Continuous palliative sedation until death: a qualitative study of palliative care clinicians' experiences.

BACKGROUND: The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. AIM: This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. DESIGN: We conducted a qualitative study based on focus group discussions. SETTING/PARTICIPANTS: We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. RESULTS: An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. CONCLUSIONS: Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

Qualitative Analysis of Initial Palliative Care Consultations in Amyotrophic Lateral Sclerosis.

BACKGROUND: Palliative care (PC) benefits patients with amyotrophic lateral sclerosis (ALS), however the needs of patients and caregivers and the optimal timing of PC discussions remains unclear. This study reports the analysis of PC consult notes from a larger feasibility trial. The specific aims of this analysis were to i) identify the PC needs of patients with ALS via qualitative analysis and ii) identify characteristics of patients and caregivers that could predict specific PC needs. METHODS: This study was nested within a nonrandomized, prospective study of patients with ALS (and their caregivers) being treated at a multidisciplinary ALS clinic. Exclusion criteria of the main study were age <18 years, inability to complete questionnaires, and prior receipt of PC. All patients were offered a PC consultation (PCC); those who accepted were included in this nested study. Consultation notes were reviewed and thematic and content analyses were conducted. The occurrence of themes across patient and caregiver contextual variables were examined. RESULTS: Thirty-two PCCs were completed between October 2020 and April 2022. Six major themes were identified: PC roles (with subthemes encompassing the spectrum of specialist PC practice including symptom management and advance care planning), engagement with PC, patients' concerns for their caregivers, caregiver-specific concerns, finances, and COVID-19. An average of 12 topics were discussed per PCC (range = 3-22). Discussion of advance care planning, care coordination, and symptom management was common, and these topics were not discussed more frequently in PCCs with patients with lower functional status, more bulbar symptoms, or lower quality of life. Time from diagnosis did not impact topics of discussion. Patients reporting more symptoms of depression more frequently required psychological support, particularly regarding loss of independence, employment, and leisure activities. DISCUSSION: Patients with ALS and their caregivers have a wide range of PC needs. These needs vary irrespective of time from diagnosis, functional status, or quality of life, therefore PCC is recommended for all patients with ALS. PCC should be individualized based on patient and caregiver preferences. TRIAL REGISTRATION INFORMATION: The study was registered with ClinicalTrials.gov (NCT04257760; https://clinicaltrials.gov/ct2/show/NCT04257760) on February 6, 2020. The first enrollment occurred on October 20, 2020.

Measuring the Use of End-of-Life Symptom Relief Medications in Long-Term Care Homes-a Qualitative Study.

Background: At the end of life, individuals may experience physical symptoms such as pain, and guidelines recommend medications to manage these symptoms. Yet, little is known about the symptom management long-term care (LTC) residents receive at the end of life. Our research team developed a metric-whether residents receive one or more prescriptions for an end-of-life symptom management medication in their last two weeks-to explore end-of-life care for LTC residents. This qualitative study aimed to inform the refinement of the end-of-life prescribing metric, including the acceptability and applicability to assess the quality of a resident's symptom management at end-of-life. Methods: We conducted 14 semi-structured interviews with Ontario health-care providers (physicians and nurses) who work in LTC homes and family caregivers of residents who died in LTC. Interviews were conducted virtually between February 2021 and December 2022, and were analyzed using thematic analysis. Results: We identified three major themes relating to perceptions of the metric: 1) appropriateness, 2) health-care provider applicability, and 3) caregiver applicability. Participants noted that the metric may be appropriate to assess end-of-life care, but noted important nuances. Regarding applicability, health-care providers found value in the metric and that it could inform their practice. Conversely, caregivers found limited value in the metric. Conclusion: The proposed metric captures a very specific aspect of end-of-life care-whether end-of-life medications were prescribed or not. Participants deemed that the metric may reflect whether LTC homes have processes to manage a resident's end-of-life symptoms with medication. However, participants thought the metric could not provide a complete picture of end-of-life care and its quality.

