Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.

Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD. An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.

A Call to Action: Using Curriculum Mapping at Four Medical Schools in Massachusetts to Advance Serious Illness Communication Training in Undergraduate Medical Education.

Background: Practicing physicians require serious illness communication (SIC) skills to ensure high-quality, humanistic care for patients and families as they face life-changing medical decisions. However, a majority of U.S. medical schools do not require formal training in SIC and fail to provide students deliberate practice before graduation. The Massachusetts Medical Schools' Collaborative was created to ensure that students receive foundational SIC training in undergraduate medical education. This Collaborative developed a curriculum-mapping tool to assess SIC at four medical schools. Objective: We aimed to understand existing educational activities across four medical schools and identify opportunities to build longitudinal, developmentally based curricular threads in SIC. Design: From July 2019 to April 2021, faculty, staff, and medical students assessed current educational activities related to five core competencies in SIC, adapted for students from national competencies for palliative medicine fellows, using a curriculum mapping tool. Measurements: The group selected 23 keywords and collected metrics to describe the timing, instruction and assessment for each school's educational activities. Results: On average, there were only 40 hours of required curricula in SIC over four years. Over 80% of relevant SIC hours occurred as elective experiences, mostly during the postclerkship phase, with limited capacity in these elective experiences. Only one school had SIC educational activities during the clerkship phase when students are developing clinical competencies. Assessment methods focused on student participation, and no school-assessed clinical performance in the clerkship or postclerkship phase. Conclusions: Medical schools are failing to consistently train and ensure basic competency in effective, compassionate SIC. Curriculum mapping allows schools to evaluate their current state on a particular topic such as SIC, ensure proper assessment, and evaluate curricular changes over time. Through the deliberate inclusion of SIC competencies in longitudinal curriculum design, we can fill this training gap and create best practices in undergraduate medical education.

Developmental priming of cancer susceptibility.

DNA mutations are necessary drivers of cancer, yet only a small subset of mutated cells go on to cause the disease. To date, the mechanisms that determine which rare subset of cells transform and initiate tumorigenesis remain unclear. Here, we take advantage of a unique model of intrinsic developmental heterogeneity (Trim28+/D9) and demonstrate that stochastic early life epigenetic variation can trigger distinct cancer-susceptibility 'states' in adulthood. We show that these developmentally primed states are characterized by differential methylation patterns at typically silenced heterochromatin, and that these epigenetic signatures are detectable as early as 10 days of age. The differentially methylated loci are enriched for genes with known oncogenic potential. These same genes are frequently mutated in human cancers, and their dysregulation correlates with poor prognosis. These results provide proof-of-concept that intrinsic developmental heterogeneity can prime individual, life-long cancer risk.

Development of Objectives to Inform a National Standardized Primary Palliative Care Curriculum for Health Professions Students.

Introduction: Despite recent educational advances, the need for a national standardized primary palliative care curriculum for health professions students remains evident. Methods: An interprofessional leadership team developed a set of core learning objectives built on previously published competencies. A survey was then sent to palliative care experts for feedback and consensus. Results: Twenty-eight of 31 objectives met a 75% consensus threshold, 2 were combined with others, and 12 were refined based on survey feedback. Discussion: With interprofessional input at all stages, we finalized a comprehensive list of 26 learning objectives for a primary palliative care curriculum targeting health professions students. These objectives will be widely available through an online course but can also be adopted for use by individual educators across health professions institutions. These objectives and related curriculum are critical to producing practice-ready clinicians who are prepared to care for the burgeoning population of seriously ill patients.

Paving the way for universal medical student training in serious illness communication: the Massachusetts Medical Schools' Collaborative.

BACKGROUND: Patients with serious illness look to their clinicians for discussion and guidance on high-stakes treatment decisions, which are complex, emotional and value-laden. However, required training in serious illness communication is rare in U.S. medical schools, with efforts at curricular reform stymied by competing institutional demands, lack of resources and accreditation requirements. We describe an approach to building and scaling medical student training in serious illness communication through the creation of a statewide collaborative of medical schools. METHODS: The Massachusetts Medical Schools' Collaborative is a first-of-its-kind group that promotes longitudinal, developmentally-based curricula in serious illness communication for all students. Convened externally by the Massachusetts Coalition for Serious Illness Care, the collaborative includes faculty, staff, and students from four medical schools. RESULTS: The collaborative started with listening to member's perspectives and collectively developed core competencies in serious illness communication for implementation at each school. We share early lessons on the opportunities, challenges and sustainability of our statewide collective action to influence curricular reform, which can be replicated in other topic areas. CONCLUSIONS: Our next steps include curriculum mapping, student focus groups and faculty development to guide successful and enduring implementation of the competencies to impact undergraduate medical education in Massachusetts and beyond.

