The findings, which reveal subtle but significant differences in perceived quality have the potential to help influence priorities for improvement of quality, patient choice of hospice service provider and reimbursement for these services according to Kathleen Unroe, MD, MHA of the Indiana University Center Aging Research, Regenstrief Institute and IU School of Medicine, who led the study.
The researchers analyzed the results of the Family Evaluation of Hospice Care, a federally mandated quality survey, for 7510 hospice patients age 18 and over for whom electronic medical record data was also available. Survey respondents were more likely to be the spouses or partners of patients who received hospice services at home. Respondents were more likely to be the children of patients who received hospice services at an assisted living facility or nursing home.
"Identifying the appropriate timing for referral to hospice is a challenge for clinical providers and a concern for the patient, family and policymakers," Dr. Unroe said. "A large majority -- 84 percent -- of survey respondents reported that they believed timing of hospice referral had occurred at the right time with family members of nursing home residents being less likely to feel that referral was at the right time and also more likely to feel that patients did not die at the setting of their choice."
Overall, 63 percent of survey respondents rated hospice quality as excellent with hospice care for family members in nursing homes being the least likely to be viewed as excellent.
Nursing home patient families also indicated that they lacked information on pain medications and treatment although they didn't see this as a problem. A perceived absence of information is not surprising, said Unroe, because family members usually have a less hands-on role in the nursing home than in the other two settings. She adds that it may be difficult for family members to "tease out" what part of the care experience they are unhappy with -- routine nursing home care or the actual hospice care.
In a previous study, published in March 2017, Dr. Unroe and colleagues reported that they had found only minimal differences in the intensity of hospice services provided in nursing homes as compared to hospice services provided to patients in assisted living facilities or their homes. However, the mix of services did vary by site type.
"While service intensity is similar in all three settings, we know from our new work that patient and family needs differ by setting," said Dr. Unroe. "Unlike previous studies of family perception of hospice care, we report on the characteristics of patients whose families completed the evaluation survey and those who did not. And we also factor in details on the survey respondents themselves. For example, white and female family members were the most likely to complete the quality of care survey.
"In addition to providing actionable information to policy makers, clinicians, and additional interested parties, our findings may help hospice providers and others to tailor communication based on patient setting. As our population ages and more individuals receive hospice at home, in assisted living facilities and in nursing homes this is of critical importance."