Advance Care Planning Experiences Among Sexual and Gender Minority People.

Importance: Advance care planning (ACP) can promote patient-centered end-of-life (EOL) care and is intended to ensure that medical treatments are aligned with patient's values. Sexual and gender minority (SGM) people face greater discrimination in health care settings compared with heterosexual, cisgender people, but it is unknown whether such discrimination occurs in ACP and how it might affect the ACP experiences of SGM people. Objectives: To increase understanding of barriers and facilitators of ACP facing SGM individuals. Design, Setting, and Participants: This mixed-methods national study of ACP included a telephone survey of self-identified SGM and non-SGM participants in a nationally representative sample drawn from a larger omnibus national panel by SSRS. Qualitative interviews were conducted with a subset of survey participants who identified as SGM. Data were collected from October 2020 to March 2021. Exposures: Self-identified SGM. Main Outcomes and Measures: The survey included 4 items from the validated ACP Engagement Survey, adapted to capture experiences of discrimination. Interviews asked about participants' experiences with ACP, including the appointment of medical decision-makers, sharing preferences, and experiences within the health care system more broadly. Results: A total of 603 adults participated in the survey, with 201 SGM individuals (mean [SD] age, 45.7 [18.7] years; 101 [50.2%] female; 22 [10.9%] Black, 37 [18.4%] Hispanic, and 140 [69.7%] White individuals) and 402 non-SGM individuals (mean [SD] age, 53.7 [19.2] years; 199 [49.5%] female; 35 [8.7%] Black, 41 [10.2%] Hispanic, and 324 [80.6%] White individuals). Regarding reasons for not completing ACP, SGM respondents, compared with non-SGM respondents, were more likely to say "I don't see the need" (72 [73.5%] vs 131 [57.2%], P = .006) and "I feel discriminated against by others" (12 [12.2%] vs 6 [2.6%], P < .001). Of 25 completed interviews among SGM participants, 3 main themes were identified: how fear and experiences of discrimination affect selection of clinicians and whether to disclose SGM identity; concerns about whether EOL preferences and medical decision-makers would be supported; and a preference to discuss EOL decisions and values outside of clinical settings. Conclusions and Relevance: This study found that fear of disclosing sexual orientation or gender identity information and discrimination are important barriers to ACP for SGM in clinical settings, but discussions of preferences and values still occur between many SGM people and medical decision-makers. More SGM-specific patient-centered care might better support these discussions within the health care system. Furthermore, health systems can facilitate improved engagement by supporting clinician sensitivity training, including guidance on documentation and requirements.

Anti-tumor treatment and healthcare consumption near death in the era of novel treatment options for patients with melanoma brain metastases.

BACKGROUND: Effective systemic treatments have revolutionized the management of patients with metastatic melanoma, including those with brain metastases. The extent to which these treatments influence disease trajectories close to death is unknown. Therefore, this study aimed to gain insight into provided treatments and healthcare consumption during the last 3 months of life in patients with melanoma brain metastases. METHODS: Retrospective, single-center study, including consecutive patients with melanoma brain metastases diagnosed between June-2015 and June-2018, referred to the medical oncologist, and died before November-2019. Patient and tumor characteristics, anti-tumor treatments, healthcare consumption, presence of neurological symptoms, and do-not-resuscitate status were extracted from medical charts. RESULTS: 100 patients were included. A BRAF-mutation was present in 66 patients. Systemic anti-tumor therapy was given to 72% of patients during the last 3 months of life, 34% in the last month, and 6% in the last week. Patients with a BRAF-mutation more frequently received systemic treatment during the last 3 (85% vs. 47%) and last month (42% vs. 18%) of life than patients without a BRAF-mutation. Furthermore, patients receiving systemic treatment were more likely to visit the emergency room (ER, 75% vs. 36%) and be hospitalized (75% vs. 36%) than those who did not. CONCLUSION: The majority of patients with melanoma brain metastases received anti-tumor treatment during the last 3 months of life. ER visits and hospitalizations occurred more often in patients on anti-tumor treatment. Further research is warranted to examine the impact of anti-tumor treatments close to death on symptom burden and care satisfaction.

