Building trust and facilitating goals of care conversations: A qualitative study in people with heart failure receiving home hospice care.

BACKGROUND: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers. AIM: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice. DESIGN: A qualitative descriptive study design was used with semi-structured interviews. SETTING/PARTICIPANTS: We conducted qualitative interviews with persons with heart failure, family caregivers, and interprofessional healthcare team members at a large not-for-profit hospice agency in New York City between March 2018 and February 2019. RESULTS: A total of 39 qualitative interviews were conducted, including with healthcare team members (e.g. nurses, physicians, social workers, spiritual counselors), persons with heart failure, and family caregivers. Three themes emerged from the qualitative interviews regarding facilitators and barriers in goals of care conversations for better decision-making: (1) trust is key to building and maintaining goals of care conversations; (2) lack of understanding and acceptance of hospice inhibits goals of care conversations; and (3) family support and engagement promote goals of care conversations. CONCLUSION: Findings from this study suggest that interventions designed to improve goals of care conversations in the home hospice setting should focus on promoting understanding and acceptance of hospice, family support and engagement, and building trusting relationships with interprofessional healthcare teams.

The Development and Implementation of a Cardiac Home Hospice Program: Results of a RE-AIM Analysis.

BACKGROUND: Use of hospice has grown among patients with heart failure; however, gaps remain in the ability of agencies to tailor services to meet their needs. AIM: This study describes the implementation of a cardiac home hospice program and insights for dissemination to other hospice programs. DESIGN: We conducted a multimethod analysis structured around the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework. SETTINGS/PARTICIPANTS: We used electronic medical records for our quantitative data source and interviews with hospice clinicians from a not-for-profit hospice agency (N = 32) for our qualitative data source. RESULTS: Reach-A total of 1273 participants were enrolled in the cardiac home hospice program, of which 57% were female and 42% were black or Hispanic with a mean age was 86 years. Effectiveness-The cardiac home hospice program increased hospice enrollment among patients with heart failure from 7.9% to 9.5% over 1 year (2016-2017). Adoption-Institutional factors that supported the program included the acute need to support medically complex patients at the end of life and an engaged clinical champion. Implementation-Program implementation was supported by interdisciplinary teams who engaged in care coordination. Maintenance-The program has been maintained for over 3 years. CONCLUSION: The cardiac home hospice program strengthened hospice clinicians' ability to confidently provide care for patients with heart failure, expanded awareness of their symptoms among clinicians, and was associated with increased enrollment of patients with heart failure over the study period. This RE-AIM evaluation provides lessons learned and strategies for future adoption, implementation, and maintenance of a cardiac home hospice program.

Factors Associated With Live Discharge of Heart Failure Patients From Hospice: A Multimethod Study.

OBJECTIVES: This study identified sociodemographic and clinical factors that predicted live discharge among home hospice patients with heart failure, and related these findings to perspectives among health care providers about challenges to caring for these patients. BACKGROUND: Hospice patients with heart failure are frequently discharged from hospice before death ("live discharge"). However, little is known about the factors and circumstances associated with live discharge among patients with heart failure. METHODS: Quantitative analyses of patient medical records (N = 1,498) and qualitative interviews were performed with health care providers (n = 19) at a not-for-profit hospice agency in New York City. RESULTS: Thirty percent of home hospice patients with heart failure experienced a live discharge, most frequently due to 911 calls that led to acute hospitalization. The odds of acute hospitalization were higher for younger patients (age 18 to 74 years: adjusted odds ratio [AOR]: 2.10; 95% confidence interval [CI]: 1.34 to 3.28), African American (AOR: 2.06; 95% CI: 1.31 to 3.24) or Hispanic (AOR: 2.99; 95% CI: 1.99 to 4.50) patients, and higher functioning patients (Palliative Performance Scores of 50% to 70%; AOR: 5.68; 95% CI: 3.66 to 8.79). Qualitative interviews with health care providers highlighted the unique characteristics of heart failure (e.g., sudden changes in patients' condition), the importance of patients' understanding of hospice and their own prognosis, and the role of sociocultural and family context in precipitating and potentially preventing live discharge (e.g., absence of social supports in the home). CONCLUSIONS: Live discharge from hospice, especially due to acute hospitalization, is common with heart failure. Greater attention is needed for patients' knowledge of and readiness for hospice care, especially among younger and diverse populations, and for factors related to the social and family context in which hospice care is provided.

Use of the Palliative Performance Scale to estimate survival among home hospice patients with heart failure.

AIMS: Estimating survival is challenging in the terminal phase of advanced heart failure. Patients, families, and health-care organizations would benefit from more reliable prognostic tools. The Palliative Performance Scale Version 2 (PPSv2) is a reliable and validated tool used to measure functional performance; higher scores indicate higher functionality. It has been widely used to estimate survival in patients with cancer but rarely used in patients with heart failure. The aim of this study was to identify prognostic cut-points of the PPSv2 for predicting survival among patients with heart failure receiving home hospice care. METHODS AND RESULTS: This retrospective cohort study included 1114 adult patients with a primary diagnosis of heart failure from a not-for-profit hospice agency between January 2013 and May 2017. The primary outcome was survival time. A Cox proportional-hazards model and sensitivity analyses were used to examine the association between PPSv2 scores and survival time, controlling for demographic and clinical variables. Receiver operating characteristic curves were plotted to quantify the diagnostic performance of PPSv2 scores by survival time. Lower PPSv2 scores on admission to hospice were associated with decreased median (interquartile range, IQR) survival time [PPSv2 10 = 2 IQR: 1-5 days; PPSv2 20 = 3 IQR: 2-8 days] IQR: 55-207. The discrimination of the PPSv2 at baseline for predicting death was highest at 7 days [area under the curve (AUC) = 0.802], followed by an AUC of 0.774 at 14 days, an AUC of 0.736 at 30 days, and an AUC of 0.705 at 90 days. CONCLUSIONS: The PPSv2 tool can be used by health-care providers for prognostication of hospice-enrolled patients with heart failure who are at high risk of near-term death. It has the greatest utility in patients who have the most functional impairment.

Using the Palliative Performance Scale to Estimate Survival for Patients at the End of Life: A Systematic Review of the Literature.

BACKGROUND: The Palliative Performance Scale (PPS) has been widely used for survival prediction among patients with cancer; however, few studies have reviewed PPS scores in heterogeneous palliative care populations across multiple care settings. OBJECTIVE: The aim of this systematic review was to determine how the PPS tool has been used to estimate survival at the end of life. METHODS: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, Embase, and the Cochrane Library were searched for the existing literature published from 2008 to 2017. We synthesized study characteristics, the PPS scores at baseline, and primary outcomes, and explored differences in survival estimates by diagnosis. The quality of the studies was assessed using the Good ReseArch for Comparative Effectiveness (GRACE) checklist. RESULTS: Seventeen studies were included in this review (nine with cancer and eight with mixed diagnoses). All included studies reported that the PPS exhibited a significant association with survival. Survival estimates ranged from 1 to 3 days for patients with PPS scores of 10% compared with 5 to 36 days for those with scores of 30%. The categorical cut-points for the PPS scores were not consistently reported across studies. CONCLUSION: This review provides a broad overview on the prognostic value of the PPS tool for survival among multiple patient populations across care settings. Consistent reporting of PPS scores would facilitate the comparison of survival estimates across end-of-life diagnoses.