De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
BACKGROUND: Cardiopulmonary resuscitation (CPR) is a medical emergency intervention aimed at ending a life-threatening cardiovascular arrest as quickly as possible. However, the medical ethics of starting CPR in patients who have incurable and terminal disease is a matter of controversy. This ethical dilemma affects cancer patients in particular, as they are often suffering from advanced disease in a palliative situation. Few data are as yet available concerning the prevalence of CPR in patients with terminal cancer.
METHODS: A population-based cross-sectional study was carried out on the basis of death certificates of two large cities in Germany evaluated for 2017. Medical data on resuscitation and cause of death were analyzed. Cancer patients with or without a palliative situation were identified, and the prevalence of resuscitation in these patients was determined. In addition, factors influencing resuscitation were calculated using binary multivariate regression.
RESULTS: A total of 8,496 persons died, 32.1% of whom [2,723] were cancer patients. A palliative situation was present in 80.9% of the cancer patients [2,202]. A total of 163 cancer patients and 1,006 individuals without cancer were resuscitated at the end of life, representing prevalences of 6.0% (95% CI, 5.1-6.9%) and 17.4% (95% CI, 16.4-18.4%), respectively. Cancer patients with a palliative disease status received CPR in 3.4% of cases (95% CI, 2.6-4.2%). More than half of the resuscitations were performed in hospital (57.7% of resuscitated persons and 68.7% of cancer patients). Sex, age, presence of a palliative situation, and care provided by a specialized outpatient palliative service were found to be independent influencing factors.
CONCLUSIONS: Six in 100 cancer patients, and slightly more than three in 100 cancer patients with a palliative disease status, undergo CPR at the end of their lives. Thus, the indication for resuscitation in advanced cancer patients is handled with care and responsibility in Germany.
Background: Withdrawal from renal replacement therapy is common in patients with end-stage kidney disease (ESKD), but end-of-life service planning is challenging without population-specific data. We aimed to describe mortality after treatment withdrawal in Australian and New Zealand ESKD patients and evaluate death-certified causes of death.
Methods: We performed a retrospective cohort study on incident patients with ESKD in Australia, 1980–2013, and New Zealand, 1988–2012, from the Australian and New Zealand Dialysis and Transplant registry. We estimated mortality rates (by age, sex, calendar year and country) and summarized withdrawal-related deaths within 12 months of treatment modality change. Certified causes of death were ascertained from data linkage with the Australian National Death Index and New Zealand Mortality Collection database.
Results: Of 60 823 patients with ESKD, there were 8111 treatment withdrawal deaths and 26 207 other deaths over 381 874 person-years. Withdrawal-related mortality rates were higher in females and older age groups. Rates increased between 1995 and 2013, from 1142 (95% confidence interval 1064–1226) to 2706/100 000 person-years (95% confidence interval 2498–2932), with the greatest increase in 1995–2006. A third of withdrawal deaths occurred within 12 months of treatment modality change. The national death registers reported kidney failure as the underlying cause of death in 20% of withdrawal cases, with other causes including diabetes (21%) and hypertensive disease (7%). Kidney disease was not mentioned for 18% of withdrawal patients.
Conclusions: Treatment withdrawal represents 24% of ESKD deaths and has more than doubled in rate since 1988. Population data may supplement, but not replace, clinical data for end-of-life kidney-related service planning.
The spread of pandemic COVID-19 has created unprecedented need for information. The pandemic is the cause of significant mortality and with this the need for rapidly disseminated information for palliative care professionals regarding the prevalence of symptoms, their intensity, their resistance or susceptibility to symptom control and the mode of death for patients.
Methods: we undertook a systematic review of published evidence for symptoms in patients with COVID-19 (with a specific emphasis on symptoms at end of life) and on modes of death. Inclusion: prospective or retrospective studies detailing symptom presence and/or cause or mode of death from COVID-19.
Results: 12 papers met the inclusion criteria and gave details of symptom burden: four of these specifically in the dying and two detailed the cause or mode of death. Cough, breathlessness, fatigue and myalgia are significant symptoms in people hospitalised with COVID-19. Dyspnoea is the most significant symptom in the dying. The mode of death was described in two papers and is predominantly through respiratory or heart failure.
Conclusions: There remains a dearth of information regarding symptom burden and mode of death to inform decisions regarding end-of-life care in patients dying with COVID-19. Rapid data gathering on the mode of death and the profile of symptoms in the dying and their prevalence and severity in areas where COVID-19 is prevalent will provide important intelligence for clinicians. This should be done urgently, within ethical norms and the practicalities of a public health, clinical and logistical emergency.
