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1.
Palliat Med ; : 2692163211048340, 2021 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-34596445

RESUMEN

BACKGROUND: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. AIM: To determine the consistency with which the Surprise Question is used. DESIGN: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]-100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. SETTING/PARTICIPANTS: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. RESULTS: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). CONCLUSIONS: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.

2.
Health Qual Life Outcomes ; 19(1): 214, 2021 Sep 06.
Artículo en Inglés | MEDLINE | ID: mdl-34488787

RESUMEN

BACKGROUND: The Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF) is a tool created to assess the needs of people living with heart failure and their informal caregivers to assist delivering care in a more comprehensive way that addresses actual needs that are unmet, and to improve quality of life. In this study, we aimed to (1) Translate the tool into German and culturally adapt it. (2) Assess internal consistency, inter-rater reliability, and test-retest reliability of the German NAT: PD-HF. (3) Evaluate whether and how patients and health care personnel understand the tool and its utility. (4) Assess the tool's face validity, applicability, relevance, and acceptability among health care personnel. METHODS: Single-center validation study. The tool was translated from English into German using a forward-backward translation. To assess internal consistency, we used Cronbach´s alpha. To assess inter-rater reliability and test-retest reliability, we used Cohen´s kappa, and to assess validity we used face validity. RESULTS: The translated tool showed good internal consistency. Raters were in substantial agreement on a majority of the questions, and agreement was almost perfect for all the questions in the test-retest analysis. Face validity was rated high by health care personnel. CONCLUSION: The German NAT: PD-HF is a reliable, valid, and internally consistent tool that is well accepted by both patients and health care personnel. However, it is important to keep in mind that effective use of the tool requires training of health care personnel.


Asunto(s)
Insuficiencia Cardíaca/diagnóstico , Insuficiencia Cardíaca/terapia , Evaluación de Necesidades/normas , Calidad de Vida/psicología , Encuestas y Cuestionarios/normas , Anciano , Progresión de la Enfermedad , Femenino , Alemania , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Atención Dirigida al Paciente , Reproducibilidad de los Resultados , Volumen Sistólico , Traducción
3.
Artículo en Inglés | MEDLINE | ID: mdl-34404746

RESUMEN

OBJECTIVE: The Surprise Question (SQ) is a prognostic screening tool used to identify patients with limited life expectancy. We assessed the SQ's performance predicting 1-year mortality among patients in ambulatory heart failure (HF) clinics. We determined that the SQ's performance changes according to sex and other demographic (age) and clinical characteristics, mainly left ventricular ejection fraction (LVEF) and the New York Heart Association (NYHA) functional classifications. METHODS: We conducted a prospective cohort study in two HF clinics. To assess the performance of the SQ in predicting 1-year mortality, we calculated the sensitivity, specificity, positive and negative likelihood ratios, and the positive and negative predictive values. To illustrate if the results of the SQ changes the probability that a patient dies within 1 year, we created Fagan's nomograms. We report the results from the overall sample and for subgroups according to sex, age, LVEF and NYHA functional class. RESULTS: We observed that the SQ showed a sensitivity of 85% identifying ambulatory patients with HF who are in the last year of life. We determined that the SQ's performance predicting 1-year mortality was similar among women and men. The SQ performed better for patients aged under 70 years, for patients with reduced or mildly reduced ejection fraction, and for patients NYHA class III/IV. CONCLUSIONS: We consider the tool an easy and fast first step to identify patients with HF who might benefit from an advance care planning discussion or a referral to palliative care due to limited life expectancy.

4.
Palliat Med ; 35(6): 1108-1117, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33908288

RESUMEN

BACKGROUND: International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life. AIMS: To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment. DESIGN: This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention. SETTING/PARTICIPANTS: One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy-General Questionnaire. RESULTS: The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life. CONCLUSION: The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Neoplasias , Adulto , Humanos , Neoplasias/terapia , Cuidados Paliativos , Calidad de Vida
5.
Palliat Support Care ; : 1-14, 2020 Dec 09.
Artículo en Inglés | MEDLINE | ID: mdl-33295269

