Study protocol for the development and validation of a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia.

BACKGROUND: Patients with dementia and their caregivers could benefit from advance care planning though may not be having these discussions in a timely manner or at all. A prognostic tool could serve as a prompt to healthcare providers to initiate advance care planning among patients and their caregivers, which could increase the receipt of care that is concordant with their goals. Existing prognostic tools have limitations. We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. METHODS: The derivation cohort will include approximately 235,000 patients with dementia, who were admitted to hospital in Ontario from April 1st, 2009, to December 31st, 2017. Predictor variables will be fully prespecified based on a literature review of etiological studies and existing prognostic tools, and on subject-matter expertise; they will be categorized as follows: sociodemographic factors, comorbidities, previous interventions, functional status, nutritional status, admission information, previous health care utilization. Data-driven selection of predictors will be avoided. Continuous predictors will be modelled as restricted cubic splines. The outcome variable will be mortality within 1 year of admission, which will be modelled as a binary variable, such that a logistic regression model will be estimated. Predictor and outcome variables will be derived from linked population-level healthcare administrative databases. The validation cohort will comprise about 63,000 dementia patients, who were admitted to hospital in Ontario from January 1st, 2018, to March 31st, 2019. Model performance, measured by predictive accuracy, discrimination, and calibration, will be assessed using internal (temporal) validation. Calibration will be evaluated in the total validation cohort and in subgroups of importance to clinicians and policymakers. The final model will be based on the full cohort. DISCUSSION: We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. The model would be integrated into the electronic medical records of hospitals to automatically output 1-year mortality risk upon hospitalization. The tool could serve as a trigger for advance care planning and inform access to specialist palliative care services with prognosis-based eligibility criteria. Before implementation, the tool will require external validation and study of its potential impact on clinical decision-making and patient outcomes. TRIAL REGISTRATION: NCT05371782.

An update of palliative care in lung transplantation with a focus on symptoms, quality of life and functional outcomes.

PURPOSE OF REVIEW: Palliative care (PC) in lung transplantation is increasingly acknowledged for its important role in addressing symptoms, enhancing functionality, and facilitating advance care planning for patients, families, and caregivers. The present review provides an update in PC management in lung transplantation. RECENT FINDINGS: Research confirms the effectiveness of PC for patients with advanced lung disease who are undergoing transplantation, showing improvements in symptoms and reduced healthcare utilization. Assessment tools and patient-reported outcome measures for PC are commonly used in lung transplant candidates, revealing discrepancies between symptom severity and objective measures such as exercise capacity. The use of opioids to manage dyspnea and cough in the pretransplant period is deemed safe and does not heighten risks posttransplantation. However, the integration of PC support in managing symptoms and chronic allograft dysfunction in the posttransplant period has not been as well described. SUMMARY: Palliative care support should be provided in the pretransplant and select peri-operative and posttransplant periods to help support patient quality of life, symptoms, communication and daily function.

A comprehensive evaluation of online inhaler use techniques for obstructive airway disease.

BACKGROUND: Pulmonary inhaler therapy is a core treatment modality for >600 million individuals affected by obstructive airways disease globally. Poor inhaler technique is associated with reduced disease control and increased health care utilization; however, many patients rely on the internet as a technical resource. This study assesses the content and quality of online resources describing inhaler techniques. METHODS: A Google search was conducted in April 2023 capturing the top 5 search results for 12 common inhaler devices. Websites were compared to product monographs for preparation/first use, inhalational technique, and post-usage/device care. They were also assessed using accepted quality metrics (GQS, DISCERN, JAMA Benchmark scores) and clinically relevant aspects based on the literature and consensus statements. RESULTS: Websites regularly excluded critical steps important for proper inhaler technique. They performed best on information related directly to inhalation technique (average median score 78%), whereas steps related to preparation/first use (58%) or post-usage/device care (50%) were less frequently addressed. Median GQS, DISCERN, and JAMA Benchmark scores were 3 [IQR 3-4], 3 [IQR 2-4], and 1 [IQR 1-3], respectively. Clinically relevant factors were only addressed in about one-fifth of websites with no websites addressing smoking cessation, environmental considerations, or risk factors for poor technique. CONCLUSIONS: This study highlights gaps in online resources describing inhaler technique, particularly related to preparation/first use and post-usage/device care steps. Clinically relevant factors were rarely addressed across websites. Improvements in these areas could lead to enhanced inhaler technique and clinical outcomes.