Changes in End-of-Life Symptom Management Prescribing among Long-Term Care Residents during COVID-19.

OBJECTIVE: To examine changes in the prescribing of end-of-life symptom management medications in long-term care (LTC) homes during the COVID-19 pandemic. DESIGN: Retrospective cohort study using routinely collected health administrative data in Ontario, Canada. SETTING AND PARTICIPANTS: We included all individuals who died in LTC homes between January 1, 2017, and March 31, 2021. We separated the study into 2 periods: before COVID-19 (January 1, 2017, to March 17, 2020) and during COVID-19 (March 18, 2020, to March 31, 2021). METHODS: For each LTC home, we measured the percentage of residents who died before and during COVID-19 who had a subcutaneous symptom management medication prescription in their last 14 days of life. We grouped LTC homes into quintiles based on their mean prescribing rates before COVID-19, and examined changes in prescribing during COVID-19 and COVID-19 outcomes across quintiles. RESULTS: We captured 75,438 LTC residents who died in Ontario's 626 LTC homes during the entire study period, with 19,522 (25.9%) dying during COVID-19. The mean prescribing rate during COVID-19 ranged from 46.9% to 79.4% between the lowest and highest prescribing quintiles. During COVID-19, the mean prescribing rate in the lowest prescribing quintile increased by 9.6% compared to before COVID-19. Compared to LTC homes in the highest prescribing quintile, homes in the lowest prescribing quintile experienced the highest proportion of COVID-19 outbreaks (73.4% vs 50.0%), the largest mean outbreak intensity (0.27 vs 0.09 cases/bed), the highest mean total days with a COVID-19 outbreak (72.7 vs 24.2 days), and the greatest proportion of decedents who were transferred and died outside of LTC (22.1% vs 8.6%). CONCLUSIONS AND IMPLICATIONS: LTC homes in Ontario had wide variations in the prescribing rates of end-of-life symptom management medications before and during COVID-19. Homes in the lower prescribing quintiles had more COVID-19 cases per bed and days spent in an outbreak.

Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

BACKGROUND: Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. OBJECTIVE: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). METHODS: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. RESULTS: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. CONCLUSION: Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Mapping an undergraduate medical education curriculum against national and international palliative care reference learning objectives.

BACKGROUND: The teaching of palliative care competencies is an essential component of undergraduate medical education. There is significant variance in the palliative care content delivered in undergraduate medical curricula, revealing the utility of reference standards to guide curricular development and assessment. To evaluate our university's undergraduate palliative care teaching, we undertook a curriculum mapping exercise, comparing official learning objectives to the national Educating Future Physicians in Palliative and End-of-Life Care (EFPPEC) and the international Palliative Education Assessment Tool (PEAT) reference objectives. METHODS: Multiple assessors independently compared our university's UGME learning objectives with EFPPEC and PEAT reference objectives to determine the degree-of-coverage. Visual curriculum maps were created to depict in which part of the curriculum each objective is delivered and by which medical specialty. RESULTS: Of 122 EFPPEC objectives, 55 (45.1%) were covered fully, 42 (34.4%) were covered partially, and 25 (20.5%) were not covered by university objectives. Of 89 PEAT objectives, 40 (44.9%) were covered fully, 35 (39.3%) were covered partially, and 14 (15.7%) were not covered by university objectives. CONCLUSIONS: The majority of EFPPEC and PEAT reference objectives are fully or partially covered in our university's undergraduate medical curriculum. Our approach could serve as a guide for others who endeavour to review their universities' specialty-specific medical education against reference objectives. Future curriculum development should target the elimination of identified gaps and evaluate the attainment of palliative care competencies by medical learners.

Palliative End-of-Life Medication Prescribing Rates in Long-Term Care: A Retrospective Cohort Study.

