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: Demographic characteristics play a role in influencing the decision to make end-of-life (EOL) directives among older adults living in the United States.
AIMS: To examine the associations between older adults' demographic characteristics (age, sex, marital status, residential site, and educational level) and their perceived importance of four self-care actions for EOL planning, as well as their desire and ability to perform these actions.
SETTINGS: A cross-sectional survey study of community-dwelling adults living in the southern United States from 2015 to 2016.
PARTICIPANTS: Community-dwelling adults aged 65 years and older (N = 123).
METHODS: A self-administered tool, the Patient Action Inventory for Self-Care and a demographic questionnaire were used. Multiple logistic regression was performed.
RESULTS: Forty-seven of (38.2%) participants lived in an urban community and 76 (61.8%) in a rural community. Demographic variables that were significant across the predictive models were older adults' residence, education levels, age, and marital status. Four demographic characteristics of living in rural areas, without a high school education, being 75 years or older, and married could be social determinants of EOL planning.
CONCLUSIONS: Older adults may need community-based support to address their end-of-life needs, especially those elders who want to remain independent in their home environment.
Since the early 1990s, long-term care policies have undergone significant transformations across OECD countries. In some countries, these changes have responded to the introduction of major policy reforms while in others, significant transformations have come about through the accumulation of incremental policy changes. This book brings together evidence from over 12 years of care reforms to examine changes in long-term care systems occurring in OECD countries. It discusses and compares key changes in national policies and examines the main successes and failures of recent reforms. Finally, it suggests possible policy strategies for the future in the sector.
Origine : BDSP. Notice produite par IRDES qR0xBJl8. Diffusion soumise à autorisation
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
BACKGROUND: Approximately half of decedents in Ontario, Canada, receive some palliative care, but little is known about the influence of language on the nature of these services.
OBJECTIVE: To examine differences between English- and French-speaking residents of Ontario in end-of-life care and outcomes (e.g., health care costs and location of death).
DESIGN: A retrospective cohort study using multiple linked databases.
SETTING/SUBJECTS: A population-based cohort of decedents in Ontario (2010–2013) who were living in long-term care institutions (i.e., nursing homes) or receiving home care before death (N = 25,759). Data from two regions with higher representations of Francophones were examined, with the final distribution by primary language being 75% Anglophone, 18% Francophone, and 7% other languages.
RESULTS: Compared with Anglophones, Francophones were more frequent users of long-term care (47.6% vs. 37.1%) and less frequent users of home care (71.3% vs. 76.3%). In adjusted models, the number of days spent in hospital in the last 90 days of life was similar between Anglophones and Francophones, although the odds of dying in hospital were significantly higher among the latter. The mean total health care cost in the last year of life was slightly lower among French ($62,085) compared with English ($63,814) speakers.
CONCLUSIONS: There are statistically significant differences in end-of-life outcomes between linguistic groups in Ontario, namely more institutionalization in long-term care, less home care use and more deaths in-hospital among Francophones (adjusted). Future research is needed to examine the cause of these differences. Strategies to ensure equitable access to quality end-of-life care are required.
Introduction: Socioeconomic status (SES) comprises of not just gross income but also educational qualification, financial security and individual perceptions of social status and class. It has been observed that people with low SES have less access and utilization of palliative care services. With this background, this observational study was carried out at SGCCRI to assess and evaluate the SES of patients attending the palliative care department and analyse the major social concerns of patients in the last days of life.
Objectives: Assessment of socio- economic status and demographic profile of patients with advanced cancer receiving palliative care.
Materials and Methods: From May 2017 to October 2017 we assessed the demographic features and socio-economic status of 80 advanced cancer patients receiving palliative care by interviewing them face to face with the help of a self designed social assessment sheet.
Results: A total of 80 patients consented to be interviewed with regards to assessment of their socio-economic conditions. Majority were male patients (64%) with the highest percentage in the age group of 60-70years (33%). 38% of the patients interviewed were from rural surroundings. Only 38% of the patients had completed their basic education. Approximately 30% of the patients interviewed had income less than 1lakh/month while majority (>60%) had income in the bracket of 1lakh- 2lakh. In 30% of cases, the patient was the sole earner in the family.
Conclusion: It was observed that majority of patients and their family were constrained with regards to financial resources and large percentage of patients had social insecurity with respect to future of family members.
OBJECTIVE: To explore the demographic factors and the level of knowledge related to information and communication technologies of potential users of a palliative care information system.
