Feasibility and Acceptability of a Pharmacogenomic Decision Support System in Palliative Care.

Context: Pharmacogenomic analysis may improve the efficacy or safety of the drugs used in palliative care. Decision support systems may promote clinical integration of this information. Objectives: To determine the feasibility and acceptability of a pharmacist-directed pharmacogenomic decision support system in the care of patients with advanced illness and explore the drug-gene and drug-drug interactions that occur in this population. Methods: Physicians or nurse practitioners from two U.S. hospice agencies identified opioid-treated patients receiving multiple other drugs. Buccal samples and clinical data were obtained from consenting patients. A pharmacist used the proprietary MedWise™ platform to evaluate the current medications in terms of genotype and phenotype, created a standardized report describing potential interactions and recommended actions that may reduce the associated risk. Clinicians could access the report online and completed Likert-type scales to assess use and satisfaction with the system. Results: Twenty clinicians and 100 patients participated. The reports revealed that 74 drugs were subject to 462 drug-gene interactions and 77 were involved in 691 drug-drug interactions; only 4 and 16 patients, respectively, had no drug-gene or drug-drug interactions. Clinicians routinely checked the reports and used the information to change ≥1 treatments in 55 (55%) patients. Almost all clinicians rated the system likely to improve the quality of care and all "agreed" or "strongly agreed" to recommend the system to colleagues. Conclusion: This pharmacist-directed pharmacogenomic decision support system was perceived positively and was integrated into practice. Further studies are warranted to its clinical integration and its outcomes.

Community-Based Palliative Care Consultations: Comparing Dementia to Nondementia Serious Illnesses.

Background: Little is known about the provision of palliative care to people with dementia (PWD). Objective: To examine demographic and clinical characteristics of PWD versus nondementia serious illnesses receiving community-based palliative care. Design: Retrospective study of people 65+ receiving an initial consultation from a community-based palliative care practice between September 2014 and February 2018 using registry data entered by clinicians into the Quality Data Collection Tool for Palliative Care. Setting: Large not-for-profit organization that provides community-based hospice and palliative care services. Measurements: Demographics, consult characteristics, advance care planning, and caregiver support. Results: Of 3883 older adults receiving a first palliative care consultation from this organization, 22% (855) had a dementia diagnosis. Compared to those with nondementia serious illnesses, PWD were older with more impaired function; 36% had a prognosis of less than six months. More PWD than those without dementia had a proxy decision maker and documented advance directive. A quarter of PWD were full code before consultation; nearly half changed to some limitation afterward. Symptom characteristics were missing for 67% of PWD due to collection through self-report. Caregivers of PWD were responsible for significantly more activities of daily living than caregivers of people with nondementia serious illnesses. Conclusions: This is the first comparison of a large cohort of people with and without dementia receiving a community-based palliative care consult in the United States. Alternative measures of symptom burden should be used in registries to capture data for PWD. Understanding the unique characteristics of PWD will guide future services for this growing population.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

CONTEXT: Many clinical disciplines report high rates of burnout, which leads to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. OBJECTIVES: We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. METHODS: We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariable regression analyses to identify predictors of high rates of burnout. RESULTS: We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 38.7%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher odds of burnout include nonphysician clinical roles, working in smaller organizations, working longer hours, being younger than 50 years of age, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. CONCLUSION: Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care.

CONTEXT: Palliative care (PC) model delivered by two large hospices and PC providers. OBJECTIVES: To understand study participants' knowledge of PC and acceptability of a new community-based PC model. METHODS: Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. RESULTS: Across 10 interviews and four focus groups (n = 4-10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. CONCLUSION: Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.

Will Changes to Medicare Payment Rates Alter Hospice's Cost-Saving Ability?

BACKGROUND: On January 1, 2016, Medicare implemented a new "two-tiered" model for hospice services, with per diem rates increased for days 1 through 60, decreased for days 61 and greater, and service intensity add-on payments made retrospectively for the last seven days of life. OBJECTIVE: To estimate whether the Medicare hospice benefit's potential for cost savings will change as a result of the January 2016 change in payment structure. DESIGN: Analysis of decedents' claims records using propensity score matching, logistic regression, and sensitivity analysis. SETTING/SUBJECTS: All age-eligible Medicare decedents who received care and died in North Carolina in calendar years 2009 and 2010. MEASUREMENTS: Costs to Medicare for hospice and other healthcare services. RESULTS: Medicare costs were reduced from hospice election until death using both 2009-2010 and new 2016 payment structures and rates. Mean cost savings were $1,527 with actual payment rates, and would have been $2,105 with the new payment rates (p < 0.001). Cost savings were confirmed by reducing the number of days used for cost comparison by three days for those with hospice stays of at least four days ($4,318 using 2009-2010 rates, $3,138 for 2016 rates: p < 0.001). Cost savings were greater for males ($3,393) versus females ($1,051) and greatest in cancer ($6,706) followed by debility and failure to thrive ($5,636) and congestive heart failure ($1,309); dementia patients had higher costs (+$1,880) (p < 0.001). When adding 3 days to the comparison period, hospice increased costs to Medicare. CONCLUSIONS: Medicare savings could continue with the 2016 payment rate change. Cost savings were found for all primary diagnoses analyzed except dementia.