Percepção de cuidados desproporcionais entre médicos seniores, médicos residentes, enfermeiros e técnicos de enfermagem em um centro de terapia intensiva / Perception of disproportionate care among staff physicians, training physicians, nurses, and practical nurses in an intensive care unit

Introdução: O aumento progressivo de medidas avançadas para manutenção da vida em pacientes com pouca expectativa de sobrevida gera percepção de cuidado desproporcional. Objetivamos averiguar a prevalência de cuidado desproporcional em equipe médica e enfermagem que atuam na Unidade de Terapia Intensiva (UTI) em um hospital público do Brasil.Métodos: Estudo transversal envolvendo equipe médica e enfermagem em uma UTI multidisciplinar de 34 leitos de um hospital terciário no sul do Brasil de janeiro a julho de 2019. Ao total 151 profissionais responderam a um questionário eletrônico anônimo.Resultados: A taxa de resposta foi de 49,5%. Cento e dezoito (78,1%) profissionais identificaram cuidado desproporcional no ambiente de trabalho. Enfermeiros e técnicos de enfermagem receberam menos treinamento formal em comunicação de fim de vida do que médicos (10,6% versus 57,6%, p < 0,001). Vinte e nove (28,1%) enfermeiros e técnicos de enfermagem e 4 (0,08%) médicos responderam que não havia discussão sobre terminalidade na UTI (p = 0,006). Quarenta e três (89,5%) médicos afirmaram que havia colaboração entre equipe médica e equipe de enfermagem, ao passo que 58 (56,3%) enfermeiros e técnicos de enfermagem discordaram da assertiva (p < 0,001).Conclusão: Este é o primeiro estudo sobre percepção de cuidado desproporcional conduzido na América Latina, envolvendo residentes e técnicos de enfermagem e um centro de alta complexidade do sistema público de saúde. A vasta maioria dos profissionais percebe a existência de cuidado desproporcional em sua prática diária, independentemente da classe profissional.

Introduction: The increased use of life-sustaining measures in patients with poor long- and middle-term expected survival concerns health care providers regarding disproportionate care. The objective of this study was to report the prevalence of perceived inappropriate care among intensive care unit (ICU) staff physicians, training physicians, nurses, and practical nurses in a Brazilian public hospital.Methods: We conducted a cross-sectional study with the medical and nursing team of a 34-bed multidisciplinary ICU of a tertiary teaching hospital in Southern Brazil from January to July 2019. A total of 151 professionals completed an anonymous electronic survey. Results: The response rate was 49.5%. One hundred and eighteen (78.1%) respondents reported disproportionate care in the work environment. Nurses and practical nurses were less likely to receive formal training on end-of-life communication compared to physicians (10.6% vs. 57.6%, p < 0.001). Twenty-nine (28.1%) nurses and practical nurses vs. 4 (0.08%) physicians claimed that there were no palliative care deliberations in the ICU (p = 0.006). Of 48 senior and junior physicians, 43 (89.5%) believed that collaboration between physicians and nurses was good, whereas 58 out of 103 (56.3%) nurses and practical nurses disagreed (p < 0.001).Conclusion: This is the first survey on the perception of inappropriate care conducted in Latin America. The study included junior physicians and practical nurses working in a high-complexity medical center associated with the Brazilian public health system. Most health care providers perceived disproportionate care in their daily practice, regardless of their professional class.

Comparison of End-of-Life Care Between Recent Immigrants and Long-standing Residents in Ontario, Canada.

Importance: Recent immigrants face unique cultural and logistical challenges that differ from those of long-standing residents, which may influence the type of care they receive at the end of life. Objective: To compare places of care among recent immigrants and long-standing residents in Canada in the last 90 days of life. Design, Setting, and Participants: This population-based retrospective cohort study used linked health administrative data on individuals from Ontario, Canada, who died between January 1, 2013, and December 31, 2016, extracted on February 26, 2020. Individuals were categorized by immigration status: recent immigrants (since 1985) and long-standing residents. Data were analyzed from December 27, 2019, to February 26, 2020. Exposures: All decedents who immigrated to Canada between 1985 and 2016 were classified as recent immigrants. Subgroup analyses assessed the association of region of origin. Main Outcomes and Measures: The main outcome was place of care, including institutional and noninstitutional settings, in the last 90 days of life. Descriptive statistics were used to compare characteristics and health service utilization among recent immigrants and long-standing residents. Negative binomial regression models estimated the rate ratios (RR) of using acute care and long-term care in the last 90 days of life. Results: A total of 376 617 deceased individuals (median [IQR] age, 80 [68-88] years; 187 439 [49.8%] women and 189 178 [50.2%] men) were identified, among whom 22 423 (6.0%) were recent immigrants; recent immigrants were younger than long-standing residents (median [IQR] age, 76 [60-85] years vs 81 [69-88] years; P < .001), more likely to be living in lower income neighborhoods (12 357 immigrants [55.1%] vs 166 017 long-standing residents [46.9%] in the lower 2 income quintiles; P < .001), and had a higher Charlson Index score (score ≥5, 6294 immigrants [28.1%] vs 74 809 long-standing residents [21.1%]; P < .001). In the last 90 days of life, recent immigrants spent more days in intensive care units than long-standing residents (mean [SD], 2.64 [8.73] days vs 1.47 [5.70] days; P < .001), while long-standing residents spent more days using long-term care than recent immigrants (mean [SD], 19.49 [35.81] days vs 10.45 [27.42] days; P < .001). Being a recent immigrant was associated with a greater likelihood of acute inpatient care use (RR, 1.21; 95% CI, 1.18-1.24) and lower likelihood of long-term care use (RR, 0.66; 95% CI, 0.63-0.70), after adjusting for covariates. Conclusions and Relevance: These findings suggest that at the end of life, recent immigrants were significantly more likely to receive inpatient and intensive care unit services and die in acute care settings compared with long-standing residents. Further research is needed to examine differences in care preference and disparities for immigrant groups of different origins.