Self-reported MeasUrement of Physical and PsychosOcial Symptoms Response Tool (SUPPORT-dialysis): systematic symptom assessment and management in patients on in-centre haemodialysis - a parallel arm, non-randomised feasibility pilot study protocol.

INTRODUCTION: Patients with kidney failure experience symptoms that are often under-recognised and undermanaged. These symptoms negatively impact health-related quality of life and are associated with adverse clinical outcomes. Regular symptom assessment, using electronic patient reported outcomes measure (ePROMs) linked to systematic symptom management, could improve such outcomes. Clinical implementation of ePROMs have been successful in routine oncology care, but not used for patients on dialysis. In this study, we describe a pilot study of ePROM-based systematic symptom monitoring and management intervention in patients treated with in-centre haemodialysis. METHODS AND ANALYSIS: This is a parallel-arm, controlled pilot of adult patients receiving in-centre maintenance haemodialysis. Participants in the intervention arm will complete ePROMs once a month for 6 months. ePROMs will be scored real time and the results will be shared with participants and with the clinical team. Moderate-severe symptoms will be flagged using established cut-off scores. Referral options for those symptoms will be shared with the clinical team, and additional symptom management resources will also be provided for both participants and clinicians. Participants in the control arm will be recruited at a different dialysis unit, to prevent contamination. They will receive usual care, except that they will complete ePROMs without the presentation of results to participants of the clinical team. The primary objectives of the pilot are to assess (1) the feasibility of a larger, randomised clinical effectiveness trial and (2) the acceptability of the intervention. Interviews conducted with participants and staff will be assessed using a content analysis approach. ETHICS AND DISSEMINATION: Ethical approval for this study was obtained from the University Health Network (REB#21-5199) and the William Osler Health System (#23-0005). All study procedures will be conducted in accordance with the standards of University Health Network research ethics board and with the 1964 Helsinki declaration and its later amendments. Results of this study will be shared with participants, patients on dialysis and other stakeholders using lay language summaries, oral presentations to patients and nephrology professionals. We will also be publishing the results in a peer-reviewed journal and at scientific meetings. PROTOCOL VERSION: 4 (16 November 2022). TRIAL REGISTRATION NUMBER: NCT05515991.

Differences in Palliative Care Provision by Primary and Specialist Providers Supporting Patients With COVID-19: A Qualitative Study.

Objectives: To describe the delivery of palliative care by primary providers (PP) and specialist providers (SP) to hospitalized patients with COVID-19. Methods: PP and SP completed interviews about their experiences providing palliative care. Results were analyzed using thematic analysis. Results: Twenty-one physicians (11 SP, 10 PP) were interviewed. Six thematic categories emerged. Care provision: PP and SP described their support of care discussions, symptom management, managing end of life, and care withdrawal. Patients provided care: PP described patients at end of life, with comfort-focused goals; SP included patients seeking life-prolonging treatments. Approach to symptom management: SP described comfort, and PP discomfort in providing opioids with survival-focused goals. Goals of care: SP felt these conversations were code status-focused. Supporting family: both groups indicated difficulties engaging families due to visitor restrictions; SP also outlined challenges in managing family grief and need to advocate for family at the bedside. Care coordination: internist PP and SP described difficulties supporting those leaving the hospital. Conclusion: PP and SP may have a different approach to care, which may affect consistency and quality of care.

Symptoms and disease severity in lung transplant candidates co-managed with palliative care.

