Disability Rights Victory in Organ Procurement Protocols – Persistence Pays Off

This week, November 11, the Board of Directors of the Organ Procurement and Transplantation Network (OPTN) adopted a policy that removed two major threats to people with disabilities posed by previous proposals.  This is the key paragraph:

2.8  Requirements for Controlled Donation after Circulatory Death (DCD) Protocols

Introduction:  Donation after Circulatory Death (DCD) describes the organ recovery process that may occur following death by irreversible cessation of circulatory and respiratory functions. Potential DCD donors are limited to patients who have died, or whose death is imminent, and whose medical treatment no longer offers a medical benefit to the patient as determined by the patient, the patient’s authorized surrogate, or the patient’s advance directive if applicable, in consultation with the healthcare team. Any planned withdrawal of life sustaining medical treatment/support will be carried out in accordance with hospital policy.  The timing of a potential DCD donor evaluation and donation discussion shall be coordinated with the OPO and the patient’s healthcare team, in accordance with hospital policy.  Prior to the OPO [Organ Procurement Organization] initiating any discussion with the legal next-of-kin about organ donation for a potential DCD donor, the OPO must confirm that the legal next-of-kin has elected to withdraw life sustaining medical treatment.  Death is declared by a healthcare team member in accordance with hospital policy and applicable state and local statues or regulation. A DCD donor may also be called a non-heartbeating, asystolic, or donation after cardiac death donor.  (Emphasis added. Note also, in a later section, “legal next-of-kin” is defined to include the patient, which is relevant if the individual is conscious and using a ventilator.)

As we noted in a press release issued June 30, 2013:

“A year ago, over 200 disability advocates sent messages to the Organ Procurement and Transplantation Network (OPTN), expressing concern over proposed organ procurement protocols. . . . 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.”

We know that OPTN noticed the over 200 advocacy message letters because they mentioned them in a Briefing Paper issued this year titled “Proposal to Update and Clarify Language in the DCD Model Elements.” (The June 30 press release links to the Briefing Paper that reviews the comments received.)

Not Dead Yet filed public comments regarding both the proposed protocols and related changes to OPTN bylaws six times in the last two years.  You can find them all under NDY Public Policy activities.  We pointed to longstanding ethical protections against potential pressures being placed on ill people to die and donate their organs.

NPR’s Rob Stein has also covered the issue.  And this summer, over 120 disability advocates responded to an NDY Action Alert and sent messages to U.S. Health and Human Services Secretary Sebelius objecting to OPTN’s plan to abdicate its responsibility to set national standards and instead defer to individual hospital autonomy in setting local policies.  The OPTN Board tabled the issue one more time, but did not correct the problems and the committee members apparently continued to haggle.

In our most recent comment letter filed on October 17, 2013, we also expressed concern about a more recently proposed provision:

Potential DCD donors are limited to patients whose medical treatment no longer offers a medical benefit as determined by the patient’s primary healthcare provider and in consideration of any available advanced directive executed by the patient. 

In response, NDY said:

This provision is objectionable and inconsistent with principles of patient autonomy because it allows the primary healthcare provider to determine whether medical treatment offers a benefit, not the patient or healthcare proxy, and only “in consideration” of an advance directive.  In the majority of states, which have “futile care” statutes allowing doctors to overrule patients who desire life-sustaining treatment, a futile care decision by a doctor would make the patient a potential DCD donor under the proposed policy.  We sincerely hope that this is not OPTN’s intent, but is an unintended consequence that requires further revisions to the language.

The National Catholic Partnership on Disability and National Catholic Bioethics Center also consistently filed public comments in response to every OPTN invitation pertaining to the DCD policies.  In the last round, they pushed for and secured the language, “Potential DCD donors are limited to patients who have died, or whose death is imminent” in the final requirements.

Frankly, I shook my head many times, doubting that we were having any impact except possibly scaring the decision-makers into perpetual inaction.  And, like many of you, I know people who need organ transplants, and sadly recently lost my younger brother for the lack of one, so I want to be able to trust the organ transplant system.

I don’t yet trust it, but I am genuinely heartened by the victory this week and the invitation to continue a dialogue.  I hope that many of you will participate.  You can sign up for public comment notifications by going here. – Diane Coleman