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Clinician distress is common in serious illness care. Palliative specialists are often consulted for cases involving significant distress among primary teams. Consults involving clinician distress can be challenging to navigate when it feels like 1) palliative specialists do not have the right skills to be helpful or 2) palliative specialists are being asked to 'fix' difficult situations that would require changing other people's attitudes, beliefs, or behaviors, or healthcare systems writ large. This article uses three composite cases to illustrate types of clinician distress and examine the benefits and risks of palliative specialist involvement. We conclude with a discussion of potential impacts of palliative care consults for clinician distress on the field of palliative care and consider next steps in critically important efforts to support and sustain the entire workforce-both palliative specialists and nonspecialists alike-when caring for patients with serious illness and their family caregivers.

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BACKGROUND: Serious illness conversations may help patients avoid unwanted treatments. We previously piloted the telehealth Serious Illness Care Program (SICP) for older adults with acute myeloid leukemia and myelodysplastic syndrome. OBJECTIVE: In this study, we aimed to understand the experience of the telehealth SICP from the clinician's perspective. METHODS: We studied 10 clinicians who delivered the telehealth SICP to 20 older adults with acute myeloid leukemia or myelodysplastic syndrome. Quantitative outcomes included confidence and acceptability. Confidence was measured using a 22-item survey (range 1-7; a higher score is better). Acceptability was measured using an 11-item survey (5-point Likert scale). Hypothesis testing was performed at α=.10 (2-tailed) due to the pilot nature and small sample size. Clinicians participated in audio-recorded qualitative interviews at the end of the study to discuss their experience. RESULTS: A total of 8 clinicians completed the confidence measure and 7 clinicians completed the acceptability measure. We found a statistically significant increase in overall confidence (mean increase of 0.5, SD 0.6; P=.03). The largest increase in confidence was in helping families with reconciliation and goodbye (mean 1.4, SD 1.5; P=.04). The majority of clinicians agreed that the format was simple (6/7, 86%) and easy to use (6/7, 86%). Clinicians felt that the telehealth SICP was effective in understanding their patients' values about end-of-life care (7/7, 100%). A total of three qualitative themes emerged: (1) the telehealth SICP deepened relationships and renewed trust; (2) each telehealth SICP visit felt unique and personal in a positive way; and (3) uninterrupted, unrushed time optimized the visit experience. CONCLUSIONS: The telehealth SICP increased confidence in having serious illness conversations while deepening patient-clinician relationships. TRIAL REGISTRATION: ClinicalTrials.gov NCT04745676; https://www.clinicaltrials.gov/study/NCT04745676.

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Objective: The Serious Illness Care Program was developed to support goals and values discussions between seriously ill patients and their clinicians. The core competencies, that is, the essential clinical conversation skills that are described as requisite for effective serious illness conversations (SICs) in practice, have not yet been explicated. This integrative systematic review aimed to identify core competencies for SICs in the context of the Serious Illness Care Program. Methods: Articles published between January 2014 and March 2023 were identified in MEDLINE, PsycINFO, CINAHL, and PubMed databases. In total, 313 records underwent title and abstract screening, and 96 full-text articles were assessed for eligibility. The articles were critically appraised using the Joanna Briggs Institute Critical Appraisal Guidelines, and data were analyzed using thematic synthesis. Results: In total, 53 articles were included. Clinicians' core competencies for SICs were described in 3 themes: conversation resources, intrapersonal capabilities, and interpersonal capabilities. Conversation resources included using the conversation guide as a tool, together with applying appropriate communication skills to support better communication. Intrapersonal capabilities included calibrating one's own attitudes and mindset as well as confidence and self-assurance to engage in SICs. Interpersonal capabilities focused on the clinician's ability to interact with patients and family members to foster a mutually trusting relationship, including empathetic communication with attention and adherence to patient and family members views, goals, needs, and preferences. Conclusions: Clinicians need to efficiently combine conversation resources with intrapersonal and interpersonal skills to successfully conduct and interact in SICs.