RESUMEN

OBJECTIVE: To assess the effectiveness of home-based palliative care (HBPC) on reducing hospital visits and whether HBPC lowered health care cost. METHOD: We searched six bibliographic databases (Embase (Ovid); Cochrane Central Register of Controlled Trials; Medline (Ovid); PubMed; Web of Science Core Collection; and, CINAHL) until February 2019 and performed a narrative synthesis of our findings. RESULTS: Of the 1,426 identified references, 21 articles based on 19 unique studies met our inclusion criteria, which involved 92,000 participants. In both oncological and non-oncological patients, HBPC consistently reduced the number of hospital visits and their length, as well as hospitalization costs and overall health care costs. Even though home-treated patients consumed more outpatient resources, a higher saving in the hospital costs counterbalanced this. The reduction in overall health care costs was most noticeable for study periods closer to death, with greater reductions in the last 2 months, last month, and last two weeks of life. SIGNIFICANCE OF RESULTS: Stakeholders should recognize HBPC as an intervention that decreases patient care costs at end of life and therefore health care providers should assess the preferences of patients nearing the end-of-life to identify those who will benefit most from HBPC.

6.
Palliat Med ; 34(8): 1019-1029, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32588755

RESUMEN

BACKGROUND: Use of implantable cardioverter defibrillators is increasingly common. As patients approach the end of life, it is appropriate to deactivate the shock function. AIM: To assess the prevalence of implantable cardioverter defibrillator reprogramming to deactivate the shock function at the end of life and the prevalence of advance directives among this population. DESIGN: Following a previously established protocol available in PROSPERO, we performed a narrative synthesis of our findings and used the logit transformation method to perform our quantitative synthesis. DATA SOURCES: We searched seven bibliographic databases (Embase, Cochrane Central register of controlled Trials, Medline-Ovid, Web-of-Science, Scopus, PsychInfo, and CINAHL) and additional sources until April 2019. RESULTS: Of the references we identified, 14 were included. We found a pooled prevalence of implantable cardioverter defibrillator reprogramming at the end of life of 28% (95% confidence interval, 22%-36%) with higher reprogramming rates after the recommendations for managing the device at the end of life were published. Among patients with advance directives, the pooled prevalence of advance directives that explicitly mentioned the device was 1% (95% confidence interval, 1%-3%). CONCLUSIONS: The prevalence of implantable cardioverter defibrillator reprogramming and advance directives that explicitly mentioned the device was very low. Study data suggested reprogramming decisions were made very late, after the patient experienced multiple shocks. Patient suffering could be ameliorated if physicians and other healthcare professionals adhere to clinical guidelines for the good management of the device at the end of life and include deactivating the shock function in the discussion that leads to the advance directive.


Asunto(s)
Desfibriladores Implantables , Directivas Anticipadas , Muerte , Humanos
8.
BMC Palliat Care ; 18(1): 36, 2019 Apr 09.
Artículo en Inglés | MEDLINE | ID: mdl-30979361

RESUMEN

BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions. METHODS: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance. DISCUSSION: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice. TRIAL REGISTRATION: Clinicaltrials.gov NCT03697213 (05/10/2018). Prospectively registered.


Asunto(s)
Actitud del Personal de Salud , Actitud Frente a la Muerte , Médicos Generales/psicología , Pronóstico , Bélgica , Médicos Generales/estadística & datos numéricos , Alemania , Humanos , Internet , Italia , Países Bajos , Cuidados Paliativos/métodos , Encuestas y Cuestionarios , Suiza , Reino Unido
9.
BMC Health Serv Res ; 18(1): 178, 2018 03 14.
Artículo en Inglés | MEDLINE | ID: mdl-29540161

