June 19, 2013
John Roberts, M.D.
Board of Directors
Organ Procurement and Transplantation Network/United Network on Organ Sharing
700 North 4th Street
Richmond, VA 23218
Dear Dr. Roberts:
I am writing as President and CEO of Not Dead Yet, a national disability rights organization. This is a follow up to three previous letters concerning the Donation after Cardiac/Circulatory Death protocols, dated January 3, June 14 and August 28, 2012, copies of which are attached for your convenience. I understand that, according to the Organ Procurement Organization (OPO) Committee, the OPTN/UNOS Board of Directors plans to vote on a final version of the DCD protocols at the June 24-25 Board meeting.
As you will note from the attached letters, the majority of our concerns focus on the importance of ensuring that individuals and families are able to make decisions about the withdrawal of life sustaining treatment prior to and independent from any contacts from organ procurement organizations or related organ procurement activities. As explained more thoroughly in the attached letters, we are concerned that organ procurement activities may unfairly and wrongfully tip the scales in health care decision-making by implying that someone’s organs are more valuable than his or her life with significant disabilities.
Concerns about the timing of organ procurement activities, as well as overly aggressive procurement activities conducted by some organizations, have been raised by highly respected physicians and ethicists. Attached are articles by Dr. Joseph Fins and Art Caplan reflecting some of these concerns. Dr. Fins’ resignation from the board of an OPO is particularly telling.
We understand that the following language has been proposed for the DCD protocol by the OPO Committee after the receipt of public comments:
Potential DCD donors are limited to patients whose medical treatment no longer offers a medical benefit to the patient as determined by the patient’s primary healthcare provider, and in consideration of any available advanced directive executed by the patient. 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.
By deferring to “hospital policy” on such crucial issues, this proposal is both anti-scientific and anti-patient-rights. It is anti-scientific because it suggests that there is no scientific research to guide the formation of a uniform public policy governing organ procurement. Yet the Institute of Medicine has repeatedly made recommendations consistent with our position.
It is anti-patient-rights because, among other things, 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. Moreover, the timing of donation discussions and donor evaluation, as well as determination of death, are to be based on hospital policies, with no uniform protections of the rights of people with disabilities who depend on life-sustaining treatment.
Individual hospital control is no better than “states rights” when civil rights are needed to protect a devalued or disenfranchised group. OPTN/UNOS should be providing leadership in protecting patient autonomy, not deferring to hospital policy and announcing that “anything goes.”
Fortunately, the crucial problems with the latest proposal could potentially be addressed by fairly simple edits. We propose the following substitute language for the OPO Committee proposal:
Potential DCD donors are limited to patients 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 primary healthcare provider. 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, but in no case until after the patient or authorized surrogate has made a decision to withdraw life sustaining medical treatment/support in accordance with applicable law.
We urge you to adopt this or similar language, which is consistent with your duty to protect the interests of potential organ donors as well as safeguard public trust in the integrity of the organ procurement and transplantation system.
Please contact me with any questions you may have, and notify me of the Board’s decision. Thank you for your time and attention.
Diane Coleman, JD
Cc: OPTN/UNOS Board Member
Kathleen Sebelius, Secretary, U.S. Dept. of Health and Human Services