Eliciting the educational needs and priorities of home care workers on end-of-life care for patients with heart failure using nominal group technique.

BACKGROUND: Home care workers, as paid caregivers, assist with many aspects of home-based heart failure care. However, most home care workers do not receive systematic training on end-of-life care for heart failure patients. AIM: To elicit the educational needs and priorities of home care workers caring for community- dwelling adults with heart failure at the end-of-life. DESIGN: Nominal group technique involving a semi-quantitative structured group process and point rating system was used to designate the importance of priorities elicited from home care workers. Individual responses to the question, "If you have ever cared for a heart failure patient who was dying (or receiving end-of-life care on hospice), what are some of the challenges you faced?", were aggregated into categories using directed content analysis methods. SETTING/PARTICIPANTS: Forty-one home care workers were recruited from a non-profit training and education organization in New York City. RESULTS: Individual responses to the question were aggregated into five categories: (1) how to cope and grieve; (2) assisting patients with behavior changes, (3) supporting patients to improve their quality of life, (4) assisting patients with physical symptom management, and (5) symptom recognition and assessment. CONCLUSIONS: Our findings confirm the need for the formal development and evaluation of an educational program for home care workers to improve the care of heart failure patients at the end-of-life. There is also a need for research on integrating home care workers into the interprofessional healthcare team to support optimal health outcomes for patients with heart failure.

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.

Development and Validation of Surveillance-Based Algorithms to Estimate Hepatitis C Treatment and Cure in New York City.

CONTEXT: Treatment options for chronic hepatitis C virus (HCV) have improved in recent years. The burden of HCV in New York City (NYC) is high. Measuring treatment and cure among NYC residents with HCV infection will allow the NYC Department of Health and Mental Hygiene (DOHMH) to appropriately plan interventions, allocate resources, and identify disparities to combat the hepatitis C epidemic in NYC. OBJECTIVE: To validate algorithms designed to estimate treatment and cure of HCV using RNA test results reported through routine surveillance. DESIGN: Investigation by NYC DOHMH to determine the true treatment and cure status of HCV-infected individuals using chart review and HCV test data. Treatment and cure status as determined by investigation are compared with the status determined by the algorithms. SETTING: New York City health care facilities. PARTICIPANTS: A total of 250 individuals with HCV reported to the New York City Department of Health and Mental Hygiene (NYC DOHMH) prior to March 2016 randomly selected from 15 health care facilities. MAIN OUTCOME MEASURES: The sensitivity and specificity of the algorithms. RESULTS: Of 235 individuals successfully investigated, 161 (69%) initiated treatment and 96 (41%) achieved cure since the beginning of 2014. The treatment algorithm had a sensitivity of 93.2% (95% confidence interval [CI], 89.2%-97.1%) and a specificity of 83.8% (95% CI, 75.3%-92.2%). The cure algorithm had a sensitivity of 93.8% (95% CI, 88.9%-98.6%) and a specificity of 89.4% (95% CI, 83.5%-95.4%). Applying the algorithms to 68 088 individuals with HCV reported to DOHMH between July 1, 2014, and December 31, 2016, 28 392 (41.7%) received treatment and 16 921 (24.9%) were cured. CONCLUSIONS: The algorithms developed by DOHMH are able to accurately identify HCV treatment and cure using only routinely reported surveillance data. Such algorithms can be used to measure treatment and cure jurisdiction-wide and will be vital for monitoring and addressing HCV. NYC DOHMH will apply these algorithms to surveillance data to monitor treatment and cure rates at city-wide and programmatic levels, and use the algorithms to measure progress towards defined treatment and cure targets for the city.

On Board: Interdisciplinary Team Member Perspectives of How Patients With Heart Failure and Their Families Navigate Hospice Care.

Hospice agencies serve an expanding population of patients with varying disease conditions and sociodemographic characteristics. Patients with heart failure represent a growing share of hospice deaths in the United States. However, limited research has explored the perspectives of hospice interdisciplinary team members regarding how patients with heart failure and their families navigate hospice care. We sought to address this research gap by conducting qualitative interviews with hospice interdisciplinary team members at a large, not-for-profit hospice agency in New York City (N = 32). Five overarching themes from these interviews were identified regarding components that members of the hospice interdisciplinary team perceived as helping patients with heart failure and their families navigate hospice care. These themes included (1) "looking out: caregiving support in hospice care," (2) "what it really means: patient knowledge and understanding of hospice," (3) "on board: acceptance of death and alignment with hospice goals," (4) "on the same page: communication with the hospice team," and (5) "like a good student: symptom management and risk reduction practices." Interdisciplinary team members delineated several components that influence how patients with heart failure and their families navigate hospice services and communicate with care providers. Hospice agencies should consider policies for augmenting services among patients with heart failure to improve their understanding of hospice, supplement available caregiving supports for patients without them, and remove communication barriers.