BACKGROUND: Medications are often needed to manage distressing end-of-life symptoms (eg, pain, agitation). OBJECTIVES: In this study, we describe the variation in prescribing rates of symptom relief medications at the end of life among long-term care (LTC) decedents. We evaluate the extent these medications are prescribed in LTC homes and whether prescribing rates of end-of-life symptom management can be used as an indicator of quality end-of-life care. DESIGN: Retrospective cohort study using administrative health data. SETTING AND PARTICIPANTS: LTC decedents in all 626 publicly funded LTC homes in Ontario, Canada, between January 1, 2017, and March 17, 2020. METHODS: For each LTC home, we measured the percent of decedents who received 1+ prescription(s) for a subcutaneous end-of-life symptom management medication ("end-of-life medication") in their last 14 days of life. We then ranked LTC homes into quintiles based on prescribing rates. RESULTS: We identified 55,916 LTC residents who died in LTC. On average, two-thirds of decedents (64.7%) in LTC homes were prescribed at least 1 subcutaneous end-of-life medication in the last 2 weeks of life. Opioids were the most common prescribed medication (overall average prescribing rate of 62.7%). LTC homes in the lowest prescribing quintile had a mean of 37.3% of decedents prescribed an end-of-life medication, and the highest quintile mean was 82.5%. In addition, across these quintiles, the lowest prescribing quintile had a high average (30.3%) of LTC residents transferred out of LTC in the 14 days compared with the highest prescribing quintile (12.7%). CONCLUSIONS AND IMPLICATIONS: Across Ontario's LTC homes, there are large differences in prescribing rates for subcutaneous end-of-life symptom relief medications. Although future work may elucidate why the variability exists, this study provides evidence that administrative data can provide valuable insight into the systemic delivery of end-of-life care.

Long-term bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study.

BACKGROUND: Severe grief is highly distressing and prevalent up to 1 year post-death among people bereaved during the first wave of COVID-19, but no study has assessed changes in grief severity beyond this timeframe. AIM: Understand the trajectory of grief during the pandemic by reassessing grief symptoms in our original cohort 12-18 months post-death. DESIGN: Prospective matched cohort study. SETTINGS/PARTICIPANTS: Family members of decedents who died in an acute care hospital between November 1, 2019 and August 31, 2020 in Ottawa, Canada. Family members of patients who died of COVID (COVID +ve) were matched 2:1 with those who died of non-COVID illness (COVID -ve) during pandemic wave 1 or immediately prior to its onset (pre-COVID). Grief was assessed using the Inventory of Complicated Grief (ICG). RESULTS: Follow-up assessment was completed by 92% (111/121) of family members in the initial cohort. Mean ICG score on the 12-18-month assessment was 19.9 (SD = 11.8), and severe grief (ICG > 25) was present in 28.8% of participants. One-third (33.3%) had either a persistently high (>25) or worsening ICG score (⩾4-point increase between assessments). Using a modified Poisson regression analysis, persistently high or worsening ICG scores were associated with endotracheal intubation in the deceased, but not cause of death (COVID +ve, COVID -ve, pre-COVID) or physical presence of the family member in the final 48 h of life. CONCLUSIONS: Severe grief is a substantial source of psychological morbidity in the wake of the COVID-19 pandemic, persisting more than a year post-death. Our findings highlight an acute need for effective and scalable means of addressing severe grief.

Potentially Inappropriate Prescribing in Long-Term Care and its Relationship With Probable Delirium.

