Finger of blame for organ shortage stops when it reaches hospitals
5,000 more donors likely with change in policies
(Editor’s note: The following stories are Part 2 of a Medical Ethics Advisor report on organ transplantation and donation. Part 1 ran in January’s issue. The U.S. Department of Health and Human Services currently is reviewing organ allocation policies and is expected to make a determination sometime this spring.)
In the perfect world, a kidney is available when you need it, a healthy heart arrives just as yours gives out, and someone’s liver helps save you from certain death.
Unfortunately, your hospital is not always a perfect place and all your knowledge, all your medical staff’s skills, and all science’s technological advances in the field of human organ transplantation must begin and end at the same place: the donor.
While the federal government continues to wrestle with the business of organ transplantation how to control it, who should get the livers and hearts and kidneys when they are available, who should determine price and which transplant centers are used experts say your hospital and your ethics committee should look at some cold, hard figures: There are currently 47,000 people on waiting lists for organ transplants; annually, fewer than 20,000 transplants are done. Potential liver transplant patients alone account for 10,000 names on the waiting list; generally, fewer than half of those patients receive a transplant.
Your hospital could be partially to blame for those numbers.
"If hospitals adopted optimal organ donation practices, an additional 5,000 donors would result, bringing the effectiveness of the donation system from one-third to nearly 70%," says Michael Evanisko, president of the Partnership for Organ Donation in Boston, a nonprofit organization that works with a consortium of medical centers and organ procurement groups to increase organ donation.
Hospitals have traditionally been reluctant to deal with family grief, approaching bereavement as a subject better left untouched. As such, organ donation is seldom or appropriately raised. "We cannot blame families for not consenting to donation when at least half of the solution to the organ donor shortage can be found by focusing on hospital practices," warns Evanisko.
To accomplish this, compassionate caring for a potential donor family must be part of every hospital’s commitment to overall bereavement care and is something your hospital ethics committee or consult team should be instrumental in developing.
"The care a donor family receives (from hospital staff) throughout the whole donation experience enhances or destroys our sense of trust," says Vicki Crosier, co-coordinator of New York City-based Compassionate Friends, a self-help group for parents whose children have died, and a member of the National Donor Family Council of the National Kidney Foundation, also in New York City. She says donor families are sometimes not recognized as a voice in the transplant community, "yet we are the ones making it all possible."
One medical center’s commitment to helping family members handle bereavement has added to the comfort care offered during death and at the same time has increased organ donation by nearly 75%.
"We obligate ourselves to whatever emotional, physical, or spiritual support a family needs," says the Rev. Gary Sproat, MDiv, BCC, coordinator of pastoral services at the University of Nebraska Medical Center in Omaha and coordinator of a three-year-old acute bereavement service.
Sproat also serves as the coordinator of the medical center’s ethics consult team. While the bereavement program is not a function of the organ procurement process, it provides a natural forum to discuss it. "A lot of this service is helping the family take the first step past the moment of death," he explains.
The first step can take several forms, says Sproat. Each death at the more-than-500-bed teaching hospital is attended by the bereavement team and services include help with funeral arrangements, psychological counseling for family members, particularly children, and offering the family the options of autopsy and organ donation.
Bereavement counseling allows staff to walk through death with the family and provides a "bona fide mechanism for offering organ donation as an option to a grieving family," says Robert Duckworth, director of the hospital’s organ recovery service and a member of the bereavement team.
Other members of the bereavement team are full-time and on-call pastoral care staff, four nurse resource coordinators who also serve as evening and night nursing supervisors at the hospital, and members of the organ recovery staff.
In this way, organ donation becomes one possible option for helping families cope with death. (See information on autopsy and donation for family members, and hospital guidelines for care and consideration of a grieving family, p. 15.)
Donation consent forms are part of a complete deceased patient packet. The form has these three options for a family member to choose from:
• I have been offered organ donation and consent.
• I have been offered organ donation and do not consent.
• I have been offered organ donation and cannot donate.
