Expert consensus-based guidance on approaches to opioid management in individuals with advanced cancer-related pain and nonmedical stimulant use.

BACKGROUND: Clinicians treating cancer-related pain with opioids regularly encounter nonmedical stimulant use (i.e., methamphetamine, cocaine), yet there is little evidence-based management guidance. The aim of the study is to identify expert consensus on opioid management strategies for an individual with advanced cancer and cancer-related pain with nonmedical stimulant use according to prognosis. METHODS: The authors conducted two modified Delphi panels with palliative care and addiction experts. In Panel A, the patient's prognosis was weeks to months and in Panel B the prognosis was months to years. Experts reviewed, rated, and commented on the case using a 9-point Likert scale from 1 (very inappropriate) to 9 (very appropriate) and explained their responses. The authors applied the three-step analytical approach outlined in the RAND/UCLA to determine consensus and level of clinical appropriateness of management strategies. To better conceptualize the quantitative results, they thematically analyzed and coded participant comments. RESULTS: Consensus was achieved for all management strategies. The 120 Experts were mostly women (47 [62%]), White (94 [78%]), and physicians (115 [96%]). For a patient with cancer-related and nonmedical stimulant use, regardless of prognosis, it was deemed appropriate to continue opioids, increase monitoring, and avoid opioid tapering. Buprenorphine/naloxone transition was inappropriate for a patient with a short prognosis and of uncertain appropriateness for a patient with a longer prognosis. CONCLUSION: Study findings provide urgently needed consensus-based guidance for clinicians managing cancer-related pain in the context of stimulant use and highlight a critical need to develop management strategies to address stimulant use disorder in people with cancer. PLAIN LANGUAGE SUMMARY: Among palliative care and addiction experts, regardless of prognosis, it was deemed appropriate to continue opioids, increase monitoring, and avoid opioid tapering in the context of cancer-related pain and nonmedical stimulant use. Buprenorphine/naloxone transition as a harm reduction measure was inappropriate for a patient with a short prognosis and of uncertain appropriateness for a patient with a longer prognosis.

Perceptions of Palliative Care Program Viability During the Pandemic: Qualitative Results From a National Survey.

Background: Palliative care programs have played a significant role during the COVID-19 pandemic. However, the financial impact of the pandemic and operational challenges for palliative care programs have raised concerns for their future viability. Objectives: To explore palliative care program leaders' perceptions of the future viability of their programs in the context of the pandemic and inform future educational and program development. Methods: Surveys were sent to 1430 specialist palliative care program leaders, identified through the Center to Advance Palliative Care's contact lists, via email in May 2020 and January 2021. Leaders were asked why they were or were not concerned about the viability of their palliative care programs. Qualitative content analysis was applied to determine themes. Results: We received 440 responses. Most programs served hospital settings and were geographically located across all US regions. We identified four themes: 1) The importance of being valued by organizational leadership and peers, 2) The importance of adequate and supported palliative care staff, 3) The pandemic validated and accelerated the need for palliative care, and 4) The pandemic perpetuated organizational financial concerns. Conclusion: Findings provide insights about palliative care program viability from the perspective of program leaders during a global pandemic. Technical assistance to support palliative care teams and their relationships with stakeholders, methods to measure the impact of peer support, efforts to educate administrators about the value of palliative care, and efforts to reduce burnout are needed to sustain palliative care programs into the future.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Specialty Palliative Care in COVID-19: Early Experiences from the Palliative Care Quality Collaborative.