Association of the Frequency of In-Home Care Services Utilization and the Probability of In-Home Death.

Importance: The provision of end-of-life care is an important policy issue associated with population aging around the world. Yet it is unclear whether the provision of in-home care services can allow patients the option of in-home death at end of life. Objective: To assess whether the frequent use of in-home care services can assist recipients to stay at home at the end of life. Design, Setting, and Participants: This cohort study of older adults in Japan's long-term care insurance system used national claims data. Participants were long-term care insurance beneficiaries aged 65 years or over who died in 2015, excluding those who died due to external causes such as accidents. Data analyses were conducted from October to December 2020. Exposures: Mean days of in-home care service used per week from the first day of the month before the month of death to the date of death. Main Outcomes and Measures: Primary outcome was whether the older person died at home (or not). To address lack of information on individual preference for place of death, we used an instrumental variable estimation with the full-time equivalent number of care workers providing in-home care services per older population at the municipality level in 2014. Results: Of the 572 059 decedents included in the study, 314 743 (55.0%) were women (median [IQR] age, 87 [81-91] years). The proportion of in-home deaths was 10.5% (60 175 decedents), and 81 675 decedents (14.3%) used in-home care services at least once prior to their death. Ordinary least squares and 2-stage least squares analyses both indicated that more frequent use of in-home care was associated with a higher probability of in-home deaths (ordinary least squares estimate, 5.0 percentage points; 95% CI, 4.9-5.1 points vs 2-stage least squares estimate, 3.6 percentage points; 95% CI, 2.3-4.9 points). Conclusions and Relevance: This retrospective cohort study using an instrumental variable approach demonstrated that more frequent use of in-home care services at the end of life was associated with a higher probability of in-home death. One policy implication of these results is that in order to meet the end-of-life preferences of patients, it is not only necessary to promote the provision of medical services at home but also to ensure an adequate supply of care workers.

The influence of POLST on treatment intensity at the end of life: A systematic review.

BACKGROUND: Despite its widespread implementation, it is unclear whether Physician Orders for Life-Sustaining Treatment (POLST) are safe and improve the delivery of care that patients desire. We sought to systematically review the influence of POLST on treatment intensity among patients with serious illness and/or frailty. METHODS: We performed a systematic review of POLST and similar programs using MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, Cochrane Database for Systematic Reviews, and PsycINFO, from inception through February 28, 2020. We included adults with serious illness and/or frailty with life expectancy <1 year. Primary outcomes included place of death and receipt of high-intensity treatment (i.e., hospitalization in the last 30- and 90-days of life, ICU admission in the last 30-days of life, and number of care setting transitions in last week of life). RESULTS: Among 104,554 patients across 20 observational studies, 27,090 had POLST. No randomized controlled trials were identified. The mean age of POLST users was 78.7 years, 55.3% were female, and 93.0% were white. The majority of POLST users (55.3%) had orders for comfort measures only. Most studies showed that, compared to full treatment orders on POLST, treatment limitations were associated with decreased in-hospital death and receipt of high-intensity treatment, particularly in pre-hospital settings. However, in the acute care setting, a sizable number of patients likely received POLST-discordant care. The overall strength of evidence was moderate based on eight retrospective cohort studies of good quality that showed a consistent, similar direction of outcomes with moderate-to-large effect sizes. CONCLUSION: We found moderate strength of evidence that treatment limitations on POLST may reduce treatment intensity among patients with serious illness. However, the evidence base is limited and demonstrates potential unintended consequences of POLST. We identify several important knowledge gaps that should be addressed to help maximize benefits and minimize risks of POLST.

The survival time of end-of-life home care patients in Fukui prefecture, Japan: A retrospective observational study.

