Bereaved donor families' experiences of organ and tissue donation, and perceived influences on their decision making

Sque, Magi; Walker, Wendy; Long-Sutehall, Tracy; Morgan, Myfanwy; Randhawa, Gurch; Rodney, Amanda

doi:10.1016/j.jcrc.2018.01.002

Cited by 44 publications

(66 citation statements)

References 28 publications

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“…This is a novel observation, but has been hinted at in existing research. 34 The current study supports the use of shared decisionmaking with ICU staff and families when considering donation, [9][10][11][12] and suggests that efforts to motivate and engage ICU staff in donation may be more effective if framed in terms of how it benefits families. Conversely, policies and practices that increase donation activity but negatively impact families (e.g., withdrawal of life support in the operating room to shorten ischemic time) are unlikely to receive support from ICU staff.…”

Section: Suggested Practices Align With Those Reported Elsewheresupporting

confidence: 64%

“…Organ donation rates vary across comparable intensive care units (ICUs), 1 suggesting that donation processes differ between ICUs, despite the existence of clinical guidelines for donor care, 2,3 and the coordination efforts of organ donation organizations (ODOs). Aiming to improve donation rates, many studies have examined donor family [4][5][6][7][8][9] and ICU staff [10][11][12] experiences with donation decision-making. Comparatively fewer studies have examined the wider process of donor care in the ICU.…”

Section: Résumémentioning

confidence: 99%

See 1 more Smart Citation

A mixed-methods study of organ donation in the intensive care unit: 22 actionable practices to improve organ donation

Oczkowski

Arnold

Centofanti

et al. 2019

Can J Anesth/J Can Anesth

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Section: Suggested Practices Align With Those Reported Elsewheresupporting

confidence: 64%

Section: Résumémentioning

confidence: 99%

A mixed-methods study of organ donation in the intensive care unit: 22 actionable practices to improve organ donation

Oczkowski

Arnold

Centofanti

et al. 2019

Can J Anesth/J Can Anesth

View full text Add to dashboard Cite

“…The long length of time for donation is high among the reasons for families of eligible cDCD patients choosing to decline consent/authorization . Sque et al identified family distress because of watching and waiting for death to occur. Similarly, discomfort regarding prolonged dying while seeking potential recipients was a source of discomfort for parents who consented to donate their child's organs after circulatory determination of death .…”

Section: Case Analysis and Discussionmentioning

confidence: 99%

“…Studies involving families of cDCD donors have shown a need for reassurance that their relative will be cared for with respect both during and after the removal of organs and/or tissues for donation . The family were asked if they would like to wait at the hospital to see R following organ and tissue donation surgery.…”

Section: Case Analysis and Discussionmentioning

confidence: 99%

“…This case study critically examines the phenomenon of cDCD in intensive care through the lens of a donor family that participated in a UK national study of bereaved families' experiences of organ and tissue donation (DBD and cDCD donors) . Ethical approval to carry out the study was obtained from the UK Health Department's National Research Ethics Service, Reference 11/WM/0313.…”

Section: Aimmentioning

confidence: 99%

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Family bereavement: A case study of controlled organ donation after circulatory death

Walker

Sque

2019

Nursing in Critical Care

Self Cite

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Deceased organ donation represents a major source of organs for human transplantation practice. In the United Kingdom, as well as other parts of the world, donation after circulatory death accounts for a proportion of all deceased organ donors. Organ and tissue donation emotively takes place in the context of dying, death and bereavement, yet little is known about the family experience of donation after circulatory death. This paper presents a case study of the phenomenon of controlled donation after circulatory death in intensive care. We present a critical analysis of care processes through the lens of a British donor family who participated in a national study of organ and tissue donation. Anonymized family quotes are applied to illustrate specific case issues, and with reference to relevant national guidance and international research. The case portrayed intimate details of the moment in time when the family experienced the potential for controlled donation after circulatory death, factors that appeared to influence family consent and the perceived expectations and outcomes arising from the donation decision. Case analysis demonstrated local compliance with best practice guidance and compassionate end-of-life care while supporting organ retrieval. Caring for the grieving family of potential organ donors requires sensitivity and skill. Of importance is a sound professional knowledge and understanding of the clinical care pathway, together with effective teamwork, optimal communication, family and staff support. Further research is required to determine the impact of controlled donation after circulatory death on family grief and bereavement. K E Y W O R D S adult intensive care, bereavement, end-of-life care, families, organ donation

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A narrative review of family members’ experience of organ donation request after brain death in the critical care setting

et al. 2019

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Family members of critically ill patients suffer from high levels of anxiety and depression in the ICU, and are at risk of developing post-ICU syndrome following ICU discharge. In the case of brain death, and potential organ donation, the family is at the center of the decision process: within a limited time frame, the family will be informed that the patient is brain dead and will be approached about potential organ donation. Family experience with organ donation has been the topic of several research papers allowing to gain knowledge about family members' experience of organ donation, emphasizing specific needs, adequate support and pointing out gaps in current delivery of family-centered care. In this review, experts clinicians and researchers present the various legal systems regarding family implication in organ donation decisions; describe factors that influence the decision-making process; highlight family perspectives of care and respect for potential donors in the ICU environment; describe the impact of organ donation discussions and decisions on post-ICU syndrome; and suggest communication skills and support to be developed in the future. A research agenda for the next decade is also encouraged. Overall, challenges remain and concern all persons involved in the process, ICU doctors and nurses, the organ procurement organization, family members and, in some cases, the patients themselves. Looking at the big picture will provide opportunities for further improvements.

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Bereaved donor families' experiences of organ and tissue donation, and perceived influences on their decision making

Abstract: The influence of temporality on donation-decision making is worthy of consideration in the planning of future education, policy, practice, and research for improved rates of family consent to donation.

Cited by 44 publications

References 28 publications

A mixed-methods study of organ donation in the intensive care unit: 22 actionable practices to improve organ donation

A mixed-methods study of organ donation in the intensive care unit: 22 actionable practices to improve organ donation

Family bereavement: A case study of controlled organ donation after circulatory death

A narrative review of family members’ experience of organ donation request after brain death in the critical care setting

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