Phase 6aftercare Of The Family

Families that Decline

Several OPOs are currently obtaining follow-up information from families who choose not to donate. The intent of the follow-up is to identify those situations or circumstances that may have influenced the family's decision to decline. The importance of making a decision about donation and sharing that decision with family members is clear from this follow-up. Many families report that they did not know the wishes of their next of kin regarding donation. They chose not to donate because they were unsure of what their loved one would have wanted.

Again, the most telling reason families chose not to donate was their perception that the hospital failed to show adequate care and concern for their well-being during their loss.

Families that Accept

If the family chooses donation, a detailed consent form outlining the specific organs and tissues they wish to donate is signed. The final requirement is the completion of a detailed medical and social history questionnaire on the donor. Once complete, the family is free to leave. However, some families prefer to stay and say their good-byes closer to the time of the actual recovery.

Care of Donor Families

In 1994, the National donor family council was developed to help those that are in the unique role of being donor families. At that time the charter members developed goals which include:

• To serve as an advocate for families and provide support;

• To facilitate research necessary to ascertain needs and expectations of families and how best to service those needs;

• To act as a body to develop standards and guidelines for the care of families;

• To develop programs that support families and professionals throughout the entire donation experience from hospital admittance through bereavement aftercare;

• To identify ways to improve and enhance communication and understanding with potential donors and their families; and

• To increase the potential for organ and tissue donation through collaboration as an integral component of the transplantation process.

The council has also developed a newsletter and book named For Those Who Give and Grieve. In addition, they have developed the Bill of rights for donor families. This document was created to represent the rights and expectations of families of loved ones who die and who may be considered potential organ and/or tissue donors. In summary, these rights include:

• To have a full, careful explanation about what happened to their loved one, his or her current status, and his or her prognosis; To be full partners with the healthcare team in making decisions; To have a full and careful explanation about death; To have the opportunity to be with their loved one during and after his or her death;

To be cared for in a sensitive manner;

To have an opportunity to make organ and/or tissue donation decisions; To have this information presented in a manner suited to the family and time to make a decision; To have this decision be accepted;

To have assurance that their loved one will be treated with respect; to receive timely information about the organs and/or tissues utilized; To be given the opportunity to exchange communication with recipients; To be assured they will not be burdened with expenses; and To receive ongoing bereavement follow-up support for a reasonable period of time.5

Other contributions this council has brought to donor families are the Understanding Brain death Fact Sheet, the National Donor Family Survey, The Donor Family Quilt and "Making the Critical Difference Workshop", a critical care nurse education program.4

Many OPOs have expanded the function of donor families far beyond the traditional volunteer speaker role. Donor family members are becoming more active in advising and directing the activities of the OPOs. They are strong and vested advocates of donation and are uniquely qualified to impart the benefits of donation. As a way to honor donors and their families, most OPOs host an annual donor family/recipient celebration. Booklets, medals and grave markers are just a few of the items that are presented to donor families in honor of their loved one.7

Contact with recipients is a valuable form of support available to donor families. While many donor families and recipients choose to remain anonymous, many others choose to communicate. Studies have shown that direct interaction enables donor families to see the benefit of their donation and it also provides recipients an opportunity to express their gratitude.8

Overall, involving donor families in the OPO is very valuable. By sharing their thoughts, feelings, and experiences related to donation, the donor families help the OPO staff to see direct benefit from their activities and they revitalize the OPO's dedication to improve the quality of life for many and save the lives of others.

References

1. Beasley C, Capossela C, Brigham L et al. The impact of a comprehensive, hospital-focused intervention to increase organ donation. Journal of Transplant Coordination. 1997; 7:6-13.

2. Blagg CR, Helgerson SD, Warren CW et al. Awareness and attitudes of Northwest Native Americans regarding organ donation and transplantation. Clinical Transplantation. 1992; 46:436-442.

3. Blank RH. Life, Death, and Public Policy. Springfield, IL: Northern Illinois University Press: 1988:129.

4. Coolican M, Politoski G. Donor Family Programs. Dying, Death, Donation and Bereavement Care. 1994; 6:3:613-623.

5. Corr C, Nile L. Bill of rights for donor families. National Donor Family Council of the National Kidney Foundation. (Item #06-13)

6. Dunn D. Motivation for giving: Consent for the donation of organs and tissues. Journal of Transplant Coordination. 1995:5:2-8.

7. Holtcamp S. Something More For Donor Families, 1990:1-6.

8. Lewino D, Stocks L, Cole G. Interaction of organ donor families and recipients. Journal of Transplant Coordination. 1996:6:191-195.

9. Manning D. Comforting Those Who Grieve. A Guide For Helping Others. San Francisco, CA: Harper Collins Publishers:1985:16-22, 56-69, 69-71.

10. Meyer C. Surviving Death A Practical Guide To Caring For The Dying and Bereaved. Mystic, CT: Twenty-third Publications: 1991:103.

11. Perez MS, Trevino L, Swasey L. Hispanic experience of organ donation in New York City. Transplant Proceedings 1993; 25:2492-2493.

12. Raphael B. The Anatomy of Bereavement. Northvale, NJ: Jason Aronson Inc: 1983; 5,29,53,59-61,352,389.

13. Reese CD. Please cry with me. Nursing 96. 1996:August:56.

14. Robbins RA, McLaughlin N, Nathan HM. Using self-efficacy theory to predict organ donor card signing. Journal of Transplant Coordination 1991:1:130-136.

15. Shafer T, Kappel D, Heinrichs D. Strategies for success among OPOs: A study of three organ procurement organizations. Journal of Transplant Coordination 1997:7:22-31.

16. Smith SL, Hawke D, Draft J et al. Tissue and Organ Transplantation. St. Louis, MO: Mosby: 1990:84.

17. Verble M, Worth J. Biases among hospital personnel concerning donation of specific organs and tissues: Implications for the donation discussion and education. Journal of Transplant Coordination 1997:7:72-77.

Verble M, Worth J. Handout given at The Donation Conversation and Presentation Skill for Procurement Professionals Seminar in Lexington, KY; Feb. 1998. Von Pohle WR. Obtaining organ donation: Who should ask? Heart and Lung 1996:25:304-309.

Wheeler D, Swasey L. Cultural beliefs in organ donation. Journal of Transplant Coordination. 1996; 4:41-46.

Zunin LM, Zunin HS. The Art of Condolence. New York, NY: Harper Perennial 1991; 11:153-232.

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