Identity Disclosure Between Donor Family Members and Organ Transplant Recipients: A Description and Synthesis of Australian Laws and Guidelines.

INTRODUCTION: The disclosure of information that identifies deceased organ donors and/or organ transplant recipients by organ donation agencies and transplant centres is regulated in Australia by state and territory legislation, yet a significant number of donor family members and transplant recipients independently establish contact with each other. AIM: To describe and synthesize Australian laws and guidelines on the disclosure of identifying information. METHOD: Legislation and guidelines relevant to organ donation and transplantation were obtained following a search of government and DonateLife network websites. Information about the regulation of identity disclosure was extracted and synthesised using a process guided by Walt and Gilson's (1994) policy analysis framework. FINDINGS: Nineteen documents were examined. Six guidelines refer to and were consistent with current legislation. Four documents did not address identity disclosure. All jurisdictions prohibit healthcare professionals from disclosing identifying information. In three states, the prohibition extends to all members of the public including donor family members and transplant recipients. CONCLUSION: Restrictions on identity disclosure have implications for public promotion of donation and transplantation where sharing of stories and images of organ donors and transplant recipients is common. Further research is required to understand the perspective of donor family members, transplant recipients, and healthcare professionals impacted by the current laws.

Identity disclosure between donor families and organ transplant recipients: an integrative review of the international literature.

Anonymity of deceased organ donation is a legal requirement in many international jurisdictions where legislation prohibits health professionals from disclosing identifiable information about donors, recipients or their families. Written correspondence between donor families and transplant recipients that is coordinated by healthcare professionals must remain anonymous. Internationally, an increasing number of donor families and transplant recipients have advocated for law reform and policy amendment to enable the exchange of identifiable written correspondence and/or face-to-face meetings. This paper aims to synthesise and critically evaluate published, peer-reviewed literature on the perceptions, benefits and challenges of identifiable communication or anonymity between donor families and organ transplant recipients in the international context. Analysis of the findings revealed two major themes: (1) views held by donor families, transplant recipients and healthcare professionals towards identity disclosure in the context of organ donation are diverse across and within groups (2) there are benefits and burdens associated with connecting donor families and transplant recipients through written correspondence. Less is known about the impact of face-to-face meetings between donor families and transplant recipients. However, what is known is that for some donor families, meeting with the transplant recipient(s) may provide a range of positive emotions.

Organ donation within the intensive care unit: A retrospective audit.

BACKGROUND: Despite many Australians supporting organ donation, national posthumous organ donation rates have not increased as expected over the last three decades. Little is known about the barriers to organ donation for patients in intensive care that meet the criteria for organ donation. OBJECTIVE: The aim of this study was to describe the characteristics of patients identified as potentially suitable for organ donation and to explore the variables associated with the success, or failure, of solid organ donation within the context of an Australian public hospital intensive care unit (ICU). METHODS: A retrospective audit examined electronic records of 280 potential organ donors aged 18-80 years, admitted into the ICU between 1 July 2012 and 30 June 2016. Data extracted from three separate electronic hospital databases were amalgamated for analysis. RESULTS: Of the 280 potential organ donors identified, conversations with families of 182 (65%) patients resulted in their agreement to organ donation. Consent to organ donation was most often provided by the patient's spouse (65, 35.7%); however, only 63.7% (n = 116) were successful organ donors. The remaining 36.3% (n = 66) of patients did not donate organs for medical reasons. Compared with those who did not donate, the typical organ donor was significantly younger (M 49.9 years, p = 0.020), Australian-born (p = 0.031), and had a shorter length of ICU stay (M 64.9 h, p = 0.002). The most frequently donated organs were kidneys (103, 88.8%), lungs (59, 50.9%), and livers (52, 44.8%). CONCLUSION: This study provided insights into patient, family, and organisational factors contributing to the success of organ donation outcomes in the ICU. Two factors that adversely impacted donation outcomes were the following: (1) the family did not consent to organ donation on behalf of the patient and (2) consent was provided, but donation did not proceed for medical reasons. Although the focus on the consenting process has been raised, this study highlights the additional impact of medical suitability on rates of organ donation. Family members may experience significant disappointment after consent that may have repercussions on their health and also future donation considerations. This study also highlighted some deficiencies in the databases that, if addressed, could better inform organisational processes in the consent and support of those making decisions about consent.