Summary: Not Dead Yet, a national disability rights organization, is calling upon Health and Human Services Secretary Kathleen Sebelius and the Organ Procurement and Transplantation Network to adopt national standards prohibiting organ procurement staff from initiating organ donation discussions with individuals or family members before they have made a decision to withdraw life-sustaining treatment. The OPTN Board is scheduled to vote at its June 24-25 meeting on a policy allowing individual hospitals to set their own organ procurement standards regarding the timing of such discussions.
Rochester, NY (PRWEB) June 20, 2013
Not Dead Yet, a national disability rights organization, is calling upon Health and Human Services Secretary Kathleen Sebelius and the Organ Procurement and Transplantation Network to adopt national standards prohibiting organ procurement staff from initiating organ donation discussions with individuals or family members before they have made a decision to withdraw life-sustaining treatment. The OPTN Board is scheduled to vote at its June 24-25 meeting on a policy allowing individual hospitals to set their own organ procurement standards.
“A year ago, over 200 disability advocates sent messages to the Organ Procurement and Transplantation Network (OPTN), expressing concern over proposed organ procurement protocols,” said Diane Coleman, President and CEO of Not Dead Yet. “These proposals would have allowed organ donation to be discussed with individuals who depend on life sustaining treatment and their families before a decision to withdraw life-sustaining treatment has been made. This could affect people with upper spinal cord injuries, neuromuscular disabilities and severe brain injuries.”
Not Dead Yet filed public comments regarding both the proposed protocols, which pertain to organ donation after cardiac or circulatory death (as distinguished from brain death), and related changes to OPTN bylaws on January 3, June 14 and August 28, 2012. Responses to these and other comments are set forth in an OPTN/UNOS Briefing Paper concerning what is titled “Proposal to Update and Clarify Language in the DCD Model Elements.”
“We pointed to longstanding ethical protections against potential pressures being placed on ill people to die and donate their organs,” says Coleman, “protections consistent with recommendations made in 2000 by the Institute of Medicine that ‘the decision to withdraw life-sustaining treatment should be made independently of and prior to any staff initiated discussion of organ and tissues donation.’”
John Kelly, Director of Second Thoughts and a member of Not Dead Yet’s Board, has a high-level spinal cord injury and drives his power wheelchair with a sip-and-puff tube. “I am terrified that a newly injured person, already in devastating grief and shock, could get the message that their death would mean more to the people around them than their life, based on the requirement (temporary or long-term) that the person use a ventilator,” said Kelly. “Such a policy could tip the balance between someone deciding to die rather than learning again to live – both studies and my own personal experience show that post injury, we often reach a quality of life as good (or even better) than before. On the way to getting there, the last thing newly injured people need is communication implying that their organs may be more valuable than their lives.”
According to the Briefing Paper, in response to previous public comments, OPTN withdrew and revised organ procurement protocols and are again being presented for an OPTN Board vote. Rather than setting a national standard, the new proposal would allow hospitals to set their own standards regarding the timing of organ donation discussions and other issues.
According to new comments filed by Not Dead Yet on June 19, “By deferring to ‘hospital policy’ on such crucial issues, this proposal is both anti-scientific and anti-patient-rights. This type of local control is no better than ‘states rights’ when federal civil rights are needed to protect a devalued or disenfranchised group. OPTN/UNOS should be providing leadership in protecting individual rights, not deferring to hospital autonomy and announcing that ‘anything goes.’”
The comments urge alternative language to protect the interests of potential organ donors as well as safeguard public trust in the integrity of the organ procurement and transplantation system.
A pdf-formatted version of the release with related attachments is available at: http://www.prweb.com/releases/2013/6/prweb10852604.htm – Diane Coleman
Yes! I agree! Allowing hospitals to set up their own protocols for solicitation of organ donations from newly injured/disabled patients will endanger the newly disabled.
Hospitalists and administrative personnel will be free to influence these newly injured and disabled patients to believe that their organs are more important to society than their lives. These patients are especially vulnerable. The economic value of the organs to the hospitals as well as the humane value for patients waiting for organ donations to SAVE their lives may blind medical and administrative personnel to the value of the life of the newly disabled patient who has a CIVIL RIGHT to life-extending treatment and a CIVIL RIGHT TO LIVE WITH A DISABILITY under the provisions of The ADA.
The Civil Rights of the Disabled Community, especially the elderly disabled, have already been circumvented by the wide-spread misuse of DNR Code Status that is inappropriately extrapolated into the hospital charts of the elderly/disabled when the hospitals/physicians KNOW that CMS and the for-profit insurers will NOT reimburse Hospitals/physicians for mistakes, errors, over treatment and complications.
The unilateral overt and covert default DNR Code status permits hospitals/physicians to unilaterally shorten the lives of the elderly/disabled to CAP the un-reimbursed costs of treatment. They rationalize that the patient is better off dead and the DNR Code status eliminates the need to prove or suggest to the patient or the surrogate that the life-extending or life-saving treatment is medically futile –not defined in law.
The misuse of DNR Code Status is NOT a Civil Rights violation under the provisions the 1991 Patient Self Determination Act passed by the Congress at the request of the financial arm of Medicare in 1991. There is no private right of action for individuals who are injured by the removal of choice to live or to die that constitutes the discrimination that is prohibited in the 1991 PSDA.
Patients can be over treated for profit and then under treated to cap un-reimbursed costs of treatments.
The 1991 PSDA appears to protect the choice (the autonomy) of the patient to shorten his/her life to shorten suffering by refusing life-extending procedures and electing Hospice/palliative care if death is not imminent.
However, by implication, the 1991 PSDA also protects the right of the patient to live by electing life-saving and life-extending procedures because the PSDA prohibits discrimination against those patients who do not elect to shorten their lives with advanced directives, etc.. under the provisions of the PSDA.
But, of course, the problems of “medical futility” and “fiscal futility” weren’t addressed in the 1991 PSDA and, therefore, as Professor Thaddeus Pope (the foremost expert on Medical Futility and the Law) advises the 1991 PSDA is agnostic about the patient’s right to live.
It appears that CMS and HHS and the Congress believed that it was the obligation of the states to solve the problem of fiscal futility and medical futility such as we see in TADA in Texas.
Several States have passed new laws in the past few years that somewhat protect their elderly/disabled constituents against unilateral, overt and covert DNR Code Status that shortens the lives of the elderly/disabled without their informed consent. The majority of states have done NOTHING.
Why isn’t it obvious to Secretary Sebelius that we NEED a FEDERAL solution to ensure the protection of the civil rights and the autonomy of the elderly and disabled to make educated choices at the end of their lives?
The 1991 PSDA needs to be clarified by the Executive OR the Congress NOW in order to protect the civil rights of the elderly and the disabled.
The passive euthanasia of the elderly/disabled for fiscal considerations under cover of inadequate federal law that doesn’t enforce the prohibition of the discrimination as directed in the 1991 PSDA is artfully un-American.
Mistreatment for autistic girl.
http://freakoutnation.com/2013/06/13/naked-5-year-old-girl-discovered-in-a-cage-covered-in-feces-banging-on-the-window-for-help/