METHODS: The Task, User, Representation, Functionality (TURF) framework was applied to characterize potential users (patients and caregivers) of an information system for palliative care in a private clinic in Medellin, Colombia, through a survey.
RESULTS: We analyzed 35 patients and 39 caregivers. The majority were women, that lived in urban area and belonged to middle-income socioeconomic stratum. Caregivers, in contrast to patients, are common users of information and communication technologies.
CONCLUSION: An information system should focus on the needs of caregivers, and it would be targeted to subjects facing challenges related to technology adoption; information and communication technologies are interesting and important tools for the improvement of health team.
BACKGROUND: We investigated the demographic correlates associated with suicide bereavement among a representative sample of U.S. adults from the 2016 General Social Survey. A secondary aim of this study was to use this representative data platform to cross-check official data findings of U.S. completed suicides.
METHODS: Questions on suicide bereavement were administered to 1,432 GSS 2016 respondents and these were cross-tabulated with various demographic and social activity variables included in this omnibus survey to investigate whether suicide bereaved respondents shared any distinctive demographic characteristics.
RESULTS: Findings showed that friends of the suicide deceased person outnumbered the deceased's first degree relatives by at least 2 to 1. We also observed older, White, Non-Hispanic and native born women were over-represented among the suicide bereaved. The suicide bereaved were also less likely to live in the Pacific region, and to live in the nation's largest cities, and were more likely to come from homes where a gun was owned by someone in the household. More of the suicide bereaved reported themselves to be in poorer physical health and bereaved women were more likely to be Facebook subscribers.
CONCLUSIONS: These findings are consistent with other data on U.S. suicide patterns and the greater likelihood of firearms being utilized in suicide deaths. These revealed demographic correlates of suicide offer valuable information to helping agencies seeking to reach potential clients among the suicide bereaved.
Background: Surveys suggest that most people prefer to die at home. Trends in causes of mortality and age composition could limit the feasibility of home deaths.
Aim: To examine the effect of changes in decedents’ age, gender and cause of death on the pattern of place of death using data on all deaths in Norway for the period 1987–2011.
Design: Population-based observation study comparing raw, predicted, as well as standardised shares of place of death isolating the effect of demographic and epidemiological changes. The analysis was bolstered with joinpoint regression to detect shifts in trends in standardised shares.
Setting/participants: All deaths (1,091,303) in Norway 1987–2011 by age, gender and cause of death. Place of death at home, hospital, nursing home and other.
Results: Fewer people died in hospitals (34.1% vs 46.2%) or at home (14.2% vs 18.3%), and more in nursing homes (45.5% vs 29.5%) in 2011 than in 1987. Much of the trend can be explained by demographic and epidemiological changes. Ageing of the population and the epidemiological shift represented by the declining share of deaths from circulatory diseases (31.4% vs 48.4%) compared to the increase in deaths from neoplasms (26.9% vs 21.8%) and mental/behavioural diseases (4.4% vs 1.2%) are the strongest drivers in the shift in place of death. Joinpoint regression shows important differences between categories.
Riche des acquis de l'archéologie, de l'histoire, de la démographie et de la sociologie, cet ouvrage sur la mort périnatale traite de la gestion des corps, des modes d'enregistrement et du vécu familial pris dans son acception large, trois dimensions au poids crucial pour le destin des foetus et mort-nés.
OBJECTIVES: Hospice offers non-curative symptomatic management to improve patients' quality of life, satisfaction, and resource utilization. Hospice enrollment among patients with chronic liver disease (CLD) is not well studied. The aim of this study is to examine the characteristics of Medicare enrollees with CLD, who were discharged to hospice.
METHODS: Medicare patients discharged to hospice between 2010 and 2014 were identified in Medicare Inpatient and Hospice Files. CLDs and other co-morbidities were identified by International Classification of Diseases-ninth revision codes. Generalized linear model was used to estimate regression coefficients with P-values. Logistic regression was used to calculate odds ratios and 95% confidence intervals.
RESULTS: A total of 2,179 CLD patients and 34,986 controls without CLD met the inclusion criteria. Non-alcoholic fatty liver disease, alcoholic liver disease, and hepatitis C virus (HCV) were the most frequent cause of CLD. CLD patients were younger (70 vs. 83 years), more likely to be male (57.7 vs. 39.3%), had longer hospital stay (length of stay, LOS) (19.4 vs. 13.0 days), higher annual charges ($175,000 vs. $109,000), higher 30-day re-hospitalization rates (51.6 vs. 34.2%), and shorter hospice LOS (13.7 vs. 17.7 days) than controls (all P<0.001). Presence of HCV and congestive heart failure were the strongest contributors to increased total annual costs (34% and 31% higher, P<0.001), increased total annual LOS (26% and 43% higher, P<0.001), and increased 30-day readmission risk (2.20 and 2.19 times, respectively).
