Care Associated With Satisfaction of Bereaved Family Members of Terminally Ill Cancer Patients With Dyspnea: A Cross-sectional Nationwide Survey

• Published in: Journal of pain and symptom management 2021-10, Vol.62 (4), p.796-804
• Main Authors: Yamamoto, Sena, Arao, Harue, Aoki, Miwa, Mori, Masanori, Morita, Tatsuya, Kizawa, Yoshiyuki, Tsuneto, Satoru, Shima, Yasuo, Masukawa, Kento, Miyashita, Mitsunori
• Format: Article
• Language: English
• Subjects: Advanced cancer; Bereavement; Breathlessness; Cancer; Caregivers; Compassionate care; Death & dying; Dyspnea; Family; Grief; Hospitalized; Oxygen; Palliative care; Polls & surveys; Quality of care; Questionnaires; Relatives; Response rates; Sympathy; Terminal care
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2021.03.023

Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families’ satisfaction with care for terminal dyspnea, and explore determinants contributing to families’ satisfaction. A nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families. In total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%–89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%–69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85–19.36 and 15.37, 5.00–47.25, respectively). Dedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.