Emmanuelle Bélanger

Background: The goal of palliative care (PC) is to reduce suffering and improve quality of life for patients with life-limiting illnesses and their families. Prior studies consistently demonstrate high symptom burden among PC patients; however, most evidence comes from cancer populations outside the US, leaving a gap in large-scale US data across disease groups. Methods: We conducted a retrospective cohort study using quality metrics from a large, nonprofit hospice agency in the US Northeast. The study included 5871 patients who received palliative care services and had at least one Edmonton Symptom Assessment Scale (ESAS) assessment between July 2022 and December 2023. Five symptoms are described by severity on a 0-10 scale in a sample with malignant and non-malignant diagnoses. Results: We observed high prevalence of pain (34.3%), anxiety (32.3%), and dyspnea (28.0%) at first consultation. Many patients also reported moderate (4-6) or severe (7-10) intensity for pain (17.6% and 16.7%, respectively). Symptom burden also varied across disease groups: patients with solid tumors (63.3%) and liver disease (57.5%) exhibited particularly high rates of pain, while heart (46.9%) and lung disease (66.8%) exhibited high dyspnea. Among the 2852 patients with repeated consultations, there was substantial symptom improvement for pain (33.1% of patients), anxiety (22.1%), and dyspnea (19.3%). Conclusion: Palliative care patients experience high symptom burden, varying by diagnosis. Planning access to tailored PC services to meet varying physical and emotional needs at a population level remains critical.

Using a national survey of assisted living administrators ( n = 2,084) and interviews with residents’ bereaved next of kin ( n = 30), we describe policies administrators reported complying with at the worst of the COVID-19 pandemic and explore relationships between COVID-19-related policies and bereaved next-of-kin’s perceptions of end-of-life care quality, integrating findings to develop a comprehensive examination of end-of-life care in assisted living. During the pandemic, most administrators reported allowing compassionate care visits and hospice services. Next of kin described limited visitation and external care services and declines in residents’ physical, mental, and social well-being, emphasizing the difficulty of missing precious time together. This study examines next-of-kin experiences of residents who died during the COVID-19 pandemic, providing evidence to inform future infection control policies.

Purpose The aim of this study was to evaluate the impact of an intervention—comprising a context-adapted decision aid (DA) and online shared decision-making (SDM) training for intensivists—on the quality of goals-of-care discussions (GCDs) and the level of involvement of elderly patients in those discussions within an intensive care unit (ICU). Methods This was a three-phase before–after mixed-methods implementation study conducted in an ICU in Lévis, Québec, Canada. We followed the StaRI and COREQ reporting guidelines. We recruited patients aged ≥ 65 years and their attending intensivists. We video-recorded GCDs in three phases: Phase I: GCDs without a DA; Phase II: GCDs with a DA about goals of care but no online training; and Phase III: GCDs with both a DA about goals of care and online training about SDM. All GCDs recordings were transcribed verbatim. We measured the level of patient engagement by intensivists in SDM about goals of care through the OPTION scale and evaluated GCDs quality using the Audit of Communication, Care Planning, and Documentation (ACCEPT) indicators. A qualitative thematic analysis of transcriptions of the encounters was also performed. Results Out of 359 eligible patients, the study included 21 patients (71% men; median age, 77 years; 57% without high school diploma) and five intensivists (80% men; median age, 35 years). Despite completing online training, the DA was never used in recorded encounters. We did not perform any tests of statistical significance to compare results in each study phase because of small sample sizes over each phase. OPTION and ACCEPT scores were low in each phase, but physicians did engage in GCDs. We found that 76% of documented goals of care for life-sustaining therapy were consistent with patient preferences expressed during recorded GCD, a determination made by two independent observers. Several patients expressed confusion about GCDs. Regarding the use of a DA to support SDM in GCDs, intensivists identified several barriers and facilitators. Barriers included physician attitudes, lack of training, and systemic pressures, while a patient-centered approach and positive patient attitudes were seen as key facilitators. Conclusion Despite implementing a context-adapted DA and online SDM training, this study found no significant improvement in the quality of GCDs or patient engagement, notably as the DA was not utilized. Communication barriers and patient confusion about goals of care highlight the persistent challenges in achieving true SDM in the ICU. Future strategies should focus on overcoming identified barriers for successful integration of such interventions. Trial Registration Number NCT04034979

High-intensity end-of-life (EoL) care for patients with cancer often includes multiple transitions to the hospital and intensive care unit (ICU) and is associated with adverse outcomes, such as declines in patient functional abilities

Purpose: Medicare patients who die from cancer are responsible for about 30% of annual Medicare spending, most of which occurs during the last 30 days of life. Yet, there are significant and persisting knowledge gaps regarding which factors contribute to this high-intensity EoL spending. To that end, we conducted a retrospective analysis of SEER-Medicare data to identify risk factors associated with high-intensity EoL spending among older adults who died of breast, prostate, lung, or colorectal cancer. Methods: We used multivariable linear regression to identify clinical, demographic, socioeconomic, and geographic characteristics associated with total inflation-adjusted Medicare spending in the last 30 days of life, including reimbursements for services provided in the inpatient and outpatient settings. Study subjects included U.S. Medicare beneficiaries aged 65 and older who died of breast, prostate, lung, or colorectal cancer between 2011 and 2015. Results: Among 59,355 decedents (49.2% female; 21.2% of non-White race/ethnicity), factors associated with greater EoL spending were increased comorbidity burden, female sex, Black race, other race/ethnicity, stage III and IV disease, living in a more populated county, and state subsidization of patient Medicare premiums. EoL spending was lower among older patients, patients living in the Midwest, South, and West, patients living in more rural areas, and patients with poor performance status. Results were largely consistent across cancer types. Conclusion: Our findings can inform targeted intervention development for patients with cancer who are at higher risk of high-intensity EoL spending, such as decision-support tools that facilitate referrals to palliative care for high-risk patients.