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.

Risk Factors for Long-term Mortality and Patterns of End-of-Life Care Among Medicare Sepsis Survivors Discharged to Home Health Care.

Importance: Despite a growing recognition of the increased mortality risk among sepsis survivors, little is known about the patterns of end-of-life care among this population. Objective: To describe patterns of end-of-life care among a national sample of sepsis survivors and identify factors associated with long-term mortality risk and hospice use. Design, Setting, and Participants: This cohort study assessed sepsis survivors who were Medicare fee-for-service beneficiaries discharged to home health care using national Medicare administrative, claims, and home health assessment data from 2013 to 2014. The initial and final primary analyses were conducted in July 2017 and from July to August 2019, respectively. Exposures: Sepsis hospital discharge and 1 or more home health assessments within 1 week. Main Outcomes and Measures: Outcomes were 1-year mortality among all sepsis survivors and hospitalization in the last 30 days of life, death in an acute care hospital, and hospice use among decedents. Multivariate logistic regression was used to identify factors associated with 1-year mortality and hospice use. Results: Among 87 581 sepsis survivors who were Medicare fee-for-service beneficiaries discharged to home health care, 49 323 (56.3%) were aged 75 years or older, 69 499 (79.4%) were non-Hispanic white, and 48 472 (55.3%) were female. Among the total survivors, 24 423 (27.9%) people died within 1 year of discharge, with a median (interquartile range) survival time of 119 (51-220) days. Among these decedents, 16 684 (68.2%) were hospitalized in the last 30 days of life, 6560 (26.8%) died in an acute care hospital, and 12 573 (51.4%) were enrolled in hospice, with 5729 (45.6%) using hospice for 7 or fewer days. Several factors were associated with 1-year mortality, including a cancer diagnosis (odds ratio [OR], 3.66; 95% CI, 3.50-3.83; P < .001), multiple dependencies of activities of daily living or instrumental activities of daily living (OR, 2.80; 95% CI, 2.57-3.05; P < .001), and an overall poor health status (OR, 2.21; 95% CI, 2.01-2.44; P < .001) documented on home health assessment. Among the decedents, cancer was associated with hospice use (OR, 2.25; 95% CI, 2.11-2.41; P < .001), patients aged 85 years or older (OR, 1.49; 95% CI, 1.37-1.61; P < .001), and living in an assisted living setting (OR, 1.93; 95% CI, 1.69-2.19; P < .001). Conclusions and Relevance: The findings of this study suggest that death within 1 year after sepsis discharge may be common among Medicare beneficiaries discharged to home health care. Although 1 in 2 decedents used hospice, aggressive care near the end of life and late hospice referral were common. Readily identifiable risk factors suggest opportunities to target efforts to improve palliative and end-of-life care among high-risk sepsis survivors.

Sepsis Survivors Transitioned to Home Health Care: Characteristics and Early Readmission Risk Factors.

OBJECTIVE: To profile the characteristics of growing numbers of sepsis survivors receiving home healthcare (HHC) by type of sepsis before, during, and after a sepsis hospitalization and identify characteristics significantly associated with 7-day readmission. DESIGN: Cross-sectional descriptive study. Data sources included the Outcome and Assessment Information Set (OASIS) and Medicare administrative and claims data. SETTING AND PARTICIPANTS: National sample of Medicare beneficiaries hospitalized for sepsis who were discharged to HHC between July 1, 2013 and June 30, 2014 (N = 165,228). METHODS: We used an indicator distinguishing among 3 types of sepsis: explicitly coded sepsis diagnosis without organ dysfunction; severe sepsis with organ dysfunction; and septic shock. We compared these subgroups' demographic, clinical and functional characteristics, comorbidities, risk factors for rehospitalization, characteristics of the index hospital stay, and predicted 7-day hospital readmission. RESULTS: The majority (80.7%) had severe sepsis, 5.7% had septic shock, and 13.6% had sepsis without acute organ system dysfunction. The medical diagnoses recorded at HHC admission identified sepsis or blood infection only 7% of the time, potentially creating difficulty identifying the sepsis survivor in HHC. Among sepsis types, septic shock survivors had the greatest illness burden profile. This study describes 12 key variables, each of which individually raises the relative 7-day readmission risk by as much as 60%. Increased risk of 7-day rehospitalization was found among those with septic shock, 3 or more previous inpatient stays, index hospital length of stay of >8 days, dyspnea, >6 functional dependencies, and other risk factors. CONCLUSIONS AND IMPLICATIONS: Implications for practice include using our findings to identify sepsis survivors who are at risk for early readmission. Assessment for these factors may profile the at-risk patient, thereby triggering the call for additional acute care intervention such as delayed discharge, or post-acute intervention such as early home visit and outpatient follow-up.

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.