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Institutional transference is a phenomenon describing patients' attitudes toward the institutions where they receive mental health or medical care. While transference toward individual clinicians in palliative care has been described, attitudes of patients with serious illness toward the institutions where they receive specialized care have not been described. Here, we present three cases which demonstrate the phenomenon of institutional transference in patients with serious illness and the resulting clinical implications, which include countertransferential responses of clinicians caring for them. We consider three conditions: (1) the idealized reputation of the academic cancer center, often a tertiary referral center; (2) loss of an institutional connection during care transitions; and (3) countertransferential reactions to institutional transference. We highlight characteristics and personality styles of individuals with cancer that may complicate and intensify institutional transference and identify potential interventions to address common challenges associated with institutional transference.

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BACKGROUND: Conversations about goals, values and priorities with patients that are seriously ill are associated with improved palliative healthcare. The Serious Illness Care Program is a multi-component program that can facilitate more, better, and earlier conversations between clinicians and seriously ill patients. For successful and sustainable implementation of the Serious Illness Care Program, it is important to consider how stakeholders perceive it. The aim of our study was to explore physicians' perceptions and experiences of implementing the Serious Illness Care Program. METHODS: Data were collected through four focus group discussions with physicians (n = 14) working at a hospital where the Serious Illness Care program was in the process of being implemented. Data were analyzed with inductive thematic analysis. RESULTS: Physicians' perceptions of the implementation encompassed three thematic areas: hovering between preparedness and unpreparedness, being impacted and being impactful, and picking pieces or embracing it at all. CONCLUSIONS: This study identified key aspects related to the individual physician, the care team, the impact on the patient, and the organizational support that were perceived to influence the implementation and sustainable integration of the Serious Illness Care Program. Describing these aspects provides insight into how the Serious Illness Care Program is implemented in practice and indicates areas for future training and development. TRIAL REGISTRATION: Not applicable.

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BACKGROUND: Existing health care research, including serious illness research, often underrepresents individuals from historically marginalized communities. Capturing the nuanced perspectives of individuals around their health care communication experiences is difficult. New research strategies are needed that increase engagement of individuals from diverse backgrounds. OBJECTIVE: The aim of this study was to develop a mixed methods approach with qualitative online forums to better understand health communication experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals; older adults; and people with low income, disability, or serious illness. METHODS: We used a multiphase mixed methods, community-informed research approach to design study instruments and engage participants. We engaged a diverse group of collaborators with lived experience of navigating the health care system who provided feedback on instruments, added concepts for testing, and offered guidance on creating a safe experience for participants (phase 1). We conducted a national quantitative survey between April and May 2021 across intrapersonal, interpersonal, and systems-level domains, with particular focus on interpersonal communication between patients and clinicians (phase 2). We conducted two asynchronous, qualitative online forums, a technique used in market research, between June and August 2021, which allowed us to contextualize the learnings and test concepts and messages (phase 3). Using online forums allowed us to probe more deeply into results and hypotheses from the survey to better understand the "whys" and "whats" that surfaced and to test public messages to encourage action around health. RESULTS: We engaged 46 community partners, including patients and clinicians from a Federally Qualified Health Center, to inform study instrument design. In the quantitative survey, 1854 adults responded, including 50.5% women, 25.2% individuals over 65 years old, and 51.9% individuals with low income. Nearly two-thirds identified as non-Hispanic white (65.7%), 10.4% identified as non-Hispanic Black, and 15.5% identified as Hispanic/Latino. An additional 580 individuals participated in online forums, including 60.7% women, 17.4% individuals over 65 years old, and 49.0% individuals with low income. Among the participants, 70.3% identified as non-Hispanic white, 16.0% as non-Hispanic Black, and 9.5% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the forums. CONCLUSIONS: We achieved modest overrepresentation of people who were over 65 years old, identified as non-Hispanic Black, and had low income in our online forums. The size of the online forums (N=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Individuals who identify as Hispanic/Latino remained underrepresented, likely because the online forums were offered only in English. Overall, our findings demonstrate the feasibility of using the online forum qualitative approach in a mixed methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions.