BACKGROUND: Lung transplant (LTx) candidates experience significant respiratory symptoms often necessitating palliative care (PC) support. We aimed to describe symptoms experienced by interstitial lung disease (ILD) and chronic obstructive pulmonary disease (COPD) LTx candidates referred for PC using the Edmonton Symptom Assessment System (ESAS) and to assess the change in ESAS in relation to pre-LTx exercise capacity, oxygen requirements, and respiratory exacerbations. Understanding symptom trajectory of these two patient groups will help inform PC management. METHODS: Single centre, retrospective cohort of 102 ILD and 24 COPD LTx candidates who were assessed in the Toronto Transplant PC Clinic (TPCC) from 2014-2017. Chi-square and t-tests were used to compare clinical characteristics, physiological parameters, and ESAS scores. RESULTS: The most common symptom in ILD and COPD patients was dyspnea (median score of 8, cough 7, fatigue 6). ILD patients reported higher cough scores (7 vs. 4, P<0.001). There was no association between the change in ESAS domains and six-minute walk distance (6MWD), oxygen requirements, or respiratory exacerbations, despite increased oxygen requirements and a greater decline in 6MWD in ILD compared to COPD pre-LTx (-47 vs. -8 meters, P=0.01). ILD candidates who were delisted/died compared to those transplanted, experienced worse depression (median ESAS; 4.5 vs. 1), anxiety (5.5 vs. 2) and dyspnea (9.5 vs. 8); P<0.05. CONCLUSIONS: ILD patients had similar symptoms as COPD patients, despite increased oxygen requirements and decreasing 6MWD pre-LTx. This study highlights the importance of symptom management of LTx candidates co-managed with PC, independent of traditional measures of disease severity.

Palliative Care Physicians' Perceptions of Conditions Required to Provide Early Palliative Care.

CONTEXT: Early palliative care (EPC) is widely recommended but its implementation may be challenging. OBJECTIVES: We conducted a qualitative analysis of Canadian palliative care physicians' opinions about conditions necessary to provide EPC. METHODS: A survey assessing attitudes and opinions regarding EPC was distributed to physicians providing primary or specialized palliative care, as identified by the Canadian Society of Palliative Care Physicians. The survey included an optional final section for respondents' general comments; we screened these for relevance to our study aims and conducted a thematic analysis of relevant comments. RESULTS: Of 531 completed surveys, 129 (24%) respondents provided written comments, of whom 104 mentioned conditions they felt to be necessary to provide EPC. Four key themes were identified: 1) Clear delineation of roles of primary and specialized palliative care physicians-all physicians should be empowered to provide primary palliative care, with specialists providing additional support; 2) Shared care with needs-dependent referral-primary and specialized palliative care physicians should work collaboratively, with referral to specialized palliative care based on need rather than on prognosis; 3) Adequate resources to support primary palliative care-education, financial incentives, and collaboration with interdisciplinary team members such as nurses and specialized providers were specifically mentioned; 4) Addressing the misconception that palliative care equals end-of-life care-there was particular emphasis on education of both healthcare providers and the public. CONCLUSION: Changes are necessary at the level of palliative care referral systems, providers, resources, and policy to enable implementation of EPC.

Physician perceptions of restrictive visitor policies during the COVID-19 pandemic: a qualitative study.

BACKGROUND: Little is understood of the consequences of restrictive visitor policies that were implemented in hospitals to minimize risk of infection during the COVID-19 pandemic. The objective of this study was to describe physician experiences with these policies and reflections of their effects. METHODS: We conducted semistructured phone interviews from September 2020 to March 2021 with physicians practising in Ontario hospitals, recruited via professional networks and snowball sampling. We audio-recorded, transcribed and analyzed interviews to describe and interpret overarching themes by thematic analysis. RESULTS: We interviewed 21 physicians (5 intensivists, 5 internists, 11 specialists in palliative care). Four main thematic categories emerged, including provider, system, patient and caregiver effects. Provider-related factors included increased time and effort on communication with a need to establish limits; increased effort to develop rapport with caregivers; lack of caregiver input on patient care; the need to act as a caregiver surrogate; and the emotional toll of being a gatekeeper or advocate for visitors, exacerbated by lack of evidence for restrictions and inconsistent enforcement. System effects included the avoidance of hospital admission and decreased length of stay, leading to readmissions, increased deaths at home and avoidance of transfer to other facilities with similar policies. Patient-related factors included isolation and dying alone; lack of caregiver advocacy; and prioritization of visitor presence that, at times, resulted in a delay or withdrawal of aspects of care. Caregiver-related factors included inability to personally assess patient health, leading to poor understanding of patient status and challenging decision-making; perceived inadequate communication; difficulty accessing caregiver supports; and increased risk of complicated grief. Participants highlighted a disproportionate effect on older adults and people who did not speak English. INTERPRETATION: Our study highlights substantial negative consequences of restrictive visitor policies, with heightened effects on older adults and people who did not speak English. Research is required to identify whether the benefits of visitor restrictions on infection control outweigh the numerous deleterious consequences to patients, families and care providers.