CONCLUSIONS: Patients with CLD have longer and costly hospitalizations before hospice enrollment as compared with patients without CLD. It was highly likely that these patients were enrolled relatively late, which could potentially lead to less benefit from hospice.
Introduction: Preferences for future medical treatments may be documented in a legal document known as an advance directive (AD). Despite national efforts to promote AD completion,1 men, blacks, and those with less education less frequently complete ADs.2,3 However, it remains unclear whether such groups differ in their willingness to complete ADs or have different opportunities to do so. The latter would suggest disparities in access to advance care planning. We sought to elucidate this key distinction by assessing associations between demographic characteristics and AD completion within two randomized controlled trials (RCTs) that presented uniform opportunities to participants who may be targeted for AD completion.
Methods and findings: We performed secondary analyses of data from two RCTs (NCT02289105 and NCT02017548). RCT 1 compared three ADs that differed in how information was presented to 484 people with serious illnesses enrolled from 30 clinics within two Pennsylvania health...
OBJECTIVE: To analyse the referral patterns of perinatal patients referred to a specialist palliative care service (SPCS), their demographics, diagnoses, duration of illness, place of death and symptom profile.
DESIGN: A retrospective chart review of all perinatal referrals over a 4-year period to the end of 2015.
SETTING: A consultant-led paediatric SPCS at Our Lady's Children's Hospital, Crumlin, Dublin, and the Coombe Women & Infants University Hospital, Dublin.
RESULTS: 83 perinatal referrals were received in a 4-year period. Chromosomal abnormalities accounted for 35% of diagnoses, congenital heart disease 25%, complex neurological abnormalities 11% and renal agenesis 4%. 22 referrals (26.5%) were made antenatally, with 61 (73.5%) postnatally. Of the postnatal referrals, 27 (44%) were asymptomatic on referral. An opioid medication was recommended (regularly or as required) in 46 cases. Symptom control was achieved without dose titration in 43 of these cases (93%). Of 47 deaths in this group referred postnatally, 22 of these (47%) died at home with support from community teams. Discharge home for best supportive care required complex interagency communication and cooperation.
CONCLUSIONS: Perinatal palliative care requires effective multidisciplinary work, whether delivered in the inpatient setting or in the community. With appropriate support, end-of-life care can be delivered in the community.
Cet article aborde les cadres conceptuels permettant d'analyser la répartition intergénérationnelle des ressources économiques ainsi que les évolutions démographiques de l'Union Européenne et de la Suisse. Puis il traite de la prévoyance professionnelle suisse.
Purpose: The acute-on-chronic exacerbations of end-stage respiratory diseases often result in prolonged hospital stays, relating these events to ethical conflicts in the fields of medical futility and distributive justice. This study aimed to understand patients’ preferences for life-sustaining treatments when clinically stable and during regular follow-up visits, and to determine the factors that can influence these preferences.
Procedure: This was a prospective, observational, exploratory study using convenience sampling. Over a three-year period, the study enrolled 106 adult outpatients with end-stage pulmonary disease on long-term oxygen treatment with/without noninvasive mechanical ventilation with dyspnoea scores of 6 or more in the modified Borg dyspnoea scale and one of the following: Gold (chronic obstructive pulmonary disease classification) stage IV, diffusing capacity (DLCO) <40%, heart failure (New York Heart Association functional classification (NYHA)) stage III/IV, or systolic pulmonary artery pressure =40 mm Hg.
Results: Factors that were influential in preferences were age, gender, household status, NYHA class, and previous exposure to mechanical ventilation.
Conclusions: There was no consensus on life-sustaining treatment preferences. Demographic factors, such as age group, gender, household status, severity of disease, and previous treatment with mechanical ventilation, seemed to affect patients’ preferences.
AIM AND OBJECTIVES: To investigate the knowledge of and attitudes toward palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings.
BACKGROUND: Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia
DESIGN: A descriptive, cross-sectional, survey design was used.
METHODS: In total, a sample of 300 nurses (n=125) and nursing assistants (n=175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: Demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis.
RESULTS: Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care.
CONCLUSIONS: This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes toward palliative care.