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BACKGROUND: Psychedelic-assisted therapies (PAT) are emerging as a promising treatment for psycho-existential distress in patients with serious illness. A recent qualitative analysis of perspectives of 17 experts in serious illness care and/or PAT research identified divergent views on the therapeutic potential and safety of PAT in patients with serious illness. This paper further analyzes the factors that may influence these views. OBJECTIVES: To identify factors underlying the attitudes of experts in serious illness care and/or PAT toward PAT and its potential role in serious illness care. METHODS: Semi-structured interviews of 17 experts in serious illness care and/or PAT from the United States and Canada were analyzed to identify factors cited as influencing their views on PAT. RESULTS: Five factors were identified as influencing experts' attitudes toward PAT: perception of unmet need, knowledge of empirical studies of PAT, personal experience with psychedelics, professional background, and age/generation. In addition, an integrative theme emerged from the analysis, namely PAT's disruptive potential at 4 levels relevant to serious illness care: patient's experience of self, illness, and death; relationships with loved ones and health-care providers; existing clinical models of serious illness care; and societal attitudes toward death. Whether this disruptive potential was viewed as a therapeutic opportunity, or an undue risk, was central in influencing experts' level of support. Experts' perception of this disruptive potential was directly influenced by the 5 identified factors. SIGNIFICANCE OF RESULTS: Points of disruption potentially invoked by PAT in serious illness care highlight important practical and philosophical considerations when working to integrate PAT into serious illness care delivery in a safe and effective way.

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Discrimination against lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons in health care creates barriers to serious illness care, including patients avoiding or delaying necessary care, providers disrespecting wishes of surrogates, and adverse outcomes for patients and families. A cross-sectional mixed-methods study using an online survey was used to determine the extent to which LGBTQ+ patients and spouses, partners, and widows experienced disrespectful or inadequate care due to sexual orientation or gender identity. A total of 290 LGBTQ+ patients and partners reported high levels of disrespectful and inadequate care, including 35.2% stating their provider was insensitive to them because of their identity; 30% reporting their provider was unaware of LGBTQ+ health needs; 23.1% feeling judged; 20.7% experiencing rudeness; 20.3% stating providers did not use their correct pronouns; and 19.7% reporting their treatment decisions were disregarded. Black and Hispanic patients were 2-4 times more likely than non-Hispanic White patients to report discrimination. This study demonstrated high levels of disrespectful and inadequate care towards patients and partners due to being LGBTQ+, which was especially problematic for Black and Hispanic patients and those living in politically conservative regions. Recommendations include federal and state civil rights laws to prohibit LGBTQ+ discrimination and institutional practices to address discrimination, including cultural sensitivity training for staff.

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Serious illness conversations aim to align medical care and treatment with patients' values, goals, priorities, and preferences. Timely and accurate identification of patients for serious illness conversations is essential; however, existent methods for patient identification in different settings and population groups have not been compared and contrasted. This study aimed to examine the current literature regarding patient identification for serious illness conversations within the context of the Serious Illness Care Program and/or the Serious Illness Conversation Guide. A scoping review was conducted using the Joanna Briggs Institute guidelines. A comprehensive search was undertaken in four databases for literature published between January 2014 and September 2021. In total, 39 articles met the criteria for inclusion. This review found that patients were primarily identified for serious illness conversations using clinical/diagnostic triggers, the 'surprise question', or a combination of methods. A diverse assortment of clinicians and non-clinical resources were described in the identification process, including physicians, nurses, allied health staff, administrative staff, and automated algorithms. Facilitators and barriers to patient identification are elucidated. Future research should test the efficacy of adapted identification methods and explore how clinicians inform judgements surrounding patient identification.

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The Serious Illness Care Program (SICP), designed by Ariadne Labs, is a multicomponent intervention to improve conversations about values and goals for patients with a life-limiting illness. In oncology, implementation of the SICP achieved more, earlier, and better-quality conversations and reduced anxiety and depression among patients with advanced cancer. In this commentary, we describe the SICP, including results from the cluster-randomized trial, provide examples of real-world implementation of this program, and highlight ongoing challenges and barriers that are preventing widespread adoption of this intervention into routine practice. For the SICP to be successfully embedded into routine patient care, it will require significant effort, including ongoing leadership support and training opportunities, champions from all sectors of the interdisciplinary team, and adaptation of the program to a wider range of patients. Future research should also investigate how early conversations can be translated into personalized care plans for patients.