Background: The COVID-19 pandemic has spurred unprecedented need for specialty palliative care. The Palliative Care Quality Collaborative (PCQC) provides unique infrastructure for rapid data collection and analysis. Objectives: To capture and describe real-time, real-world experiences of specialty palliative care professionals caring for patients with COVID-19 through a rapid reporting tool and registry. Setting: Palliative care clinicians consulted for patients either positive for COVID-19, under investigation for COVID-19, or recovered from COVID-19. Design: The PCQC created a 13-item COVID-19 case report form (CRF), modeled after the PCQC core dataset for specialty palliative care quality measurement. Twelve items offered discrete answer choices and one was open-ended. The CRF was publicized widely (e.g., social media, e-mail list serves) and completed through a link on the PCQC website. Results: Three hundred six reports (298 adult, 8 pediatric) were submitted between April 6, 2020 and October 7, 2020. The majority of patients (83%) were 50 years or older; 25% were 80 or older, and 78% were COVID-19 positive. Male gender identity was significantly more prevalent than female (58% vs. 40%, p < 0.002). The most common comorbidity was cardiovascular disease (23%). Of adult hospital-based patients, 69% were full code before palliative care consultation versus 28% after (p < 0.05). All pediatric patients were full code before and after palliative care consult. Qualitative themes were strained communication with patients, family visitation challenges, communication barriers between clinicians and families, rapid changes in palliative care medical management, community care options difficult to find, lack of testing in community-based settings, and guardianship and legal challenges. Conclusion: Preliminary data from the first 306 patients reported to the PCQC COVID-19 Registry describe palliative care use concentrated among older and higher risk patients and challenges to the provision of palliative care during this pandemic.

Palliative Care Specialist Access is Associated With Rankings of Hospital Quality.

CONTEXT: Increasing evidence has shown that access to specialty palliative care, particularly outpatient palliative care clinics, can yield improved health outcomes and be a marker of hospital quality. OBJECTIVE: To determine whether an association exists between access to specialty palliative care programs and hospital rankings found in the 2020-2021 U.S. News & World Report Best Hospitals. METHODS: This study used publicly available data from the Center to Advance Palliative Care (CAPC) Provider Directory to determine access to in-patient and out-patient palliative care in the 2020-2021 U.S. News & World Report Best Hospitals Rankings. Descriptive statistics and chi-squares were performed. Data were also analyzed across the four U.S. Census Bureau regions (Northeast, South, Midwest, West). RESULTS: Around 100% of the Top 20 hospitals include hospital-based palliative care consultation teams, and 95% offered outpatient palliative care. Of the second cohort of 83 hospitals, 99% offered inpatient palliative care, and 65% offered outpatient palliative care. Of the third cohort of 75 hospitals ranked, 96% had inpatient palliative care services, while only 41.3% offered outpatient palliative care. This represents a significant association between rank position and access to outpatient palliative care (P < 0.01). Ranked hospitals also have significantly higher access to hospital-based palliative care teams compared to the national prevalence rate (P < 0.01). CONCLUSION: These findings reflect the association of access to specialty palliative care with USNWR rankings for hospital quality. Further study is necessary to determine the specific influence of access to palliative care and USNWR rank position.

Factors Associated with the Adoption and Closure of Hospital Palliative Care Programs in the United States.

Background: In the United States, the percentage of hospitals over 50 beds with palliative care programs has risen substantially from 7% of hospitals in 2001 to 72% in 2017. Yet the dynamic nature of program adoption and closure over time is not known. Objective: To examine the rate of palliative care program adoption and closure and associated hospital and geographic characteristics in a national sample of U.S. hospitals. Design: Adoption and closure rates were calculated for 3696 U.S. hospitals between 2009 and 2017. We used multivariable logistic regression models to examine the association between adoption and closure status and hospital, geographic, and community characteristics. Setting/Subjects: All nonfederal general medical and surgical, cancer, heart, and obstetric or gynecological hospitals, of all sizes, in the United States in operation in both 2009 and 2017. Results: By 2017, 34.9% (812/2327) of the hospitals without palliative care in 2009 had adopted palliative care programs, and 15.0% (205/1369) of the hospitals with programs had closed them. In multivariable models, hospitals in metropolitan areas, nonprofit and public hospitals (compared to for-profit hospitals), and those with residency training approval by the Accreditation Council for Graduate Medical Education were significantly more likely to adopt and significantly less likely to close palliative care programs during the study period. Conclusions: This study indicates that palliative care is not equitably adopted nor sustained by hospitals in the United States. Federal and state interventions may be required to ensure that high-quality care is available to our nation's sickest patients.