OBJECTIVES: This study examined potentially inappropriate prescribing (PIP) of medication and its association with probable delirium among long-term care (LTC) residents in Ontario, Canada. DESIGN: Population-based cross-sectional study using provincial health administrative data, including LTC assessment data via the Resident Assessment Instrument-Minimum Dataset version 2.0 (RAI-MDS 2.0). SETTING AND PARTICIPANTS: LTC residents in Ontario between January 1, 2016, and December 31, 2019. METHODS: We used residents' first RAI-MDS 2.0 assessment in the study period as the index assessment. Probable delirium was identified via the delirium Clinical Assessment Protocol. Medication use in the 2 weeks preceding assessment was captured using medication claims data. PIP was measured using the STOPP/START criteria and 2015 Beers criteria, with residents classified as having 0, 1, 2, or 3+ instances of PIP. Relationships between PIP and probable delirium was assessed via bivariate and multivariable logistic regression models. RESULTS: The study population included 171,190 LTC residents (mean age 84.5 years, 66.8% female, 62.9% with dementia). More than half (51.8%) of residents had 1+ instances of PIP and 21% had 3+ instances of PIP according to the STOPP/START criteria; PIP prevalence was slightly lower when assessed using Beers criteria (36.5% with 1+, 11.1% with 3+). Overall, 3.7% of residents had probable delirium. The prevalence of probable delirium increased as the number of instances of PIP increased, with residents with 3+ instances of STOPP/START PIP being 1.66 times more likely (95% CI 1.56-1.77) to have probable delirium compared to those with no instances of PIP. Similar findings were observed when PIP was measured using the Beers criteria. Central nervous system (CNS)-related PIP criteria showed a stronger association with probable delirium than non-CNS-related PIP criteria. CONCLUSIONS AND IMPLICATIONS: This population-based study highlighted that PIP was highly prevalent in long-term care residents and was associated with an increased prevalence of probable delirium.

Long-term cognitive impairment after probable delirium in long-term care residents: A population-based retrospective cohort study.

BACKGROUND: The impact of delirium on cognition has not been well-studied in long-term care (LTC) residents. This study examined changes in cognition 1 year after a probable delirium episode among LTC residents, compared to LTC residents without probable delirium. We also evaluated whether the relationship between probable delirium and cognitive change differed according to a diagnosis of dementia. METHODS: We conducted a population-based retrospective cohort study using linked health administrative data. The study population included adults aged 65+ residing in LTC in Ontario, Canada and assessed via the Resident Assessment Instrument-Minimum Dataset between January 1, 2016 and December 31, 2018. Probable delirium was ascertained via the delirium Clinical Assessment Protocol on the index assessment. Cognition was measured quarterly using the Cognitive Performance Scale (range 0-6, higher values indicate greater impairment). Cognitive decline up to 1 year after index was evaluated using multivariable proportional odds regression models. RESULTS: Of 92,005 LTC residents, 2816 (3.1%) had probable delirium at index. Residents with probable delirium had an increased odds of cognitive decline compared to those without probable delirium, with adjusted odds ratios of 1.64 (95% confidence interval [CI] 1.35-1.99), 1.56 (95% CI 1.34-1.85), 1.57 (95% CI 1.32-1.86) and 1.50 (95% CI 1.25-1.80) after 1-3, 4-6, 7-9, and 10-12 months of follow-up. Residents with probable delirium and a comorbid dementia diagnosis had the highest adjusted odds of cognitive decline (adjusted odds ratio 5.57, 95% CI 4.79-6.48) compared to those without probable delirium or dementia. Residents with probable delirium were also more likely to die within 1 year than those without probable delirium (52.5% vs. 23.4%). CONCLUSIONS: Probable delirium is associated with increased mortality and worsened cognition in LTC residents that is sustained months after the probable delirium episode. Efforts to prevent delirium in this population may help limit these adverse effects.

Implementation of the Richmond Agitation-Sedation Scale (palliative version) on an inpatient palliative care unit.

BACKGROUND: The Richmond Agitation-Sedation Scale - Palliative version (RASS-PAL) tool is a brief observational tool to quantify a patient's level of agitation or sedation. The objective of this study was to implement the RASS-PAL tool on an inpatient palliative care unit and evaluate the implementation process. METHODS: Quality improvement implementation project using a short online RASS-PAL self-learning module and point-of-care tool. Participants were staff working on a 31-bed inpatient palliative care unit who completed the RASS-PAL self-learning module and online evaluation survey. RESULTS: The self-learning module was completed by 49/50 (98%) of regular palliative care unit staff (nurses, physicians, allied health, and other palliative care unit staff). The completion rate of the self-learning module by both regular and casual palliative care unit staff was 63/77 (82%). The follow-up online evaluation survey was completed by 23/50 (46%) of respondents who regularly worked on the palliative care unit. Respondents agreed (14/26; 54%) or strongly agreed (10/26; 38%) that the self-learning module was implemented successfully, with 100% agreement that it was effective for their educational needs. CONCLUSION: Using an online self-learning module is an effective method to engage and educate interprofessional staff on the RASS-PAL tool as part of an implementation strategy.