Addressing Palliative Care Clinician Burnout in Organizations: A Workforce Necessity, an Ethical Imperative.

Clinician burnout reduces the capacity for providers and health systems to deliver timely, high quality, patient-centered care and increases the risk that clinicians will leave practice. This is especially problematic in hospice and palliative care: patients are often frail, elderly, vulnerable, and complex; access to care is often outstripped by need; and demand for clinical experts will increase as palliative care further integrates into usual care. Efforts to mitigate and prevent burnout currently focus on individual clinicians. However, analysis of the problem of burnout should be expanded to include both individual- and systems-level factors as well as solutions; comprehensive interventions must address both. As a society, we hold organizations responsible for acting ethically, especially when it relates to deployment and protection of valuable and constrained resources. We should similarly hold organizations responsible for being ethical stewards of the resource of highly trained and talented clinicians through comprehensive programs to address burnout.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

CONTEXT: Many clinical disciplines report high rates of burnout, which lead to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. OBJECTIVES: We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. METHODS: We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariate regression analyses to identify predictors of high rates of burnout. RESULTS: We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 62%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. CONCLUSIONS: Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness: a randomized clinical trial.

IMPORTANCE: For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE: To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS: Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES: Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS: A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were $3.37 per day and $716 per patient. CONCLUSIONS AND RELEVANCE: This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01415934.

Quality of palliative care for patients with advanced cancer in a community consortium.

BACKGROUND: Measuring quality of care delivery is essential to palliative care program growth and sustainability. We formed the Carolinas Consortium for Palliative Care and collected a quality data registry to monitor our practice and inform quality improvement efforts. MEASURES: We analyzed all palliative care consultations in patients with cancer in our quality registry from March 2008 through October 2011 using 18 palliative care quality measures. Descriptive metric adherence was calculated after analyzing the relevant population for measurement. INTERVENTION: We used a paper-based, prospective method to monitor adherence for quality measures in a community-based palliative care consortium. OUTCOMES: We demonstrate that measures evaluating process assessment (range 63%-100%), as opposed to interventions (range 3%-17%), are better documented. CONCLUSIONS/LESSONS LEARNED: Analyzing data on quality is feasible and valuable in community-based palliative care. Overall, processes to collect data on quality using nontechnology methods may underestimate true adherence to quality measures.

Expanding use of palliative care in the oncology setting.

The use of palliative care for patients with serious disease improves quality of life, reduces symptoms, and saves money. Unfortunately, too many patients endure needless suffering. Expanding awareness about palliative care among patients, providers, and policymakers will hopefully generate momentum for use of such services, thus benefitting patients with cancer and other advanced diseases.

Demonstration of a sustainable community-based model of care across the palliative care continuum.

CONTEXT: In the U.S., the number of hospital-based palliative care programs has increased rapidly, but availability of outpatient palliative care remains limited. Multiple barriers impede the financial viability of these programs. Four Seasons, a nonprofit organization in western North Carolina, delivers a full spectrum of palliative care in hospitals, nursing homes, assisted living facilities, patients' homes, and outpatient clinics; its catchment area encompasses approximately 350,000 people. Initially focused on hospice care, Four Seasons added its palliative care program in 2003. Before the inquiry described herein, financial losses from outpatient palliative care (2003-2008) were escalating. OBJECTIVES: We explored organizational and financial barriers to sustainability of palliative care, so as to 1) identify reasons for financial losses; 2) devise and implement solutions; and 3) develop a sustainable model for palliative care delivery across settings, including the outpatient setting. METHODS: In 2008, Four Seasons's palliative care program served 305 patients per day (average) with 10.5 providers (physicians, nurse practitioners, and physician assistants); financial losses approached $400,000 per year. We used Quality Assessment and Performance Improvement cycles to identify challenges to and inefficiencies in service provision, developed targeted strategies for overcoming identified barriers to cost-efficiency, instituted these measures, and tracked results. RESULTS: In 2011, Four Seasons served 620 palliative care patients per day (average) with 14 providers; financial losses decreased by 40%. CONCLUSION: With health care reform promoting integration of care across settings, outpatient palliative care will gain importance in the health care continuum. Process changes can help reduce financial losses that currently impede outpatient palliative care programs.