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Clinical Decisionmaking

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Organ donations increase when families have good information about the donation process

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 Agency for Healthcare Research and Quality (HS08209). Almost 80,000 patients are waiting for organ donations for transplantation at a time when the United States 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.

In the largest, most comprehensive study ever carried out 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. The hospitals were located in southwest Pennsylvania and northeast Ohio. Interviews were conducted over a 5-year period from January 1994 to December 1999; medical records also were reviewed.

The researchers found that:

  • Families who knew the patient's wishes were seven times as likely to donate organs as those who didn't know the patient's wishes.
  • Families who were kept updated about their loved ones' condition and got timely and detailed information on organ donation were five times as likely as those who didn't to donate.
  • Families who met with organ donation professionals about the donation process were more than three times as likely as those who did not to donate, despite sociodemographic factors or preconceived attitudes that would tend to negate a decision to donate.
  • Families who first met with the health care provider and then with an organ donation professional were almost three times as likely as those who didn't to consent to organ donation.

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. According to lead author Laura A. Siminoff, Ph.D., of Case Western Reserve University, public education has been key in building awareness about 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, notes Dr. Siminoff.

Earlier this year, Health and Human Services Secretary Tommy G. 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 that 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 patient's wishes.

For more information, see "Factors influencing families' consent to donation of solid organs for transplantation," by Dr. Siminoff, Nahida Gordon, Ph.D., Joan Hewlett, Ph.D., and Robert M. Arnold, M.D., in the July 4, 2001, Journal of the American Medical Association 286(1), pp. 71-77.

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