Purpose: To explore the impact of a context-adapted decision aid and an online training about shared decision-making (SDM) about goals of care on the level of involvement of elderly patients by intensivists in SDM about goals of care and quality of goals of care discussions (GCD) in an intensive care unit. Methods: This was a three-phase before-after mixed-methods implementation study conducted in an ICU in Lévis, Quebec, Canada. We followed the StaRI and COREQ reporting guidelines. We recruited patients aged ≥ 65 and their attending intensivists. We video-recorded GCD in three phases: Phase I: GCD without a decision aid; Phase II: GCD with a decision aid about goals of care but no online training; and Phase III: GCD with both a decision aid about goals of care following online training about SDM. All GCD recordings were transcribed verbatim. We measured the level of patient engagement by intensivists in SDM about goals of care through the OPTION scale and evaluated GCD quality using the Audit of Communication, Care Planning, and Documentation (ACCEPT) indicators. A qualitative thematic analysis of the encounters transcriptions was also performed. Results: Out of 359 eligible patients, the study included 21 patients (71% males; median age, 77 years; 57% without high school diploma) and 5 intensivists (80% male; median age, 35). Despite completing online training, the decision aid was never used in recorded encounters. We did not perform any tests of statistical significance to compare results in each study phase because of small sample sizes over each phase. OPTION and ACCEPT scores were low in each phase, but physicians did engage in GCD. We found that 76% of the goals of care recorded in medical records after the discussion were consistent with preferences expressed by patients during recorded observations. Several patients expressed confusion about GCD. Barriers identified by intensivists leading GCD include physician attitudes, challenges to performing GCD along with the demands of the intensive care unit, misunderstandings, and lack of training. Facilitators include a patient-centered approach, a clear decision aid, and positive patient attitudes. In future work, an environment that supports physicians in performing GCD, promotes earlier and higher quality patient GCD before admission to the intensive care unit, and encourages meaningful SDM in critical care must be assessed as pathways to successful intensive care unit GCD. Conclusion: A context-adapted decision aid about goals of care was created in addition to a complementary online training module. The online training was completed by all participating physicians but no increased involvement of patients in SDM during intensive care unit GCD was observed, and use of the decision aid was also not observed. We found several communication barriers that will need to be explored to improve intensive care unit GCD. Trial registration number: NCT04034979 Key points: Misunderstandings and concerns among older adult patients about goals of care and invasive interventions in the ICU contribute to delayed decision-making. An online training regarding shared decision making with a corresponding decision aid for discussing goals of care was completed by all participating intensivists, but no increased involvement of patients nor use of the decision aid was observed in the ICU. Facilitators to the uptake of shared decision making may include the involvement of non-intensivist health professionals, mandating documentation discussions and their results in patient files, and challenging a long-held reluctance to discuss death as an outcome.

Background: Hypertension awareness and control are understudied among older adults in middle-income countries, with limited work contextualizing awareness and control across layers of influence (individual to the community). Research on hypertension in Latin America is acknowledged as insufficient. Objectives: This study applies the socioecological model (SEM) to examine individual, interpersonal, institutional, and community factors related to hypertension awareness and control in older adults residing in Brazil and Colombia. It identifies groups of older adults more likely to be unaware of their condition and/or to have challenges achieving hypertension control. Methods: We analyzed International Mobility in Aging Study data of 803 community-dwelling adults 65–74 years from study sites in the two most populous countries in South America. The study framework was the socioecological model. Logistic regression models identified factors associated with hypertension awareness and control. Conclusions: Hypertension was prevalent in both samples (>70%), and awareness was high (>80%). Blood pressure control among diagnosed respondents was low: 30% in Brazil and 51% in Colombia. Factors across the socioecological model were associated with awareness and control, with notable differences across countries. Those with diabetes (OR 4.19, 95%CI 1.64–10.71) and insufficient incomes (OR: 1.85, 95%CI 1.03–3.31) were more likely to be aware of their hypertension. In Colombia, those reporting no community activity engagement were less likely to be aware compared to those reporting community activities. In Brazil, it was the opposite. Women (OR 1.66, 95%CI 1.12–2.46) and those reporting strolling shops and stores (OR 1.80, 95% CI 1.09–3.00) were significantly more likely to have their hypertension under control. In Brazil, those 70–75 were significantly less likely to have their hypertension under control compared to their younger counterparts. In Colombia, this was not observed. This paper highlights the importance of theory-based studies within unique Latin American contexts on hypertension and suggests novel opportunities for intervention.