Pediatric and Adult Cardiologists' and Respirologists' Referral Practices to Palliative Care.

CONTEXT: Children and adults with advanced cardiac or respiratory disease may benefit from specialized palliative care (SPC), but there has been little SPC research in this area. OBJECTIVES: To explore pediatric cardiologists' and respirologists' (pediatric clinicians) beliefs about and referral practices to SPC and compare these results to adult cardiologists and respirologists (adult clinicians). METHODS: Pediatric and adult clinicians were sent a survey exploring SPC referral practices and beliefs. Responses were summarized with descriptive statistics. Pediatric and adult clinicians' responses were compared using Pearson's chi-square test. RESULTS: The response rate was 56% (989/1759); 9% (87/989) were pediatric clinicians. Pediatric clinicians were more likely than adult clinicians to be female, work in an academic center, and experience fewer patient deaths (P<0.001). Pediatric clinicians reported better access to SPC clinical nurse specialists, spiritual care specialists and bereavement counselors (P<0.001), while adult clinicians reported better access to palliative care units (P<0.001). Pediatric clinicians referred to SPC earlier, while adult clinicians tended to refer after disease directed therapies were stopped (P<0.001). More than half of all clinicians felt patients had negative perceptions of the phrase "palliative care". Although most clinicians were satisfied with SPC quality (73-82%), fewer adult clinicians were satisfied with SPC availability (74 vs. 47%; P<0.001). Fewer pediatric clinicians felt that SPC prioritized oncology patients (13 vs. 53%; P<0.001). CONCLUSION: There are important differences between pediatric and adult clinicians' beliefs about and referral practices to SPC. This may reflect unique features of pediatric diseases, provider characteristics, care philosophies, or service availability.

Identifying barriers and facilitators to palliative care integration in the management of hospitalized patients with COVID-19: A qualitative study.

BACKGROUND: Palliative care is well suited to support patients hospitalized with COVID-19, but integration into care has been variable and generally poor. AIM: To understand barriers and facilitators of palliative care integration for hospitalized patients with COVID-19. METHODS: Internists, Intensivists and palliative care physicians completed semi-structured interviews about their experiences providing care to patients with COVID-19. Results were analysed using thematic analysis. RESULTS: Twenty-three physicians (13 specialist palliative care, five intensivists, five general internists) were interviewed; mean ± SD age was 42 ± 11 years and 61% were female. Six thematic categories were described including: patient and family factors, palliative care knowledge, primary provider factors, COVID-19 specific factors, palliative care service factors, and leadership and culture factors. Patient and family factors included patient prognosis, characteristics that implied prognosis (i.e., age, etc.), and goals of care. Palliative care knowledge included confidence in primary palliative care skills, misperception that COVID-19 is not a 'palliative diagnosis', and the need to choose quantity or quality of life in COVID-19 management. Primary provider factors included available time, attitude, and reimbursement. COVID-19 specific factors were COVID-19 as an impetus to act, uncertain illness trajectory, treatments and outcomes, and infection control measures. Palliative care service factors were accessibility, adaptability, and previous successful relationships. Leadership and culture factors included government-mandated support, presence at COVID planning tables, and institutional and unit culture. CONCLUSION: The study findings highlight the need for leadership support for formal integrated models of palliative care for patients with COVID-19, a palliative care role in pandemic planning, and educational initiatives with primary palliative care providers.

Top Ten Tips Palliative Care Clinicians Should Know About Solid Organ Transplantation.

Solid organ transplantation (SOT) is a life-saving procedure for people with end-stage organ failure. However, patients experience significant symptom burden, complex decision making, morbidity, and mortality during both pre- and post-transplant periods. Palliative care (PC) is well suited and historically underdelivered for the transplant population. This article, written by a team of transplant specialists (surgeons, cardiologists, nephrologists, hepatologists, and pulmonologists), PC clinicians, and an ethics specialist, shares 10 high-yield tips for PC clinicians to consider when caring for SOT patients.

