Lack of Awareness and Common Misconceptions About Palliative Care Among Adults: Insights from a National Survey.

BACKGROUND: Despite recent growth in palliative care programs palliative care remains underutilized. Studies suggest that patients and providers commonly associate palliative care with end of life, often leading to misconceptions and late referrals. OBJECTIVE: To characterize self-reported palliative care knowledge and misconceptions about palliative care among US adults and demographic, health, and social role factors associated with knowledge and misconceptions. DESIGN: We conducted secondary data analysis of nationally representative, self-reported data from the 2018 Health Information National Trends Survey (HINTS) 5, Cycle 2. We examined associations between knowledge and misconceptions about palliative care together with demographics, health care access, health status, and social roles. PARTICIPANTS: 3504 US adults. 2594 included in the first analysis after omitting missing cases; 683 who reported knowing about palliative care were included in the second analysis. MAIN MEASURES: Palliative care knowledge was self-reported in response to: "How would you describe your level of knowledge about palliative care?" Level of misconceptions was based on a series of factual and attitudinal statements about palliative care. KEY RESULTS: Among US adults, 28.8% report knowing about palliative care, but only 12.6% report knowing what palliative care is and hold no misconceptions. Those most likely to report knowing about palliative care are female, college-educated, higher income, have a primary health care provider, or are a caregiver. Among those who report knowing about palliative care, misconceptions were common: 44.4% automatically think of death, 38.0% equate palliative care with hospice, 17.8% believe you must stop other treatments, and 15.9% see palliative care as giving up. CONCLUSIONS: US adults who have some knowledge of palliative care are most likely to confuse it with hospice but are less likely to see it as requiring forgoing treatment or as giving up. Primary care clinicians should be encouraged to communicate about palliative care with patients.

Implementing the patient-centered medical home in complex adaptive systems: Becoming a relationship-centered patient-centered medical home.

BACKGROUND: This study explores the implementation experience of nine primary care practices becoming patient-centered medical homes (PCMH) as part of the New Hampshire Citizens Health Initiative Multi-Stakeholder Medical Home Pilot. PURPOSE: The purpose of this study is to apply complex adaptive systems theory and relationship-centered organizations theory to explore how nine diverse primary care practices in New Hampshire implemented the PCMH model and to offer insights for how primary care practices can move from a structural PCMH to a relationship-centered PCMH. METHODOLOGY/APPROACH: Eighty-three interviews were conducted with administrative and clinical staff at the nine pilot practices, payers, and conveners of the pilot between November and December 2011. The interviews were transcribed, coded, and analyzed using both a priori and emergent themes. FINDINGS: Although there is value in the structural components of the PCMH (e.g., disease registries), these structures are not enough. Becoming a relationship-centered PCMH requires attention to reflection, sensemaking, learning, and collaboration. This can be facilitated by settings aside time for communication and relationship building through structured meetings about PCMH components as well as the implementation process itself. Moreover, team-based care offers a robust opportunity to move beyond the structures to focus on relationships and collaboration. PRACTICE IMPLICATIONS: (a) Recognize that PCMH implementation is not a linear process. (b) Implementing the PCMH from a structural perspective is not enough. Although the National Committee for Quality Assurance or other guidelines can offer guidance on the structural components of PCMH implementation, this should serve only as a starting point. (c) During implementation, set aside structured time for reflection and sensemaking. (d) Use team-based care as a cornerstone of transformation. Reflect on team structures and also interactions of the team members. Taking the time to reflect will facilitate greater sensemaking and learning and will ultimately help foster a relationship-centered PCMH.

Barriers to Effective Communication about Advance Care Planning and Palliative Care: A Qualitative Study.

Purpose: The purpose of this study was to identify barriers to effective conversations about advance care planning (ACP) and palliative care reported by health care and community-based service providers in Massachusetts, USA. Methods: This qualitative research analyzed open-ended responses to two survey questions, inquiring about perceived barriers to having conversations about ACP and palliative care with patients and consumers. Data were collected between November 2017 and June 2019 from nine organizations in Massachusetts, including health care provider organizations, health insurers, community-based organizations, and a nursing education institution. Two researchers reviewed and coded the responses and identified common themes inductively. Results: Across 142 responses, primary barriers to ACP included hesitation and lack of understanding and knowledge, discomfort and resistance among service providers, lack of staff knowledge, difficulties with follow-up, and differences in ACP policies across regions. Common barriers to palliative care were misconceptions about palliative care and lack of knowledge, service providers' lack of preparedness, and limited policy support and availability. Challenges relevant to both ACP and palliative care were fear and discomfort around serious illness discussions, lack of knowledge and awareness, discussions that occur too late, and cultural and language barriers. Conclusion: Health care practitioners and community-based professionals reported consumer-, service provider-, and system-level barriers to facilitating conversations about ACP and palliative care with patients experiencing serious illness. There is a need for more tools and support to strengthen service providers' ACP and palliative care competencies and to promote a structured approach to health care planning conversations.

Improving Interorganizational Coordination Between Primary Care and Oncology: Adapting a Chronic Care Management Model for Patients With Cancer.

