Changes in hospice care experiences during the COVID-19 pandemic

Demand for hospice and palliative care services increased during the COVID-19 pandemic.1 Hospices strove to meet this demand despite staffing shortages2 and visitation restrictions that sometimes prevented family members and hospice staff from visiting patients in institutional settings such as nursing homes, assisted living facilities, and hospitals.3, 4 We examine how the COVID-19 pandemic may have influenced the characteristics of patients receiving hospice care, the settings in which they received care, and their care experiences using national data from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey. The survey is completed by bereaved family caregivers following the death of the hospice patient, and is the national standard for assessing patient- and family-centeredness of hospice care. We estimated the pandemic impact on caregiver-reported hospice care experiences using a weighted average of the eight National Quality Forum-endorsed CAHPS Hospice Survey measures, which assess hospice team communication, respectful treatment, emotional and spiritual support, timely care, help for symptoms, training family to care for the patient at home, and overall rating and willingness to recommend the hospice. Survey data are publicly reported and updated quarterly. Responses for all evaluative items were top-box coded, and scores were adjusted for case mix and survey mode.5-7 Additional detail on survey content, administration, and scoring appears elsewhere.5-8 Our analyses used survey data from 1,892,944 caregiver respondents whose family members received care from 3274 hospices nationwide from the first quarter of 2016 through the fourth quarter of 2021. We examined the characteristics of caregiver respondents and hospice decedents, the setting in which hospice care was delivered (nursing home (NH), acute care hospital (ACH), hospice inpatient unit (IPU), assisted living facility (ALF), multi-setting, or other setting) and caregiver-reported involvement in care (“Sometimes,” “Usually,” “Always”), comparing survey data preceding the pandemic to post-2019 data. We estimated the impact of the pandemic as the difference between observed quality scores in post-2019 data and the scores that would be expected if pre-pandemic linear and seasonal trends continued. To understand the extent to which changes in scores may reflect post-2019 changes in care setting, rather than changes in care quality within a given setting, we compared these results to results from a model that added care setting as a covariate. Finally, to estimate whether changes in scores after 2019 differ across care settings, we ran further models that added interaction terms between setting and post-2019 quarters. Characteristics of hospice decedents were similar in pre-pandemic and post-2019 quarters (not shown). In contrast, the settings in which the decedents received hospice care shifted notably after 2019 toward the home setting and away from other settings, especially NHs. Through the first quarter of 2020, the percentage of patients receiving care at home was about 47%. In the second quarter of 2020, it increased to 57%, peaking at 61% in the first quarter of 2021. In the last quarter of 2021, it remained elevated (55%). All settings except home saw substantial decreases in the percent of caregivers who reported “always” being involved in care. The estimated effects of the pandemic on caregiver-reported quality of hospice care for the CAHPS Hospice Survey summary measure were small and negative (Figure 1). Neither set of estimated effects show evidence of diminishing by the end of 2021. Models with interaction terms between setting and post-2019 quarters indicated that the post-pandemic changes in care experiences varied by setting (Figure 2). The estimated pandemic effect on the summary measure was negative in all settings, and smaller in the home setting (≤1.1 pp in magnitude across quarters), but somewhat larger in NHs (≤1.7 pp in magnitude), ALFs (≤1.9 pp), IPUs (≤2.3 pp), and ACHs (≤2.6 pp). The COVID-19 pandemic, a national health care emergency, decreased utilization of hospitals, SNFs, and hospice.9 The pandemic adversely affect hospice care experiences and continued to do so almost 2 years after its onset. The settings in which hospice patients received care shifted notably into the home setting from NHs and other institutional settings.9 Overall estimated pandemic effects on reported hospice care experiences were small; the potential impact of the pandemic on hospice experience was buffered by a shift into the high-scoring and less-impacted home setting. Still, there was a small-to-moderate decrease in reported care experiences in ALFs, IPUs, and ACHs, perhaps because physical separation of the family from those dying in institutional settings resulted in unmet informational, social, and emotional needs.10 All authors have read and approved of the submission of this manuscript. Maria DeYoreo, Rebecca Anhang Price, Joan M. Teno, Marc N. Elliott contributed substantially to conception and design, and Maria DeYoreo, Rebecca Anhang Price, Ann Haas, Anagha Tolpadi, Joan M. Teno, Marc N. Elliott to analysis and interpretation of data. Maria DeYoreo, Rebecca Anhang Price, Joan M. Teno drafted the article, and all authors contributed to critical revisions of the article for important intellectual content. Maria DeYoreo, Ann Haas, Anagha Tolpadi, Marc N. Elliott were responsible for statistical analysis. Rebecca Anhang Price obtained funding and provided study supervision. The authors declare no conflicts of interest. The Centers for Medicare & Medicaid Services funded this work but played no role in the design, methods, subject recruitment, data collections, analysis and preparation of paper. This work was supported by Task Order Number GS-10F-0275P/75FCMC22F0037, entitled, “The Continued National Implementation of the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Hospice Survey,” funded by the Centers for Medicare & Medicaid Services. The content of this publication neither necessarily reflect the views or policies of the Centers for Medicare & Medicaid Services nor does the mention of trade names, commercial products, or organizations imply endorsement by the U.S. government. The authors assume full responsibility for the accuracy and completeness of the ideas presented.