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January 1 , 1997
Responding to the need expressed by donor families and recipients of organ and tissue transplants to receive information about, and communicate with one another, a task force led by the National Kidney Foundation's Donor Family Council has created guidelines for communication between the two groups. The guidelines will be unveiled today at the annual meeting of the North American Transplant Coordinators Organization in Minneapolis, Minnesota.
Says Margaret Coolican, RN, MS, chairman of the National Donor Family Council, "The guidelines are based on the belief that donor families and recipients have the right to choose whether they wish to communicate with each other, and health care professionals are in a position to make these opportunities available to both parties."
"Until recently, when donor families and transplant recipients began challenging the status quo, there was inconsistent follow-up with families after donation and many health care professionals believed that donor families and recipients should not communicate with each other," Ms. Coolican continues. "Not only did this leave the involved parties unfulfilled, we found that sometimes it discouraged Organ and Tissue Donations. Families who received little or no information about the recipients of their loved one's organs were less likely to donate again or recommend it to others, and sometimes, even actively campaigned against Organ and Tissue Donation."
The guidelines are intended to provide transplant and procurement professionals with basic systems for providing information to donor families and transplant recipients and establishing methods of communication. The document also includes guides for both donor families and recipients on appropriate written communications to the other party.
Key guidelines include the following:
The guidelines will be distributed by mail and in person via paired teams of donor families and recipients to transplant physicians, surgeons, social workers, procurement coordinators, clinical coordinators and critical care nurses. Copies of the guidelines can also be obtained by calling Shannon Moser at the National Kidney Foundation, (800) 622-9010.
The communications guidelines were developed as a result of a collaborative effort among the following national transplant-related organizations: The National Kidney Foundation's National Donor Family Council, the American Association of Tissue Banks, the American Red Cross Tissue Services, the American Association of Critical Care Nurses, the Musculoskeletal Transplant Foundation, the North American Transplant Coordinators Organization, United Network for Organ Sharing, Eye Bank Association of America, American Society of Minority Health and Transplant Professionals, Transplant Recipients International Organization, U.S. Health and Human Services' Division of Transplantation and the Association of Organ Procurement Organizations.
The guidelines are based on research conducted with transplant recipients/candidates, donor families, clinical transplant coordinators and organ procurement coordinators to determine current practice and necessary improvements. The draft document was circulated for review and public comment for a one-year period.
The National Kidney Foundation's Donor Family Council is dedicated to enhancing the sensitivity and effectiveness of the organ and tissue procurement process, providing opportunities for families to grieve and grow and utilizing the unique perspective and experiences of these families to increase organ and tissue donation.