The agency charged with overseeing national organ donation policy has rejected a proposed change that many disability advocates worried would allow a hospital’s organ procurement staff to improperly influence end-of-life decisionmaking.
Under the proposal, doctors would have, for the first time, been allowed to bring up organ donation to the families of patients with disabilities before a decision to cease life support was made.
Not Dead Yet, a disability advocacy group that’s long focused on end-of-life issues, had spent the past two years campaigning against the proposal.
“We pointed to longstanding ethical protections against potential pressures being placed on ill people to die and donate their organs…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,” said Diane Coleman, president and CEO of Not Dead Yet, in a June 30 news release.
The decision was made at a two-day meeting of the Board of Directors of the Organ Procurement and Transplantation Network in Atlanta, on November 11 and 12.
“Frankly, I shook my head many times, doubting that we were having any impact except possibly scaring the decision-makers into perpetual inaction,” said Diane Coleman, president and CEO of Not Dead Yet, in a news release. “I don’t trust organ procurement organizations yet, but I am genuinely heartened by the OPTN policy victory this week and the invitation to continue a dialogue.”