Use of an Online Palliative Care Clinical Curriculum to Train U.S. Hospital Staff: 2015-2019.

Background: Most clinicians in the United States do not receive pre-professional education in pain and symptom management, communication skills, and caregiver support. The use of these skills by clinicians improves the quality of care for persons living with serious illness and enables the specialty-trained palliative care workforce to focus on patients whose needs are most complex. Objective: To review current trends in hospital use of the Center to Advance Palliative Care (CAPC) online clinical training curriculum. Description: Launched in 2015, CAPC clinical curriculum educates clinicians in the knowledge and skills necessary to improve care for patients with serious illness. CAPC currently offers 43 clinical courses and 4 Designations in recognition of successful completion of training by topic. Results: From January 15, 2015, to August 31, 2019, 26,535 clinicians working in hospitals completed 172,684 clinical courses. Registered nurses represented half of learners, and advanced practice providers were most likely to seek Designation. Physicians made up 22% of all learners; 85% of physician learners came from specialties beyond palliative care. Two of every five U.S. hospitals with more than 300 beds had at least one learner. In post-course evaluations, 84% reported that they will make practice changes as a result, and 70% reported that the content was new. Conclusions: The CAPC clinical curriculum is a widely used and valued method for education in clinical skills specific to the care of people living with serious illness. Findings suggest that an increasing number of hospital leaders recognize the importance of these skills in caring for patients with serious illness and support the necessary training.

Palliative Care Team Perceptions of Standardized Palliative Care Referral Criteria Implementation in Hospital Settings.

Background: Standardized referral criteria can aid in identifying patients who would benefit from palliative care consultation. Little is known, however, on palliative care team members' perceptions of these criteria. Objective: Describe palliative care programs' reasons for referral criteria implementation and their perception of the benefits or disadvantages of its use. Design: Online survey of National Palliative Care Registry™ participants who use standardized referral criteria. Results: Fifty-three programs participated. Late referrals (64.2%) were the most commonly cited reason for referral criteria implementation. The majority (77.4%) felt that referral criteria lead to positive outcomes, including earlier referrals for palliative care-appropriate patients (71.7%). Increases in staff workload and inappropriate referrals were identified as disadvantages of referral criteria use.* Conclusion: Palliative care program members identified both benefits and disadvantages of referral criteria use, but felt they had mostly productive results. *Correction added on March 18, 2021 after first online publication of December 18, 2020: In the Results section of the abstract, the third sentence was changed from "Increases in clinical volume and inappropriate referrals were identified as disadvantages of referral criteria use." to "Increases in staff workload and inappropriate referrals were identified as disadvantages of referral criteria use."

Hospital Characteristics Associated with Palliative Care Program Prevalence.

Background: Over the past two decades, the number of hospitals with palliative care has increased significantly. Objective: This study analyzes the availability of palliative care in U.S. hospitals and examines the variation by hospital characteristics, community-level socioeconomic demographics, health care markets, and geographic characteristics. Methods: Data were obtained from the American Hospital Association Annual Survey Database for 2017 and supplemented with 2016 for nonresponders, the United States Census Bureau's 2017 American Community Survey, the Dartmouth Atlas of Health Care's 2016 Spending and 2011 Hospital and Physician Capacity datasets, the National Palliative Care Registry™, state-level directories on palliative care, and web-based searches. Multivariable logistic regression and average marginal effects were used to examine predictors of hospital palliative care programs. Results: Seventy-two percent of hospitals with 50 or more beds had palliative care programs. Hospital and geographic characteristics were significantly associated with the presence of palliative care. Most notably, nonprofit hospitals were 24.5 percentage points more likely than for-profit hospitals to have palliative care, and metropolitan areas were 15.4 percentage points more likely than rural areas, controlling for other variables. Conclusion: This study demonstrates that availability of palliative care in U.S. hospitals is determined by where patients live and the type of hospital to which they are admitted. Equitable and reliable availability to quality palliative care must improve across the nation.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

