Implementing the Serious Illness Care Program in Safety Net Health Systems: A Qualitative Study.

CONTEXT: Interventions to improve the quality of care for people affected by serious illness commonly fail to reach patients from marginalized and underserved communities, which include those characterized by racialized or indigenous identity, sexual and gender minority status, and rural living. Interventions to improve care through serious illness conversations have demonstrated benefit, but little is known about their implementation in health systems that predominantly serve these patient groups. OBJECTIVES: The study aimed to understand factors influencing implementation of a serious illness communication-focused intervention-the Serious Illness Care Program in health systems who primarily provide care to marginalized and underserved communities. METHODS: Qualitative interviews (16) and focus groups (3) were conducted with 19 interdisciplinary team members from six geographically diverse U.S. healthcare systems. Using a template analysis approach, investigators coded data inductively and deductively to identify themes. RESULTS: Three themes emerged: patient factors, intervention elements, and health system contextual factors. Participants highlighted mission-driven efforts, creativity, interprofessional practice, and trainees as enablers of success. They identified weaknesses in the intervention's communication tool-the Serious Illness Conversation Guide as barriers to implementation of conversations. Resource constraints, socio-economic vulnerability, and mistrust in the health system were seen as additional barriers. CONCLUSIONS: Health systems that provide care to underserved and marginalized communities face unique challenges implementing the Serious Illness Care Program. They also possess assets, some unique to these settings, that support program adoption. Findings suggest that implementation of similar programs in low-resource healthcare settings may help address unmet needs among marginalized populations.

Core Competencies for Serious Illness Conversations: An Integrative Systematic Review.

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.

An Integrative Review of the State of POLST Science: What Do We Know and Where Do We Go?

OBJECTIVES: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research. DESIGN: Integrative review. SETTING AND PARTICIPANTS: Not applicable. METHODS: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization. RESULTS: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified. CONCLUSIONS AND IMPLICATIONS: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes.

Core elements of serious illness conversations: an integrative systematic review.

BACKGROUND: Ariadne Labs' Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups. Explicating the core elements of serious illness conversations could support the inclusion or exclusion of certain components in future iterations of the programme and the guide. AIM: This integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG. DESIGN: Literature published between 1 January 2014 and 20 March 2023 was searched in MEDLINE, PsycINFO, CINAHL and PubMed. All articles were evaluated using the Joanna Briggs Institute Critical Appraisal Guidelines. Data were analysed with thematic synthesis. RESULTS: A total of 64 articles met the inclusion criteria. Three themes were revealed: (1) serious illness conversations serve different functions that are reflected in how they are conveyed; (2) serious illness conversations endeavour to discover what matters to patients and (3) serious illness conversations seek to align what patients want in their life and care. CONCLUSIONS: Core elements of serious illness conversations included explicating the intention, framing, expectations and directions for the conversation. This encompassed discussing current and possible trajectories with a view towards uncovering matters of importance to the patient as a person. Preferences and priorities could be used to inform future preparation and recommendations. Serious illness conversation elements could be adapted and altered depending on the intended purpose of the conversation.

Testing the What Matters to Me workbook in a diverse sample of seriously ill patients and caregivers.

Objectives: We evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project. Methods: We purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the Workbook, a survey, and a semi-structured in-depth interview about their experience. Qualitative analysis of interviews and notes was employed to extract themes. Simple descriptive statistics were employed to analyze eight investigator authored questions. Results: Twenty-nine study participants completed twenty-one interviews and twenty-five surveys. Ratings for safety (3.87/4, SD = 0.43) and acceptability (3.59/4, SD = 0.956) were higher than ratings for ease of use (3.30/4, SD = 0.97) and usefulness (3.24/4, SD = 0.80). Qualitative analysis identified that while the workbook was safe, acceptable, easy to use, and useful, it is more important who is recommending it and how they are explaining it. Conclusion: If presented in the right way by a trustworthy person, the What Matters to Me Workbook can be an easy to use, useful, and safe resource for patients with serious illness and their caregivers. Innovation: The Workbook focuses on serious illness rather than end-of-life and meshes with a clinician-facing conversation guide and a health-system level intervention.

Lessons Learned About System-Level Improvement in Serious Illness Communication: A Qualitative Study of Serious Illness Care Program Implementation in Five Health Systems.