Specialty-Aligned Palliative Care: Responding to the Needs of a Tertiary Care Health System.

BACKGROUND: Expanding specialty palliative care within complex health systems involves consideration of patients' unmet needs, clinicians' perceptions of palliative care, and the availability of palliative care resources. Prior to this quality improvement (QI) project, palliative care services in our health system primarily served oncology patients. INTERVENTION: We undertook a prospective strategic planning process that included executive sponsorship and engagement of institutional leaders and clinicians to help define which palliative care services were most needed by the health system. MEASURES: We interviewed and surveyed a broad range of clinicians including physicians, nurse practitioners, and social workers. OUTCOMES: The two most prominent themes that emerged from the stakeholder engagement process were clinicians' wish for specialty-aligned interprofessional palliative care teams and for expansion of nononcology palliative care access. CONCLUSION: Careful needs assessment and stakeholder engagement can result in goal-directed and data-driven expansion of palliative care services within tertiary health care systems.

Improving Serious Illness Communication: Testing the Serious Illness Care Program with Trainees.

BACKGROUND: Early conversations about patients' goals and values improve care, but clinicians struggle to conduct them. The systems-based Serious Illness Care Program (SICP) helps clinicians have more, better, and earlier conversations. Central to this approach is a clinician conversation guide for patient encounters. While the SICP works for practicing clinicians, it has not been tested with medical trainees. INTERVENTION: We adapted the SICP training to emphasize assessing prognostic awareness and responding to emotion. We developed a 2.5-hour SICP workshop for medical students and medical interns that included large- and small-group work, practice with an actor, and interdisciplinary clinician facilitators. We trained 81 students and 156 interns and obtained anonymous quantitative and qualitative feedback. OUTCOMES: Eighty-six percent of students and 91% of residents rated the session as "very good" or "excellent" and >90% of all learners would either recommend this training or intended to apply this to their practice. Post-session learner confidence increased in all communication skills. Learners said the training provided a helpful framework and useful language for these conversations. Resident documentation of serious illness conversations in the medical record increased dramatically during the year following training commencement. CONCLUSIONS: Grounded in principles of adult learning theory, this training was rated highly by trainees and resulted in demonstrable practice change. These early learners were more flexible and willing to try this approach than practicing clinicians who tend to resist or revert to old habits. A Guide represents a new paradigm for teaching communication skills and is valued by early learners.

Role of Palliative Care in the Outpatient Management of the Chronic Heart Failure Patient.

PURPOSE OF REVIEW: Patients with heart failure (HF) have an increased symptom burden and complex psychosocial and decision-making needs that necessitate the integration of palliative care. However, in the current era, palliative care is frequently evoked for these patients only at the end-of-life or in the inpatient setting; rarely is palliative care proactively utilized in outpatients with HF. The purpose of this review is to evaluate the current state of palliative care and heart failure and to provide a roadmap for the integration of palliative care into outpatient HF care. RECENT FINDINGS: Recent studies, including PAL-HF, CASA, and SWAP-HF, have demonstrated that structured palliative care interventions may improve quality of life, depression, anxiety, understanding of prognosis, and well-being in HF. HF is associated with high mortality risk, significant symptom burden, and impaired quality of life. Palliative care can meet many of these needs; however, in the current era, palliative care consultations in HF occur late in the disease course and too often in the inpatient setting. Primary palliative care should be provided to all outpatients with heart failure based on their needs, with referral to secondary palliative care provided based on certain triggers and milestones.

Palliative Care and Communication Training in Neurosurgery Residency: Results of a Trainee Survey.

