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: There are substantial disparities in distribution of palliative care (PC) services within Latin America, with Bolivia historically lagging behind neighboring countries in PC metrics. Comprehensive data on PC in Bolivia were last collected in 2012 through the Latin American Association for Palliative Care (ALCP) Atlas of PC.
Objective: to update the 2012 data and describe the current state of PC in Bolivia to aid in their ongoing efforts to expand PC services. In addition, to develop an instrument for assessment of national PC capacity that can be adapted for use in other countries.
Design: A cross-sectional study was conducted using personal and online structured interviews of PC team directors from all 19 PC teams around the country.
Measurements: new survey was developed for this study based on the ALCP Atlas of PC and international PC guidelines.
Results: PC teams in Bolivia have slowly increased in number since 2008. There are currently 19 PC teams in Bolivia, highly concentrated in urban centers. Multidisciplinary teams typically include physicians, nurses, psychologists, and social workers. The majority of teams offer treatments for all 16 essential PC symptoms included in our study. Teams report significant barriers for their patients to obtain opioid pain medications.
Conclusions: Bolivian PC teams utilize multidisciplinary teams and have the capability to treat many of the essential PC symptoms with guideline-recommended treatments. However, it is unclear whether availability of services translates to accessibility for most patients, especially given their geographic distribution and cost of services.
Context: Palliative care programs are typically evaluated using observational data, raising concerns about selection bias.
Objective: To quantify selection bias due to observed and unobserved characteristics in a palliative care demonstration program.
Methods: Program administrative data and 100% Medicare claims data in two-states and a 20% sample in eight-states (2013-2017). The sample included 2983 Medicare fee-for-service beneficiaries age 65+ participating in the palliative care program and three matched cohorts: 1) regional 2) two-states and 3) eight-states. Confounding due to observed factors was measured by comparing patient baseline characteristics. Confounding due to unobserved factors was measured by comparing days of follow-up, and six-month and one-year mortality rates.
Results: After matching, evidence for observed confounding included differences in observable baseline characteristics including race, morbidity and utilization. Evidence for unobserved confounding included significantly longer mean follow-up in the regional, two-state, and eight-state comparison cohorts, with 207 (p<.001), 192 (p<.001), and 187 (p<.001) days, respectively, compared to the 162 days for the palliative care cohort. The palliative care cohort had higher 6 month and 1-year mortality rates of 53.5% and 64.5% compared to 43.5% and 48.0% in the regional comparison, 53.4% and 57.4% in the two-state comparison, and 55.0% and 59.0% in the eight-state comparison.
Conclusions: This case study demonstrates that selection of comparison groups impacts the magnitude of measured and unmeasured confounding, which may change effect estimates. The substantial impact of confounding on effect estimates in this study raises concerns about the evaluation of novel serious illness care models in the absence of randomization. We present key lessons learned for improving future evaluations of palliative care using observational study designs.
Adoption of assisted dying has rapidly grown, but many groups caution that these policies can cause suicide contagions. If those urging caution are correct, jurisdictions with these policies will experience increased suicides. This study aimed to determine the changes in population suicide rates in Belgium before and after its 2002 policy using the synthetic control method (SCM) and generalized synthetic control method (GSCM). As comparisons we used additional European Union members that have not adopted these policies. GSCM showed an average annual suicide rate increase of 0.73 per 100,000 population (95% CI - 5.7 to 7.2; p = 0.80). Placebo testing based on the SCM analysis showed equal outcomes for Belgium and the comparisons. This study failed to show evidence of association between implementation of legislation legitimizing assisted dying and population suicide rates. The threat of suicide contagion has influenced policy discussions in the past, but this study suggests that there is presently no indication for policy-makers to view suicide contagions as a concerning side effect of assisted dying legislation.
Context: Hospice facilities are increasingly preferred as a location of death, but little is known about the characteristics of patients who die in these facilities in the U.S.
Objectives: We sought to examine the trends and factors associated with death in a hospice facility.
Methods: Retrospective cross-sectional study using mortality data for years 2003–2017 for deaths attributed to natural causes in the U.S.
