Families' Perceptions of Inpatient and Home Hospice Care at End-of-Life FREE

Over the past 10 years, studies of end-of-life care in hospitals and long-term care facilities have described a variety of problems.^1- 2 So it is not surprising that many patients say that they would prefer to die at home rather than in a hospital.^3- 4 Indeed, one national study of end-of-life care found that home hospice care produced higher family ratings of care compared with inpatient care.²

However, the landscape of inpatient care is changing rapidly, and many hospitals have created palliative care consulting services and specialized inpatient palliative care units. It is important to determine whether inpatient palliative care offers a high-quality alternative to home hospice care because a death at home is not possible for all patients. For instance, some patients lack adequate family support, and hospice is not available in all areas. Therefore, the goal of this study was to compare families' perceptions of the quality of end-of-life care provided by hospice in patients' homes with care provided by palliative care teams in an inpatient setting.

Retrospective telephone surveys were conducted with family members using the Family Assessment of Treatment at End-of-life (FATE), a 32-item telephone survey. Families of patients who received inpatient or outpatient care from 1 of 5 Department of Veterans Affairs (VA) medical facilities in the last month of life were eligible to participate.

We examined inpatient and home differences for the overall FATE score and domain scores using the rank sum test, and for single items we used the χ² test. To adjust for site, we used linear regression models for the overall and domain scores and logistic regression for single dichotomous items.

Interviews were completed with families of 769 patients, of whom 347 (45%) died as inpatients with palliative care and 115 (15%) died at home with hospice care. Patients who died at home with hospice care did not differ from patients who died as inpatients with respect to age, ethnicity, or family relationship (spouse vs child vs other). However, the 2 groups differed with respect to site of death.

After adjusting for site, FATE scores were better for inpatients (adjusted mean scores, 61 vs 55; β = 0.06 [95% confidence interval {CI}, 0.02 to 0.10]; P = .007), although families of hospice patients were more likely to report that patients died where they wanted to (96% vs 67%; β = −2.51 [95% CI, −3.45 to −1.55]; P < .001). A particularly large difference was found for patients whose family member had more than 12 years of education (adjusted mean FATE score, 60 vs 49; β = 0.12 [95% CI, 0.05 to 0.18]; P = .001), family members of white patients (adjusted mean score, 62 vs 53; β = 0.06 [95% CI, 0.01 to 0.11]; P = .02), and spouses of patients (adjusted mean score, 63 vs 56; β = 0.06 [95% CI, 0.01 to 0.12]; P = .03).

Although many patients would prefer to die at home,^3- 4 families of patients receiving palliative care in inpatient settings perceived care to be at least as good as that of patients who died at home with hospice care. In addition, families perceived patients' overall care to be better. It is possible that some of these patients had greater needs than a typical home hospice program is able to meet. It is also possible that the substantial burdens that families face in caring for home hospice patients⁵ influence their perceptions of care.

It is important to note that this study was conducted in a VA population, which is atypical of the general US population. Also, VA hospitals are more likely to have palliative care programs compared with other hospitals.⁶ Nevertheless, these data provide important preliminary evidence that palliative care in an inpatient setting can offer a reasonable alternative to care at home.

Correspondence: Dr Casarett, Institute on Aging, Center for Bioethics, Philadelphia VA Center for Health Equity Research and Promotion, 3615 Chestnut St, Philadelphia, PA 19104 (Casarett@mail.med.upenn.edu).

Author Contributions: Dr Casarett had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. Study concept and design: De Sousa, Smith, Ritchie, Rosenfeld, and Casarett. Acquisition of data: Smith, Bailey, Furman, Ritchie, Rosenfeld, Shreve, and Casarett. Analysis and interpretation of data: De Sousa, Smith, Corcoran, Bailey, Ritchie, Shreve, and Casarett. Drafting of the manuscript: De Sousa, Smith, Corcoran, Bailey, Shreve, and Casarett. Critical revision of the manuscript for important intellectual content: De Sousa, Smith, Bailey, Furman, Ritchie, Rosenfeld, Shreve, and Casarett. Statistical analysis: Smith and Casarett. Obtained funding: Shreve and Casarett. Administrative, technical, and material support: De Sousa, Ritchie, and Casarett. Study supervision: De Sousa, Smith, Corcoran, Shreve, and Casarett. Clinical Correlation: Bailey.

Financial Disclosure: None reported.

Funding/Support: This material is based on work supported by the Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development, Health Services Research and Development Service. Dr Corcoran receives support from the Geriatric Academic Career Award (GACA) grant HRSA GACA–K01 HP00084-02 from the Health Resources and Services Administration. Dr Casarett is the recipient of a President's Early Career Award for Scientists and Engineers.

Disclaimer: The content of this research letter does not represent the views of the Department of Veterans Affairs or the US government.