Comorbidities, symptoms and end-of-life medication use in hospitalised decedents before and during the COVID-19 pandemic: a retrospective regional cohort study in Ottawa, Canada.

OBJECTIVE: To compare comorbidities, symptoms and end-of-life (EoL) palliative medication (antisecretories, opioids, antipsychotics and sedatives) use among decedents before and during the COVID-19 pandemic. DESIGN: In a retrospective cohort study, decedent records in three acute care hospitals were abstracted, generating a prepandemic (November 2019-February 2020) group (pre-COVID) and two intrapandemic (March-August 2020, wave 1) groups, one without (COVID-ve) and one with COVID-19 infection (COVID+ve). Control group decedents were matched 2:1 on age, sex and care service (medicine/intensive care unit (ICU)) with COVID+ve decedents. SETTING: Three regional acute care teaching hospitals in Ottawa, Canada PARTICIPANTS: Decedents (N=425): COVID+ve (n=85), COVID-ve (n=170) and pre-COVID (n=170). MAIN OUTCOME MEASURES: Data were abstracted regarding demographics, admission comorbidities and symptoms, and EoL medication use; opioid doses were standardised to parenteral morphine equivalent daily dose (MEDD), and the predictors of upper quartile MEDD in the last 24 hours of life were examined in multivariable logistic regression with adjusted ORs (aORs) and 95% CIs. RESULTS: The prevalence of dementia (41% vs 28% and 26%, p=0.03), breathlessness (63.5% vs 42% and 47%, p<0.01), cough (40% vs 27% and 19%, p<0.01) and fever (54% vs 9% and 13.5%) was higher in COVID+ve versus pre-COVID and COVID-ve groups, respectively. The median (IQR) of MEDD over the last 72 hours of life was 16.7 (9-36.5) vs 13.5 (5.7-21.8) and 10.5 (5.3-23.8) for COVID+ve versus pre-COVID and COVID-ve groups, respectively, (p=0.007). Male sex, COVID+ve grouping, ICU death and high-flow nasal cannula use predicted upper quartile MEDD dose, aORs (95% CIs): 1.84 (1.05 to 3.22), 2.62 (1.29 to 5.3), 5.14 (2.47 to 10.7) and 1.93 (1.05 to 3.52), respectively. COVID+ve group decedents used highest lorazepam and propofol doses. CONCLUSIONS: COVID-19 decedents, particularly those in ICU, required higher EoL opioid and sedating medication doses than matched prepandemic or intrapandemic controls. These findings should inform and guide clinical practice.

'It's tough. It is hard': A qualitative interview study of staff and volunteers caring for hospice in-patients with delirium.

BACKGROUND: Delirium is a distressing condition often experienced by hospice in-patients. Increased understanding of current multidisciplinary care of delirium is needed to develop interventions in this setting. AIM(S): To explore hospice staff and volunteers' practice, its influences and what may need to change to improve hospice delirium care. DESIGN: Qualitative interview study using behaviour change theory from a critical realist stance. SETTING/PARTICIPANTS: Thirty-seven staff, including different professional groups and roles, and volunteers were purposively sampled from two in-patient hospices. RESULTS: We found that participants' practice focus was on managing hyperactive symptoms of delirium, through medication use and non-pharmacological strategies. Delirium prevention, early recognition and hypoactive delirium received less attention. Our theoretically-informed analysis identified this focus was influenced by staff and volunteers' emotional responses to the distress associated with hyperactive symptoms of delirium as well as understanding of delirium prevention, recognition and care, which varied between staff groups. Non-pharmacological delirium management was supported by adequate staffing levels, supportive team working and a culture of person-centred and family-centred care, although behaviours that disrupted the calm hospice environment challenged this. CONCLUSIONS: Our findings can inform hospice-tailored behaviour change interventions that develop a shared team understanding and engage staff's emotional responses to improve delirium care. Reflective learning opportunities are needed that increase understanding of the potential to reduce patient distress through prevention and early recognition of delirium, as well as person-centred management. Organisational support for adequate, flexible staffing levels and supportive team working is required to support person-centred delirium care.