OBJECTIVE: Neurosurgeons care for critically ill patients near the end of life, yet little is known about how well their training prepares them for this role. We surveyed a random sample of neurosurgery residents to describe the quantity and quality of teaching activities related to serious illness communication and palliative care, and resident attitudes and perceived preparedness to care for seriously ill patients. METHODS: A previously validated survey instrument was adapted to reflect required communication and palliative care competencies in the 2015 the Accreditation Council for Graduate Medical Education (ACGME) Milestones for Neurological Surgery. The survey was reviewed for content validity by independent faculty neurosurgeons, piloted with graduating neurosurgical residents, and distributed online in August 2016 to neurosurgery residents in the United States using the American Association of Neurological Surgeons (AANS)/Congress of Neurological Surgeons (CNS) Joint Section on Neurotrauma and Critical Care email listserv. Multiple choice and Likert scale responses were analyzed using descriptive statistics. RESULTS: Sixty-two responses were recorded between August 2016 and October 2016. Most respondents reported no explicit teaching on: explaining risks and benefits of intubation and ventilation (69%), formulating prognoses in neurocritical care (60%), or leading family meetings (69%). Compared to performing craniotomies, respondents had less frequent practice leading discussions about withdrawing life-sustaining treatment (61% vs. 90%, p < 0.01, "weekly or more frequently"), and were less often observed (18% vs. 87%, p < 0.01) and given feedback on their performance (11% vs. 58%, p < 0.01). Nearly all respondents (95%) felt "prepared to discuss withdrawing life-sustaining treatments," however half (48%) reported they "would benefit from more communication training during residency." Most (87%) reported moral distress, agreeing that they "participated in operations and worried whether surgery aligned with patient goals." CONCLUSIONS: Residents in our sample reported limited formal training, and relatively less observation and feedback, on required ACGME competencies in palliative care and communication. Most reported preparedness in this domain, but many were receptive to more training. Better quality and more consistent palliative care education in neurosurgery residency could improve competency and help ensure that neurosurgical care aligns with patient goals.

Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial.

Importance: Palliative care considerations are typically introduced late in the disease trajectory of patients with advanced heart failure (HF), and access to specialty-level palliative care may be limited. Objective: To determine if early initiation of goals of care conversations by a palliative care-trained social worker would improve prognostic understanding, elicit advanced care preferences, and influence care plans for high-risk patients discharged after HF hospitalization. Design, Setting, and Participants: This prospective, randomized clinical trial of a social worker-led palliative care intervention vs usual care analyzed patients recently hospitalized for management of acute HF who had risk factors for poor prognosis. Analyses were conducted by intention to treat. Interventions: Key components of the social worker-led intervention included a structured evaluation of prognostic understanding, end-of-life preferences, symptom burden, and quality of life with routine review by a palliative care physician; communication of this information to treating clinicians; and longitudinal follow-up in the ambulatory setting. Main Outcomes and Measures: Percentage of patients with physician-level documentation of advanced care preferences and the degree of alignment between patient and cardiologist expectations of prognosis at 6 months. Results: The study population (N = 50) had a mean (SD) age of 72 (11) years and had a mean (SD) left ventricular ejection fraction of 0.33 (13). Of 50 patients, 41 (82%) had been hospitalized more than once for HF management within 12 months of enrollment. At enrollment, treating physicians anticipated death within a year for 32 patients (64%), but 42 patients (84%) predicted their life expectancy to be longer than 5 years. At 6 months, more patients in the intervention group than in the control group had physician-level documentation of advanced care preferences in the electronic health record (17 [65%] vs 8 [33%]; χ2 = 5.1; P = .02). Surviving patients allocated to intervention were also more likely to revise their baseline prognostic assessment in a direction consistent with the physician's assessment (15 [94%] vs 4 [26%]; χ2 = 14.7; P < .001). Among the 31 survivors at 6 months, there was no measured difference between groups in depression, anxiety, or quality-of-life scores. Conclusions and Relevance: Patients at high risk for mortality from HF frequently overestimate their life expectancy. Without an adverse impact on quality of life, prognostic understanding and patient-physician communication regarding goals of care may be enhanced by a focused, social worker-led palliative care intervention that begins in the hospital and continues in the outpatient setting. Trial Registration: clinicaltrials.gov Identifier: NCT02805712.

Primary Care for the Elderly Bereaved: Recommendations for Medical Education.

The aim of this study was to explore the current practices of primary care physicians (PCPs) in providing bereavement care to elderly patients, with implications for medical education. A total of 63 PCPs answered a brief online survey about their typical practices, barriers, comfort level with bereavement, and confidence in their ability to diagnose prolonged grief disorder (PGD). They were recruited through an online newsletter and contacts of one of the authors. The results found that two-thirds of the PCPs do not routinely screen their elderly patients for recent losses, nor do they refer to mental health clinicians when loss is identified. Barriers included not learning of the deaths in patients' lives and lack of time during clinic visits. Those PCPs who had experienced their own losses were significantly more comfortable in speaking to patients about recent losses and more confident in their ability to diagnose PGD. We recommend bereavement education be incorporated into the medical school curriculum from the outset, utilizing the psychological principle of graded exposure to bereaved individuals.

Radiation oncology resident palliative education.

