom, the rule is, eat or be eaten; in the human kingdom, define or be defined. – Thomas Szasz

Strictly speaking, assisted suicide is an oxymoron. –Thomas Szasz

From the NY Times:

Thomas Szasz, a psychiatrist whose 1961 book “The Myth of Mental Illness” questioned the legitimacy of his field and provided the intellectual grounding for generations of critics, patient advocates and antipsychiatry activists, making enemies of many fellow doctors, died Saturday at his home in Manlius, N.Y. He was 92.

He died after a fall, his daughter Dr. Margot Szasz Peters said.

Dr. Szasz (pronounced sahz) published his critique at a particularly vulnerable moment for psychiatry. With Freudian theorizing just beginning to fall out of favor, the field was trying to become more medically oriented and empirically based. Fresh from Freudian training himself, Dr. Szasz saw psychiatry’s medical foundation as shaky at best, and his book hammered away, placing the discipline “in the company of alchemy and astrology.”

Dr. Szasz argued against coercive treatments, like involuntary confinement, and the use of psychiatric diagnoses in the courts, calling both practices unscientific and unethical. He was soon placed in the company of other prominent critics of psychiatry, including the Canadian sociologist Erving Goffman and the French philosopher Michel Foucault.

Edward Shorter, the author of “A History of Psychiatry: From the Era of the Asylum to the Age of Prozac” (1997), called Dr. Szasz “the biggest of the antipsychiatry intellectuals.”

You can read the rest of the long – but hardly comprehensive – obituary here.  If you want to find more about Szasz and his work, I recommend checking out the Thomas S. Szasz Cybercenter for Liberty and Responsibility.

Anyone who is interested in various perspectives and arguments against legalized assisted suicide should check out some of his writing on the topic.  You are guaranteed to strongly disagree with some of what he wrote over the years.  Other material will give you food for thought – and some different ways of thinking about the issues, especially when talking to libertarians.

You can read excerpts from two essays Szasz wrote dealing with assisted suicide, along with active links to the entire essays by clicking here.

Personal Note: Our apologies for the sporadic postings over the past couple of weeks.  Diane Coleman and I have both been on semi-vacation and taking care of what some people say is long-overdue personal business.  Anyone who is curious can check out the photos at this link.