Results: The proportion of natural deaths occurring in hospice facilities increased from 0.2% in 2003 to 8.3% in 2017, resulting in nearly 1.7 million deaths during this time frame. Females had increased odds of hospice facility deaths (odds ratio [OR] = 1.04; 95% CI = 1.04, 1.05). Nonwhite race was associated with lower odds of hospice facility death (black [OR = 0.915; 95% CI = 0.890, 0.940]; Native American [OR = 0.559; 95% CI = 0.515, 0.607]; and Asian [OR = 0.655; 95% CI = 0.601, 0.713]). Being married was associated with hospice facility death (OR = 1.06; 95% CI = 1.04, 1.07). Older age was associated with increased odds of hospice facility death (85 and older [OR = 1.40; 95% CI = 1.39, 1.41]). Having at least some college education was associated with increased odds of hospice facility death (OR = 1.13; 95% CI = 1.11, 1.15). Decedents from cardiovascular disease had the lowest odds of hospice facility death (OR = 0.278; 95% CI = 0.274, 0.282).
Conclusion: Hospice facility deaths increased among all patient groups; however, striking differences exist by age, sex, race, marital status, education level, cause of death, and geography. Factors underlying these disparities should be examined.
BACKGROUND: Public knowledge and awareness of palliative care (PC) is important to its effective use. However, it remains unclear whether the geographic variation in knowledge of PC exits in the United States. This study examined the national geographic variation in knowledge of PC.
METHODS: The study sample was obtained from the 2018 National Cancer Institute's Health Information National Trends Survey. Basic knowledge of PC, goal concordant treatment, misconceptions, and primary information source of PC were compared across 4 census regions. Multivariable logistic regression was used to examine factors associated with awareness of PC among 9 census divisions.
RESULTS: A total of 3194 respondents (weighted sample size: 229 591 005) were included in this study. Overall, 29% of all respondents reported having knowledge of PC; 32.9% of those residing in Northeast had some knowledge of PC, followed by 30.8% in the South, 26.2% in Midwest, and 25.6% in West. By census divisions, respondents residing in 3 divisions were more likely to have PC knowledge (New England, odds ratio: 3.06, 95% CI: 1.48-6.32, P = .003; South Atlantic, odds ratio: 1.96, 95% CI: 1.15-3.35, P = .014; Pacific, odds ratio: 1.86, 95% CI: 1.12-3.09, P = .018) compared to those in the Mountain division.
CONCLUSIONS: The variation of PC knowledge on census division and state level in 2018 was consistent with the real-world geographic disparities in the availability of PC programs. These findings represent an opportunity for minimizing the gap of geographic disparity by initiating strategic programs and promoting PC programs nationwide.
In this paper we document some of the practical aspects of implementing medical assistance in dying (MAiD) since it became legal in Canada in 2016. The percentage of annual deaths in Canada due to MAiD varies widely, ranging from less than 0.5% in some areas to over 5% in others. By the end of 2019, approximately 13,000 people had an assisted death in Canada (1.6% of all deaths). The average age is 73 years and the majority have cancer (64%), followed by end-stage organ failure (17%), and neurological disease (11%). The safeguards in Canadian law include having two witnesses sign the patient request form, having two independent clinicians agree that the patient is eligible, and requiring a 10-day waiting period after the request is made. Although the criminal law is federal and applies throughout the nation, health services managed provincially, and there are many different models of care being used. Some provinces have standardized prescriptions and procedures for assisted dying with centralized care coordinators supporting both patients and providers. Other provinces expect individual providers to manage all aspects of assisted dying. The procedure and medications are provided free of charge to patients, but it took years before many providers were remunerated for their services. Access for patients has been a problem because there are too few providers of care (especially in rural areas), and many people have difficulty getting accurate information about the process. Many faith-based health care facilities continue to refuse to allow assisted dying within their facilities, so patients requesting MAiD need to be transferred to other locations in their last hours of life. Solutions to these problems have included the development of more training and support for providers and the creation of coordinating centres that provide information and support for patients throughout the process. Telemedicine is used for assessment of eligibility when required, especially during the COVID pandemic. There are similarities in problems of access to all end of life care options, including palliative care and residential hospices. The relationships between providers of assisted dying and specialists in palliative care vary, and examples exist throughout the spectrum from collegial to hostile. This is slowly improving, as individual clinicians gain more experience with patients choosing assisted dying. Public culture is changing as there are more conversations occurring about death and dying.
