A Systematic Review on Improving the Family Experience After Consent for Deceased Organ Donation

Introduction The demand for transplanted organs outweighs the supply and intensifies the need to improve care for donor families. Studies have shown inadequate care by hospital staff can increase posttraumatic stress disorder and complicated grief in these families but putting solutions into practice remains slow. Objective This systematic review identified factors that relieve or contribute to distress for deceased organ donor families in the time since the decision to donate. Additionally, it provides insights into potential improvements at public health, educational, and health system levels to address these deficiencies. Methods Search terms included organ don*, famil* or relati*, family-centered, grief, and experience*. The search covered original research articles, published in English, from 2014 to July 2021. Results Four key themes emerged among the studies. (a) Understanding factors that affect the emotional aftermath can help staff prevent posttraumatic stress disorder and complicated grief. (b) Improving communication by hospital staff includes: avoiding medical jargon, providing adequate audio and visual explanations, and understanding that the next of kin is struggling to comprehend the tragedy and the information they are being told. (c) End-of-life care such as memory making, bringing in palliative care resources, and parting ceremonies can assist with familial coping as well as staff interactions. (d) Families want more support in the months and years after the donation decision. Discussion Changes at multiple levels can improve the quality of care for families whose relative gave the gift of life, but more research and translation into practice are needed.