Changes in relatives’ perspectives on quality of death, quality of care, pain relief, and caregiving burden before and after a region-based palliative care intervention

• Published in: Journal of pain and symptom management 2016-11, Vol.52 (5), p.637-645
• Main Authors: Maeda, Isseki, M.D., PH.D, Miyashita, Mitsunori, R.N. Ph.D, Yamagishi, Akemi, R.N., C.N.S., Ph.D, Kinoshita, Hiroya, M.D, Shirahige, Yutaka, M.D, Izumi, Noriko, M.D, Yamaguchi, Takuhiro, Ph.D, Igarashi, Miyuki, R.N, Kato, Masashi, M.D, Morita, Tatsuya, M.D
• Format: Article
• Language: English
• Subjects: Aged; Aged, 80 and over; Anesthesia & Perioperative Care; Bereavement; bereavement survey; Cancer; Caregiver burden; Caregivers; Caregivers - psychology; Caregiving; Cost of Illness; Death; Death & dying; Families & family life; Family - psychology; Female; Grief; Home Care Services; Home health care; Hospice care; Hospitals; Humans; Intervention; Male; Middle Aged; Neoplasms - therapy; Pain; Pain Management; Pain Medicine; Palliative Care; Place of death; Quality of care; quality of death and dying; Quality of Health Care; Quantitative analysis; Regional palliative care; Relatives; Treatment Outcome
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2016.03.022

Abstract Context A region-based palliative care intervention (OPTIM study) increased home death, access to specialist palliative care, quality of care, and quality of death and dying. Objectives To examine changes in palliative care outcomes in different care settings (hospitals, palliative care units, and home) and obtain insights into how to improve region-level palliative care. Methods The intervention program was implemented between April 2008 and March 2011. Two bereavement surveys were conducted before and after intervention involving 4,228 family caregivers of deceased cancer patients. Family-perceived quality of care (range: 1–6), quality of death and dying (1–7), pain relief (1–7), and caregiver burden (1–7) were measured. Results Response rates were 69% (preintervention) and 66% (postintervention), respectively. Family-perceived quality of care (adjusted mean 4.89, 95% CI 4.54–5.23) and quality of death and dying (4.96, 4.72–5.20) at home were the highest and sustained throughout the study. Palliative care units were at the intermediate level between home and hospitals. In hospitals, both quality of care and quality of death and dying were low at baseline but significantly improved after intervention (quality of care: 4.24, 4.13–4.34 to 4.43, 4.31–4.54, p=0.002; quality of death and dying: 4.22, 4.09–4.36 to 4.36, 4.22–4.50, p=0.012). Caregiver burden did not significantly increase after intervention, regardless of place of death. Conclusions The dual strategies of transition of place of death to home and improving quality of care in hospitals should be recognized as important targets for improving region-level palliative care.