Wednesday, January 4, 2012

Not Dead Yet - Organ Procurement Guidelines, Health Care Decisions and People with Disabilities.

Diane Coleman, the leader of the disability rights group, Not Dead Yet, published an excellent commentary concerning the Proposed guidelines for Organ Procurement in relation to Cardiac death.
The article titled: Organ Procurement Guidelines, Health Care Decisions and People With Disabilities, which I have reprinted below, looks at the process for policy development and explains how these issues directly effect her life and the lives of many people with disabilities. The new policies were developed without the input of the disability community and at least it appears that the Disability community will be considered within future and current policy development. Way to go Diane.

Please read the commentary from Not Dead Yet.

Organ Procurement Guidelines, Health Care Decisions and People with Disabilities.

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

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