Maeda, I., Miyashita, M., Yamagishi, A., Kinoshita, H., Shirahige, Y., Izumi, N., . . . Morita, T. (2016). 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. Journal of Pain and Symptom Management, 52, 637–645. 

To explore the effect of a previously developed Japan Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) intervention on palliative care outcomes (quality of patient death and dying, family views on patient quality of care and pain control, and caregiver burden) in hospital, home, and palliative care unit settings

The OPTIM intervention focused on enhancing Japanese regional medical providers’ palliative knowledge and skills via distributions of manuals and interactive workshops and incorporating palliative care teams in educational outreach to community patients and families. The intervention also focused on holding interdisciplinary palliative care conferences and providing consumer-based information and programs on palliative care to improve regional oncologic comfort. Patients and caregivers from 23 hospitals and home-care clinics completed four questionnaires in a mailed survey sent before and following the intervention.

• N = 2,247    
• AGE: 72% aged 69 years or younger (no mean age reported)
• MALES: 29.65%, FEMALES: 70.35%
• CURRENT TREATMENT: Other
• KEY DISEASE CHARACTERISTICS: Diverse cancers (lung/gastrointestinal were most common) to support patient terminal illness 
• OTHER KEY SAMPLE CHARACTERISTICS: Caregivers were adults, able to complete questionnaires, and did not have severe emotional distress. Two different groups of caregivers responded to pre- and postintervention surveys.

• SITE: Multi-site   
• SETTING TYPE: Multiple settings    
• LOCATION: Japan

• PHASE OF CARE: End-of-life care
• APPLICATIONS: Palliative care

Pre-/postdesign

• Care Evaluation Scale to measure 10 domains of family-perceived quality of patient care
• Good Death Inventory to measure 18 domains of a good death in Japanese patients with cancer, included one item to measure patient pain relief 
• Caregiving Consequences Inventory to measure care burden

Significant differences (p < 0.01) were reported in quality of patient care in the home, palliative care unit, and hospital, with highest quality of care in the home. Overall, quality of care improved significantly (p = 0.04) from preintervention to postintervention in hospitals. Similar improvements at a significant level (p = 0.012) occurred in the quality of death and dying in hospitals, although this place had the lowest score at baseline compared to palliative care units and the home. No significant differences in patient pain relief occurred pre- and postintervention, nor did caregiver burden significantly increase postintervention in any of the three settings of patient death. Quality of care measures in the hospital and in some measure domains in the palliative care unit increased significantly postintervention (p < 0.05).

Caregiver quantitative feedback postintervention showed the most improvement in quality of care and of death and dying in hospitalized patients, with additional improvement in palliative care units deemed as high quality by caregivers preintervention. Caregivers consistently viewed home care as highest in quality pre- and postintervention. Family burden of care did not increase in the three settings related to the intervention. With most patient deaths in hospitals in Japan and many countries, additional efforts to improve hospital quality of care may smooth the transition of dying patients to their homes for improved family well-being.

• Risk of bias (no control group)
• Risk of bias (no blinding)
• Risk of bias (sample characteristics)
• Unintended interventions or applicable interventions not described that would influence results
• Key sample group differences that could influence results
• Findings not generalizable
• Only definition of patient status was “terminally ill”
• Caregivers required to provide data in retrospective manner when recall may have been difficult
• Response rate of three groups differed to affect measurement of quality of care and quality of patient death and dying.
• Definition of family caregiver unclear in article (more than 92% of caregivers were spouses or children of the patient)
• Significant differences in age of patients and caregivers existed in preintervention and postintervention groups, and similar significance existed in place of death in both groups.
• Specifics of intervention unclear because of earlier publication of that information

Current emphasis on the delivery of high quality care to patients and their families in a variety of end-of-life settings mandates nursing attention to the feedback of patients who are terminally ill and their caregivers to meet that goal. Additional research and evidence from clinical practice offer opportunities to gain that feedback to improve care at the end of life for patients with cancer and their families.