ABSTRACT: End-of-life advance care planning (ACP) has become increasingly important in home care setting. In facilitating ACP discussion in home care setting, accurate understanding of patients' survival would be beneficial because it would facilitate healthcare professionals to individualize ACP discussion. However, little is known about survival outcome of home care patients. This study aimed to clarify the outcome of patients and identify factors to better predict the survival outcome of home care patients with the focus on patients' primary diseases.We conducted a retrospective analysis using data from 277 patients managed at a home care clinic in Japan and first treated in 2017 or 2018. Data regarding sociodemographic and clinical characteristics, and clinical outcome on December 31, 2019 were extracted. Using Kaplan-Meier product-limit method, we estimated the overall 30 days, 90 days, 1 year, and 3 year survival probabilities among the entire patients and their differences according to their primary disease. We also evaluated whether outcomes differed based on the primary disease or other factors using the hazard ratio and Cox proportional hazards regression.The overall survival probability was 82.5% at 30 days, 67.8% at 90 days, 52.7% at 1 year, and 39.1% at 3 years. The survival rates at 30 days, 90 days, 1 year, and 3 years were 64.6%, 33.4%, 9.5%, and 4.1% among cancer patients; 91.9%, 86.4%, 78.1%, and 47.0% among dementia patients; and 91.9%, 86.4%, 78.1%, and 47.0% among patients with other nervous and cerebrovascular diseases, respectively. Cox proportional hazard regression clarified that cancer patients (hazard ratio 6.53 [95% CI 4.16-10.28]) and older adults (hazard ratio 1.01 [95% CI 1.00-1.02]) were significantly more likely to die than dementia patients and young patients, respectively.Primary disease had a significant influence on the prediction of survival time and could be a useful indicator to individualize ACP in home care setting.

Patient-reported outcome changes at the end of life in recurrent platinum-resistant ovarian cancer: An NRG oncology/GOG study.

OBJECTIVES: In a prospective study of platinum-resistant ovarian cancer patients, we examined whether the Disease-related Symptoms-Physical (DRS--P) scale of the NCCN/FACT-Ovarian Cancer Symptom Index-18 (NFOSI-18) is responsive to clinical change in patients estimated by their provider to survive at least six months. METHODS: The NFOSI-18, and other FACT measures, was collected at study entry and 3 and 6 months post-enrollment. Measures were compared for those who died or dropped off study prior to 3 months or prior to 6 months (assumed as health deterioration over time), or those who stayed on study through 6 months (presumed as stable disease over time). Statistical analyses included a fitted linear mixed model for estimating the group differences over time, Cox regression to assess the probability of survival with patient-reported outcomes, and effect size. RESULTS: DRS-P scores of patients who completed only one assessment were significantly lower compared to patients who were able to complete two assessments [5.9 points lower (2.0-9.8); p < 0.01], or three assessments [8.1 points lower (4.8-11.5); p < 0.01]. Measures of abdominal discomfort, functional well-being, emotional well-being, and quality of life were also significant, but treatment side effects were not. Further, in every scale except for neurotoxicity, higher (better) baseline scores were associated with a decreased likelihood of death, after adjusting for age, performance and disease status. CONCLUSION: The NFOSI-18 DRS-P scale is responsive to clinical change. It has potential as an indicator of changing health status with ovarian cancer disease progression, distinct from treatment side effects.

Health expenditures after first hospital admission for heart failure in Nova Scotia, Canada: a retrospective cohort study.

BACKGROUND: Although the frequency of heart failure makes it among the costliest of illnesses, there are scant Canadian data on annual costs of treatment or the costs as the condition advances. Our objective was to estimate mean prevalence- and incidence-based direct medical costs among older adults discharged alive after a first hospital admission for heart failure. METHODS: We conducted a retrospective cohort study using population-based administrative health databases for Nova Scotia. The cohort comprised persons 50 years of age or older with an incident hospital admission for heart failure between 2009 and 2012. We considered the costs (expressed as 2020 Canadian dollars) of hospital admissions, physician visits and, for patients 65 years of age or older, outpatient cardiac medications. We estimated costs for calendar years, longitudinally and in the last 2 years of life. We analyzed costs from the perspective of a third-party public payer. RESULTS: The cohort consisted of 3327 patients (mean age 77.6 yr; 1605 [48.2%] women). Median survival was 2.5 and 2.2 years among men and women, respectively. Annual prevalence-based costs were about $7100. Mean incidence-based costs ranged between $65 000 and $164 000 in the year after diagnosis and decreased by 90% subsequently. Costs were 4 to 7 times higher in the year before death than in the period from 1 to 2 years before death. INTERPRETATION: The direct medical costs of treating patients with heart failure in Nova Scotia displayed a reverse J shape, with costs highest after diagnosis, declining subsequently and then increasing during the final year of life. Strategies designed to improve the quality of care immediately after diagnosis and during more advanced stages of disease might reduce these costs.

Association Between Self-reported Importance of Religious or Spiritual Beliefs and End-of-Life Care Preferences Among People Receiving Dialysis.

