Food or medicine: ethnic variations in perceptions of advanced cancer patients and their caregivers regarding artificial hydration during the last weeks of life.

PURPOSE

To identify whether advanced cancer patients receiving home hospice care and their primary caregivers view artificial hydration (AH) as food or medicine, and the demographic and clinical factors influencing these perceptions.

METHODS

Participants were enrolled in a randomised, double-blind controlled trial examining the efficacy of AH in cancer hospice patients. In-depth interviews at days 1 and 4 of study enrolment explored the meanings attributed to AH at the end of life. Responses to the question, 'Are these fluids more like food or more like medicine?' were categorised as 'food', 'medicine', 'both' or 'other'. χ(2) analyses were conducted with data from 122 interviews (54 patients and 68 caregivers) to identify differences between patients and caregivers, and by gender, age, ethnicity and caregiver relationship. Predictors of perceptions were identified using logistic regression analysis.

RESULTS

Overall, 47 participants (38%) understood the fluids to be more like food, 41 (34%) as medicine, 17 (14%) as both, and 17 (14%) as 'other'. Ethnic minority participants (n=34, 66%) were significantly more likely than non-Hispanic European Americans (n=30, 42%) to view AH as food, or both as food and medicine (p=0.034). Ethnic differences persisted in the final regression model (OR 2.7; 95% CI 1.3 to 5.7, p=0.010). No significant differences were detected between patients and caregivers, or across gender, age, caregivers' relationship to the patients, group assignment, disease severity or cancer type.

CONCLUSIONS

AH was perceived as food/nutrition by many cancer patients and caregivers in the study, particularly among ethnic minorities. This perception may lead to greater distress if fluids are discontinued or withheld. Asking patients/caregivers about their AH perceptions may enhance patient/provider communication and culturally appropriate end-of-life care.