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Press Release Date: July 3, 2001
People often do not have all the information they need to make decisions about donating a family member's organs nor do they have a clear understanding of the donation process, according to a new study funded by the U.S. Agency for Healthcare Research and Quality (AHRQ) and published in the July 4, 2001, issue of the Journal of the American Medical Association.
Almost 80,000 patients are waiting for organ donations for transplantation at a time when the U.S. is experiencing a critical shortage of organs. Evidence shows that families' refusal to consent to patient organ donation may be a factor in limiting the availability of organs.
"The need for donated organs continues to grow faster than the supply of available organs," said Health and Human Services Secretary Tommy G. Thompson. "This study clearly indicates that we need to further intensify our public awareness and education efforts to increase the number of organ donors. It also is a reminder that organ donors need to share their decisions to donate with their loved ones."
In the largest, most comprehensive study conducted to understand how family members make decisions about organ donations, researchers at Case Western Reserve University and the University of Pittsburgh conducted interviews with health care providers, organ donation professionals, and adult family members at nine trauma hospitals, including two pediatric hospitals, located in southwest Pennsylvania and northeast Ohio. Interviews were conducted over a 5-year period from January 1994 to December 1999; medical records were also reviewed.
The study found that:
- Families who knew about the patient wishes were seven times more likely to donate organs.
- Families who were kept updated about their loved ones' condition and got timely and detailed information on organ donation were five times more likely to donate.
- Families who met with organ donation professionals about the donation process were more than three times as likely to donate in spite of other negating factors such as sociodemographics or preconceived attitudes.
- Families who first met with the health care provider and then with an organ donation professional were almost three times as likely to consent to donate organs.
In addition, the authors conclude that the study supports regulations implemented in August 1998 by the Health Care Financing Administration, now known as the Centers for Medicare & Medicaid Services, requiring that only trained organ donation professionals approach families about donation requests.
Laura A. Siminoff, Ph.D., researcher at Case Western Reserve University, said, "Public education has been key in building the awareness of the success of organ donations and transplantation and improving the health of critically ill patients. As a result, the demand for organs has increased dramatically since 1988. However, the supply of organs has not kept pace with the demand. This research helps explain why."
Earlier this year, Secretary Thompson launched a national campaign to encourage Americans to agree to organ donation. In addition to a partnership with businesses and others to promote donation in the workplace, the Secretary unveiled a model national organ donor card which includes space for signatures of the donor and two witnesses. The purpose of the witness signatures is to help ensure that family members or others who may need to consent to donation will know the individual's wishes.
"We owe it to our loved ones to tell them our wishes and help them know they're making the right decision, in case they should have to speak for us," Secretary Thompson said.
Details are in "Factors Influencing Families' Consent to Donation of Solid Organs for Transplant," by Laura A. Siminoff, Ph.D., Nahida Gordon, Ph.D., and Joan Hewlett, Ph.D. of Case Western Reserve University; and Robert M. Arnold, M.D. of the University of Pittsburgh.
Note to Editors: For more information on the study and interviews with Dr. Siminoff, please contact George Stamatis of Case Western Reserve University's Public Affairs Office at (216) 368-3635 or Ellen McGovern of AHRQ's Public Affairs Division at (301) 427-1863.
For more information, please contact Karen Migdail, (301) 427-1855 (KMigdail@ahrq.gov).