RESUMEN

BACKGROUND: Lack of health insurance claims (HIC) in the last year of life might indicate suboptimal end-of-life care, but reasons for no HIC are not fully understood because information on causes of death is often missing. We investigated association of no HIC with characteristics of individuals and their place of residence. METHODS: We analysed HIC of persons who died between 2008 and 2010, which were obtained from six providers of mandatory Swiss health insurance. We probabilistically linked these persons to death certificates to get cause of death information and analysed data using sex-stratified, multivariable logistic regression. Supplementary analyses looked at selected subgroups of persons according to the primary cause of death. RESULTS: The study population included 113,277 persons (46% males). Among these persons, 1199 (proportion 0.022, 95% CI: 0.021-0.024) males and 803 (0.013, 95% CI: 0.012-0.014) females had no HIC during the last year of life. We found sociodemographic and health differentials in the lack of HIC at the last year of life among these 2002 persons. The likelihood of having no HIC decreased steeply with older age. Those who died of cancer were more likely to have HIC (adjusted odds ratio for males 0.17, 95% CI: 0.13-0.22; females 0.19, 95% CI: 0.12-0.28) whereas those dying of mental and behavioural disorders (AOR males 1.83, 95% CI:1.42-2.37; females 1.65, 95% CI: 1.27-2.14), and males dying of suicide (AOR 2.15, 95% CI: 1.72-2.69) and accidents (AOR 2.41, 95% CI: 1.96-2.97) were more likely to have none. Single, widowed, and divorced persons also were more likely to have no HIC (AORs in range of 1.29-1.80). There was little or no association between the lack of HIC and characteristics of region of residence. Patterns of no HIC differed across main causes of death. Associations with age and civil status differed in particular for persons who died of cancer, suicide, accidents and assaults, and mental and behavioural disorders. CONCLUSIONS: Particular groups might be more likely to not seek care or not report health insurance costs to insurers. Researchers should be aware of this aspect of health insurance data and account for persons who lack HIC.


Asunto(s)
Gastos en Salud/estadística & datos numéricos , Cuidado Terminal/economía , Adulto , Anciano , Femenino , Investigación sobre Servicios de Salud , Humanos , Revisión de Utilización de Seguros , Masculino , Persona de Mediana Edad , Suiza
10.
Med Care ; 55(2): 155-163, 2017 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-27579912

RESUMEN

BACKGROUND: Health care spending increases sharply at the end of life. Little is known about variation of cost of end of life care between regions and the drivers of such variation. We studied small-area patterns of cost of care in the last year of life in Switzerland. METHODS: We used mandatory health insurance claims data of individuals who died between 2008 and 2010 to derive cost of care. We used multilevel regression models to estimate differences in costs across 564 regions of place of residence, nested within 71 hospital service areas. We examined to what extent variation was explained by characteristics of individuals and regions, including measures of health care supply. RESULTS: The study population consisted of 113,277 individuals. The mean cost of care during last year of life was 32.5k (thousand) Swiss Francs per person (SD=33.2k). Cost differed substantially between regions after adjustment for patient age, sex, and cause of death. Variance was reduced by 52%-95% when we added individual and regional characteristics, with a strong effect of language region. Measures of supply of care did not show associations with costs. Remaining between and within hospital service area variations were most pronounced for older females and least for younger individuals. CONCLUSIONS: In Switzerland, small-area analysis revealed variation of cost of care during the last year of life according to linguistic regions and unexplained regional differences for older women. Cultural factors contribute to the delivery and utilization of health care during the last months of life and should be considered by policy makers.


Asunto(s)
Gastos en Salud/estadística & datos numéricos , Características de la Residencia/estadística & datos numéricos , Cuidado Terminal/economía , Adulto , Factores de Edad , Anciano , Femenino , Humanos , Revisión de Utilización de Seguros/estadística & datos numéricos , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Análisis de Área Pequeña , Factores Socioeconómicos , Suiza
11.
BMC Palliat Care ; 15(1): 83, 2016 Sep 23.
Artículo en Inglés | MEDLINE | ID: mdl-27662830

RESUMEN

BACKGROUND: Institutional deaths (hospitals and nursing homes) are an important issue because they are often at odds with patient preference and associated with high healthcare costs. The aim of this study was to examine deaths in institutions and the role of individual, regional, and healthcare supply characteristics in explaining variation across Swiss Hospital Service Areas (HSAs). METHODS: Retrospective study of individuals ≥66 years old who died in a Swiss institution (hospital or nursing homes) in 2010. Using a two-level logistic regression analysis we examined the amount of variation across HSAs adjusting for individual, regional and healthcare supply measures. The outcome was place of death, defined as death in hospital or nursing homes. RESULTS: In 2010, 41,275 individuals ≥66 years old died in a Swiss institution; 54 % in nursing homes and 46 % in hospitals. The probability of dying in hospital decreased with increasing age. The OR was 0.07 (95 % CI: 0.05-0.07) for age 91+ years compared to those 66-70 years. Living in peri-urban areas (OR = 1.06 95 % CI: 1.00-1.11) and French speaking region (OR = 1.43 95 % CI: 1.22-1.65) was associated with higher probability of hospital death. Females had lower probability of death in hospital (OR = 0.54 95 % CI: 0.51-0.56). The density of ambulatory care physicians (OR = 0.81 95 % CI: 0.67-0.97) and nursing homes beds (OR = 0.67 95 % CI: 0.56-0.79) was negatively associated with hospital death. The proportion of dying in hospital varied from 38 % in HSAs with lowest proportion of hospital deaths to 60 % in HSAs with highest proportion of hospital deaths (1.6-fold variation). CONCLUSIONS: We found evidence for variation across regions in Switzerland in dying in hospital versus nursing homes, indicating possible overuse and underuse of end of life (EOL) services.

