Context: Guidelines recommend palliative care for patients with chronic kidney disease (CKD), who experience a high pain and symptom burden, and receive intensive treatments that often do not align with their values. A lack of scalable specialty palliative care services has prompted calls for attention to primary palliative care, delivered in primary care and nephrology settings. Objectives: The objectives of this study were to 1) describe expectations for care to meet the palliative care needs of people living with CKD, and limitations to meeting those expectations in the current model, and 2) identify potential interventions to meet patients’ palliative care needs. Methods: We conducted semi-structured interviews with clinicians from primary care, nephrology, and palliative care to assess 1) reasonable expectations for meeting palliative needs, 2) barriers to integrating primary palliative care, and 3) potential intervention points. Results: Clinicians discussed their expectations for high-quality communication (e.g., discussing disease understanding, assessing goals of care) and better integration of palliative care services. Clinicians expressed barriers to delivering that care, including poor inter-clinician communication. To address barriers, clinicians outlined potential intervention points, such as building collaborative models of care, and structural triggers to identify patients who may be appropriate for palliative care. Conclusion: Interventions to address gaps in palliative care delivery for people living with CKD should incorporate systematic identification of patients with palliative care needs and structural mechanisms to meeting those needs via specialty and primary palliative care.

Background-Mineralocorticoid receptor antagonists (MRAs) are the most underutilized pharmacotherapy for heart failure. Minimal data are available on the barriers to MRA adoption from the perspective of prescribing clinicians. Methods and Results-A mixed-methods study consisting of a survey (n=50), focus groups (n=39), interviews (n=6) with clinicians at a single US Department of Veterans Affairs medical center served to ascertain barriers to optimal use of MRAs. Participants were drawn from 6 groups: cardiology providers, cardiology fellows, hospitalists, clinical pharmacists, internal medicine residents, and primary care providers. Qualitative data were iteratively coded with qualitative data analysis software. The survey response rate was 17.3%. Overall, 51% of survey respondents were unfamiliar with eplerenone, and 6% were unfamiliar with spironolactone. In addition, 30% of respondents reported that they would order a laboratory test >2 weeks after a new MRA prescription, although that is beyond the guideline recommendation. Most providers correctly identified New York Heart Association class 3 and 4 patients as MRA eligible, but only 42% identified class 2 patients as MRA eligible. Through analysis of focus groups, we identified 8 barriers to MRA use in 3 categories: patient-based barriers (concerns about polypharmacy and comorbidities, adverse effects, perceived patient nonadherence), provider-based barriers (unclear roles and responsibilities, coordination and transitions of care, lack of experience or familiarity with MRAs), and system-based barriers (system overload and provider time constraints, lack of systematic follow-up procedures). Conclusions-Eight primary barriers to MRA adoption at the provider, patient, and health system levels were identified from the prescriber perspective. These barriers can inform the creation of multilevel interventions that will be required to close the gap in MRA adoption.

Objective To measure the associations between newly initiated palliative care in the last six months of life, healthcare use, and location of death in adults dying from non-cancer illness, and to compare these associations with those in adults who die from cancer at a population level. Design Population based matched cohort study. Setting Ontario, Canada between 2010 and 2015. Participants 113 540 adults dying from cancer and non-cancer illness who were given newly initiated physician delivered palliative care in the last six months of life administered across all healthcare settings. Linked health administrative data were used to directly match patients on cause of death, hospital frailty risk score, presence of metastatic cancer, residential location (according to 1 of 14 local health integration networks that organise all healthcare services in Ontario), and a propensity score to receive palliative care that was derived by using age and sex. Main outcome measures Rates of emergency department visits, admissions to hospital, and admissions to the intensive care unit, and odds of death at home versus in hospital after first palliative care visit, adjusted for patient characteristics (such as age, sex, and comorbidities). Results In patients dying from non-cancer illness related to chronic organ failure (such as heart failure, cirrhosis, and stroke), palliative care was associated with reduced rates of emergency department visits (crude rate 1.9 (standard deviation 6.2) v 2.9 (8.7) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.85 to 0.91), admissions to hospital (crude rate 6.1 (standard deviation 10.2) v 8.7 (12.6) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.86 to 0.91), and admissions to the intensive care unit (crude rate 1.4 (standard deviation 5.9) v 2.9 (8.7) per person year; adjusted rate ratio 0.59, 95% confidence interval 0.56 to 0.62) compared with those who did not receive palliative care. Additionally increased odds of dying at home or in a nursing home compared with dying in hospital were found in these patients (n=6936 (49.5%) v n=9526 (39.6%); adjusted odds ratio 1.67, 95% confidence interval 1.60 to 1.74). Overall, in patients dying from dementia, palliative care was associated with increased rates of emergency department visits (crude rate 1.2 (standard deviation 4.9) v 1.3 (5.5) per person year; adjusted rate ratio 1.06, 95% confidence interval 1.01 to 1.12) and admissions to hospital (crude rate 3.6 (standard deviation 8.2) v 2.8 (7.8) per person year; adjusted rate ratio 1.33, 95% confidence interval 1.27 to 1.39), and reduced odds of dying at home or in a nursing home (n=6667 (72.1%) v n=13 384 (83.5%); adjusted odds ratio 0.68, 95% confidence interval 0.64 to 0.73). However, these rates differed depending on whether patients dying with dementia lived in the community or in a nursing home. No association was found between healthcare use and palliative care for patients dying from dementia who lived in the community, and these patients had increased odds of dying at home. Conclusions These findings highlight the potential benefits of palliative care in some non-cancer illnesses. Increasing access to palliative care through sustained investment in physician training and current models of collaborative palliative care could improve end-of-life care, which might have important implications for health policy.