INTRODUCTION: Health care utilization of people with lung cancer (LC) the last year of life, their causes of death and place of death and the associated expenditure have been poorly described together. Then we conducted an observational study.
METHODS: People with LC covered by the French health Insurance general scheme (77% of the population) who died in 2015 were identified in the national health data system, together with their health care utilization and, in 95% of cases, their causes of death.
RESULTS: A total of 22,899 individuals were included (mean age: 68 years, SD±11.4), 72% of whom died in short-stay hospitals (SSH), 4% in hospital-at-home, 8% in Rehab hospital, 2% in skilled nursing homes and 14% at home. One-half of these people had also a chronic respiratory tract disease and 18% another cancer. Hospital palliative care (HPC) was identified for 65% of people, but for only 9% prior to their end-of-life stay. During the last month of life, 49% of people had two or more SSH stays, 15% were admitted to an intensive care unit, 23% received a chemotherapy session (13% during the last 14 days). The main cause of death was cancer for 92% of individuals (LC for 82%) The mean expenditure during the last year of life was €43,329 per individual.
DISCUSSION: This study indicates high rates of intensive care unit admissions and chemotherapy during the last month of life and a SSH hospital-centered management with intensive use of HPC mainly during the end-of-life stay.
The economics of death and dying highlighted that environmental factors negatively influence healthcare sustainability. Therefore, this study conducted a system-based literature review to identify the negative externality of environmental damages on global healthcare reforms. Based on 42 peer-reviewed papers in the field of healthcare reforms and 12 papers in the field of environmental hazards, we identified 25 factors associated with death and dying and 15 factors associated with health-related damages across the world respectively. We noted that environmental factors are largely responsible to affect healthcare sustainability reforms by associating with the number of healthcare diseases pertaining to air pollutants. The study suggests healthcare practitioners and environmentalists to devise long-term sustainable healthcare policies by limiting highly toxic air pollutants through technology-embodied green healthcare infrastructure to attained efficient global healthcare recovery.
Background: In spite of a rapidly ageing population, there is a lack of population-based data on mortality among nursing home residents in Southern Europe.
Aims: To assess mortality rates, their determinants, and causes of death in newly admitted nursing home residents in the Veneto region (northeastern Italy).
Methods: 19,392 subjects aged = 65 years admitted to regional nursing homes during 2015–2017 were recruited in a cohort mortality study based on linked health records. Risk factors for mortality were investigated by Cox regression. The distribution of causes of death was retrieved from death certificates.
Results: Mortality peaked in the first 4 months after admission; thereafter the monthly mortality rate fluctuated around 3% in males and 2% in females. Overall mortality was 23% at 6 months and 34% at 1 year. In addition to age, gender, and dependency, main risk factors for mortality were recent hospitalization (first 4 months after entry into the facility), and the burden of comorbidities (subsequent follow-up period). The most represented causes of mortality were similar in the first and in the subsequent period after admission: cardio-cerebrovascular diseases, neurodegenerative diseases, respiratory diseases, and infections.
Discussion: The first months after admission represent a period at high risk of mortality, especially for patients with a recent hospitalization. Causes reported in death certificates suggest mainly an acute deterioration of pre-existing chronic conditions.
Conclusion: Health care plans should be personalized for newly admitted vulnerable patients. Palliative care needs should be recognized and addressed for high-risk non-cancer patients.
PURPOSE: The management of cancer patients at the end of life in France and their causes of death are not well known.
METHODS: People managed for cancer in 2014-2015, who died in 2015 and who were covered by the national health insurance general scheme (77% of the French population) were selected from the national health data system in order to analyze the health care reimbursed during the year and the month before their death.
RESULTS: This study included 125,497 people (mean age 73 years, SD 12.5) managed for cancer: colorectal: 12%, lung: 18%, prostate: 9%, breast: 8% and other: 62%. Almost 67% of people died in short-stay hospitals (SSH), 8% died in rehabilitation units (Rehab), 4% died in hospital at home (HaH), 5% died in skilled nursing homes (SNH) and 15% died at home or another place. The mean annual duration of all types of hospitalization was 70 days (SD 66) and 59% of patients had received hospital palliative care (HPC). During the last month of life, 42% of people had attended an emergency department at least once and people who had received HPC were less often admitted to an intensive care unit (10% versus 23%, 15% overall). During the month before death, 17% of patients had received intravenous chemotherapy (lung 23%, breast 21%) and 9% had received a pharmacy reimbursement for another form of chemotherapy (prostate 24%, breast 19%). The main cause of death was a tumour for 81% of patients: after management of lung cancer in 91% of cases, breast cancer in 81% of cases, colorectal cancer in 76% of cases and prostate cancer in 63% of cases.