Pulmonary referrals to specialist palliative medicine: a survey.

OBJECTIVES: Patients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada. METHODS: Respirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses. RESULTS: The response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013). CONCLUSIONS: Possible barriers to respirologists' timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

Palliative medicine outpatient clinic 'no-shows': retrospective review.

OBJECTIVES: Patients who do not attend outpatient palliative care clinic appointments ('no-shows') may have unmet needs and can impact wait times. We aimed to describe the characteristics and outcomes associated with no-shows. METHODS: We retrospectively reviewed new no-show referrals to the Princess Margaret Cancer Centre Oncology Palliative Care Clinic (OPCC) in Toronto, Canada, between January 2017 and December 2018, compared with a random selection of patients who attended their first appointment, in a 1:2 ratio. We collected patient information, symptoms, performance status (Eastern Cooperative Oncology Group (ECOG) and outcomes. Univariable and multivariable logistic regression analyses were used to identify significant factors. RESULTS: Compared with those who attended (n=214), no-shows (n=103), on multivariable analysis, were at higher odds than those who attended of being younger (OR 0.98, 95% CI 0.96 to 1.00, p=0.019), living outside Toronto (OR 2.67, 95% CI 1.54 to 4.62, p<0.001) and having ECOG ≥2 (OR 2.98, 95% CI 1.41 to 6.29, p=0.004). No-shows had a shorter median survival compared with those who attended their first appointment (2.3 vs 8.7 months, p<0.001). CONCLUSION: Compared with patients who attended, no-shows lived further from the OPCC, were younger, and had a poorer ECOG. Strategies such as virtual visits should be explored to reduce no-shows and enable attendance at OPCCs.

Examining the course of transitions from hospital to home-based palliative care: A mixed methods study.

BACKGROUND: Hospital-to-home transitions in palliative care are fraught with challenges. To assess transitions researchers have used patient reported outcome measures and qualitative data to give unique insights into a phenomenon. Few measures examine care setting transitions in palliative care, yet domains identified in other populations are likely relevant for patients receiving palliative care. AIM: Gain insight into how patients experience three domains, discharge readiness, transition quality, and discharge-coping, during hospital-to-home transitions. DESIGN: Longitudinal, convergent parallel mixed methods study design with two data collection visits: in-hospital before and 3-4 weeks after discharge. Participants completed scales assessing discharge readiness, transition quality, and post discharge-coping. A qualitative interview was conducted at both visits. Data were analyzed separately and integrated using a merged transformative methodology, allowing us to compare and contrast the data. SETTING AND PARTICIPANTS: Study was set in two tertiary hospitals in Toronto, Canada. Adult inpatients (n = 25) and their caregivers (n = 14) were eligible if they received a palliative care consultation and transitioned to home-based palliative care. RESULTS: Results were organized aligning with the scales; finding low discharge readiness (5.8; IQR: 1.9), moderate transition quality (66.7; IQR: 33.33), and poor discharge-coping (5.0; IQR: 2.6), respectively. Positive transitions involved feeling well supported, managing medications, feeling well, and having healthcare needs met. Challenges in transitions were feeling unwell, confusion over medications, unclear healthcare responsibilities, and emotional distress. CONCLUSIONS: We identified aspects of these three domains that may be targeted to improve transitions through intervention development. Identified discrepancies between the data types should be considered for future research exploration.

Referral Practices of Cardiologists to Specialist Palliative Care in Canada.

