Introduction Evidence for the use of artificial hydration (AH) in people dying with cancer is inconclusive, which creates challenges for healthcare professionals. These situations can be distressing for family caregivers, who may have unmet information needs. Better understanding of caregiver perspectives about AH in the dying, can potentially help healthcare professionals to identify information needs to improve support for caregivers.
Aims To examine caregivers’ beliefs, experiences and information needs about AH use in people dying with advanced cancer.
Methods Questionnaire study of caregivers for people with advanced cancer, who were participants in a research study which was evaluating hydration status, and its association with symptoms, in advanced cancer. Caregivers were recruited from three UK study sites, consisting of two hospices and one hospital palliative care inpatient unit.
Results Fifty-two caregivers participated. Most participants were female (N=38, 73.1%) and aged between 50–59 (N=12, 23.1%) and 60–69 (N=13, 25%). Most participants (N=33, 63.5%) said they were not aware of the term ‘artificial hydration’. Most (N=35, 67.3%) believed that AH represented good care for the patient, with the majority stating that AH improved thirst (N=33, 63.5%) and dry mouth (N=30, 57.7%). Most participants did not believe AH affected prognosis, with 11 (21.2%) stating that AH prolonged life and 8 (15.4%) indicated that prognosis would be shorter without AH. Most expected AH to be available for patients in hospitals (N=42, 80.8%), hospice (N=43, 82.7%), nursing home (N=37, 71.2%) and home (N=31, 59.6%) settings. Most participants believed patients had the right to demand (N=39, 75%) or refuse (N=48, 92.3%) AH in the dying phase.
Conclusions Our study provides information about caregivers’ views and expectations of the use of AH in dying cancer patients. Further work should explore how healthcare professionals can better identify and address unmet information needs of caregivers, concerning the use of AH in the dying.
Impact Understanding caregivers expectations about hydration assessment and managent in advanced cancer can inform development of resources and communication strategies to provide practical support to caregivers.
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