‘I'll continue as long as I can, and die when I can't help it’: a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC)

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Abstract

Background

Evidence currently suggests that many people would prefer to die at home. However, optimal end-of-life homecare depends on the patient's ability to express their care preferences, prognostic awareness, complexity of care, concordance of patient/carer preferences and availability of appropriate services/support. This study explores Irish Head and Neck Cancer (HNC) patient and caregivers’ views on end-of-life care (EoLC), an area hitherto little studied.

Methods

Qualitative data were collected using semistructured, one-to-one interviews with HNC patients with therapeutic experience and their nearest caregivers (n=10, 7 patients, 3 carers). Interview topic guide was developed from the PRISMA EoLC survey. Thematic content analysis was employed to interpret findings.

Results

Thematic analysis identified five broad EoLC themes: prognostication, decision making, preferred focus of care/advanced care planning (ACP), preferred place of care/death, perceived barriers/supports to home death. Participants were very willing to discuss most aspects of EoLC, exhibiting no signs of distress. Patients were reluctant to discuss preferred focus-of-care and ACP. This seemed linked to an overly optimistic view of aggressive medical intervention. While carers favoured full patient involvement in decision making, patients were divided between wanting autonomy and those preferring a more passive approach. All expressed a preference for homecare, and most felt they would ideally prefer to die at home. However, decision making was considered a complex process intertwined with risks, responsibilities and commitments to others. Carer burden and symptom control were major concerns.

Conclusions

Normalising discussions on EoLC may benefit those affected by HNC. However, in HNC, this needs to be done alongside discussions regarding potentially life-extending treatment, symptom management and support.

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