12.
PLoS One ; 10(4): e0123764, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25875471

RESUMEN

BACKGROUND: Many studies have measured the intensity of end of life care. However, no summary of the measures used in the field is currently available. OBJECTIVES: To summarise features, characteristics of use and reported validity of measures used for evaluating intensity of end of life care. METHODS: This was a systematic review according to PRISMA guidelines. We performed a comprehensive literature search in Ovid Medline, Embase, The Cochrane Library of Systematic Reviews and reference lists published between 1990-2014. Two reviewers independently screened titles, abstracts, full texts and extracted data. Studies were eligible if they used a measure of end of life care intensity, defined as all quantifiable measures describing the type and intensity of medical care administered during the last year of life. RESULTS: A total of 58 of 1590 potentially eligible studies met our inclusion criteria and were included. The most commonly reported measures were hospitalizations (n = 44), intensive care unit admissions (n = 39) and chemotherapy use (n = 27). Studies measured intensity of care in different timeframes ranging from 48 hours to 12 months. The majority of studies were conducted in cancer patients (n = 31). Only 4 studies included information on validation of the measures used. None evaluated construct validity, while 3 studies considered criterion and 1 study reported both content and criterion validity. CONCLUSIONS: This review provides a synthesis to aid in choosing intensity of end of life care measures based on their previous use but simultaneously highlights the crucial need for more validation studies and consensus in the field.


Asunto(s)
Cuidado Terminal , Antineoplásicos/uso terapéutico , Bases de Datos Factuales , Hospitalización , Humanos , Unidades de Cuidados Intensivos , Neoplasias/tratamiento farmacológico
13.
BMC Health Serv Res ; 14: 289, 2014 Jul 03.
Artículo en Inglés | MEDLINE | ID: mdl-24992827

RESUMEN

BACKGROUND: Avoidable hospitalizations (AH) are hospital admissions for diseases and conditions that could have been prevented by appropriate ambulatory care. We examine regional variation of AH in Switzerland and the factors that determine AH. METHODS: We used hospital service areas, and data from 2008-2010 hospital discharges in Switzerland to examine regional variation in AH. Age and sex standardized AH were the outcome variable, and year of admission, primary care physician density, medical specialist density, rurality, hospital bed density and type of hospital reimbursement system were explanatory variables in our multilevel poisson regression. RESULTS: Regional differences in AH were as high as 12-fold. Poisson regression showed significant increase of all AH over time. There was a significantly lower rate of all AH in areas with more primary care physicians. Rates increased in areas with more specialists. Rates of all AH also increased where the proportion of residences in rural communities increased. Regional hospital capacity and type of hospital reimbursement did not have significant associations. Inconsistent patterns of significant determinants were found for disease specific analyses. CONCLUSION: The identification of regions with high and low AH rates is a starting point for future studies on unwarranted medical procedures, and may help to reduce their incidence. AH have complex multifactorial origins and this study demonstrates that rurality and physician density are relevant determinants. The results are helpful to improve the performance of the outpatient sector with emphasis on local context. Rural and urban differences in health care delivery remain a cause of concern in Switzerland.


