The importance of family caregiving to achieving palliative care at home

Abstract

Rationale: The primary setting of palliative care has shifted from inpatient care to patients’ residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. Patient concerns: In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. Diagnoses: The patient was diagnosed with stage IV breast cancer. Interventions: The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. Outcomes: The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home.Lessons: Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients’ end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population ageing and social isolation may continue to advance worldwide.