BACKGROUND: Serious illness communication is a key element of high-quality care, but it is difficult to implement in practice. The Serious Illness Care Program (SICP) is a multifaceted intervention that contributes to more, earlier, and better serious illness conversations and improved patient outcomes. This qualitative study examined the organizational and implementation factors that influenced improvement in real-world contexts. METHODS: The authors performed semistructured interviews of 30 health professionals at five health systems that adopted SICP as quality improvement initiatives to investigate the organizational and implementation factors that appeared to influence improvement. RESULTS: After SICP implementation across the organizations studied, approximately 4,661 clinicians have been trained in serious illness communication and 56,712 patients had had an electronic health record (EHR)-documented serious illness conversation. Facilitators included (1) visible support from leaders, who financially invested in an implementation team and champions, expressed the importance of serious illness communication as an institutional priority, and created incentives for training and documenting serious illness conversations; (2) EHR and data infrastructure to foster performance improvement and accountability, including an accessible documentation template, a reporting system, and customized data feedback for clinicians; and (3) communication skills training and sustained support for clinicians to problem-solve communication challenges, reflect on communication experiences, and adapt the intervention. Inhibitors included leadership inaction, competing priorities and incentives, variable clinician acceptance of EHR and data tools, and inadequate support for clinicians after training. CONCLUSION: Successful implementation appeared to rely on multilevel organizational strategies to prioritize, reward, and reinforce serious illness communication. The insights derived from this research may function as an organizational road map to guide implementation of SICP or related quality initiatives.

Improving serious illness communication: a qualitative study of clinical culture.

OBJECTIVE: Communication about patients' values, goals, and prognosis in serious illness (serious illness communication) is a cornerstone of person-centered care yet difficult to implement in practice. As part of Serious Illness Care Program implementation in five health systems, we studied the clinical culture-related factors that supported or impeded improvement in serious illness conversations. METHODS: Qualitative analysis of semi-structured interviews of clinical leaders, implementation teams, and frontline champions. RESULTS: We completed 30 interviews across palliative care, oncology, primary care, and hospital medicine. Participants identified four culture-related domains that influenced serious illness communication improvement: (1) clinical paradigms; (2) interprofessional empowerment; (3) perceived conversation impact; (4) practice norms. Changes in clinicians' beliefs, attitudes, and behaviors in these domains supported values and goals conversations, including: shifting paradigms about serious illness communication from 'end-of-life planning' to 'knowing and honoring what matters most to patients;' improvements in psychological safety that empowered advanced practice clinicians, nurses and social workers to take expanded roles; experiencing benefits of earlier values and goals conversations; shifting from avoidant norms to integration norms in which earlier serious illness discussions became part of routine processes. Culture-related inhibitors included: beliefs that conversations are about dying or withdrawing care; attitudes that serious illness communication is the physician's job; discomfort managing emotions; lack of reliable processes. CONCLUSIONS: Aspects of clinical culture, such as paradigms about serious illness communication and inter-professional empowerment, are linked to successful adoption of serious illness communication. Further research is warranted to identify effective strategies to enhance clinical culture and drive clinician practice change.

Advance Care Planning in the United States: A 2023 review.

Advance Care Planning (ACP) in the US is complex due in part to a lack of a unified health care system, though more recent policy changes permitting reimbursement for ACP conversations offer some hope. One key barrier to ACP is public perceptions of ACP, made worse by a historical focus on messaging that is unappealing and does not meet people's need to focus on the present before contemplating the future. As we learn more about how to engage the public, there is also increasing recognition that the previous focus on making very specific decisions about the future needs to shift to a focus on preparing people for communication and decision making. Numerous programs exist for health care professionals to support meaningful explorations of goals, values, and preferences, and there is growing availability of resources to support this work, both in the community and health care setting. Further research is needed to understand the full complexity of ACP implementation and to identify person-centred outcomes to support high quality ACP.

Patient-physician conversations about life-sustaining treatment: Treatment preferences and participant assessments.

OBJECTIVE: In 2019, the Danish parliament issued legislation requiring Danish physicians to clarify and honor seriously ill patients' treatment preferences. The American POLST (Physician Orders for Life-Sustaining Treatment) document could be a valuable model for this process. The aim of the study was to examine patients' preferences for life-sustaining treatment and participant assessment of a Danish POLST form. METHODS: The study is a prospective intervention based on a pilot-tested Danish POLST form. Participant assessments were examined using questionnaire surveys. Patients with serious illness and/or frailty from seven hospital wards, two general practitioners, and four nursing homes were included. The patients and their physicians completed the POLST form based on a process of shared decision-making. RESULTS: A total of 95 patients (aged 41-95) participated. Hereof, 88% declined cardiopulmonary resuscitation, 83% preferred limited medical interventions or comfort care, and 74% did not require artificial nutrition. The preferences were similar within age groups, genders, and locations, but with a tendency toward younger patients being more in favor of full treatment and nursing home residents being more in favor of cardiopulmonary resuscitation. Questionnaire response rates were 69% (66/95) for patients, 79% (22/28) for physicians, and 31% (9/29) for nurses. Hereof, the majority of patients, physicians, and nurses found that the POLST form was usable for conversations and decision-making about life-sustaining treatment to either a high or very high degree. SIGNIFICANCE OF RESULTS: The majority of seriously ill patients did not want a resuscitation attempt and opted for selected treatments. The majority of participants found that the Danish POLST was usable for conversations and decisions about life-sustaining treatment to either a high or a very high degree, and that the POLST form facilitated an opportunity to openly discuss life-sustaining treatment.