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Background: The Serious Illness Care Program (SICP), developed in 2011 by Ariadne Labs, restructures care so that knowing and then honoring patients' wishes becomes part of routine care. Objectives: 1) summarize patient perceptions of use of the Serious Illness Conversation Guide (SICG) components, 2) assess whether a serious illness conversation was documented in the electronic health record (EHR) and identify the SICG components that were included, 3) summarize clinician perceptions of use of the SICG components, and 4) assess the association of documented SICG components with the patient's perception of the SICG discussion. Methods: Clinicians at three family medicine offices were trained in serious illness conversations using the SICG. They documented their serious illness conversations in the medical record. Retrospective chart review for SICG components was conducted for patients. Patients and clinicians completed questionnaires about their experience with the SICG. Statistical analysis included the Pearson chi-square test for categorical variables and Cohen's kappa to determine agreement between clinician documentation and patient perception. Results: Eighty-nine patients consented and completed their baseline questionnaire. Mean age of the 89 patients was 72 years and 65 (73%) were female. Thirty (34%) medical records had one or more SICG components documented. Seventy-nine (89%) patients reported at least one individual component of the SICG being discussed. Clinicians reported they engaged in asking patients what is important to them at a mean of 5.9, with 7 being "all the time". There was slight agreement (kappa = .19) for patient perception and clinician documentation of discussing patient goals, but no agreement for any of the other SICG components. Conclusion: Even among trained clinicians, only one-third of patients had documentation of at least one SICG component. Only slight agreement was found between clinician documentation of SICG in the medical record and patient perception of SICG discussion.

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Background: To compare serious illness programs (SIPs) using recently developed patient experience measures, adjustment must be made for patient characteristics not under control of the programs. Objectives: To develop a case-mix adjustment model to enable fair comparison of patient experience between SIPs by investigating the roles of patient characteristics, proxy response, and mode of survey administration (mail-only vs. mail with telephone follow-up) in survey responses. Methods: Using survey data from 2263 patients from 32 home-based SIPs across the United States, we fit regression models to assess the association between patient-level variables and scores for seven quality measures (Communication, Care Coordination, Help for Symptoms, Planning for Care, Support for Family and Friends, and two global assessments of care). Characteristics that are not consequences of the care the program delivered were considered as adjustors. Results: Final recommended case-mix adjustors are age, education, primary diagnosis, self-reported functional status, self-rated physical health, self-rated mental health, proxy respondent use, and response percentile (a measure of how soon a person responded compared with others in the same program and mode). Age, primary diagnosis, self-rated mental health, and proxy respondent use had the most impact on program-level scores. We also recommend adjusting for mode of survey administration. We find that up to 12 percent of pairs of programs would have their rankings reversed by adjustment. Conclusions: To ensure fair comparison of programs, scores should be case-mix adjusted for variables that influence patients' reports about care quality, but are not under the control of the program administering care.

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Objective: To describe key stakeholders' perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders' general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care's definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

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Background: There is a pressing need for standardized measures to assess the quality of home-based serious illness care. Currently, there are no validated quality measures that are specific to home-based serious illness programs (SIPs) and the unique needs of their patients. Objective: To develop and evaluate standardized survey-based measures of serious illness care experiences for assessing and comparing quality of home-based serious illness care programs. Methods: From October 2019 through January 2020, we administered a survey to patients who received care from 32 home-based SIPs across the United States. Using the 2263 survey responses, we assessed item performance and constructed composite measures via factor analysis, evaluated item-scale correlations, estimated reliability, and examined validity by regressing overall ratings and willingness to recommend care on each composite. Results: The overall survey response rate was 36%. Confirmatory factor analyses supported five composite quality measures: Communication, Care Coordination, Help for Symptoms, Planning for Care, and Support for Family and Friends. Cronbach's alpha estimates for the composite measures ranged from 0.69 to 0.85, indicating adequate internal consistency in assessing their underlying constructs. Interprogram reliability ranged from 0.67 to 0.80 at 100 completed surveys per measure, meeting common standards for distinguishing between programs' performance. Together, the composites explained 45% of the variance in patients' overall care ratings. Communication, Care Coordination, and Planning for Care were the strongest predictors of overall ratings. Conclusion: Our analyses provide evidence of the feasibility, reliability, and validity of proposed survey-based measures to assess the quality of home-based serious illness care from the perspective of patients and their families.