BACKGROUND: Patients with heart failure have palliative care needs that can be effectively addressed by specialist palliative care (SPC). Despite this, SPC utilization by this patient population is low, suggesting barriers to SPC referral. We sought to determine the referral practices of cardiologists to SPC. METHODS: Cardiologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional, and attitudinal factors were analyzed using multiple and logistic regression. RESULTS: The response rate was 51% (551 of 1082). Between 35.1% and 64.2% of respondents were unaware of referral criteria to local SPC services. Of the respondents, 29% delayed SPC referral because of prognostic uncertainty, and 46.8% believed that SPC prioritizes patients with cancer. In actual practice, nearly three-fourths of cardiologists referred late. Referral frequency was associated with greater availability of SPC services for patients with nonmalignant diseases (P = 0.008), a higher number of palliative care settings accepting patients receiving continuous infusions or pursuing acute care management (P < 0.001), satisfaction with services (P < 0.001), and less equation of palliative care with end-of-life care (P < 0.001). Early timing of referral was associated with greater availability of SPC services for patients with nonmalignant diseases and less equation of palliative care with end-of-life care. CONCLUSIONS: The findings suggest that barriers to timely SPC referral include an insufficiency of services for patients with nonmalignant diseases especially in the outpatient setting, the perception that SPC services do not accept patients receiving cardiology-specific treatments, and a misperception about the identity of palliative care.

CONTEXTE: Les services de soins palliatifs spécialisés (SPS) peuvent répondre efficacement aux besoins des patients présentant une insuffisance cardiaque. Malgré tout, les patients de cette population n'ont pas beaucoup recours aux SPS, ce qui semble indiquer la présence d'obstacles à l'orientation vers les SPS. Nous avons entrepris de déterminer les pratiques des cardiologues en matière d'orientation des patients vers les SPS. MÉTHODOLOGIE: Les cardiologues de partout au Canada ont été invités à participer à un sondage sur leurs pratiques en matière d'orientation des patients vers les SPS. Les associations entre ces pratiques et certaines caractéristiques démographiques, professionnelles et comportementales ont été analysées au moyen d'une régression multiple et logistique. RÉSULTATS: Le taux de participation au sondage a été de 51 % (551 réponses sur 1 082 invitations). Entre 35,1 et 64,2 % des répondants ne connaissaient pas les critères pour l'orientation des patients vers les services locaux de SPS. Parmi les répondants, 29 % ont dit reporter l'orientation vers les SPS en raison du caractère incertain du pronostic, et 46,8 % croyaient que les SPS s'adressaient en priorité aux patients atteints d'un cancer. Dans la pratique, près des trois quarts des cardiologues ont orienté tardivement les patients. La fréquence des orientations a été associée à une disponibilité plus grande de services de SPS pour les patients atteints de maladies non cancéreuses (p = 0,008), à un nombre plus élevé de milieux de soins palliatifs admettant les patients nécessitant des perfusions continues ou prenant en charge les soins actifs (p < 0,001), à la satisfaction à l'égard des services (p < 0,001) et à une assimilation moins importante des soins palliatifs avec les soins de fin de vie (p < 0,001). L'orientation rapide des patients était associée à une disponibilité plus grande de services de SPS pour les patients atteints de maladies non cancéreuses et à une assimilation moins importante des soins palliatifs avec les soins de fin de vie. CONCLUSIONS: Nos observations semblent indiquer que l'insuffisance des services destinés aux patients atteints de maladies non cancéreuses (en particulier dans le contexte des soins ambulatoires), la perception que les services de SPS n'admettent pas les patients nécessitant des traitements en cardiologie et la perception erronée de la finalité des soins palliatifs constituent des obstacles à l'orientation des patients vers les SPS en temps opportun.

Disparities in access to palliative care facilities for patients with and without cancer: A retrospective review.

BACKGROUND: To date, little is known about the characteristics of patients who are admitted to a palliative care bed for end-of-life care. Previous data suggest that there are disparities in access to palliative care services based on age, sex, diagnosis, and socioeconomic status, but it is unclear whether these differences impact access to a palliative care bed. AIM: To better identify patient factors associated with the likelihood/rate of admission to a palliative care bed. DESIGN: A retrospective chart review of all initiated palliative care bed applications through an electronic referral program was conducted over a 24-month period. SETTING/PARTICIPANTS: Patients who apply and are admitted to a palliative care bed in a Canadian metropolitan city. RESULTS: A total of 2743 patients made a total of 5202 bed applications to 9 hospice/palliative care units in 2015-2016. Referred and admitted cancer patients were younger, male, and more functional than compared to non-cancer patients (all p < 0.001). Referred and admitted patients without cancer were more advanced in their illness trajectory, with an anticipated prognosis <1 month and Palliative Performance Status of 10%-20% (all p < 0.001). On multivariate analysis, a diagnosis of cancer and a prognosis of <3 months were associated with increased likelihood and/or rate of admission to a bed, whereas the presence of care needs, a longer prognosis and a PPS of 30%-40% were associated with decreased rates and/or likelihood of admission. CONCLUSION: Patients without cancer have reduced access to palliative care facilities at end-of-life compared to patients with cancer; at the time of their application and admission, they are "sicker" with very low performance status and poorer prognoses. Further studies investigating disease-specific clinical variables and support requirements may provide more insights into these observed disparities.