Most older adults living with chronic illness prefer palliation of symptoms at home rather than invasive therapies or hospitalization at the end of life. In the United States, death occurring at home has become more common than death occurring in the hospital. However, national patterns may overlook important regional variation in end-of-life (EOL) care. Additionally, research is lacking on these patterns among the increasing population of older adults with chronic illness. Therefore, we sought to assess recent temporal patterns and regional variation in end-of-life health care use by Medicare beneficiaries with chronic illness.
OBJECTIVE: To quantify and examine specialist palliative care (SPC) in-hospital activity and compare it to routinely collected administrative data on palliative care (PC).
METHODS: All patients discharged from a large acute care tertiary hospital in New South Wales, Australia, between July 1 and December 31, 2017, were identified from the hospital's data warehouse. Administrative data were supplemented with information from the electronic medical record for hospital stays which were assigned the PC additional diagnosis code (Z51.5); had a "palliative care" care type; or included SPC consultation.
RESULTS: Of 34 653 hospital stays, 524 were coded as receiving PC-based on care type (43%) and/or diagnosis code Z51.5 (100%). Specialist palliative care provided 1717 consultations over 507 hospital stays. Patients had 2 (median; interquartile range: 1-4) consultations during an average stay of 15.3 days (SD 15.78; median 10); the first occurred 7.0 days (SD 12.13; median 3) after admission. Of patient stays with an SPC consultation, 70% were assigned the PC Z51.5 code; 60% were referred for symptom management; 68% had cancer. One hundred forty-one patients were under a palliative specialist-either from initial hospital admission (49.6%) or later in their stay.
CONCLUSIONS: Palliative care specialists provide expert input into patient management, benefitting patients and other clinicians. Administrative data inadequately capture their involvement in patient care, especially consultations, and are therefore inappropriate for reporting SPC activity. Exclusion of information related to SPC activity results in an incomplete and distorted representation of PC services and fails to acknowledge the valuable contribution made by SPC.
Very little is known about the characteristics of the Medicare beneficiaries receiving hospice at home, defined using the Medicare Healthcare Common Procedure Coding System codes, as a traditional home, an assisted living facility, or a nursing home. A secondary analysis of 2015 Medicare data using regression to describe the characteristics of decedents (n = 675 782) in hospice residing in a traditional home, an assisted living facility, and a nursing home was completed. Results suggest that the proportion of Medicare decedents in hospice with more than 180 lifetime days in hospice was highest among those who resided in an assisted living facility (25.03%) compared with those who resided in a nursing home (18.87%) or in a traditional home (13.04%). Regression findings suggest that, compared with decedents in hospice without dementia who resided in a traditional home, decedents in hospice with a primary diagnosis of dementia were more likely to reside in an assisted living facility (adjusted odds ratio, 2.29; P < .0001) when controlling for other factors. In summary, decedents in hospice who resided in a traditional home have different characteristics than decedents who resided in an assisted living facility or a nursing home. Interdisciplinary providers should consider these differences when managing hospice interventions.
Background: The use of continuous sedation until death (CSD) has been highly debated for many years. It is unknown how the use of CSD evolves over time. Reports suggest that there is an international increase in the use of CSD for terminally ill patients.
Objective: To gain insight in developments in the use of CSD in various countries and subpopulations.
Design: We performed a search of the literature published between January 2000 and April 2020, in Pubmed, Embase, CINAHL, Psycinfo and the Cochrane Library by using the PRISMA guidelines. The search contained the following terms: continuous sedation, terminal sedation, palliative sedation, deep sedation, end-of-life sedation, sedation practice, and sedation until death.
Results: We found 23 articles on 16 nationwide studies and 38 articles on 37 subpopulation studies. In nationwide studies on deceased persons frequencies of CSD varied from 3% in Denmark in 2001 to 18% in the Netherlands in 2015. Nationwide studies indicate an increase in the use of CSD. Frequencies of CSD in the different subpopulations varied too widely to observe time trends. Over the years more studies reported on the use of CSD for non-physical symptoms including fear, anxiety, and psycho-existential distress. In some studies, there was an increase in requests for sedation of patients and their families.
