5 Caregiver views and expectations about the use of artificial hydration in the management of dying people with advanced cancer: a questionnaire study

Background

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.

Aim

To examine caregivers’ beliefs, experiences and information needs about AH use in people dying with advanced cancer.

Methods

Questionnaire study of the caregivers of people with advanced cancer, who were participants on a research study (evaluating the association between hydration status with clinical cancer outcomes). Caregivers were recruited from 3 UK study sites, consisting of 2 hospices and 1 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.

Conclusion

Our study provides information about caregivers’ views and expectations of the use of AH in dying cancer patients. Researchers should explore how healthcare professionals can better identify and address unmet information needs of caregivers, concerning the use of AH in the dying.