Comparing Adherence with Best Practices in End-of-Life Care After Implementing the End-of-Life Order Set: A Quality Improvement Project in an Ottawa Academic Hospital.

Background: Physicians in acute care require tools to assist them in transitioning patients from a "life prolonging" approach to "end-of-life care," and standardized order sets can be a useful strategy. The end-of-life order set (EOLOS) was developed and implemented in the medical wards of a community academic hospital. Objective: To compare adherence with best practices in end-of-life care after implementing the EOLOS. Methods: We conducted a retrospective chart review of admitted patients with expected deaths in the year preceding EOLOS implementation ("before EOLOS" group), and in the 12 to 24 months following EOLOS implementation ("after EOLOS" group). Results: A total of 295 charts were included: 139 (47%) in the "before EOLOS" group and 156 (53%) in the "after EOLOS" group, of which 117/156 charts (75%) had a completed EOLOS. The "after EOLOS" group demonstrated more "do not resuscitate" orders and more written communication to team members about comfort goals of care. There was a decrease in nonbeneficial interventions in the last 24 hours of life in the "after EOLOS" group: high-flow oxygen, intravenous antibiotics, and deep vein thrombosis/venous thromboembolism prophylaxis. The "after EOLOS" group demonstrated increased prescription of all common end-of-life medications, except for opioids, which had a high preexisting rate of prescription. Patients in the "after EOLOS" group showed a higher rate of spiritual care and palliative care consult team consultation. Conclusion: Findings support standardized order sets as a good framework allowing generalist hospital staff to improve adherence to established palliative care principles and improve end-of-life care of hospital inpatients.

Over a third of palliative medicine physicians meet burnout criteria: Results from a survey study during the COVID-19 pandemic.

BACKGROUND: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine physicians is unknown. AIM: To determine the prevalence of burnout and the degree of resilience among UK and Irish palliative medicine physicians during the COVID-19 pandemic, and associated factors. DESIGN: Online survey using validated assessment scales assessed burnout and resilience: The Maslach Burnout Inventory Human Services Survey for Medical Personnel [MBI-HSS (MP)] and the Connor-Davidson Resilience Scale (CD-RISC). Additional tools assessed depressive symptoms, alcohol use, and quality of life. SETTING/PARTICIPANTS: Association of Palliative Medicine of UK and Ireland members actively practising in hospital, hospice or community settings. RESULTS: There were 544 respondents from the 815 eligible participants (66.8%), 462 provided complete MBI-HSS (MP) data and were analysed. Of those 181/462 (39.2%) met burnout criteria, based on high emotional exhaustion or depersonalisation subscales of the MBI-HSS (MP). A reduced odds of burnout was observed among physicians who worked ⩽20 h/week (vs 31-40 h/week, adjusted odds ratio (aOR) 0.03, 95% confidence interval (CI) 0.002-0.56) and who had a greater perceived level of clinical support (aOR 0.70, 95% CI 0.62-0.80). Physicians with higher levels of depressive symptoms had higher odds of burnout (aOR 18.32, 95% CI 6.75-49.73). Resilience, mean (SD) CD-RISC score, was lower in physicians who met burnout criteria compared to those who did not (62.6 (11.1) vs 70.0 (11.3); p < 0.001). CONCLUSIONS: Over one-third of palliative medicine physicians meet burnout criteria. The provision of enhanced organisational and colleague support is paramount in both the current and future pandemics.

Supporting the Heterogeneous and Evolving Treatment Preferences of Patients With Heart Failure Through Collaborative Home-Based Palliative Care.