Importance: Although people receiving maintenance dialysis have limited life expectancy and a high burden of comorbidity, relatively few studies have examined spirituality and religious beliefs among members of this population. Objective: To examine whether there is an association between the importance of religious or spiritual beliefs and care preferences and palliative care needs in people who receive dialysis. Design, Setting, and Participants: A cross-sectional survey study was conducted among adults who were undergoing maintenance dialysis at 31 facilities in Seattle, Washington, and Nashville, Tennessee, between April 22, 2015, and October 2, 2018. The survey included a series of questions assessing patients' knowledge, preferences, values, and expectations related to end-of-life care. Data were analyzed from February 12, 2020, to April 21, 2021. Exposures: The importance of religious or spiritual beliefs was ascertained by asking participants to respond to this statement: "My religious or spiritual beliefs are what really lie behind my whole approach to life." Response options were definitely true, tends to be true, tends not to be true, or definitely not true. Main Outcomes and Measurements: Outcome measures were based on self-reported engagement in advance care planning, resuscitation preferences, values regarding life prolongation, preferred place of death, decision-making preference, thoughts or discussion about hospice or stopping dialysis, prognostic expectations, and palliative care needs. Results: A total of 937 participants were included in the cohort, of whom the mean (SD) age was 62.8 (13.8) years and 524 (55.9%) were men. Overall, 435 (46.4%) participants rated the statement about religious or spiritual beliefs as definitely true, 230 (24.6%) rated it as tends to be true, 137 (14.6%) rated it as tends not to be true, and 135 (14.4%) rated it as definitely not true. Participants for whom these beliefs were more important were more likely to prefer cardiopulmonary resuscitation (estimated probability for definitely true: 69.8% [95% CI, 66.5%-73.2%]; tends to be true: 60.8% [95% CI, 53.4%-68.3%]; tends not to be true: 61.6% [95% CI, 53.6%-69.6%]; and definitely not true: 60.6% [95% CI, 52.5%-68.6%]; P for trend = .003) and mechanical ventilation (estimated probability for definitely true: 42.6% [95% CI, 38.1%-47.0%]; tends to be true: 33.5% [95% CI, 25.9%-41.2%]; tends not to be true: 35.1% [95% CI, 27.2%-42.9%]; and definitely not true: 27.9% [95% CI, 19.6%-36.1%]; P for trend = .002) and to prefer a shared role in decision-making (estimated probability for definitely true: 41.6% [95% CI, 37.7%-45.5%]; tends to be true: 35.4% [95% CI, 29.0%-41.8%]; tends not to be true: 36.0% [95% CI, 26.7%-45.2%]; and definitely not true: 23.8% [95% CI, 17.3%-30.3%]; P for trend = .001) and were less likely to have thought or spoken about stopping dialysis. These participants were no less likely to have engaged in advance care planning, to value relief of pain and discomfort, to prefer to die at home, to have ever thought or spoken about hospice, and to have unmet palliative care needs and had similar prognostic expectations. Conclusions and Relevance: The finding that religious or spiritual beliefs were important to most study participants suggests the value of an integrative approach that addresses these beliefs in caring for people who receive dialysis.

Latent Class Analysis of Symptom Burden Among Seriously Ill Adults at the End of Life.

BACKGROUND: Serious illness is characterized by high symptom burden that negatively affects quality of life (QOL). Although palliative care research has highlighted symptom burden in seriously ill adults with cancer, symptom burden among those with noncancer serious illness and multiple chronic conditions has been understudied. Latent class analysis is a statistical method that can be used to better understand the relationship between severity of symptom burden and covariates, such as the presence of multiple chronic conditions. Although latent class analysis has been used to highlight subgroups of seriously ill adults with cancer based on symptom clusters, none have incorporated multiple chronic conditions. OBJECTIVES: The objectives of this study were to (a) describe the demographic and baseline characteristics of seriously ill adults at the end of life in a palliative care cohort, (b) identify latent subgroups of seriously ill individuals based on severity of symptom burden, and (c) examine variables associated with latent subgroup membership, such as QOL, functional status, and the presence of multiple chronic conditions. METHODS: A secondary data analysis of a palliative care clinical trial was conducted. The latent class analysis was based on the Edmonton Symptom Assessment System, which measures nine symptoms on a scale of 0-10 (e.g., pain, fatigue, nausea, depression, anxiousness, drowsiness, appetite, well-being, and shortness of breath). Clinically significant cut-points for symptom severity were used to categorize each symptom item in addition to a categorized total score. RESULTS: Three latent subgroups were identified (e.g., low, moderate, and high symptom burden). Lower overall QOL was associated with membership in the moderate and high symptom burden subgroups. Multiple chronic conditions were associated with statistically significant membership in the high symptom burden latent subgroup. Older adults between 65 and 74 years had a lower likelihood of moderate or high symptom burden subgroup membership compared to the low symptom burden class. DISCUSSION: Lower QOL was associated with high symptom burden. Multiple chronic conditions were associated with high symptom burden, which underlines the clinical complexity of serious illness. Palliative care at the end of life for seriously ill adults with high symptom burden must account for the presence of multiple chronic conditions.