Patient Identification for Serious Illness Conversations: A Scoping Review.

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.

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences.

OBJECTIVE: To explore patients' and physicians' perspectives on a decision-making conversation for life-sustaining treatment, based on the Danish model of the American Physician Orders for Life Sustaining Treatment (POLST) form. DESIGN: Semi-structured interviews following a conversation about preferences for life-sustaining treatment. SETTING: Danish hospitals, nursing homes, and general practitioners' clinics. SUBJECTS: Patients and physicians. MAIN OUTCOME MEASURES: Qualitative analyses of interview data. FINDINGS: After participating in a conversation about life-sustaining treatment using the Danish POLST form, a total of six patients and five physicians representing different settings and age groups participated in an interview about their experience of the process. Within the main research questions, six subthemes were identified: Timing, relatives are key persons, clarifying treatment preferences, documentation across settings, strengthening patient autonomy, and structure influences conversations. Most patients and physicians found having a conversation about levels of life-sustaining treatment valuable but also complicated due to the different levels of knowledge and attending to individual patient needs and medical necessities. Relatives were considered as key persons to ensure the understanding of the treatment trajectory and the ability to advocate for the patient in case of a medical crisis. The majority of participants found that the conversation strengthened patient autonomy. CONCLUSION: Patients and physicians found having a conversation about levels of life-sustaining treatment valuable, especially for strengthening patient autonomy. Relatives were considered key persons. The timing of the conversation and securing sufficient knowledge for shared decision-making were the main perceived challenges.KEY POINTSConversations about preferences for life-sustaining treatment are important, but not performed systematically.When planning a conversation about preferences for life-sustaining treatment, the timing of the conversation and the inclusion of relatives are key elements.Decision-making conversations can help patients feel in charge and less alone, and make it easier for health professionals to provide goal-concordant care.Using a model like the Danish POLST form may help to initiate, conduct and structure conversations about preferences for life-sustaining treatment.

Serious Illness Care Programme-contextual factors and implementation strategies: a qualitative study.

OBJECTIVES: The Serious Illness Care Programme (SICP) is a multicomponent evidence-based intervention that improves communication about patients' values and goals in serious illness. We aim to characterise implementation strategies for programme delivery and the contextual factors that influence implementation in three 'real-world' health system SICP initiatives. METHODS: We employed a qualitative thematic framework analysis of field notes collected during the first 1.5 years of implementation and a fidelity survey. RESULTS: Analysis revealed empiric evidence about implementation and institutional context. All teams successfully implemented clinician training and an electronic health record (EHR) template for documentation of serious illness conversations. When training was used as the primary strategy to engage clinicians, however, clinician receptivity to the programme and adoption of conversations remained limited due to clinical culture-related barriers (eg, clinicians' attitudes, motivations and practice environment). Visible leadership involvement, champion facilitation and automated EHR-based data feedback on documented conversations appeared to improve adoption. Implementing these strategies depended on contextual factors, including leadership support at the specialty level, champion resources and capacity, and EHR capabilities. CONCLUSIONS: Health systems need multifaceted implementation strategies to move beyond the limited impact of clinician training in driving improvement in serious illness conversations. These include EHR-based data feedback, involvement of specialty leaders to message the programme and align incentives, and local champions to problem-solve frontline challenges longitudinally. Implementation of these strategies depended on a favourable institutional context. Greater attention to the influence of contextual factors and implementation strategies may enable sustained improvements in serious illness conversations at scale.

Discussing patient preferences for levels of life-sustaining treatment: development and pilot testing of a Danish POLST form.