Background We characterized the treatment preferences, care setting, and end-of-life outcomes among patients with advanced heart failure supported by a collaborative home-based model of palliative care. Methods and results This decedent cohort study included 250 patients with advanced heart failure who received collaborative home-based palliative care for a median duration of 1.9 months of follow-up in Ontario, Canada, from April 2013 to July 2019. Patients were categorized into 1 of 4 groups according to their initial treatment preferences. Outcomes included location of death (out of hospital versus in hospital), changes in treatment preferences, and health service use. Among patients who initially prioritized quantity of life, 21 of 43 (48.8%) changed their treatment preferences during follow-up (mean 0.28 changes per month). The majority of these patients changed their preferences to avoid hospitalization and focus on comfort at home (19 of 24 changes, 79%). A total of 207 of 250 (82.8%) patients experienced an out-of-hospital death. Patients who initially prioritized quantity of life had decreased odds of out-of-hospital death (versus in-hospital death; adjusted odds ratio, 0.259 [95% CI, 0.097-0.693]) and more frequent hospitalizations (mean 0.45 hospitalizations per person-month) compared with patients who initially prioritized quality of life at home. Conclusions Our results yield a more detailed understanding of the interaction of advanced care planning and patient preferences. Shared decision making for personalized treatment is dynamic and can be enacted earlier than at the very end of life.

Stakeholder perspectives of a pilot multicomponent delirium prevention intervention for adult patients with advanced cancer in palliative care units: A behaviour change theory-based qualitative study.

BACKGROUND: Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials. AIM: To explore patient, family, clinician and volunteer ('stakeholder') perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the 'PRESERVE pilot study'. DESIGN: A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie's Behaviour Change Wheel and the Theoretical Domains Framework. SETTING/PARTICIPANTS: Thirty-nine people involved in the trial: nurses (n = 17), physicians (n = 6), patients (n = 6), family caregivers (n = 4), physiotherapists (n = 3), a social worker, a pastoral care worker and a volunteer. RESULTS: Participants' perspectives aligned with the 'capability', 'opportunity' and 'motivation' domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care; intervention aligned with the compassionate and collaborative culture of palliative care; and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention; impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies; clinical roles and responsibilities; and addressing environmental barriers to delirium prevention). CONCLUSION: This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care.Australian New Zealand Clinical Trials Registry, ACTRN12617001070325; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373168.

Adaptation, implementation, and mixed methods evaluation of an interprofessional modular clinical practice guideline for delirium management on an inpatient palliative care unit.

BACKGROUND: Using delirium clinical guidelines may align interprofessional clinical practice and improve the care of delirious patients and their families. The aim of this project was to adapt, implement and evaluate an interprofessional modular delirium clinical practice guideline for an inpatient palliative care unit. METHODS: The setting was a 31-bed adult inpatient palliative care unit within a university-affiliated teaching hospital. Participants for the evaluation were interprofessional team members. Using integration of guideline adaptation and an education initiative, an interprofessional guideline adaptation group developed a face-to-face 'starter kit' module and four online self-learning modules. The mixed methods evaluation comprised pre-and post-implementation review of electronic patient records, an online survey, and analysis of focus groups/ interviews using an iterative, inductive thematic analysis approach. RESULTS: Guideline implementation took 12 months. All palliative care unit staff attended a 'starter kit' session. Overall completion rate of the four e-Learning modules was 80.4%. After guideline implementation, nursing documentation of non-pharmacological interventions occurring before medication administration was observed. There was 60% less scheduled antipsychotic use and an increase in 'as needed' midazolam use. The online survey response rate was 32% (25/77). Most participants viewed the guideline's implementation favourably. Six key themes emerged from the qualitative analysis of interviews and focus groups with ten participants: prior delirium knowledge or experiences, challenges of facilitating change, impacts on practice, collaborative effort of change, importance of standardized guidelines, and utility of guideline elements. CONCLUSIONS: Guideline implementation warrants concerted effort, time, and management support. Interprofessional team support facilitates the modular approach of guideline adaptation and implementation, leading to a change in clinical practice.

Bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study.