CONCLUSIONS: Cancer management and death mostly occurred in SSH in France. Cancer patients frequently attend the emergency department and frequently receive chemotherapy during the last month of life. These data continue to contrast with those observed in Scandinavian- and English-speaking countries, in which management of the end of life at home is preferred.
BACKGROUND: Little is known regarding healthcare for cancer patients treated mainly at home during the month before they die. The aim of this study was to provide information on how they were treated and what were their causes of death.
METHODS: This population-based observational study analysing information obtained from the French national healthcare data system (SNDS) included adult health insurance beneficiaries treated for cancer who died in 2015 after having spent at least 25 of their last 30 days at home.
RESULTS: Among the cancer patients who died in 2015, 25,463 (20%) were included [mean age (±SD) 74±13.2 years, men 62%]; 54% of them died at home. They were slightly older (75 vs. 73 years) than those who died in hospital, had less frequently received hospital palliative care during the year preceding their deaths (19% vs. 41%) and had less often used medical transport (41% vs. 73%) to an emergency department (8% vs. 62%), to hospital-based (11% vs. 17%) or community-based (16% vs. 12%) chemotherapy, to a general practitioner (73% vs. 78%) or to a community-based nursing service (63% vs. 73%). However, when they consulted a general practitioner (median 3 visits vs. 2) or a nurse (median 22 nursing procedures vs. 10) during their last month of life, visits were more frequent. The leading cause of death was tumour, which represented 69% of deaths at home vs. 74% of deaths in hospital.
CONCLUSIONS: In France, home management during the last month of life is uncommon and even when it is occurs, in one out of two cases patients pass away in a hospital setting. This study is an interrogation on medical choices, given the wish of many of the French to die at home and placing their choices in an international perspective.
AIM: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014.
METHODS: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases.
RESULTS: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased.
CONCLUSION: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
BACKGROUND: Insight into health conditions associated with death can inform healthcare policy. We aimed to cluster 27,525,663 deceased people based on the health conditions associated with death to study the associations between the health condition clusters, demographics, the recorded underlying cause and place of death.
METHODS: Data from all deaths in the United States registered between 2006 and 2016 from the National Vital Statistics System of the National Center for Health Statistics were analyzed. A self-organizing map (SOM) was used to create an ordered representation of the mortality data.
RESULTS: 16 clusters based on the health conditions associated with death were found showing significant differences in socio-demographics, place, and cause of death. Most people died at old age (73.1 (18.0) years) and had multiple health conditions. Chronic ischemic heart disease was the main cause of death. Most people died in the hospital or at home.
CONCLUSIONS: The prevalence of multiple health conditions at death requires a shift from disease-oriented towards person-centred palliative care at the end of life, including timely advance care planning. Understanding differences in population-based patterns and clusters of end-of-life experiences is an important step toward developing a strategy for implementing population-based palliative care.
Policies and practices have been developed to operationalize assisted dying processes in Canada. This project utilized an environmental scan to determine the spectrum of assisted death reporting practices and medical certificate of death (MCD) completion procedures both nationally and internationally. Findings suggest medically assisted dying (MAiD) is represented on the MCD inconsistently nationally and internationally. Related factors include the specifics of local assisted death legislation and variations in death-reporting legislation, variation in terminology surrounding assisted death and designated oversight agency for assisted dying reporting.
The effect of hospice care on place of death among centenarians remained unexplored. Using data obtained from National Health Insurance Research Database (2002-2010), we compared the differences in place and cause of death between centenarians and noncentenarians. These data were stratified into centenarian (n = 2495) and noncentenarian (n = 820 563) death. Data in place and cause of death and hospice care interventions were retrieved. Poisson regression models were used to evaluate factors associated with the centenarians' place of death. Time series models were used to predict the number of centenarian deaths until 2025. Most (63.8%) of the centenarians died at their own homes, followed by 30.5% who died in hospital. Hospice home care was involved in only 0.3% of the centenarian deaths but in 1.8% of the noncentenarian deaths. The leading causes of death among centenarians were respiratory diseases (16.6%), circulatory diseases (15.2%), and pneumonia (14.8%). Among the centenarians, those who died of circulatory disease, old age, and respiratory diseases were more likely to die at their own homes. We forecasted the number of annual centenarian deaths to reach 800 in 2025. Therefore, an increase in the provision of advanced care planning and earlier home hospice care intervention may enable centenarians to die at their own residence.
