Organ Donations Increase When Families Have Good Information About the Donation Process

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Organ Donations Increase When Families Have Good Information About the Donation Process


By: Agency for Healthcare Research and Quality

Date: July 3, 2001

Source: Agency for Healthcare Research and Quality. "Organ Donations Increase When Families Have Good Information about the Donation Process." 〈〉 (accessed January 31, 2006).

About the Author: The Agency for Health Care Policy and Research was established in 1989 as part of the Public Health Service in the U.S. Department of Health and Human Services; it was reorganized in 1999 as the Agency for Healthcare Research and Quality. It supports research to improve the quality, safety, efficiency, and effectiveness of health care for all Americans.


Organ transplantation has become almost routine, thanks to improvements in medical technology and surgical techniques. As the population ages and two major indicators for organ transplantation increase—diabetes and heart failure—the U.S. waiting list for donated organs increases each year.

Unfortunately, supply has not kept pace with demand, and many patients die while waiting for a transplant. When Secretary of State for Health and Human Services Tommy Thompson announced the Organ Donation Initiative on April 17, 2001, he noted that a transplant candidate dies every ninety-six minutes, because only about half of the potentially available organs are actually donated. This translates into thousands of lost lives.

Family members are approached about organ donation at a very difficult time—when they have just lost, or are about to lose, a loved one. While the medical staff who approach them have been specially trained to help them make this difficult decision, those involved must be informed of both the potential donor's wishes and the facts about in organ donation.

A patient's wishes can be indicated on a driver's license, by being listed on the donor registry, or by carrying a donor card. Ideally, however, such intentions should have been discussed with friends and family. Secretary Thompson's initiative included a national donor card, signed by witnesses, that would, ideally, include a family member.

Potential donors and their families should also be reassured that willingness to donate will not affect the patient's medical treatment. There are no costs to the family, and anyone, regardless of age or medical condition, can be a potential donor. The article below describes how increased awareness of the facts about organ donation has measurably improved the supply.


Organ Donations Increase When Families Have Good Information about the Donation Process 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)….

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….


Secretary Thompson's 2001 Organ Donation Initiative was designed to raise public awareness of the facts about and benefits of organ donation. The research described above suggests that this would help increase the supply of available donations, even as the waiting lists continue to grow.

Thompson's initiative may well be succeeding. In 2003, the number of transplants increased by about 2 percent, thanks to a greater supply of donated organs. In addition, from 2002 to 2003, better communication between centers with available organs and those that could handle a transplant increased referrals by 10 percent. This kind of communication is vital to increasing the supply, because the logistics of matching donor and organ are essential if the transplant is to take place.

The number of living kidney and liver donors has also increased. This helps further close the gap between supply and demand, but raises more complex issues of informed consent. The donor must be aware of potential health risks, and these must be balanced against the recipient's potential benefit.

In the future, mechanical heart and liver assist devices, which currently function as a support before transplant, may become longer-term solutions. Research is also exploring the possibility of xenotransplantion, in which organs from genetically modified animals could be used in humans. But these approaches are still on the medical horizon, and those awaiting organ transplants will depend on generous donors and their families for years to come.



Port, Friedrich K., Dawn M. Dykstra, Robert M. Merion, and Robert A. Wolfe. "Trends and Results for Organ Donation and Transplantation in the United States, 2004." American Journal of Transplantation 5 (April 2005): 843-849.

Web sites

Donate Life. "Frequently Asked Questions." 〈〉 (accessed November 24, 2005).

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Organ Donations Increase When Families Have Good Information About the Donation Process

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