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Relatives' Experiences of Circulatory Death Following Out‐of‐Hospital Cardiac Arrest and Their Hypothetical Perspectives on Organ Donation: A Qualitative Study

ABSTRACT

Aims

To explore relatives' experiences of the circulatory death of a family member following out-of-hospital cardiac arrest and to explore their hypothetical perspectives on being asked to decide about organ donation in this situation. This study forms part of a broader initiative undertaken to assess the prerequisites for implementing uncontrolled donation after circulatory death in Sweden with a focus on ethical issues.

Design

A qualitative design, using semi-structured interviews with open-ended questions.

Methods

Data were collected in Sweden between March 2024 and September 2024 and analysed using reflexive thematic analysis with an inductive, descriptive approach. Included were 13 bereaved relatives, four men and nine women.

Findings

The analysis generated three themes: ‘Fluctuating between hope and despair’, which describes relatives' experiences of their family member's sudden cardiac arrest; ‘Exposed to vulnerability’, concerning their experiences of death and their perspectives on reasoning about the deceased person's wishes regarding donation; and ‘Balancing a major life change’, which involves experiences of facilitators and barriers to dealing with the loss.

Conclusions

Awareness of the deceased family member's wishes regarding organ donation facilitates relatives' ability to support the deceased's known or presumed wishes. Compassionate and communicatively competent healthcare professionals influence relatives' capacity to reason about the deceased's wishes and cope with their experience of loss. Ensuring sufficient time for goodbyes and providing follow-up may facilitate emotional processing and should be considered when implementing uncontrolled donation after circulatory death.

Implication for the Profession

Policies and clinical practice should ensure that relatives are adequately informed and supported in reasoning on their family members' wishes regarding organ donation. To achieve this, nurses and other healthcare professionals require training in compassionate and empathetic communication strategies. Such training is essential both for guiding relatives through reasoning about their family preferences and for providing emotional support during the grieving process.

Impact

What is already known? ○

Organ donation after sudden death in out-of-hospital cardiac arrest is a complex process that raises ethical issues concerning both the timing and the content of conversation with the deceased's relatives, as well as the relatives' capacity to reason about the deceased's wishes in the context of sudden death.

Knowing the wishes of the deceased person, personal beliefs, and receiving clear, direct, and honest information from nurses and other healthcare professionals prepares relatives to reason about the deceased's known or presumed wishes regarding organ donation.

What were the main findings? ○

The quality of nurses' and healthcare professionals' communicative competence and their behaviours influence relatives' ability to reason and reflect on organ donation.

Factors that facilitate family members' experiences of donation following out-of-hospital cardiac arrest and death include awareness of the deceased's wishes regarding organ donation, being able to see with their own eyes that their family member is dead, and having sufficient time to say farewell.

Follow-up from health care services could have an impact on relatives' experiences and their processing of loss.

Where and on whom will the research have an impact? ○

This research has an impact on organ donation services, pre-hospital emergency care, and emergency department operations. It can assist nurses and physicians in planning ethical and family-centred care in cases of out-of-hospital sudden death and uncontrolled donation after circulatory death.

Reporting Method

COREQ-checklist.

Patient or Public Contributions

No patient or public involvement in design, conduct or reporting.

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