Background: Bereavement is associated with impaired mental health, increases in adverse health behaviors, and heightened risk of suicidal ideation, attempts, and death by suicide. The purpose of this literature review was to explore associations between cause of death and suicidal thoughts among bereaved individuals. Our aim was to compare incidence of suicidal ideation by cause of death and identify gaps in this literature to guide future research and clinical intervention.
Methods: PRISMA-P guidelines were used to structure an electronic literature search in the PsycINFO, MEDLINE, and Web of Science databases. The search focused on English language studies that were published before February 2019 and sought to compare rates of suicidal ideation among bereaved people who lost a loved one to suicide, accidental overdose, cancer, dementia, cardiovascular disease, and HIV/AIDs.
Results: Ten articles were identified with suicide as cause of death, zero articles for accidental overdose, zero articles for cardiovascular disease, eight articles for cancer, one article for dementia, and one article for HIV/AIDs. Given the limited number of articles generated by our search, a formal meta-analysis was not appropriate. However, a comparison of results did suggest that suicide bereavement was associated with the highest rates of suicide ideation (14.1% to 49%). Stigma, isolation, avoidance behaviors, and psychological distress were associated with suicidal thoughts among bereaved individuals, regardless of the deceased's cause of death.
Conclusions: Findings of this literature search revealed significant gaps in the literature, especially regarding thoughts of suicide in bereaved survivors of accidental overdose and cardiovascular disease. Results suggest that multiple causes of death are associated with suicidal ideation in bereavement, but that suicide bereavement may be the cause of death associated with the highest risk of suicidal ideation. More research is needed to understand the ways in which cause of death influences prevalence, risk, and protective factors associated with suicidal thoughts among bereaved individuals.
This analysis addresses the controversial question of whether disclosure of a significant other's traumatic death cause is associated with mental health outcomes. Consistent with the limited previous research, this data, collected from 131 suicide bereaved, 10 exclusively drug death bereaved, and six other bereaved respondents, showed fewer grief difficulties and better self-rated mental health among those inclined to openly disclose a significant other's death cause, compared to those who feared incurring shame and embarrassment from doing so. Regression analyses suggested that the tendency to openly discuss the death was the single most powerful correlate to explaining variations in grief difficulties.
INTRODUCTION: There is no standard for categorizing reasons for death in those who achieve return of spontaneous circulation (ROSC) after cardiac arrest but die before hospital discharge. Categorization is important for comparing outcomes across studies, assessing benefits of interventions, and developing quality-improvement initiatives. We developed and tested a method for categorizing reasons for death after cardiac arrest in both in-hospital (IHCA) and out-of-hospital (OHCA) arrests.
METHODS: Single-center, retrospective, cohort study of patients with ROSC after IHCA or OHCA between 2008 and 2017 who died before hospital discharge. Traumatic arrests and patients with "do-not-resuscitate" orders prior to their arrest were excluded. Two investigators assigned each patient to one of five predefined reasons for death. Interrater reliability was assessed using Fleiss' kappa. For final categorization, discrepancies were resolved by a third investigator.
RESULTS: There were 182 IHCA and 226 OHCA included. There was substantial agreement between raters (kappa of 0.62 and 0.61 for IHCA and OHCA, respectively). Reasons for death for IHCA and OHCA were: neurological withdrawal of care (27% vs 73%), comorbid withdrawal of care (36% vs 4%), refractory hemodynamic shock (25% vs 17%), respiratory failure (1% vs 3%), and sudden cardiac death (11% vs 4%). The differences in reasons for death among the two groups were significant (p-value < 0.001).
CONCLUSIONS: Categorizing reasons for death after cardiac arrest with ROSC is feasible using our proposed categories, with substantial inter-rater agreement. Neurologic withdrawal of care is much less common in IHCA than OHCA, which may have implications for further research.
BACKGROUND: There is a heterogeneous literature on healthcare utilization patterns at the end of life. The objective of this study is to examine the impact of closeness to death on the utilization of acute hospital-based healthcare services and some primary healthcare services and compare differences in gender, age groups and major causes of death disease specific mortality.