The objective of this study was to explore the implementation of a payment and delivery system innovation to improve coordination and communication between primary care and oncology. We employed a qualitative case study approach, conducting interviews (n = 18), and reviewing archival materials. Chronic care coordinators and the cancer center social worker acted as boundary spanners. The chronic care coordinator role built on medical home infrastructure, applying the chronic care model to cancer care. Coordination from primary care to oncology became more routinized, with information sharing prompted by specific events. These new boundary spanner roles enabled greater coordination around uncertain and interdependent tasks. Recommendations for scaling up include the following: establish systematic approaches to learning from implementation, leverage existing capacity for scalability, and attend to the content and purpose of information sharing.

Quality Improvement Initiatives to Reduce Mortality: An Opportunity to Engage Palliative Care and Improve Advance Care Planning.

BACKGROUND:: Despite substantial efforts to integrate palliative care and improve advance care planning, both are underutilized. Quality improvement initiatives focused on reducing mortality may offer an opportunity for facilitating engagement with palliative care and advance care planning. OBJECTIVE:: In the context of an initiative to reduce acute myocardial infarction (AMI) mortality, we examined challenges and opportunities for engaging palliative care and improving advance care planning. METHODS:: We performed a secondary analysis of qualitative data collected through the Leadership Saves Lives initiative between 2014 and 2016. Data included in-depth interviews with hospital executives, clinicians, administrators, and quality improvement staff (n = 28) from 5 hospitals participating in the Mayo Clinic Care Network. Focused analysis examined emergent themes related to end-of-life experiences, including palliative care and advance care planning. RESULTS:: Participants described challenges related to palliative care and advance care planning in the AMI context, including intervention decisions during an acute event, delivering care aligned with patient and family preferences, and the culture around palliative care and hospice. Participants proposed strategies for addressing such challenges in the context of improving AMI quality outcomes. CONCLUSIONS:: Clinicians who participated in an initiative to reduce AMI mortality highlighted the challenges associated with decision-making regarding interventions, systems for documenting patient goals of care, and broader engagement with palliative care. Quality improvement initiatives focused on mortality may offer a meaningful and feasible opportunity for engaging palliative care. Primary palliative care training is needed to improve discussions about patient and family goals of care near the end of life.

Influencing organisational culture to improve hospital performance in care of patients with acute myocardial infarction: a mixed-methods intervention study.

BACKGROUND: Hospital organisational culture affects patient outcomes including mortality rates for patients with acute myocardial infarction; however, little is known about whether and how culture can be positively influenced. METHODS: This is a 2-year, mixed-methods interventional study in 10 US hospitals to foster improvements in five domains of organisational culture: (1) learning environment, (2) senior management support, (3) psychological safety, (4) commitment to the organisation and (5) time for improvement. Outcomes were change in culture, uptake of five strategies associated with lower risk-standardised mortality rates (RSMR) and RSMR. Measures included a validated survey at baseline and at 12 and 24 months (n=223; average response rate 88%); in-depth interviews (n=393 interviews with 197 staff); and RSMR data from the Centers for Medicare and Medicaid Services. RESULTS: We observed significant changes (p<0.05) in culture between baseline and 24 months in the full sample, particularly in learning environment (p<0.001) and senior management support (p<0.001). Qualitative data indicated substantial shifts in these domains as well as psychological safety. Six of the 10 hospitals achieved substantial improvements in culture, and four made less progress. The use of evidence-based strategies also increased significantly (per hospital average of 2.4 strategies at baseline to 3.9 strategies at 24 months; p<0.05). The six hospitals that demonstrated substantial shifts in culture also experienced significantly greater reductions in RSMR than the four hospitals that did not shift culture (reduced RSMR by 1.07 percentage points vs 0.23 percentage points; p=0.03) between 2011-2014 and 2012-2015. CONCLUSIONS: Investing in strategies to foster an organisational culture that supports high performance may help hospitals in their efforts to improve clinical outcomes.

Impact of a Patient-Centered Medical Home Pilot on Utilization, Quality, and Costs and Variation in Medical Homeness.

This study evaluated the impact of a patient-centered medical home (PCMH) pilot on utilization, costs, and quality and assessed variation in PCMH components. Data included the New Hampshire Comprehensive Healthcare Information System and Medical Home Index (MHI) scores for 9 pilot sites. A quasi-experimental, difference-in-difference model with propensity score-matched comparison group was employed. MHI scores were collected in late 2011. There were no statistically significant findings for utilization, cost, or quality in the expected direction. MHI scores suggest variation in type and level of implemented features. Understanding site-specific PCMH components and targeted change enacted by PCMHs is critical for future evaluation.

Synthesis Of Research On Patient-Centered Medical Homes Brings Systematic Differences Into Relief.

The patient-centered medical home (PCMH) model emphasizes comprehensive, coordinated, patient-centered care, with the goals of reducing spending and improving quality. To evaluate the impact of PCMH initiatives on utilization, cost, and quality, we conducted a meta-analysis of methodologically standardized findings from evaluations of eleven major PCMH initiatives. There was significant heterogeneity across individual evaluations in many outcomes. Across evaluations, PCMH initiatives were not associated with changes in the majority of outcomes studied, including primary care, emergency department, and inpatient visits and four quality measures. The initiatives were associated with a 1.5 percent reduction in the use of specialty visits and a 1.2 percent increase in cervical cancer screening among all patients, and a 4.2 percent reduction in total spending (excluding pharmacy spending) and a 1.4 percent increase in breast cancer screening among higher-morbidity patients. These associations were significant. Identification of the components of PCMHs likely to improve outcomes is critical to decisions about investing resources in primary care.