Asunto(s)
Hospitalización/estadística & datos numéricos , Hospitales/provisión & distribución , Médicos/provisión & distribución , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Investigación sobre Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Indicadores de Calidad de la Atención de Salud , Estudios Retrospectivos , Servicios de Salud Rural/provisión & distribución , Análisis de Área Pequeña , Suiza
14.
J Neurol ; 261(10): 1894-901, 2014 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-25022937

RESUMEN

The objective of this study is to determine if quality of care, symptoms of depression, disease characteristics and quality of life of patients with amyotrophic lateral sclerosis (ALS) are related to requesting euthanasia or physician-assisted suicide (EAS) and dying due to EAS. Therefore, 102 ALS patients filled out structured questionnaires every 3 months until death and the results were correlated with EAS. Thirty-one percent of the patients requested EAS, 69% of whom eventually died as a result of EAS (22% of all patients). Ten percent died during continuous deep sedation; only one of them had explicitly requested death to be hastened. Of the patients who requested EAS, 86% considered the health care to be good or excellent, 16% felt depressed, 45% experienced loss of dignity and 42% feared choking. These percentages do not differ from the number of patients who did not explicitly request EAS. The frequency of consultations of professional caregivers and availability of appliances was similar in both groups. Our findings do not support continuous deep sedation being used as a substitute for EAS. In this prospective study, no evidence was found for a relation between EAS and the quality and quantity of care received, quality of life and symptoms of depression in patients with ALS. Our study does not support the notion that unmet palliative care needs are related to EAS.


Asunto(s)
Esclerosis Amiotrófica Lateral/psicología , Eutanasia/psicología , Suicidio Asistido/psicología , Adulto , Anciano , Anciano de 80 o más Años , Esclerosis Amiotrófica Lateral/complicaciones , Toma de Decisiones , Depresión/etiología , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Estudios Prospectivos , Calidad de Vida/psicología , Encuestas y Cuestionarios
15.
Int J Epidemiol ; 43(2): 614-22, 2014 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-24550250

RESUMEN

BACKGROUND: In Switzerland, assisted suicide is legal but there is concern that vulnerable or disadvantaged groups are more likely to die in this way than other people. We examined socio-economic factors associated with assisted suicide. METHODS: We linked the suicides assisted by right-to-die associations during 2003-08 to a census-based longitudinal study of the Swiss population. We used Cox and logistic regression models to examine associations with gender, age, marital status, education, religion, type of household, urbanization, neighbourhood socio-economic position and other variables. Separate analyses were done for younger (25 to 64 years) and older (65 to 94 years) people. RESULTS: Analyses were based on 5 004 403 Swiss residents and 1301 assisted suicides (439 in the younger and 862 in the older group). In 1093 (84.0%) assisted suicides, an underlying cause was recorded; cancer was the most common cause (508, 46.5%). In both age groups, assisted suicide was more likely in women than in men, those living alone compared with those living with others and in those with no religious affiliation compared with Protestants or Catholics. The rate was also higher in more educated people, in urban compared with rural areas and in neighbourhoods of higher socio-economic position. In older people, assisted suicide was more likely in the divorced compared with the married; in younger people, having children was associated with a lower rate. CONCLUSIONS: Assisted suicide in Switzerland was associated with female gender and situations that may indicate greater vulnerability such as living alone or being divorced, but also with higher education and higher socio-economic position.


Asunto(s)
Derecho a Morir , Suicidio Asistido/estadística & datos numéricos , Adulto , Anciano , Anciano de 80 o más Años , Causas de Muerte , Escolaridad , Femenino , Humanos , Estudios Longitudinales , Masculino , Estado Civil/estadística & datos numéricos , Persona de Mediana Edad , Religión , Distribución por Sexo , Suiza/epidemiología
16.
Med Care ; 51(10): 938-44, 2013 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-23929402

RESUMEN

BACKGROUND: Legal in some European countries and US states, physician-assisted suicide and voluntary active euthanasia remain under debate in these and other countries. OBJECTIVES: The aim of the study was to examine numbers, characteristics, and trends over time for assisted dying in regions where these practices are legal: Belgium, Luxembourg, the Netherlands, Switzerland, Oregon, Washington, and Montana. DESIGN: This was a systematic review of journal articles and official reports. Medline and Embase databases were searched for relevant studies, from inception to end of 2012. We searched the websites of the health authorities of all eligible countries and states for reports on physician-assisted suicide or euthanasia and included publications that reported on cases of physician-assisted suicide or euthanasia. We extracted information on the total number of assisted deaths, its proportion in relation to all deaths, and socio-demographic and clinical characteristics of individuals assisted to die. RESULTS: A total of 1043 publications were identified; 25 articles and reports were retained, including series of reported cases, physician surveys, and reviews of death certificates. The percentage of physician-assisted deaths among all deaths ranged from 0.1%-0.2% in the US states and Luxembourg to 1.8%-2.9% in the Netherlands. Percentages of cases reported to the authorities increased in most countries over time. The typical person who died with assistance was a well-educated male cancer patient, aged 60-85 years. CONCLUSIONS: Despite some common characteristics between countries, we found wide variation in the extent and specific characteristics of those who died an assisted death.


