Bereaved family members' perceptions of end-of-life cancer care in nursing homes, hospices with home care, and acute care hospitals

Abstract

8052 Background: Nursing homes (NH) are increasingly the last place of care (LPOC) and site of death for persons with cancer. Little is known about the quality of care in NH for terminally ill cancer patients. Based upon a study of dying experiences, we examined the quality of end-of-life cancer care (EOLCC) for patients in NH, at home with hospice, and in acute care hospitals. Methods: A national mortality follow-back survey was conducted via telephone interviews with a family member or knowledgeable informant of the decedent (n=1578, 65% cooperation rate). Interviewers asked if health care workers provided the desired physical comfort and emotional support to the dying person, treated the dying person with respect, supported shared decision-making, coordinated care, and provided emotional support to the family. Chi-Square test was used to examine bereaved family members' perceptions of the LPOC. Results: 427 of 1578 patients (27.1%) died from cancer. For the LPOC, 19.3% died at a NH (41.8% home with hospice, 38.9% hospitals). Decedents in NH had greater unmet needs with pain and anxiety (p<0.1). 29.8% of respondents felt that NH staff had insufficient knowledge of the patient's medical history to provide highest quality EOLCC (7.2% home with hospice, 10.1% hospitals, p<.01). 32% of respondents stated that NH staff did not treat the patient with respect (2.6% home with hospice, 20.6% hospitals, p<.01). About 50% of respondents for both NH and hospitalized patients felt they were inadequately educated by staff about the dying process (30.6% home with hospice, p=.01). Respondents' overall satisfaction was lowest for NH (44% “excellent”) compared to home with hospice and hospitals (67.0%, 58.4%, p<.01). Conclusions: NH were consistently rated less favorably by bereaved family members than were home with hospice services and acute care hospitals for providing quality EOLCC. While challenging, opportunities to improve EOLCC should be sought, recognized and pursued in all settings. Oncologists have an important and central role in coordinating these efforts. Author Disclosure Employment or Leadership Consultant or Advisory Stock Ownership Honoraria Research Funding Expert Testimony Other Remuneration Robert Wood Johnson Foundation