"Going Home [Is] Just a Feel-Good Idea With No Structure": A Qualitative Exploration of Patient and Family Caregiver Needs When Transitioning From Hospital to Home in Palliative Care.

CONTEXT: Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. OBJECTIVES: 1) Explore patients' and caregivers' expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. METHODS: Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. RESULTS: Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). CONCLUSION: Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition.

Palliative Care in Toronto During the COVID-19 Pandemic.

Coronavirus disease 2019 (COVID-19) first emerged in China in December 2019 and was declared a pandemic by the World Health Organization on March 11, 2020. Clinicians around the world looked to cities that first experienced major surges to inform their preparations to prevent and manage the impact the pandemic would bring to their patients and health care systems. Although this information provided insight into how COVID-19 could affect the Canadian palliative care system, it remained unclear what to expect. Toronto, the largest city in Canada, experienced its first known case of COVID-19 in January 2020, with the first peak in cases occurring in April and its second wave beginning this September. Despite warnings of increased clinical loads, as well as widespread shortages of staff, personal protection equipment, medications, and inpatient beds, the calls to action by international colleagues to support the palliative care needs of patients with COVID-19 were not realized in Toronto. This article explores the effects of the pandemic on Toronto's palliative care planning and reports of clinical load and capacity, beds, staffing and redeployment, and medication and PPE shortages. The Toronto palliative care experience illustrates the international need for strategies to ensure the integration of palliative care into COVID-19 management, and to optimize the use of palliative care systems during the pandemic.

Transitioning From Hospital to Palliative Care at Home: Patient and Caregiver Perceptions of Continuity of Care.

CONTEXT: Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life. OBJECTIVE: To explore patient and caregiver understanding and valuation of "continuity of care" while transitioning from an in-hospital to a home-based palliative care team. METHODS: Longitudinal qualitative design using semistructured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using thematic analysis within a postpositivist framework. Thirty-nine participants (18 patients, seven caregivers, and seven patient-caregiver dyads) were recruited from two acute care hospitals, wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care. RESULTS: Patients had a mean age of 68 years, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 years and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced, as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers. CONCLUSION: Patients' and their caregivers' valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.

Effectiveness of a Multiprofessional, Online and Simulation-Based Difficult Conversations Training Program on Self-Perceived Competence of Oncology Healthcare Provider Trainees.

Effective communication between healthcare providers (HCPs) and patients is important for HCP well-being, patient engagement, and health outcomes. Yet, HCPs do not receive adequate communication skills training and report feeling unprepared for difficult conversations. A needs assessment of 64 cancer HCP trainees in Toronto, Canada, found that a majority of trainees rated themselves with low competency in communication skills to support patients through difficult conversations, while nearly all rated these skills as important to their practice. A blended multiprofessional communications program was developed including online theoretical learning and reflective practice in addition to in-person simulation with standardised patient actors. Since communication skills mastery is highly unlikely to occur at the termination of a single training program, the goal of the program was to stimulate participants' motivational beliefs about difficult conversations communication skills in order to deepen their commitment to learning and mastery. The motivational beliefs assessed included self-efficacy (self-perceived competence), intent to use techniques learned, and confidence in task mastery. After completing the course, participants' self-perceived competence in dealing with difficult conversations significantly increased by an average of 25 points (p < 0.001) on a rating scale of 1-100 (n = 40). Participants' intent to use techniques did not change significantly and remained high with an overall average of 89 points. After the course, participants rated their confidence in mastering techniques learned at an average score of 71 points. Multiprofessional, simulation-based training is an effective way to improve HCP trainees' motivational beliefs around having difficult conversations.