Asunto(s)
Eutanasia/estadística & datos numéricos , Eutanasia/tendencias , Suicidio Asistido/estadística & datos numéricos , Suicidio Asistido/tendencias , Adulto , Anciano , Anciano de 80 o más Años , Bélgica , Eutanasia/legislación & jurisprudencia , Femenino , Humanos , Luxemburgo , Masculino , Persona de Mediana Edad , Montana , Países Bajos , Oregon , Factores Sexuales , Suicidio Asistido/legislación & jurisprudencia , Encuestas y Cuestionarios , Suiza , Washingtón
17.
J Neurol ; 257(7): 1192-8, 2010 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-20148336

RESUMEN

In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09-0.46] and heart failure patients [OR 0.16, 95% CI 0.05-0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.


Asunto(s)
Esclerosis Amiotrófica Lateral/psicología , Eutanasia Activa Voluntaria/psicología , Insuficiencia Cardíaca/psicología , Neoplasias/psicología , Estrés Psicológico/psicología , Anciano , Esclerosis Amiotrófica Lateral/complicaciones , Esclerosis Amiotrófica Lateral/fisiopatología , Disnea/etiología , Disnea/fisiopatología , Disnea/psicología , Eutanasia Activa Voluntaria/estadística & datos numéricos , Eutanasia Activa Voluntaria/tendencias , Fatiga/etiología , Fatiga/fisiopatología , Fatiga/psicología , Miedo/psicología , Femenino , Insuficiencia Cardíaca/complicaciones , Insuficiencia Cardíaca/fisiopatología , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/complicaciones , Neoplasias/fisiopatología , Países Bajos , Dolor/etiología , Dolor/fisiopatología , Dolor/psicología , Cuidados Paliativos/psicología , Cuidados Paliativos/estadística & datos numéricos , Cuidados Paliativos/tendencias , Estrés Psicológico/etiología , Estrés Psicológico/fisiopatología , Encuestas y Cuestionarios
18.
Amyotroph Lateral Scler ; 8(2): 96-100, 2007 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-17453637

RESUMEN

The objective was to validate the Dutch translation of the 40-item and 5-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40, ALSAQ-5). Eighty-one ALS patients participated in this cross-sectional study. The measures used were the ALSAQ-40, the ALSAQ-5, MOS Short-Form-36 (SF-36) and Revised ALS Functional Rating Scale (ALSFRS-R). The Dutch ALSAQ-40 was sensitive to differences in disease severity (all scales Kruskal-Wallis, p<0.05), had no floor and few ceiling effects (Communication, Eating and Drinking scales), had excellent internal consistency reliability (all scales Cronbach's alpha >0.90, all item to subscale correlations above 0.40) and showed good construct validity as it correlated as expected with SF-36 and ALSFRS-R scores. The total and item scores of the ALSAQ-5 were strongly correlated with the corresponding total and subscale scores of the ALSAQ-40 (Spearman's rho >0.80). The ALSAQ-5 and ALSAQ-40 showed comparable correlations with the subscales of the SF-36 and the ALSFRS-R, except for Activities Daily Living and Independence (ADL). All other results of the Dutch ALSAQ-40 and ALSAQ-5 were comparable to those of the original UK questionnaires. It is concluded that the psychometric properties of the Dutch version of the ALSAQ-40 and the ALSAQ-5 are good and similar to those of the original English version.


Asunto(s)
Algoritmos , Esclerosis Amiotrófica Lateral/diagnóstico , Esclerosis Amiotrófica Lateral/epidemiología , Interpretación Estadística de Datos , Indicadores de Salud , Calidad de Vida , Encuestas y Cuestionarios , Actividades Cotidianas , Medicina Basada en la Evidencia/métodos , Femenino , Humanos , Funciones de Verosimilitud , Masculino , Persona de Mediana Edad , Países Bajos/epidemiología , Reproducibilidad de los Resultados , Tamaño de la Muestra , Sensibilidad y Especificidad
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