METHODS: A matched case-control study, nested in a cohort of 411,812 subjects, linked to administrative databases was conducted. All subjects were residents in the Friuli Venezia Giulia Region (Italy), born before 1946, alive in January 2000 and were followed up to December 2014. Overall, 158,571 decedents/cases were matched by gender and year of birth to one control, alive at least one year after their matched case's death (index-date). Hospital admissions, emergency department visits, drug prescriptions, specialist visits and laboratory tests that occurred 365 days before death/index-date, have been evaluated. Odds Ratios (ORs) for healthcare utilization were estimated through conditional regression models, further adjusted for Charlson Comorbidity Index and stratified by gender, age groups and major causes of death.
RESULTS: Decedents were significantly more likely of having at least one hospital admission (OR 7.0, 6.9-7.1), emergency department visit (OR 5.2, 5.1-5.3), drug prescription (OR 2.8, 2.7-2.9), specialist visit (OR 1.4, 1.4-1.4) and laboratory test (OR 2.7, 2.6-2.7) than their matched surviving counterparts. The ORs were generally lower in the oldest age group (95+) than in the youngest (55-74). Healthcare utilization did not vary by sex, but was higher in subjects who died of cancer.
CONCLUSION: Closeness to death appeared to be strongly associated with healthcare utilization in adult/elderly subjects. The risk seems to be greater among younger age groups than older ones, especially for acute based services. Reducing acute healthcare at the EOL represents an important issue to improve the quality of life in proximity to death.
Patients with hematologic malignancies (HMs) often receive aggressive end-of-life care and less frequently use hospice. Comprehensive longitudinal reporting on place of death, a key quality indicator, is lacking. Deidentified death certificate data were obtained via the National Center for Health Statistics for all HM deaths from 1999 to 2015. Multivariate regression analysis (MVA) was used to test for disparities in place of death associated with sociodemographic variables. During the study period, there were 951 435 HM deaths. Hospital deaths decreased from 54.6% in 1999 to 38.2% in 2015, whereas home (25.9% to 32.7%) and hospice facility deaths (0% to 12.1%) increased (all P < .001). On MVA of all cancers, HM patients had the lowest odds of home or hospice facility death (odds ratio [OR], 0.55; 95% confidence interval, 0.54-0.55). Older age (40-64 years: OR, 1.34; =65 years: OR, 1.89), being married (OR, 1.62), and having myeloma (OR, 1.34) were associated with home or hospice facility death, whereas being black or African American (OR, 0.68), Asian (OR, 0.58), or Hispanic (OR, 0.84) or having chronic leukemia (OR, 0.83) had decreased odds of dying at home or hospice (all P < .001). In conclusion, despite hospital deaths decreasing over time, patients with HMs remained more likely to die in the hospital than at home.
Cet article est une mise au point sur la mort inattendue du nourrisson, qui malgré une forte baisse, reste la 1ère cause de décès au-delà de la période néonatale, justifiant de renforcer les mesures de prévention et d'en comprendre la cause. (Adapté du R.A.).
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.Objectives: Low/middle-income countries, particularly Small Island Developing States, face many challenges including providing good palliative care and choice in place of care and death, but evidence of the circumstances of dying to inform policy is often lacking. This study explores where people die in Trinidad and Tobago and examines and describes the factors associated with place of death.
Methods: A population-level analysis of routinely collected death certificate and supplementary health data where the unit of analysis was the recorded death. We followed the Reporting of Studies Conducted Using Observational Routinely Collected Health Data reporting guidelines, an extension of Strengthening the Reporting of Observational Studies in Epidemiology, on a deidentified data set on decedents (n=10 221) extracted from International Statistical Classification of Diseases version 10 coded death records for the most recent available year, 2010.
Results: Of all deaths, 55.4% occurred in a government hospital and 29.7% in a private home; 65.3% occurred in people aged 60 years and older. Cardiovascular disease (23.6%), malignancies (15.5%) and diabetes mellitus (14.7%) accounted for over half of all deaths. Dying at home becomes more likely with increasing age (70–89 years (OR 1.91, 95% CI 1.73 to 2.10) and 90–highest (OR 3.63, 95% CI 3.08 to 4.27)), and less likely for people with malignancies (OR 0.85, 95% CI 0.74 to 0.97), cerebrovascular disease (OR 0.61, 95% CI 0.51 to 0.72) and respiratory disease (OR 0.74, 95% CI 0.59 to 0.91).
Conclusion: Place of death is influenced by age, sex, race/ethnicity, underlying cause of death and urbanisation. There is inequality between ethnic groups regarding place of care and death; availability, affordability and access to end-of-life care in different settings require attention.