Determinants of the number of days people in the general population spent at home during end-of-life: Results from a population-based cohort analysis.

BACKGROUND: The number of days spent at home in the last six months of life has been proposed as a comprehensive indicator of high-value patient-centered care; however, information regarding the determinants of this outcome is scarce, particularly among the general population. We investigated the determinants of spending time at home within the six months preceding death. METHODS: Population-based, retrospective analysis of administrative databases of the Catalan government. The analysis included adult (≥18 years) individuals who died in Catalonia (North-east Spain) in 2017 and met the McNamara criteria for palliative care. The primary outcome was the number of days spent at home within the last 180 days of life. Other variables included the cause of death, demographic characteristics, and socioeconomic status, stratified as very low, low, mid, and high level. RESULTS: The analysis included 40,137 individuals (19,510 women; 20,627 men), who spent a median of 140 days (IQR 16-171) at home within the six months preceding death (women 140 [16-171]; men 150 [100-171]). Female gender was an independent factor of staying fewer days at home (OR 0.80 [95% CI 0.77-0.82]; p<0.001). Higher socioeconomic levels were significantly associated with an increasing number of days at home in both genders: among women, ORs of the low, middle, and high levels were 1.09 (0.97-1.22), 1.54 (1.36-1.75), and 2.52 (1.69-3.75) (p<0.001), respectively; the corresponding ORs among men were 1.27 (1.12-1.43), 1.56 (1.38-1.77), 2.82 (2.04-3.88) (p<0.001). The presence of dementia was a strong predictor of spending less time at home in women (0.41 (0.38-0.43); p<0.001) and men (0.45 (0.41-0.48); p<0.001). CONCLUSIONS: Our results suggest that end-of-life care is associated with gender and socioeconomic inequalities; women and individuals with lower socioeconomic status spend less time at home within the last 180 days of life.

Variability in end-of-life healthcare use in patients with osteoarthritis: a population-based matched cohort study.

PURPOSE: To investigate the patterns of healthcare use (HCU) at the last year of life in persons with osteoarthritis (OA). METHODS: Using linked registers, we identified persons aged≥ 65 years who died during 2003-2014 and were resided in the Skåne region during 5-year prior to death. Among these, we randomly matched decedents with a principal OA diagnosis prior to the last year of life (OA cohort, n = 17,993) with up to 4 comparators without OA by sex, age at death, and year of death (n = 59,945). We measured monthly HCU for each decedent during last year of life and applied two-part regression models to estimate HCU attributable to OA. Group-based trajectory modelling (GBTM) was used to detect distinct trajectories of HCU within the OA cohort. RESULTS: During last 12-month of life, each person with OA had, on average, 2.5 (95% CI 2.2, 2.7) excess healthcare consultations and 1.8 (95% CI 1.3, 2.2) more inpatient days than those without OA. While both cohorts observed increasing trends in HCU towards death, excess healthcare consultations attributable to OA declined and inpatient days increased as death approached. For both healthcare consultations and inpatient days, GBTM identified four distinct trajectory classes. While underlying cause of death and age were the most important predictors of class membership, the overall predictive accuracy was poor. CONCLUSION: OA was associated with excess HCU especially hospital-based care during the last year of life. However, there seem to be distinct trajectory classes within the OA patient population.

Polypharmacy among pediatric cancer patients dying in the hospital.

BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life (EOL). OBJECTIVES: To characterize medication burden during the last hospitalization in children dying from cancer. METHODS: We performed a retrospective cohort study based on medical records of 90 children who died from cancer in hospital between 01 January 2010 and 30 December 2018. Demographic and clinical information were collected for the last hospitalization. We compared medication burden (number of medication orders) at hospitalization and at time of death and examined whether changes in medication burden were associated with clinical and demographic parameters. RESULTS: Median medication burden was higher in leukemia/lymphoma patients (6 orders) compared to solid (4 orders) or CNS tumor patients (4 orders, P = 0.006). Overall, the median number of prescriptions per patient did not change until death (P = 0.42), while there was a significant reduction for some medication subgroups (chemotherapy [P = 0.035], steroids [P = 0.010]).Patients dying in the ICU (n=15) had a higher medication burden at death (6 orders) than patients dying on wards (3 orders, P = 0.001). There was a trend for a reduction in medication burden in patients with "Do not resuscitate" (DNR) orders (P = 0.055). CONCLUSIONS: Polypharmacy is ubiquitous among pediatric oncology patients at EOL. Disease type and DNR status may affect medication burden and deprescribing during the last hospitalization.

