TRANSPLANT RECIPIENTS INTERNATIONAL ORGANIZATION

Communication Guides

Donor-family / Recipient Communications

Guidelines for Communication Between Donor Families and Transplant Recipients

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 comprised of major national transplant organizations has created guidelines for communication between the two groups.

The guidelines are based upon 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.

Previously, 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." "Not only did this leave the involved parties unfulfilled, we found that sometimes it discouraged organ 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 donation.

Above: TRIO past president, 'JT' Rhodes, and TRIO treasurer, James Mateiko, listen intently to a presentation on Donor Communications at a Leadership Summit workshop

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:

At the time of consent to donation, health care professionals should offer an opportunity to donor families and transplant candidates to receive follow-up information about the donor or recipient at a designated time after transplantation.
Special attention should be paid to the wishes of those who do not want to receive such follow up information. They should be assured that all personal information will be kept confidential.
Donor families and recipients who do not wish to receive information should be informed by health care professionals that they can change their decision on this matter and obtain additional information at any time in the future. Within one month of donation, health care professionals should provide donor families and recipients who wish to receive it, a written report confirming which organs and tissues were procured and information on age, gender, geographical region, occupation and family information, along with cause of death or illness.
If the intended recipient is unwilling to accept written communication, health care professionals should retain it in their files and inform authors that their communication has not been forwarded for this reason.
If members of donor families and transplant recipients wish to disclose their names and/or addresses in order to communicate directly via phone, e-mail or in person, that disclosure should be accomplished by mutual agreement of both parties. Direct communication should take place without the assistance of the health care professionals, unless they are wanted by the participants.

The guidelines were 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.

The latest updated version of the full guidelines document (14 pages) can be found on-line at http://www.kidney.org/transplantation/donorFamilies/infoPolicyGuidelines.cfm.

Many of the local OPO's (organ procurement organizations) and transplant programs offer support both by phone, workshops facilitated by staff for local groups or on-line. As two fine examples of on-line letter writing guides, click on the following:

Note: 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.

Sensitive Terminology of Organ Donation

In May 2005, the Donor Family Council of the Association of Organ Procurement Organizations (AOPO) approved the use of new terminology about donation. The council reasoned that avoiding words and phrases that cause concern among donor families and the general public will increase both understanding and acceptance of the donation process. These terminology updates are unanimously supported by the American Society of Transplantation (AST) and American Society of Transplant Surgeons (ASTS) and have been adopted by the American Journal of Transplantation.

TRIO thanks Ms. Tenaya Wallace, Communications Manager of One Legacy of Southern California, for providing the above article.

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