Palliative Care Eligibility, Symptom Burden, and Quality-of-Life Ratings in Nursing Home Residents

By 2030, it is projected that 40% of all US deaths will occur in nursing homes (NHs).¹ Despite an estimated $136 billion spent each year, NH care has been associated with poor symptom control, low family satisfaction, and burdensome and unnecessary care transitions in the final months of life.^1-3 Little is known about this vulnerable population’s specific palliative care (PC) needs. As part of a PC quality initiative, we sought to identify which NH residents were eligible for PC services, describe their characteristics, and better understand resident and family perceptions regarding symptoms and quality of life.

Between January and May 2015, all 228 residents in 3 northern California NHs were screened for PC eligibility via staff interview and medical record review using the INTERACT (version 3.0; MED-PASS) tool, Identifying Residents Who May Be Eligible for Hospice or Palliative Care/Comfort Order.⁴ Research assistants abstracted medical record and Minimum Data Set (MDS) data for all PC-eligible residents (n = 157). A convenience sample of PC-eligible cognitively intact residents (n = 17) and their families (n = 28) were administered the Quality of Life at the End of Life (QUAL-E) instrument and completed semistructured interviews. Only the QUAL-E findings are presented herein. The University of California, San Francisco, institutional review board deemed this to be quality improvement activity and did not require review.

Sixty-nine percent (157 of 228) of NH residents were PC eligible (Table 1). The mean age of PC-eligible residents was 80.6 years. Forty-seven percent had a diagnosis of Alzheimer disease/dementia, and almost half had had a hospital readmission in the past year. None were receiving PC, and only 2 were receiving hospice care. Only 3.8% had an MDS-documented prognosis of less than 6 months’ survival. Virtually all (98.7%) had a Physician Order for Life-Sustaining Treatment (POLST) completed: 47.7% preferred full treatment, 27.5% requested selective or limited treatment, and 24.8% desired comfort-focused treatment. Despite high POLST completion rates, interviews with the resident or family subsample revealed that few actually recalled having an advanced care planning discussion or signing the POLST.

In our QUAL-E substudy, 52.9% (9 of 17) of residents cumulatively rated their overall quality of life as fair to very poor. Sixty-three percent believed that physical symptoms were quite a bit or completely important to their overall quality of life. Residents reported higher symptom burden than was perceived by families: 64.3% of families thought that their loved ones usually or always experienced bothersome symptoms in the past week, whereas 70.6% of residents reported usually or always experiencing bothersome symptoms in the past week (Table 2). A higher proportion of residents than families also rated symptoms as severe or very severe (82.3% vs 60.8%).

Our work suggests that, although most NH residents report high symptom burden and are eligible for PC services, they are not receiving any formal interdisciplinary PC. Furthermore, only 3.8% of residents had an MDS-documented prognosis of less than 6 months’ survival, an unlikely scenario considering the health status of these residents. Only 1.3% (2 of 157) were enrolled in hospice, even though a 6-month prognosis should trigger hospice referral. This finding suggests that accurate assessment of prognosis is likely not occurring; as a result, an opportunity for enhanced discussion of goals of care is missed.

Increasing access to PC for NH residents is critical given mounting evidence confirming that PC care in the NH setting is associated with improved care quality and satisfaction, enhanced symptom management, and fewer emergency department visits, particularly when such care is initiated earlier in the disease course.^5,6 Early identification of PC-eligible residents can help health systems target efforts designed to meet documented patient preferences, improve symptom management, ensure timely referral to hospice care, and reduce burdensome care transitions at the end of life. Expanding access to PC in NHs is currently hampered by the low supply of PC professionals available to care for NH residents. Novel strategies, such as telemedicine, will be necessary to facilitate adequate access to PC services in NH settings.

Corresponding Author: Caroline E. Stephens, PhD, GNP-BC, Department of Community Health Systems, University of California, San Francisco, 2 Koret Way, San Francisco, CA 94143 (caroline.stephens@ucsf.edu).

Accepted for Publication: September 9, 2017.

Published Online: November 20, 2017. doi:10.1001/jamainternmed.2017.6299

Author Contributions: Dr Stephens 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: Stephens, Halifax, Ritchie, Lee.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Stephens, Hunt, Ritchie.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Stephens.

Obtained funding: Stephens.

Administrative, technical, or material support: Stephens, Bui, Halifax.

Study supervision: Stephens, Lee.

Conflict of Interest Disclosures: None reported.

Funding Support: This project was supported by grant 8 KL2 TR000143-08 from the National Institutes of Health, by the University of California, San Francisco (UCSF) Claude D. Pepper Older Americans Independence Center, and by Tideswell at UCSF, which promotes promising new research aimed at better understanding and addressing late-life disability in vulnerable populations (all to Dr Stephens).

Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Additional Contributions: Ursula N. Boynton, MD, and Jeffrey Stoneberg, DO (both with Alta Bates Summit Medical Center) contributed clinical and administrative collaborative efforts. Amy J. Markowitz, JD, provided insightful comments on the manuscript. No compensation was received. We thank the community nursing home residents, families, and staff for their time and dedication.