Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan

There is a worldwide common preference for dying at home. However, death at home does not come without significant challenges and potential consequences for families. Given the interactive nature of decisions regarding the place of death, the family's perspective is important and needs to be investigated. The purposes of this study were to compare (1) Taiwanese terminally ill cancer patients' and their family caregivers' preferences for the patient's place of death; and (2) important factors that are considered in choosing the preferred place of death from both points of view. A total of 617 dyads of terminally ill cancer patients and their family caregivers were surveyed. The majority of both terminally ill cancer patients and their family caregivers preferred to die at home (61.0% and 56.9%, respectively). A higher proportion of the family caregivers indicated a preference for hospital death for the patients. There was a moderate association between the two respondents in the preferences of place of death. Results underscore discrepancies between patients and their families in the importance given to cultural concerns, quality of health care, worries of being a burden to others, lack of availability of families, relationships with health care providers, and being surrounded by the home environment. Effective interventions need to be developed which can lighten the caregiving burden and help families retain dying patients at home, avoid unnecessary re-hospitalizations and unfavorable hospital deaths, and improve accordance with the patient's wishes.