Conclusions: The frequency of CSD seems to increase over time possibly partly due to an extension of indications for sedation, from mainly physical symptoms to also non-physical symptoms.
Background: There is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs). No study has investigated if it was best to include or exclude data from services with low response rates in order to obtain the patient reported outcomes most representative of the national palliative care population. Thus, the aim of this study was to investigate whether services with low response rates should be excluded from analyses to prevent effects of possible selection bias.
Methods: Data from the Danish Palliative Care Database from 24,589 specialized palliative care admittances of cancer patients was included. Patients reported ten aspects of quality of life using the EORTC QLQ-C15-PAL-questionnaire. Multiple linear regression was performed to test if response rate was associated with the ten aspects of quality of life.
Results: The score of six quality of life aspects were significantly associated with response rate. However, in only two cases patients from specialized palliative care services with lower response rates (< 20.0%, 20.0–29.9%, 30.0–39.9%, 40.0–49.9% or 50.0–59.9) were feeling better than patients from services with high response rates (=60%) and in both cases it was less than 2 points on a 0–100 scale.
Conclusions: The study hypothesis, that patients from specialized palliative care services with lower response rates were reporting better quality of life than those from specialized palliative care services with high response rates, was not supported. This suggests that there is no reason to exclude data from specialized palliative care services with low response rates.
Context: Researchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority.
Objectives: This study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions.
Methods: This study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011–2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics.
Results: No or minimal caregiving burden is associated with =0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with =0.80 probability of giving such reports, even when perceiving high burden.
Conclusion: Caregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.
Objectives: To map current practice regarding discussions around resuscitation across England and Scotland in patients with cancer admitted acutely to hospital and to demonstrate the value of medical students in rapidly collecting national audit data.
Methods: Collaborators from the Macmillan medical student network collected data from 251 patient encounters across eight hospitals in England and Scotland. Data were collected to identify whether discussion regarding resuscitation was documented as having taken place during inpatient admission to acute oncology. As an audit standard, it was expected that all patients should be invited to discuss resuscitation within 24 hr of admission.
Results: Resuscitation discussions were had in 43.1% of admissions and of these 64.0% were within 24 hr; 27.6% of all admissions. 6.5% of patients had a “do not attempt resuscitation” order prior to admission with a difference noted between patients receiving palliative and curative treatment (8.5% and 0.39%, respectively, p < .05). Discussions regarding escalation of care took place in only 29.3% of admissions.
Conclusions: These data highlight deficiencies in the number of discussions regarding resuscitation that are being conducted with cancer patients that become acutely unwell. It also demonstrates the value of medical student collaboration in rapidly collecting national audit data.
Background: Data quality is fundamental to the integrity of quantitative research. The role of external researchers in data quality assessment (DQA) remains ill-defined in the context of secondary use for research of large, centrally curated health datasets. In order to investigate equity of palliative care provided to Indigenous Australian patients, researchers accessed a now-historical version of a national palliative care dataset developed primarily for the purpose of continuous quality improvement.
Objectives: (i) To apply a generic DQA framework to the dataset and (ii) to report the process and results of this assessment and examine the consequences for conducting the research.
Method: The data were systematically examined for completeness, consistency and credibility. Data quality issues relevant to the Indigenous identifier and framing of research questions were of particular interest.
Results: The dataset comprised 477,518 records of 144,951 patients (Indigenous N = 1515; missing Indigenous identifier N = 4998) collected from participating specialist palliative care services during a period (1 January 2010–30 June 2015) in which data-checking systems underwent substantial upgrades. Progressive improvement in completeness of data over the study period was evident. The data were error-free with respect to many credibility and consistency checks, with anomalies detected reported to data managers. As the proportion of missing values remained substantial for some clinical care variables, multiple imputation procedures were used in subsequent analyses.
Conclusion and implications: In secondary use of large curated datasets, DQA by external researchers may both influence proposed analytical methods and contribute to improvement of data curation processes through feedback to data managers.
OBJECTIVES: We investigated trends in end-of-life hospitalizations among nursing home residents (NHR) over 10 years and looked at differences between age groups and sexes as well as the length of terminal hospital stays.
STUDY DESIGN: Retrospective cohort study based on health insurance claims data of the AOK Bremen/Bremerhaven. All NHR aged 65 years or more who died between 2006 and 2015 were included.