BACKGROUND: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. AIM: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. DESIGN: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. SETTING: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). PARTICIPANTS: Informal carers of decedents who had received palliative care participated in the study. RESULTS: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. CONCLUSION: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

Quality Measurement of Serious Illness Communication: Recommendations for Health Systems Based on Findings from a Symposium of National Experts.

Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients. Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.

The National Palliative Care Registry: A Decade of Supporting Growth and Sustainability of Palliative Care Programs.

Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry™ ("the Registry") and describe recent findings from its surveys on hospital palliative care. Description: Established in 2008, the Registry data elements align with National Consensus Project (NCP) guidelines related to palliative care program structures and operations. The Registry provides longitudinal and comparative data that palliative care programs can use to support programmatic growth. Results: As of 2018, >1000 hospitals and 120 community sites have submitted data on their palliative care programs to the Registry. Over the past decade, the percentage of hospital admissions seen by palliative care teams (penetration) has increased from 2.5% to 5.3%. Higher penetration is correlated with teaching hospital status, having a palliative care trigger, and hospital size (p < 0.05). Although overall staffing has expanded, only 42% of Registry programs include the recommended four key disciplines: physician, advanced practice or other registered nurse, social worker, and chaplain. Compliance with NCP guidelines on key structures and processes vary across adult and pediatric programs. Conclusions: The Registry allows palliative care programs to optimize core structures and processes and understand their performance relative to their peers.

Training Clinicians with Communication Skills Needed to Match Medical Treatments to Patient Values.

Most clinicians currently in practice did not receive the evidence-based communication skills training they need to provide high-quality communication for seriously ill older adults and their families. Clinician communication skills are a critical factor in achieving a patient and family understanding of their illness that enables them to share in decision making that will result in medical treatments and social supports that are aligned with their goals and values. Research demonstrates that existing clinician competence in communication skills is extremely variable, that most clinicians need specific communication training to have an adequate level of skill, and that evidence-based training is efficacious. A conservative estimate suggests that more than 219,000 physicians and advance practice providers (APPs) (50% of physicians in high-contact subspecialties and 25% of all APPs) could benefit from training. Combining evidence-based clinician training with health system workflow redesign would likely maximize the impact of this training. We conclude with recommendations designed to address gaps in communication skills through effective training and health system changes in the service of enabling all patients with serious illness and their families to receive care aligned with their personal priorities. J Am Geriatr Soc 67:S435-S441, 2019.

Overcoming Barriers to Growth in Home-Based Palliative Care.

BACKGROUND: Home-based palliative care fills a critical gap between acute care (during crises) and hospice care for seriously ill patients. As of 2018, home-based palliative care capacity in the United States has not scaled to meet patient needs. OBJECTIVES: The Center to Advance Palliative Care (CAPC) conducted a needs assessment to catalog and analyze barriers to growth in the field of home-based palliative care. METHODS: Home-based palliative care program leaders were surveyed and interviewed to elicit information about program characteristics, barriers to meeting national palliative care quality standards or to program growth, and essential elements of program sustainability. RESULTS: Home-based palliative care program leaders cited their major challenges as being: a lack of clarity on the applicability of national standards to home-based programs, a lack of sustainable financing methods for home-based palliative care, and lack of awareness of existing support resources for program design and leadership development. CONCLUSIONS: Home-based palliative care programs will benefit from improved professional awareness of national quality standards and existing technical assistance. New prospects for alternative payment models that allow for sustainable interdisciplinary home-based care represent a promising opportunity for the field.