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BACKGROUND: In response to the Institute of Medicine (IOM) report, Dying in America, we undertook an institution wide effort to improve the experience of patients and families facing serious illness by engaging leadership and developing a program to promote the practice of generalist palliative care. MEASURES: The impact of the program was measured with process measures related to its' three parts. INTERVENTION: We developed a three-part generalist palliative care program that focuses on 1) instructional design, 2) advance care planning, and 3) engagement. OUTCOMES: Over four years, the program trained 51 interprofessional clinicians in a two-week intensive palliative care course and 1,541 interprofessional clinicians in a 90-150 min skills-based training. Clinicians documented 15,791 serious illness conversations. Zoom community engagement sessions were attended by 411 live viewers, and subsequently, 1918 YouTube views. Additionally, we report on the impact of the COIVD-19 crisis on our efforts. Early in the pandemic, over two months, 464 interprofessional clinicians documented 5,168 conversations with patients. CONCLUSION/LESSONS LEARNED: A broad based strategy resulted wide institutional engagement with serious illness care.

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BACKGROUND: Advance care planning (ACP) conversations are associated with improved end-of-life healthcare outcomes and patients want to engage in ACP with their healthcare providers. Despite this, ACP conversations rarely occur in primary care settings. The objective of this study was to implement ACP through adapted Serious Illness Care Program (SICP) training sessions, and to understand primary care provider (PCP) perceptions of implementing ACP into practice. METHODS: We conducted a quality improvement project guided by the Normalization Process Theory (NPT), in an interprofessional academic family medicine group in Hamilton, Ontario, Canada. NPT is an explanatory model that delineates the processes by which organizations implement and integrate new work. PCPs (physicians, family medicine residents, and allied health care providers), completed pre- and post-SICP self-assessments evaluating training effectiveness, a survey evaluating program implementability and sustainability, and semi-structured qualitative interviews to elaborate on barriers, facilitators, and suggestions for successful implementation. Descriptive statistics and pre-post differences (Wilcoxon Sign-Rank test) were used to analyze surveys and thematic analysis was used to analyze qualitative interviews. RESULTS: 30 PCPs participated in SICP training and completed self-assessments, 14 completed NoMAD surveys, and 7 were interviewed. There were reported improvements in ACP confidence and skills. NoMAD surveys reported mixed opinions towards ACP implementation, specifically concerning colleagues' abilities to conduct ACP and patients' abilities to participate in ACP. Physicians discussed busy clinical schedules, lack of patient preparedness, and continued discomfort or lack of confidence in having ACP conversations. Allied health professionals discussed difficulty sharing patient prognosis and identification of appropriate patients as barriers. CONCLUSIONS: Training in ACP conversations improved PCPs' individual perceived abilities, but discomfort and other barriers were identified. Future iterations will require a more systematic process to support the implementation of ACP into regular practice, in addition to addressing knowledge and skill gaps.