Experiences, challenges and perspectives for ensuring end-of-life patient care: A national online survey with general practitioners in Germany.

BACKGROUND: The SARS-CoV-2 (COVID-19) pandemic is posing major challenges for health care systems. In Germany, one such challenge has been that adequate palliative care for the severely ill and dying (with and without COVID-19), as well as their loved ones, has not been available at all times and in all settings., the pandemic has underlined the significance of the contribution of general practitioners (GPs) to the care of severely ill and dying patients. OBJECTIVES: To describe GPs' experiences, challenges and perspectives with respect to end-of-life care during the first peak of the pandemic (spring 2020) in Germany. MATERIALS AND METHODS: In November and December 2020, a link to an Unipark online survey was sent to GPs registered on nationwide distribution lists. RESULTS: In total, 410 GPs responded; 61.5% indicated that the quality of their patients' end-of-life care was maintained throughout the pandemic, 36.8% reported a decrease in quality compared to pre-pandemic times. Of the GPs who made home visits to severely ill and dying patients, 61.4% reported a stable number of visits, 28.5% reported fewer visits. 62.7% of the GPs reported increased telephone contact and reduced personal contact with patients; 36.1% offered video consultations in lieu of face-to-face contact. The GPs reported that relatives were restricted (48.5%) or prohibited from visiting (33.4%) patients in nursing homes. They observed a fear of loneliness among patients in nursing homes (91.9%), private homes (87.3%) and hospitals (86.1%). CONCLUSIONS: The present work provides insights into the pandemic management of GPs and supports the development of a national strategy for palliative care during a pandemic. To effectively address end-of-life care, GPs and palliative care specialists should be involved in COVID-19 task forces on micro, meso and macro levels of health care.

Intensity of outpatient physician care in the last year of life: a population-based retrospective descriptive study.

BACKGROUND: For many patients, health care needs increase toward the end of life, but little is known about the extent of outpatient physician care during that time. The objective of this study was to describe the volume and mix of outpatient physician care over the last 12 months of life among patients dying with different end-of-life trajectories. METHODS: We conducted a retrospective descriptive study involving adults (aged ≥ 18 yr) who died in Ontario between 2013 and 2017, using linked provincial health administrative databases. Decedents were grouped into 5 mutually exclusive end-of-life trajectories (terminal illness, organ failure, frailty, sudden death and other). Over the last 12 months and 3 months of life, we examined the number of physician encounters, the number of unique physician specialties involved per patient and specialty of physician, the number of unique physicians involved per patient, the 5 most frequent types of specialties involved and the number of encounters that took place in the home; these patterns were examined by trajectory. RESULTS: Decedents (n = 359 559) had a median age of 78 (interquartile range 66-86) years. The mean number of outpatient physician encounters over the last year of life was 16.8 (standard deviation [SD] 13.7), of which 9.0 (SD 9.2) encounters were with family physicians. The mean number of encounters ranged from 11.6 (SD 10.4) in the frailty trajectory to 24.2 (SD 15.0) in the terminal illness trajectory across 3.1 (SD 2.0) to 4.9 (SD 2.1) unique specialties, respectively. In the last 3 months of life, the mean number of physician encounters was 6.8 (SD 6.4); a mean of 4.1 (SD 5.4) of these were with family physicians. INTERPRETATION: Multiple physicians are involved in outpatient care in the last 12 months of life for all end-of-life trajectories, with family physicians as the predominant specialty. Those who plan health care models of the end of life should consider support for family physicians as coordinators of patient care.

Symptom trajectories of non-cancer patients in the last six months of life: Identifying needs in a population-based home care cohort.

INTRODUCTION: The end-of-life symptom prevalence of non-cancer patients have been described mostly in hospital and institutional settings. This study aims to describe the average symptom trajectories among non-cancer patients who are community-dwelling and used home care services at the end of life. MATERIALS AND METHODS: This is a retrospective, population-based cohort study of non-cancer patients who used home care services in the last 6 months of life in Ontario, Canada, between 2007 and 2014. We linked the Resident Assessment Instrument for Home Care (RAI-HC) (standardized home care assessment tool) and the Discharge Abstract Databases (for hospital deaths). Patients were grouped into four non-cancer disease groups: cardiovascular, neurological, respiratory, and renal (not mutually exclusive). Our outcomes were the average prevalence of these outcomes, each week, across the last 6 months of life: uncontrolled moderate-severe pain as per the Pain Scale, presence of shortness of breath, mild-severe cognitive impairment as per the Cognitive Performance Scale, and presence of caregiver distress. We conducted a multivariate logistic regression to identify factors associated with having each outcome respectively, in the last 6 months. RESULTS: A total of 20,773 non-cancer patient were included in our study, which were analyzed by disease groups: cardiovascular (n = 12,923); neurological (n = 6,935); respiratory (n = 6,357); and renal (n = 3,062). Roughly 80% of patients were > 75 years and half were female. In the last 6 months of life, moderate to severe pain was frequent in the cardiovascular (57.2%), neurological (42.7%), renal (61.0%) and respiratory (58.3%) patients. Patients with renal disease had significantly higher odds for reporting uncontrolled moderate to severe pain (odds ratio [OR] = 1.21; 95% CI: 1.08 to 1.34) than those who did not. Patients with respiratory disease reported significantly higher odds for shortness of breath (5.37; 95% CI, 5.00 to 5.80) versus those who did not. Patients with neurological disease compared to those without were 9.65 times more likely to experience impaired cognitive performance and had 56% higher odds of caregiver distress (OR = 1.56; 95% CI: 1.43 to 1.71). DISCUSSION: In our cohort of non-cancer patients dying in the community, pain, shortness of breath, impaired cognitive function and caregiver distress are important symptoms to manage near the end of life even in non-institutional settings.

Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study.

PURPOSE: Evidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AYAs with cancer in Ontario, Canada. A secondary aim was to evaluate the impact of PC physicians on the intensity of EOL care in AYAs. METHODS: A retrospective decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada, was assembled using a provincial registry and linked to population-based health care data. On the basis of previous studies, the primary composite measure HI-EOL care included any of the following: intravenous chemotherapy < 14 days from death, more than one emergency department visit, and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death) and PC physician involvement. We determined predictors of outcomes using appropriate regression models. RESULTS: Of 7,122 AYAs, 43.8% experienced HI-EOL care. PC physician involvement (odds ratio [OR], 0.57; 95% CI, 0.51 to 0.63) and older age at death (OR, 0.60; 95% CI, 0.48 to 0.74) were associated with a lower risk of HI-EOL care. AYAs with hematologic malignancies were at highest risk for HI and MI-EOL care. PC physician involvement substantially reduced the odds of mechanical ventilation at EOL (OR, 0.36; 95% CI, 0.30 to 0.43). CONCLUSION: A large proportion of AYAs with cancer experience HI-EOL care. Our study provides strong evidence that PC physician involvement can help mitigate the risk of HI and MI-EOL care in AYAs with cancer.

Actual and Missed Opportunities for End-of-Life Care Discussions With Oncology Patients: A Qualitative Study.

Importance: Early discussion of end-of-life (EOL) care preferences improves clinical outcomes and goal-concordant care. However, most EOL discussions occur approximately 1 month before death, despite most patients desiring information earlier. Objective: To describe successful navigation and missed opportunities for EOL discussions (eg, advance care planning, palliative care, discontinuation of disease-directed treatment, hospice care, and after-death wishes) between oncologists and outpatients with advanced cancer. Design, Setting, and Participants: This study is a secondary qualitative analysis of outpatient visits audio-recorded between November 2010 and September 2014 for the Studying Communication in Oncologist-Patient Encounters randomized clinical trial. The study was conducted at 2 US academic medical centers. Participants included medical, gynecological, and radiation oncologists and patients with stage IV malignant neoplasm, whom oncologists characterized as being ones whom they "…would not be surprised if they were admitted to an intensive care unit or died within one year." Data were analyzed between January 2018 and August 2020. Exposures: The parent study randomized participants to oncologist- and patient-directed interventions to facilitate discussion of emotions. Encounters were sampled across preintervention and postintervention periods and all 4 treatment conditions. Main Outcomes and Measures: Secondary qualitative analysis was done of patient-oncologist dyads with 3 consecutive visits for EOL discussions, and a random sample of 7 to 8 dyads from 4 trial groups was analyzed for missed opportunities. Results: The full sample included 141 patients (54 women [38.3%]) and 39 oncologists (8 women [19.5%]) (mean [SD] age for both patients and oncologists, 56.3 [10.0] years). Of 423 encounters, only 21 (5%) included EOL discussions. Oncologists reevaluated treatment options in response to patients' concerns, honored patients as experts on their goals, or used anticipatory guidance to frame treatment reevaluation. In the random sample of 31 dyads and 93 encounters, 35 (38%) included at least 1 missed opportunity. Oncologists responded inadequately to patient concerns over disease progression or dying, used optimistic future talk to address patient concerns, or expressed concern over treatment discontinuation. Only 4 of 23 oncologists (17.4%) had both an EOL discussion and a missed opportunity. Conclusions and Relevance: Opportunities for EOL discussions were rarely realized, whereas missed opportunities were more common, a trend that mirrored oncologists' treatment style. There remains a need to address oncologists' sensitivity to EOL discussions, to avoid unnecessary EOL treatment.