BACKGROUND: Medically frail and/or chronically ill patients are often admitted to Danish hospitals without documentation of patient preferences. This may lead to inappropriate care. Modelled on the American Physician Orders for Life-Sustaining Treatment (POLST) form, the purpose of the study was to develop and pilot test a Danish POLST form to ensure that patients' preferences for levels of life-sustaining treatment are known and documented. METHODS: The study was a mixed methods study. In the initial phase, a Danish POLST form was developed on the basis of literature and recommendations from the National POLST organisation in the US. A pilot test of the Danish POLST form was conducted in hospital wards, general practitioners' clinics, and nursing homes. Patients were eligible for inclusion if death was assessed as likely within 12 months. The patient and his/her physician engaged in a conversation where patient values, beliefs, goals for care, diagnosis, prognosis, and treatment alternatives were discussed. The POLST form was completed based on the patient's values and preferences. Family members and/or nursing staff could participate. Participants' assessments of the POLST form were evaluated using questionnaires, and in-depth interviews were conducted to explore experiences with the POLST form and the conversation. RESULTS: In total, 25 patients participated, 45 questionnaires were completed and 14 interviews were conducted. Most participants found the POLST form readable and understandable, and 93% found the POLST form usable to a high or very high degree for discussing preferences regarding life-sustaining treatment. Three themes emerged from the interviews: (a) an understandable document is essential for the conversation, (b) handling and discussing wishes, and (c) significance for the future. CONCLUSION: The Danish version of the POLST form is assessed by patients, families, physicians, and nurses as a useful model for obtaining and documenting Danish patients' preferences for life-sustaining treatment. However, this needs to be confirmed in a larger-scale study.

Shared Medication PLanning In (SIMPLIfy) Home Hospice: An Educational Program to Enable Goal-Concordant Prescribing In Home Hospice.

CONTEXT: Simplifying medication regimens by tapering and/or withdrawing unnecessary drugs is important to optimize quality of life and safety for patients with serious illness. Few resources are available to educate clinicians, patients and family caregivers about this process. OBJECTIVE: To describe the development of an educational program called Shared Medication PLanning In (SIMPLIfy) Home Hospice. METHODS: An environmental scan identified a state-of-the-art educational program for home hospice deprescribing that we adapted using a stakeholder panel engagement process. The stakeholder panel (two hospice administrators, three nurses, two physicians, two pharmacists, and two former family caregivers) drawn from two geographically diverse hospice agencies reviewed the educational program and recommended additional content. RESULTS: Iterative rounds of review and feedback resulted in: 1) a three-part clinician educational program (total duration = 1.5 hour) that presents a standardized, goal-concordant, medication review approach to align medications and conversations about regimen simplification with patient and family caregiver goals of care; 2) a patient-family caregiver medication management educational notebook that presents common symptoms, hospice medications, and medication regimen simplification principles; and 3) a brief guide including helpful phrases to use as conversation starters for key steps in the program. A professional designer created thematic coherence for all materials that was well received by stakeholder panelists and hospice staff. CONCLUSION: Educational materials can support hospice programs' and clinicians' efforts to implement goal-concordant medication simplification that optimizes end-of-life outcomes for patients and family caregivers. Evaluation of outcomes including medication appropriateness and family caregiver medication administration burden are not yet available.

Decreasing Trends in Opioid Prescribing on Discharge to Hospice Care.

CONTEXT: There are concerns that policies aimed to prevent opioid misuse may unintentionally reduce access to opioids for patients at end-of-life. OBJECTIVE: We assessed trends in opioid prescribing among patients on discharge from the hospital to hospice care. METHODS: This was a retrospective cohort study among adult (age ≥18 years) patients discharged from a 544-576 bed, academic medical center to hospice care between January 1, 2010 to December 31, 2018. Study data were collected from a repository of patients' electronic health record data. Our primary outcome was the frequency of opioid prescribing on discharge to hospice care. Our primary exposure was the calendar year of discharge. We also investigated non-opioid analgesic prescribing and stratified opioid prescribing trends by patient characteristics (e.g., demographics, cancer diagnosis, and location of hospice care). RESULTS: Among 2,648 discharges to hospice care, mean (standard deviation) age was 65.8 (16.0) years, 46.3% were female, and 58.7% had a cancer diagnosis. Opioid prescribing on discharge to hospice care decreased significantly from 91.2% (95% confidence interval (CI) = 87.1%-94.1%) in 2010 to 79.3% (95% CI = 74.3%-83.5%) in 2018 adjusting for age, sex, cancer diagnosis, and location of hospice care. Prescribing of non-opioid analgesic medications increased over the same time period. CONCLUSIONS: We observed a statistically significant decreasing trend in opioid prescribing on discharge to hospice care. Further research should aim to confirm these findings and to identify opportunities to ensure optimal pain management among patients transitioning to hospice care.