HHS’s Latest Organ Donation Plan: Are “Best Practices” the Answer?

By Anne S. Kimbol, JD, LL.M. Candidate

In September 2003, The Organ Donation Breakthrough Collaborative: Best Practices Final Report (Final Report) was released.  A complete copy of the report can be found at http://www.organdonor.gov/bestpractice.htm.  The Best Practices were identified as part of a study involving six organ procurement organizations (OPOs) and 16 hospitals with high organ donation rates.  These practices are to be adopted by over 100 hospitals and 43 OPOs who agreed to join the Department of Health and Human Services (HHS) in its goal to increase the national rate of organ donation.  See http://www.hhs.gov/news/press/2003pres/20030909.html for the relevant HHS news release. HHS’s involvement in this program is part of HHS Secretary Thompson’s Gift of Life Donation Initiative, which he initially announced in April 2001.

The goal of the program is to increase the current national average of eligible organ donors who actually donate from 46 to 75 percent by adopting the “best practices” as detailed in the Final Report. See HHS news release at http://www.hhs.gov/news/press/2003pres/20030909.html. The practices identified are as follows: (1) orient organizational mission and goals toward increasing organ donation; (2) do not be satisfied with the status quo; innovate and experiment continuously; (3) strive to recruit and retain highly motivated and skilled staff; (4) appoint members to OPO board who can help achieve organ donation goals; (5) specialize roles to maximize performance, including family support, clinical coordination, and hospital relations; (6) tailor or adapt the organ donation process to complementary strengths of OPO and individual hospitals; (7) be there: integrate OPO staff into the fabric of high potential hospitals; (8) identify and support organ donation champions at various hospital levels; include leaders who are willing to be called upon to overcome barriers to organ donation in real time; (9) all aboard: secure and maintain buy-in at all levels of hospital staff and across departments/functions that affect organ donation; (10) educate constantly; tailor and accommodate to staff needs, requests, and constraints, including educational interactions regarding brain death criteria, donor identification, referral, consent and recovery processes, mechanisms for matching organs to recipients, transplantation processes, recipient care, bereavement care and criteria for donation after cardiac death; (11) design, implement, and monitor public education and outreach efforts to achieve informed consent and other donation goals; (12) referral: anticipate, don’t hesitate, call early even when in doubt; (13) draw on respective OPO and hospital strengths to establish an integrated consent process; (14) use data to drive decision-making; and (15) follow up in a timely and systemic manner: don’t let issues fester.  See Final Report.

To date, there has been little critical response to this report.  At first glance, however, there appear to be several weaknesses in this program - its failure to address the fears of donees and its failure to allay the concerns of potential donors.  While there is little doubt that an integrated and efficient procurement team is necessary in order to navigate the various stages of the procurement and transplantation process, there is no evidence that the obstacle to higher donation rates lies within the health care community.  To the extent there is a problem within the industry, Secretary Thompson addressed this issue in August 2003 by awarding 13 grants worth a total of $4.3 million to support social-behavioral and clinical intervention programs in order to increase organ and tissue donation.  See “HHS Awards $4.3 Million to Spur Organ and Tissue Donation,” an HHS press release, at http://www.hhs.gov/news/press/2003pres/20030820.html.

In February 2003, the Advisory Committee on Transplantation (ACOT) forwarded an interim report to Secretary Thompson containing recommendations for addressing issues regarding organ donation.  See Jim Warren, “Advisory panel calls on HHS Secretary Thompson to develop and maintain live organ donor registry,” Transplant News, No. 3, Vol. 13, Feb. 14, 2003.  The recommendations regarding living donors focus on the need for informed consent standards, the possible advantages in offering incentives for donation, the need to provide support for donors and their families, and the benefits of adding information regarding donation to the curriculum in public schools.  Id.  The recommendations also acknowledge the need to perform research and maintain data in order to better understand the cause of organ rejection.  Id.  While several of the recommendations proposed changes within the health care community, the vast majority of the recommendations focused on the need for better understanding of donation practices in the general public.

A review of the Organ Procurement and Transplant Network (OPTN) web site at http://www.optn.org and Coalition on Donation web site at http://www.shareyourlife.org reveals a list of myths regarding organ donation that create fear in the public regarding donation and effectively decrease the number of volunteer donors.  Until these fears, held by potential donees and donors alike are addressed, an increase in organ and tissue donation is unlikely, no matter how well-funded and motivated the health care community may be.