PURPOSE: Although palliative care is recognized as integral to oncology care, limited data exist regarding the extent to which palliative care training is incorporated into radiation oncology residency training in the United States. We aim to characterize US radiation oncology residents' perceived palliative care educational needs and experience to guide future palliative oncology educational interventions. METHODS AND MATERIALS: An 8-person expert panel developed a survey to assess resident perceptions of generalist palliative care education within radiation oncology residency. Domains of palliative oncology education, derived from national guidelines, included symptom management (pain and non-pain), communication about goals of care, advance care planning, psychosocial issues, cultural considerations, spiritual needs, care coordination, and ethical/legal issues. Residents rated adequacy of their training and their perceived competency in each domain. A total of 433 US radiation oncology residents were identified for participation; 404 completed the survey (response rate, 93%). RESULTS: Residents characterized themselves as "not at all/minimally/somewhat confident" in their ability to take care of patients with palliative care issues in the following domains: symptom management (36% pain, 44% non-pain), communication about goals of care (31%), advance care planning (48%), psychosocial (55%), cultural (22%), spiritual (44%), care coordination (50%), and ethical/legal (50%). On average, 79% of residents rated their training as "not/minimally/somewhat" adequate across all domains. Most (96%) view palliative care as an important competency within radiation oncology and 81% desire more palliative care education. CONCLUSIONS: Although the majority of residents view palliative care as an important competency for radiation oncologists, a majority perceived their educational training as inadequate across multiple domains. Most residents desire further palliative oncology care training. These findings suggest efforts should be made to improve palliative care education during radiation oncology training.

Integrating palliative care into routine care of patients with heart failure: models for clinical collaboration.

Heart failure (HF) affects nearly 5.7 million Americans and is described as a chronic incurable illness carrying a poor prognosis. Patients living with HF experience significant symptoms including dyspnea, pain, anxiety, fatigue, and depression. As the illness advances into later stages, symptoms become more intense and refractory to standard treatments, leading to recurrent acute-care utilization and contributing to poor quality of life. Advanced HF symptoms have been described to be as burdensome, if not more than, those in cancer populations. Yet access to and provision of palliative care (PC) for this population has been described as suboptimal. The Institute of Medicine recently called for better access to PC for seriously ill patients. Despite guidelines recommending the inclusion of PC into the multidisciplinary HF care team, there is little data offering guidance on how to best operationalize PC skills in caring for this population. This paper describes the emerging literature describing models of PC integration for HF patients and aims to identify key attributes of these care models that may help guide future multi-site clinical trials to define best practices for the successful delivery of PC for patients living with advanced HF.

Prognosis, Communication, and Advance Care Planning in Heart Failure: A Module for Students, Residents, Fellows, and Practicing Clinicians.

INTRODUCTION: The increasing prevalence, high symptom burden, and medical advances that often prolong the advanced phase of heart failure mandate an organized and thoughtful approach to medical decision making. However, many clinicians have difficulty discussing prognosis and goals of care with patients. Barriers include disease- and therapy-specific prognostication challenges in heart failure and a lack of evidence-based primary palliative care education initiatives. METHODS: In response, we developed this 45-minute training module, which consists of a case-based small-group session and a communication guide. The curriculum highlights prognostication challenges in heart failure and introduces an illness trajectory-based framework to cue iterative goals of care conversations. RESULTS: We piloted this learning module with 46 internal medicine residents and interdisciplinary palliative care fellows in groups of three to 15 and obtained anonymous quantitative and qualitative postsession learner survey data to examine feasibility and acceptability. Trainees rated the session highly. One hundred percent of learners either strongly agreed or agreed the session was clinically useful. Learners unanimously found the teaching methods effective, and most felt they could easily apply these skills to their clinical work. In open-ended feedback, learners said the session gave them a better understanding of the heart failure illness trajectory, an improved framework for discussing goals of care with heart failure patients, and specific language to use when having these discussions. DISCUSSION: This module represents a new paradigm for teaching both prognostication and advance care planning in heart failure in which illness trajectory guides timing and content of goals of care conversations.

A Nephrology Fellows' Communication Skills Course: An Educational Quality Improvement Report.