The hospital has seen a tremendous increase in its donations; five years ago less than one in 20 families on average consented to organ donation, says Duckworth. In 1996, 21 patients were declared brain dead, five patients did not meet the medical criteria for donation, and the families of 12 others consented to donation. In addition to an increase in organ donation, many more families consent to donation of corneas and tissue, he says.
Widen your donation pool
Evanisko says that organ donation consent rates can be significantly increased when hospital staff not only approach families in an appropriate way, but also do not overlook potential donors. Research by the Partnership for Organ Donation in collaboration with the Harvard School of Public Health and several organ procurement organizations shows that families are not offered the option of donation about 25% of the time.
He says patients most likely to be missed are those over age 50 and those who die of nontraumatic causes. Duckworth adds that the key is educating the medical staff about possible organ donors. "For the first 20 years of transplantation, everyone thought of traumatic brain injury as the only cause of brain death. Now we are recognizing the potential for donation in brain death caused by intercranial bleeding, stroke, and even asthmatic attack," he explains.
Surgeons are often more attuned to brain death, says Duckworth. "There is fertile ground in every hospital to educate the medical staff, the rest of the health care team, and the community," he suggests. Age is also no longer a limiting factor for donation; many cornea and tissue donations come from older patients. "Almost every patient who dies has something to give," Duckworth contends.
The Partnership for Organ Donation and University of Nebraska health care professionals also recommend that hospitals increase organ donation by taking the following steps:
• Establish a team of donation experts in your hospital.
• Formalize the request process (the where, when, and who of requesting donation).
• Provide education for staff, families, and the community. Staff education should include information on current donor criteria and referral procedures.
Family education must include brain death education. In 1994, the National Donor Family Council conducted a survey of donor families. One-third of the respondents said they wanted more information on brain death, says Crozier. Ten percent said they would not donate again or were unsure. The reasons cited were not being adequately informed, not understanding their loved one’s prognosis, not being allowed to see their loved one, and a lack of compassion by health care professionals.
• Develop or purchase resource materials for staff and families on organ donation and death and dying. The Nebraska bereavement team recently requested a $10,000 donation from its hospital auxiliary. The funds will be used to develop brochures, and to purchase books and videotapes on grief and bereavement for families and staff.
Duckworth estimates the cost per family as $10 and projects another $2000 for professional education and $3000 for a one-day workshop on loss, grief, and bereavement care for both staff and the community.
• Monitor the quality of the request process. Invite your local organ procurement organization to perform a medical record review to assure that consistent identification of potential donors is made and requests are made of family members.
• Address the issue of minority organ donation and request. Evanisko says research shows that African-American families are less likely to be offered donation opportunities than whites. Although minorities generally have been reluctant to donate organs in the past, a successful nationwide effort, Minority Organ Tissue Transplant Education Program (MOTTEP) is changing these statistics in a culturally sensitive way.
National MOTTEP currently has 15 sites across the country. The program works with schools, shopping malls, beauty parlors and barber shops, and social and religious organizations. The message of MOTTEP is based on empowerment and on health promotion and disease prevention.
What’s in it for you?
Hospitals that are not transplant centers may find little financial incentive to adopt and maintain good donation practices, although Evanisko and others strongly advocate that the system be changed to give all hospitals built-in economic advantages.
Until then, your hospital ethics committee may find incentive from this ethical and utilitarian viewpoint. "Being able to make a decision about organ and/or tissue donation is the right of every individual and family," says Crozier, who donated the organs of her 17-year-old son. "When professionals neglect this right, they are denying us an opportunity to make a decision when we have no other options."
[Editor’s note: The National Donor Family Council offers a number of resources for families, including a brochure on understanding brain death, a bill of rights for donor families, and the book For Those Who Give and Grieve. For information contact: National Donor Family Council, National Kidney Foundation, 30 E. 33rd St., New York, NY 10016. Telephone: (800) 622-9010. For more information on MOTTEP, call (800) 393-2839.]
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