BACKGROUND: The COVID-19 pandemic has caused millions of deaths worldwide, leading to symptoms of grief among the bereaved. Neither the burden of severe grief nor its predictors are fully known within the context of the pandemic. AIM: To determine the prevalence and predictors of severe grief in family members who were bereaved early in the COVID-19 pandemic. DESIGN: Prospective, matched cohort study. SETTING/PARTICIPANTS: Family members of people who died in an acute hospital in Ottawa, Canada between November 1, 2019 and August 31, 2020. We matched relatives of patients who died of COVID (COVID +ve) with those who died of non-COVID illness either during wave 1 of the pandemic (COVID -ve) or immediately prior to its onset (pre-COVID). We abstracted decedents' medical records, contacted family members >6 months post loss, and assessed grief symptoms using the Inventory of Complicated Grief-revised. RESULTS: We abstracted data for 425 decedents (85 COVID +ve, 170 COVID -ve, and 170 pre-COVID), and 110 of 165 contacted family members (67%) consented to participate. Pre-COVID family members were physically present more in the last 48 h of life; the COVID +ve cohort were more present virtually. Overall, 35 family members (28.9%) had severe grief symptoms, and the prevalence was similar among the cohorts (p = 0.91). Grief severity was not correlated with demographic factors, physical presence in the final 48 h of life, intubation, or relationship with the deceased. CONCLUSION: Severe grief is common among family members bereaved during the COVID-19 pandemic, regardless of the cause or circumstances of death, and even if their loss took place before the onset of the pandemic. This suggests that aspects of the pandemic itself contribute to severe grief, and factors that normally mitigate grief may not be as effective.

Comparative end-of-life communication and support in hospitalised decedents before and during the COVID-19 pandemic: a retrospective regional cohort study in Ottawa, Canada.

OBJECTIVE: To compare end-of-life in-person family presence, patient-family communication and healthcare team-family communication encounters in hospitalised decedents before and during the COVID-19 pandemic. DESIGN: In a regional multicentre retrospective cohort study, electronic health record data were abstracted for a prepandemic group (pre-COVID) and two intrapandemic (March-August 2020, wave 1) groups, one COVID-19 free (COVID-ve) and one with COVID-19 infection (COVID+ve). Pre-COVID and COVID-ve groups were matched 2:1 (age, sex and care service) with the COVID+ve group. SETTING: One quaternary and two tertiary adult, acute care hospitals in Ottawa, Canada. PARTICIPANTS: Decedents (n=425): COVID+ve (n=85), COVID-ve (n=170) and pre-COVID (n=170). MAIN OUTCOME MEASURES: End-of-life (last 48 hours) in-person family presence and virtual (video) patient-family communication, and end-of-life (last 5 days) virtual team-family communication encounter occurrences were examined using logistic regression with ORs and 95% CIs. End-of-life (last 5 days) rates of in-person and telephone team-family communication encounters were examined using mixed-effects negative binomial models with incidence rate ratios (IRRs) and 95% CIs. RESULTS: End-of-life in-person family presence decreased progressively across pre-COVID (90.6%), COVID-ve (79.4%) and COVID+ve (47.1%) groups: adjusted ORs=0.38 (0.2-0.73) and 0.09 (0.04-0.17) for COVID-ve and COVID+ve groups, respectively. COVID-ve and COVID+ve groups had reduced in-person but increased telephone team-family communication encounters: IRRs=0.76 (0.64-0.9) and 0.61 (0.47-0.79) for in-person, and IRRs=2.6 (2.1-3.3) and 4.8 (3.7-6.1) for telephone communications, respectively. Virtual team-family communication encounters occurred in 17/85 (20%) and 10/170 (5.9%) of the COVID+ve and COVID-ve groups, respectively: adjusted OR=3.68 (1.51-8.95). CONCLUSIONS: In hospitalised COVID-19 pandemic wave 1 decedents, in-person family presence and in-person team-family communication encounters decreased at end of life, particularly in the COVID+ve group; virtual modalities were adopted for communication, and telephone use increased in team-family communication encounters. The implications of these communication changes for the patient, family and healthcare team warrant further study.