Family meetings are fundamental to the practice of palliative medicine and serve as a cornerstone of intervention on the inpatient palliative care consultation service. The COVID-19 pandemic disrupted the structure and process of in-patient family meetings, owing to necessary but restrictive visitor policies that did not allow families to be present in the hospital. We describe implementation of telemedicine to facilitate electronic family (e-family) meetings to facilitate in-patient palliative care. Of 67 scheduled meetings performed by the palliative care service, only two meetings were aborted for a 97% success rate of scheduled meetings occurring. On a five-point Likert-type scale, the average clinician rating of the e-family meeting overall quality was 3.18 (SD, .96). Of the 10 unique family participants who agreed to be interviewed, their overall ratings of the e-family meetings were high. Over 80% of respondent families participants reported that they agreed or strongly agreed that they were able to ask all of their questions, felt comfortable expressing their thoughts and feelings with the clinical team, felt like they understood the care their loved one received, and that the virtual family meeting helped them trust the clinical team. Of patients who were able to communicate, 50% of family respondents reported that the e-family meeting helped them understand their loved one's thoughts and wishes.

Context: Palliative care (PC) research has grown over the last 20 years. Yet, the causal components and pathways of PC interventions remain unclear. Objectives: To document the prevalence and application of theoretical frameworks in developing and testing PC interventions. Methods: We conducted a secondary analysis of previously published systematic reviews of PC randomized clinical trials. Trials were evaluated for explicit mention of a theoretical framework, process or delivery model, or clinical practice guideline that supported the development of the intervention. We used a structured data extraction form to document study population, outcomes, and whether and how authors used a theoretical framework, process/delivery model, or clinical practice guideline. We applied an adapted coding scheme to evaluate use of theoretical frameworks. Results: We reviewed 85 PC trials conducted between 1984 and 2021. Thirty-eight percent (n = 32) of trials explicitly mentioned a theoretical framework, process or delivery model, or clinical practice guideline as a foundation for the intervention design. Only nine trials included a theoretical framework, while the remaining 23 cited a process/delivery model or clinical practice guideline. Conclusion: Most PC trials do not cite a theoretical foundation for their intervention design. Future work should focus on developing and validating new theoretical frameworks and modifying existing theories and models to better explain the mechanisms of the variety of PC interventions.

Background: Heart failure is characterized by physical and emotional symptoms and decreased quality of life (QoL). Palliative care can reduce burdens of serious illness but often is limited to inpatient or academic settings. Objectives: To develop and test the Primary Education for Nurses in Palliative care-HF (PENPal-HF) intervention, training outpatient cardiology nurses to address symptom burden, patient priorities for care and QoL, and advance care planning as part of quarterly HF visits. Methods: We conducted a pilot randomized clinical trial for adults with NYHA Stage III or IV HF and ≥ 2 hospitalizations in the past 12 months, recruited from a community-based cardiology clinic. Participants were randomized 2:1, PENPal-HF plus usual care versus usual care alone. Primary outcomes were feasibility and acceptability. Results: We randomized 30 adults with Stage III HF – 20 to PENPal-HF and 10 to usual care. Most in the intervention group (71%) and in the control group (62%) completed the study through the final outcome assessment in week 56; 5 participants died. Of 20 participants in the intervention, 14 (70%) remained in the study through the end of intervention visits; 11 (55%) completed all visits. Most intervention participants (93.75%) agreed or strongly agreed that they were satisfied with their care, and 87.5% agreed or strongly agreed that all people with HF should receive the intervention. Most intervention group participants (93.75%) reported a perceived improvement in physical symptoms, mood, and/or QoL. Conclusions: This pilot study suggests that nurse-led primary palliative care in outpatient cardiology settings is promising. Research is warranted to determine efficacy and effectiveness.