MAIN OUTCOME MEASURES: We assessed the proportions of decedents who were in hospital on the day of death and during the last 3, 7, 14 and 30 days of life, stratified by two-year periods. Multiple logistic regressions were conducted to study changes over time, adjusting for covariates.
RESULTS: A total of 10,781 decedents were included (mean age 86.1 years, 72.1 % females). Overall, 29.2 % died in hospital, with a slight decrease from 30.3 % in 2006-2007 to 28.3 % in 2014-2015 (OR 0.86; 95 % CI 0.75-0.98). Of the 3150 terminal hospitalizations, 35.5 % lasted up to 3 days and the mean length of stay decreased from 9.0 (2006-2007) to 7.5 days (2014-2015). When looking at the last 7, 14 and 30 days of life, no changes over time were found. Male sex and younger age were associated with a higher chance of end-of-life hospitalization in almost all analyses.
CONCLUSIONS: End-of-life hospitalizations of NHR are common in Germany. There has been a small decrease during recent years in the proportion of in-hospital deaths, but not of hospitalizations during the last 7, 14 and 30 days of life. This might be explained by shorter durations of hospital stays.
BACKGROUND: There are no processes that routinely assess end-of-life care in Australian general practice. This study aimed to develop a data collection process which could collect observational data on end-of-life care from Australian general practitioners (GPs) via a questionnaire and clinical data from general practice software.
METHODS: The data collection process was developed based on a modified Delphi study, then pilot tested with GPs through online surveys across three Australian states and data extraction from general practice software, and finally evaluated through participant interviews.
RESULTS: The developed data collection process consisted of three questionnaires: Basic Practice Descriptors (32 items), Clinical Data Query (32 items) and GP-completed Questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed Questionnaire achieved a satisfactory level of validity and reliability. Our interviews with 23 participating GPs demonstrated the feasibility and acceptability of this data collection process in Australian general practice.
CONCLUSIONS: The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of end-of-life care. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary end-of-life care in Australia.
Background: The location of death is an important component of end-of-life care. However, contemporary trends in the location of death for cardiovascular deaths related to heart failure (CV-HF) and comparison to cancer deaths have not been fully examined.
Methods: We analyzed data from the Centers for Disease Control and Prevention’s Control Wide-Ranging Online Data for Epidemiologic Research database between 2003 and 2017 to identify location of death for CV-HF and cancer deaths. The proportions of deaths that occurred in a hospice facility, home, and medical facility were tested for trends using linear regression. Odds ratios were calculated to determine the odds of death occurring in a hospice facility or home (versus a medical facility) stratified by sex and race.
Results: We identified 2 940 920 CV-HF and 8 852 066 cancer deaths. Increases were noted in the proportion of CV-HF deaths in hospice facilities (0.2% to 8.2%; Ptrend<0.001) and at home (20.6% to 30.7%; Ptrend<0.001), whereas decreases were noted in the proportion of deaths in medical facilities (44.5% to 31.0%; Ptrend<0.001) and nursing homes (30.8% to 25.7%; Ptrend<0.001). The odds of dying in a hospice facility (odds ratio, 1.79 [1.75–1.82]) or at home (odds ratio, 1.55 [1.53–1.56]) versus a medical facility was higher for whites versus blacks. The rate of increase in proportion of deaths in hospice facilities was higher for cancer deaths (ß=1.05 [95% CI, 0.97–1.12]) than for CV-HF deaths (ß=0.61 [95% CI, 0.58–0.64]).
Conclusions: The proportion of CV-HF deaths occurring in hospice facilities is increasing but remains low. Disparities are noted whereby whites are more likely to die in hospice facilities or at home versus medical facilities compared with blacks. More research is needed to determine end-of-life preferences for patients with HF and identify the basis for these differences in location of death.
BACKGROUND: Global annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation.
AIMS: To project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends.
METHODS: Population-based trend analysis of place of death for people that died in Scotland (2004-2016) and projections using simple linear modelling (2017-2040); Transparent Expert Consultation to prioritise recommendations in response to projections.
RESULTS: Deaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8-23.4% and 14.5-18.8%), while the proportion of hospital deaths declined (58.0-50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding.
CONCLUSION: To sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.