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CONTEXT: Defining high quality palliative care in seriously ill surgical patients is essential to provide patient-centered surgical care. Quality indicators specifically for seriously ill surgical patients are necessary in order to integrate palliative care into existing surgical quality improvement programs. OBJECTIVES: To identify existing quality indicators that measure palliative care delivery in seriously ill surgical patients, characterize their development, and assess their methodological quality. METHODS: A PRISMA-guided systematic review included studies that reported on the development process and characteristics of palliative care quality indicators and guidelines in adult surgical patients. Relevant measures were categorized into the previously defined National Consensus Project domains of palliative care and the Donabedian quality framework, and assessed for methodological quality. RESULTS: There were 263 unique measures identified from 26 studies, of which 70% were process measures. Indicators addressing Care of the Patient Near the End of Life (31.5%) and Physical Aspects of Care (20.8%) were the most common. Indicators addressing Spiritual (2.6%) and Cultural Aspects of Care (1.2%) were the least common. Methodological quality varied widely across studies. Although most studies defined a purpose for the indicators and used scientific evidence, many studies lacked input from target populations and few had discussed the practical application of indicators. CONCLUSION: This review was a key step that informed efforts to develop quality indicators for seriously ill surgical patients. Few indicators addressed non-physical aspects of suffering and no indicators were identified addressing palliative surgery. Future attention is needed toward the development and practical application of palliative care quality indicators in surgical patients.

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Purpose: Guidelines suggest that advance care planning (ACP) and goals-of-care discussions should be conducted for patients with advanced cancer early in the course of their disease. A recent audit of our health system found that these discussions were rarely being documented in the electronic medical record (EMR). We conducted a quality improvement initiative to improve rates of documentation of goals and wishes among patients with advanced cancer. Methods: On the basis of previous analyses of this problem, we determined that provider capability and opportunity were the main barriers to conducting and documenting serious illness conversations. We implemented the serious illness care program (SICP), a systematic multicomponent intervention that has shown potential for conducting and documenting ACP discussions in two oncology clinics. Our goal was to conduct at least 24 serious illness conversations over the implementation period, with documentation of at least 95% of all conversations. Results: The SICP was implemented in two outpatient medical oncology clinics. A total of 15 serious illness care conversations occurred and 14 (93%) of these conversations were documented in the EMR. Total rates of documentation increased between the preimplementation and implementation period (4.2%-5.4% for clinician A and 0%-7.3% for clinician B). Conclusion: Implementation of the SICP resulted in increased rates of documentation, but the target number of conversations was not met. Further improvement cycles are required to address barriers to conducting and documenting routine serious illness conversations.

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BACKGROUND: Although quality-of-care domains for home-based primary and palliative programs have been proposed, they have had limited testing in practice. Our aim was to evaluate the care provision in a community-based serious-illness care program, a combined home-based primary and palliative care model. METHODS: Retrospective chart review of patients in an academic community-based serious-illness care program in central North Carolina from August 2014 to March 2016 (n = 159). Chart review included demographics, health status, and operationalized measures of seven quality-of-care domains: medical assessment, care coordination, safety, quality of life, provider competency, goal attainment, and access. RESULTS: Patients were mostly women (56%) with an average age of 70 years. Patients were multi-morbid (53% ≥3 comorbidities), functionally impaired (45% had impairment in ≥2 activities of daily living) and 32% had dementia. During the study period, 31% of patients died. Chart review found high rates assessment of functional status (97%), falls (98%), and medication safety (96%). Rates of pain assessment (70%), advance directive discussions (65%), influenza vaccination (59%), and depression assessment (54% of those with a diagnosis of depression) were lower. Cognitive barriers, spiritual needs, and behavioral issues were assessed infrequently (35, 22, 21%, respectively). CONCLUSION: This study is one of the first to operationalize and examine quality-of-care measures for a community-based serious-illness care program, an emerging model for vulnerable adults. Our operationalization should not constitute validation of these measures and revealed areas for improvement; however, the community-based serious-illness care program performed well in several key quality-of-care domains. Future work is needed to validate these measures.

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Clinicians working with seriously ill patients need the skills to effectively communicate with patients and their families throughout the trajectory of illness. Common communication tasks that arise in the care of seriously ill patients include advance care planning, delivering serious news, discussing prognosis, eliciting values, and medical decision making. Clinicians often use goals of care conversations to facilitate these tasks. Similar to other procedures, goals of care conversations require a systematic, evidence-based approach to ensure quality and value. This article provides a framework that clinicians can follow to effectively communicate with seriously ill patients and families and promote patient-centered care.

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