Context: The symptom burden associated with heart failure (HF) remains high despite improvements in therapy and calls for the integration of palliative care into traditional HF care. Little is also known about how patients with HF perceive palliative care and patient-level characteristics associated with the need for palliative care, which could influence the utilization of palliative care in HF management. Objectives: To identify characteristics of HF patients associated with perceived need for palliative care. Methods: We analyzed data from the Hopeful Heart Trial, which studied the efficacy of a collaborative care intervention for treating both systolic HF and depression. Palliative care preferences were collected during routine study follow-up. We assessed the association of perceived need for palliative care during study follow-up and baseline data on sociodemographics, clinical measures, and patient-centered outcomes. We then used descriptive statistics and logistic regression to analyze our data. Results: Participants were on average 64 years old, male, and reported severe HF symptoms and poor to below average quality of life (. Most had unfavorable impressions of palliative care, but many still perceived a need for palliative care. Factors associated with perceived need for palliative care included depression, non-white race, more severe HF symptoms, and lower mental & physical health-related quality of life. Conclusion: HF patients’ beliefs about palliative care may affect utilization of palliative care. Specific characteristics can help identify patients with HF who may benefit from palliative care involvement. Education targeted towards patients with selected attributes may help incorporate palliative care into HF management.

Introduction Cystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional symptom burdens, disruptions to social roles and complex treatment decision making. While palliative care (PC) interventions have been shown to relieve many such burdens in other serious illnesses, no rigorous evidence exists for palliative care in CF. Thus, this study aims to compare the effect of specialist palliative care plus usual CF care vs usual CF care alone on patient quality of life. Methods and analysis This is a five-site, two-arm, partially masked, randomised superiority clinical trial. 264 adults with CF will be randomly assigned to usual CF care or usual CF care plus a longitudinal palliative care intervention delivered by a palliative care specialist. The trial's primary outcome is patient quality of life (measured with the Functional Assessment of Chronic Illness Therapy-Palliative care instrument). Secondary outcomes include symptom burden, satisfaction with care and healthcare utilisation. Outcomes will be measured at 12 months (primary endpoint) and 15 months (secondary endpoint). In addition, we will conduct qualitative interviews with patient participants, caregivers, and palliative care and CF care team members to explore perceptions of the intervention's impact and barriers and facilitators to dissemination. Ethics and dissemination Human subjects research ethics approval was obtained from all participating sites, and all study participants gave informed consent. We will publish the results of this trial in a peer-reviewed journal. Trial registration number ISRCTN53323164.

BACKGROUND: The HeartFull Collaborative is a regionally organized model of care which involves specialist palliative care and cardiology health care providers (HCPs) in a collaborative, home-based palliative care approach for patients with advanced heart failure (AHF). We evaluated HCP perspectives of barriers and facilitators to providing coordinated palliative care for patients with AHF at home. METHODS AND RESULTS: We conducted a qualitative study with 17 HCPs (11 palliative care and 6 cardiology) who were involved in the HeartFull Collaborative from April 2013 to March 2020. Individual, semi-structured interviews were held with each prac-titioner from November 2019 to March 2020. We used an interpretivist and inductive thematic analysis approach. We identified facilitators at 2 levels: (1) individual HCP level (on-going professional education to expand competency) and (2) interpersonal level (shared care between specialties, effective communication within the care team). Ongoing barriers were identified at 2 levels: (1) individual HCP level (e.g. apprehension of cardiology practitioners to introduce palliative care) and (2) system level (e.g. lack of availability of personal support worker hours). CONCLUSIONS: Our results suggest that a collaborative shared model of care delivery between palliative care and cardiology improves knowledge exchange, collaboration and communication between specialties, and leads to more comprehensive patient care. Addressing ongoing barriers will help improve care delivery. Findings emphasize the acceptability of the program from a provider perspective, which is encouraging for future implementation. Further research is needed to improve prog-nostication, assess patient and caregiver perspectives regarding this model of care, and assess the economic feasibility and impact of this model of care.

Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams. Methods: CF care team members (“clinicians”), adults with CF (“patients”), and family caregivers (“caregivers”) rated the ability of CF clinicians to provide aspects of PC using a five-point scale (“poor” to “excellent”). Median ratings were compared between groups. Results: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as “very good” at basic pain assessment and “good” at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P <.0001), basic depression assessment (P <.001), and discussing transplant, advance directives, end of life, code status, and hospice (all P <.0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P <.001), end of life (P =.006), advance directives (P <.001), code status (P =.012), and hospice (P =.016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training. Conclusions: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians’ more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.