Organ donor success hinges on family members
Info needed about why families refuse to donate
The number of people waiting for a kidney transplant in the United States has exceeded 50,000 for the first time, according to the United Network for Organ Sharing (UNOS), the Richmond, VA-based organization that maintains the Organ Procurement and Transplantation Network (OPTN).
As of Oct. 1, 2001, there were 78,350 people on the national organ transplant waiting list, with 50,004 of these persons waiting for a kidney. The total number of people awaiting organ transplant exceeded 50,000 only four years ago, in July 1997.
The situation underscores the need for more Americans to agree to become organ donors upon death, said UNOS President Jeremiah G. Turcotte, MD, in a statement released on Oct. 5. "The No. 1 problem facing the field of transplantation today is the lack of available organs. While we continue to meet the needs of patients as best we can, we must improve upon the public’s willingness to make and share a commitment to donation."
While the numbers of people consenting to become living donors has jumped dramatically — 16% between 1999 and 2000 — these don’t begin to provide enough organs to cover the shortage. And, transplants from cadaveric kidney donors increased only 0.7 percent in the same time period.
Increasing rates of cadaveric organ donation has been a top priority of U.S. Department of Health and Human Services (HHS) Secretary Tommy Thompson. In April, Thompson formally launched the "Gift of Life Donation Initiative" which includes:
- development of a model national donor card;
- creation of a national forum on donor registries to explore options and guidelines for registry development;
- support for the creation of a national medal to be given to donor families, and development of model curriculum on organ donation to be included in driver education classes.
The initiative also includes the "Workplace Partnership for Life" a cooperative arrangement between HHS and private corporations that encourages private employers to work together to develop pro-donation educational activities.
On Oct. 3, the Health Resources and Services Administration (HRSA) at HHS, which regulates organ donation and transplantation efforts across the country, announced grants totaling $10 million over three years to 12 different organizations who will study different strategies aimed at increasing organ donation.
In addition to focusing on educating the public, HRSA wants to find out which specific initiatives actually increase rates of donation, as opposed to simply increasing the number of people willing to sign donor cards, says Jon Nelson, director of the Office of Special Programs at HRSA.
Although educational initiatives might make people more receptive to the idea of organ donation, unless this translates to family members giving consent at the time of death, it doesn’t mean much.
"We don’t really know a lot about what works, in terms of getting people to donate," Nelson says. "There is a lot of anecdotal evidence out there and a lot of it depends on the kind of personal interaction that occurs during the consent process. But, we need to figure out what works and see if that can be replicated in other areas."
According to the National Organ Procurement Study, public opinion polls show that most people say they would donate an organ, but most families don’t agree to donate organs when they are asked. Although 84% of health professionals correctly identify patients’ eligibility to donate some organs, currently only 34% of approached families agree to donate something.1
Although many people think donation education activities are aimed at convincing individuals to become donors, a more effective approach might be to educate specific communities about the value of organ donation in order to remove barriers to procuring organs, says Tom Beyersdorf, executive director of the Gift of Life Agency in Ann Arbor, MI, the organ procurement agency for the state.
The agency was one of 12 recipients of one of the HRSA grants and will launch a three-year initiative aimed at increasing rates of donation among the Arab-American community in the southeastern part of the state.
That area has one of the highest concentrations of Arab-Americans in the country, and historically, they have seen low rates of organ donation, notes Beyersdorf. Developing multilingual education materials and networking with business and community leaders are goals of the three-year initiative.
According to Beyersdorf, the key to increasing organ donation is not just in persuading people to become organ donors, but educating entire communities so that families will not object to organ donation, even if evidence indicates that is what the deceased person wanted.
"Even if the person wanted to be a donor, and indicated it on the driver’s license, in the end, we often have the families say no," he says.
One of the main focus areas of study for the new grant recipients will also be to examine different methods used to approach families to get consent for organ donation, says Nelson.
"In some areas, they use family members of people who have been organ donors to approach families or potential donors; they have people who are on staff at a hospital and on call to go talk to the family," he says. "Some organ procurement organizations have hospital development programs’ where they work very closely with the hospital to ensure that either the Organ Procurement Organization’s (OPO) trained staff members or hospital staff that the OPO has trained, determine whether a person is an eligible donor and then initiate the initial discussions with the family."
It’s essential that there be a clear separation between the personnel who ask the family to consent to donate and the hospital personnel who have been in charge of caring for the patient prior to death, Nelson emphasizes. "There has to be a definite separation between the people caring for the patient while he or she is alive and the people who are there after the patient dies and approach the family about donating, and coordinate the recovery of the organs."
Some physicians incorrectly feel that it is their responsibility to raise the issue of organ donation with a patient’s family after the patient has died, adds Beyersdorf. But, data show that rates of consent for donation are drastically lower when physicians ask than when the family is approached by someone from the OPO or another trained person, he says.
"The family is not able to separate from that person as the caregiver for their family member, and to have this person then ask them about organ donation, is usually very confusing," Beyersdorf explains.
In fact, because studies of the consent process have found physician-requested consent rates to be very low (9% vs. 67% when OPO representatives ask) federal HHS regulations governing organ procurement require that the person approaching the family to request donation be an OPO representative or a trained "donation requester." Designated requesters are individuals who have completed a course approved by an OPO on how to approach potential donor families to request organ or tissue donation. 2
But, even if a potential donor’s physician is a trained requester, say Nelson and Beyersdorf, it would still be preferable for a clearly objective third person to be involved in approaching the patient’s family.
In Beyersdorf’s experience, consent rates are best when a team of people, led by an organ procurement representative from the agency, but including the patient's physician and other caregivers, approaches the family about donation.
"Many physicians feel it is their responsibility as a care provider to both the patient and the family to be the one to initiate the process — they feel that they have the history and background with the family and know how to approach them better," he explains. "But, the data show otherwise. We ask that the physicians, at the very least, invite us to join them for the initial discussion. And, if need be, step out of the picture, to avoid confusing the family."
References
1. The Gallup Organization. The American public’s attitudes toward organ donation and transplantation. Conducted for The Partnership for Organ Donation, Boston, February 1993.
2. HCFA Quality of Care Information; Hospital Conditions of Participation for Organ Donation; Questions and Answers, A26. Web: www.hcfa.gov/quality.
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