Grief Symptoms in Relatives Who Experienced Organ Donation Requests in the ICU

Kentish-Barnes, Nancy; Chevret, Sylvie; Cheisson, Gaëlle; Joseph, Liliane; Martin-Lefèvre, Laurent; Larbi, Anne Gaelle Si; Viquesnel, Gérald; Marqué, Sophie; Donati, Stéphane; Charpentier, Julien; Pichon, Nicolas; Zuber, Benjamin; Lesieur, Olivier; Ouendo, Martial; Renault, Anne; Maguet, Pascale Le; Kandelman, Stanislas; Thuong, Marie; Floccard, Bernard; Mezher, Chaouki; Galon, Marion; Duranteau, Jacques; Azoulay, Élie

doi:10.1164/rccm.201709-1899oc

Cited by 39 publications

(69 citation statements)

References 36 publications

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“…Knowing these factors will help ICU teams improve the family's experience. Other studies show a similar prevalence of complicated grief symptoms at 6 months, ranging between 20% and 45% for complicated grief and 26% and 44% for PTSD . These studies show that perceptions of the quality of EOL care are significantly associated with complicated grief and PTSD, such as dissatisfaction with information and communication, unreasonable care, perception that the deceased person had not achieved a sense of completion about his or her life, presence at time of death, or discordance between family members' preferences for decision‐making and their actual decision‐making roles .…”

Section: Grief and Bereavementsupporting

confidence: 51%

“…Another important aspect of bereavement research in this context is the very high response rates when using telephone follow up. Indeed, rates vary between 78% and 90% at 1 month, 68% and 87% at 3 months, and 60% and 80% at 6 months . Not only are family members keen to participate for altruistic reasons (help other family members, improve practices), but they also participate because the follow‐up calls are experienced as a form of support, an opportunity to express themselves and to share difficult emotions, as well as a means to not feel abandoned .…”

Section: Research Follow‐up Calls: Combining Research and Supportmentioning

confidence: 99%

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Bereavement care and research in the intensive care unit: Opportunities and challenges

Kentish‐Barnes

2019

Nursing in Critical Care

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Section: Grief and Bereavementsupporting

confidence: 51%

Section: Research Follow‐up Calls: Combining Research and Supportmentioning

confidence: 99%

Bereavement care and research in the intensive care unit: Opportunities and challenges

Kentish‐Barnes

2019

Nursing in Critical Care

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“…Interestingly these negative impacts were due to factors that could be improved in the ICU setting. A study assessing grief symptoms [64] in a large number of relatives of brain-dead patients for whom organ donation was discussed in the ICU showed that one month after the patient's death, relatives of non-donors describe a significantly more burdensome experience: they were more dissatisfied with communication, more often shocked by the request and more often found the decision difficult. Interestingly, decisional regret more often occurs when the decision was to decline donation [65] and when organ donation was raised before FMs were informed of the patient's death [66].…”

Section: Impact Of Organ Donation On Post-icu Family Outcomesmentioning

confidence: 99%

“…families to give meaning to the patient's death. Research shows that not understanding brain death is associated with an increased risk of developing complicated grief [64]. A small randomized controlled trial showed that family presence during brain death evaluation improved understanding of brain death with no apparent adverse impact on psychological well-being [67].…”

Section: Quality Of Communication Is Important: Understanding the Caumentioning

confidence: 99%

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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“…Fulton et al were the first to explore the impact of organ donation on the grieving process and found that solace and comfort were reported by the majority . However, this seminal research and subsequent investigations have largely focused on psychological outcomes in the context of DBD despite implementation of the cDCD pathways of care. Similarly, little is known about the family experiences of cDCD at the time of a sudden bereavement in the ICU.…”

Section: Introductionmentioning

confidence: 99%

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

Walker

Sque

2019

Nursing in Critical Care

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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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Grief Symptoms in Relatives Who Experienced Organ Donation Requests in the ICU

Cited by 39 publications

References 36 publications

Bereavement care and research in the intensive care unit: Opportunities and challenges

Bereavement care and research in the intensive care unit: Opportunities and challenges

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

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

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