BACKGROUND AND OBJECTIVES: The use of palliative care in AKI is not well described. We sought to better understand palliative care practice patterns for hospitalized patients with AKI requiring dialysis in the United States.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Using the 2012 National Inpatient Sample, we identified patients with AKI and palliative care encounters using validated International Classification of Diseases, Ninth Revision, Clinical Modification codes. We compared palliative care encounters in patients with AKI requiring dialysis, patients with AKI not requiring dialysis, and patients without AKI. We described the provision of palliative care in patients with AKI requiring dialysis and compared the frequency of palliative care encounters for patients with AKI requiring dialysis with that for patients with other illnesses with similarly poor prognoses. We used logistic regression to determine factors associated with the provision of palliative care, adjusting for demographics, hospital-level variables, and patient comorbidities.
RESULTS: We identified 3,031,036 patients with AKI, of whom 91,850 (3%) received dialysis. We observed significant patient- and hospital-level differences in the provision of palliative care for patients with AKI requiring dialysis; adjusted odds were 26% (95% confidence interval, 12% to 38%) lower in blacks and 23% (95% confidence interval, 3% to 39%) lower in Hispanics relative to whites. Lower provision of palliative care was observed for rural and urban nonteaching hospitals relative to urban teaching hospitals, small and medium hospitals relative to large hospitals, and hospitals in the Northeast compared with the South. After adjusting for age and sex, there was low utilization of palliative care services for patients with AKI requiring dialysis (8%)-comparable with rates of utilization by patients with other illnesses with poor prognosis, including cardiogenic shock (9%), intracranial hemorrhage (10%), and acute respiratory distress syndrome (10%).
CONCLUSIONS: The provision of palliative care varied widely by patient and facility characteristics. Palliative care was infrequently used in hospitalized patients with AKI requiring dialysis, despite its poor prognosis and the regular application of life-sustaining therapy.
BACKGROUND: Assessing characteristics in educational research is important to describe a student sample. However, consistency in measuring student characteristics is lacking, particularly in palliative and end-of-life (PEOL) care education research.
METHODS: A literature review was conducted to determine the primary characteristics to assess in PEOL education research, the corresponding level of measurement and associated statistical analyses to perform with the data.
RESULTS: Key characteristics to measure include: age, previous PEOL healthcare experience, previous personal experience with death/loss, previous PEOL education, program of enrolment and religion. Gender, ethnicity/race and living situation/place of residence were not supported as key characteristics to assess. Best methods by which to measure characteristics remain unclear and the utilisation of characteristics in research is inconsistent.
CONCLUSION: Identified characteristics should be measured in PEOL education research at the highest level of measurement. The influence of characteristics on outcomes should be considered in association with research questions.
Background and objectives: Despite significant morbidity and mortality associated with ESRD, these patients receive palliative care services much less often than patients with other serious illnesses, perhaps because they are perceived as having less need for such services. We compared characteristics and outcomes of hospitalized patients in the United States who had a palliative care consultation for renal disease versus other serious illnesses.
Design, setting, participants and measurements: In this observational study, we used data collected by the Palliative Care Quality Network, a national palliative care quality improvement collaborative. The 23-item Palliative Care Quality Network core dataset includes demographics, processes of care, and clinical outcomes of all hospitalized patients who received a palliative care consultation between December of 2012 and March of 2016.
Results: The cohort included 33,183 patients, of whom 1057 (3.2%) had renal disease as the primary reason for palliative care consultation. Mean age was 71.9 (SD=16.8) or 72.8 (SD=15.2) years old for those with renal disease or other illnesses, respectively. At the time of consultation, patients with renal disease or other illnesses had similarly low mean Palliative Performance Scale scores (36.0% versus 34.9%, respectively; P=0.08) and reported similar moderate to severe anxiety (14.9% versus 15.3%, respectively; P=0.90) and nausea (5.9% versus 5.9%, respectively; P>0.99). Symptoms improved similarly after consultation regardless of diagnosis (P>/=0.50), except anxiety, which improved more often among those with renal disease (92.0% versus 66.0%, respectively; P=0.002). Although change in code status was similar among patients with renal disease versus other illnesses, from over 60% full code initially to 30% full code after palliative care consultation, fewer patients with renal disease were referred to hospice than those with other illnesses (30.7% versus 37.6%, respectively; P<0.001).
Conclusions: Hospitalized patients with renal disease referred for palliative care consultation had similar palliative care needs, improved symptom management, and clarification of goals of care as those with other serious illnesses.