BACKGROUND: Nephrology fellows need expertise navigating challenging conversations with patients throughout the course of advanced kidney disease. However, evidence shows that nephrologists receive inadequate training in this area. This study assessed the effectiveness of an educational quality improvement intervention designed to enhance fellows' communication with patients who have advanced kidney disease. STUDY DESIGN: Quality improvement project. SETTING & PARTICIPANTS: Full-day annual workshops (2013-2014) using didactics, discussion, and practice with simulated patients. Content focused on delivering bad news, acknowledging emotion, discussing care goals in dialysis decision making when prognosis is uncertain, and addressing dialysis therapy withdrawal and end of life. Participants were first-year nephrology fellows from 2 Harvard-affiliated training programs (N=26). QUALITY IMPROVEMENT PLAN: Study assessed the effectiveness of an intervention designed to enhance fellows' communication skills. OUTCOMES: Primary outcomes were changes in self-reported patient communication skills, attitudes, and behaviors related to discussing disease progression, prognostic uncertainty, dialysis therapy withdrawal, treatments not indicated, and end of life; responding to emotion; eliciting patient goals and values; and incorporating patient goals into recommendations. MEASUREMENTS: Surveys measured prior training, pre- and postcourse perceived changes in skills and values, and reported longer term (3-month) changes in communication behaviors, using both closed- and open-ended items. RESULTS: Response rates were 100% (pre- and postsurveys) and 68% (follow-up). Participants reported improvement in all domains, with an overall mean increase of 1.1 (summed average scores: precourse, 2.8; postcourse, 3.9 [1-5 scale; 5 = "extremely well prepared"]; P<0.001), with improvement sustained at 3 months. Participants reported meaningful changes integrating into practice specific skills taught, such as "Ask-Tell-Ask" and using open-ended questions. LIMITATIONS: Self-reported data may overestimate actual changes; small sample size and the programs' affiliation with a single medical school may limit generalizability. CONCLUSIONS: A day-long course addressing nephrology fellows' communication competencies across the full course of patients' illness experience can enhance fellows' self-reported skills and practices.

Raising the bar for the care of seriously ill patients: results of a national survey to define essential palliative care competencies for medical students and residents.

PURPOSE: Given the shortage of palliative care specialists in the United States, to ensure quality of care for patients with serious, life-threatening illness, generalist-level palliative care competencies need to be defined and taught. The purpose of this study was to define essential competencies for medical students and internal medicine and family medicine (IM/FM) residents through a national survey of palliative care experts. METHOD: Proposed competencies were derived from existing hospice and palliative medicine fellowship competencies and revised to be developmentally appropriate for students and residents. In spring 2012, the authors administered a Web-based, national cross-sectional survey of palliative care educational experts to assess ratings and rankings of proposed competencies and competency domains. RESULTS: The authors identified 18 comprehensive palliative care competencies for medical students and IM/FM residents, respectively. Over 95% of survey respondents judged the competencies as comprehensive and developmentally appropriate (survey response rate = 72%, 71/98). Using predefined cutoff criteria, experts identified 7 medical student and 13 IM/FM resident competencies as essential. Communication and pain/symptom management were rated as the most critical domains. CONCLUSIONS: This national survey of palliative care experts defines comprehensive and essential palliative care competencies for medical students and IM/FM residents that are specific, measurable, and can be used to report educational outcomes; provide a sequence for palliative care curricula in undergraduate and graduate medical education; and highlight the importance of educating medical trainees in communication and pain management. Next steps include seeking input and endorsement from stakeholders in the broader medical education community.

Missed opportunities to train medical students in generalist palliative care during core clerkships.

BACKGROUND: To improve the quality of care for dying patients, experts have called for all clinicians to be able to provide a generalist level of palliative care. Core clinical clerkships provide an opportunity to incorporate palliative care training to address the lack of required palliative care rotations at most U.S. medical schools. OBJECTIVE: The objective of this study was to identify and quantify missed opportunities to train third-year medical students in generalist palliative care during required core clerkships. DESIGN: This study was a cross-sectional survey of third-year students at a leading U.S. medical school without a required palliative care rotation. MEASUREMENTS: Students completed a survey during the last 4 months of the 2012-2013 academic year quantifying and evaluating their experiences caring for dying patients. Attitudes were assessed using a scale from a national survey of students, residents, and faculty. RESULTS: Eighty-eight students responded (response rate [RR]=56%). More than one-quarter (26%) never participated in caring for a patient who died. More than one-half (55%) never delivered significant bad news and 38% never worked with a specialist in palliative medicine. Eighty-four percent of students who cared for a patient who died and 60% of students who delivered significant bad news had one or more of those experiences that were not debriefed. CONCLUSIONS: At an institution without a required palliative care rotation, third-year medical students rarely or never care for patients who die during core clerkships, and when they do, their teams do not debrief or reflect on these experiences. Clinical faculty, including palliative care consultants, can address missed opportunities for palliative care training during core clerkships by augmenting and routinely debriefing students' experiences giving bad news and caring for dying patients.