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1.
Int J Palliat Nurs ; 25(8): 398-405, 2019 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-31437110

RESUMO

BACKGROUND: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process. AIMS: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity. METHODS: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests. FINDINGS: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated. CONCLUSION: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death.


Assuntos
Atitude Frente a Morte , Família/psicologia , Pesar , Sobreviventes/psicologia , Adulto , Idoso , Canadá , Feminino , Amigos/psicologia , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Inquéritos e Questionários , Adulto Jovem
2.
Palliat Med ; 32(7): 1233-1245, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29737245

RESUMO

BACKGROUND: Volunteers fulfil several roles in supporting terminally ill people and their relatives and can positively influence quality of care. Healthcare in many countries faces resource constraints and some governments now expect communities to provide an increasing proportion of palliative care. However, systematic insights into volunteer presence, tasks and training and organisational challenges for volunteerism are lacking. AIM: Describe organised volunteerism in palliative direct patient care across the Flemish healthcare system (Belgium). DESIGN: A cross-sectional postal survey using a self-developed questionnaire was conducted with 342 healthcare organisations. SETTING/PARTICIPANTS: The study included full population samples of palliative care units, palliative day-care centres, palliative home care teams, medical oncology departments, sitting services, community home care services and a random sample of nursing homes. RESULTS: Responses were obtained for 254 (79%) organisations; 80% have volunteers providing direct patient care. Psychosocial, signalling and existential care tasks were the most prevalent volunteer tasks. The most cited organisational barriers were finding suitable (84%) and new (80%) volunteers; 33% of organisations offered obligatory training (75% dedicated palliative care, 12% nursing homes). Differences in volunteer use were associated with training needs and prevalence of organisational barriers. CONCLUSION: Results suggest potential for larger volunteer contingents. The necessity of volunteer support and training and organisational coordination of recruitment efforts is emphasised. Organisations are encouraged to invest in adequate volunteer support and training. The potential of shared frameworks for recruitment and training of volunteers is discussed. Future research should study volunteerism at the volunteer level to contrast with organisational data.


Assuntos
Cuidados Paliativos/métodos , Assistência Terminal/métodos , Voluntários , Adulto , Análise de Variância , Bélgica , Estudos Transversais , Feminino , Serviços de Assistência Domiciliar/estatística & dados numéricos , Humanos , Capacitação em Serviço/normas , Casas de Saúde/estatística & dados numéricos , Qualidade de Vida , Voluntários/educação
3.
Patient Educ Couns ; 101(8): 1378-1384, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29550293

RESUMO

OBJECTIVE: Deaths from chronic illness are often preceded by a potentially life-shortening end-of-life decision (ELD). Involving family in these ELDs may have psychosocial benefits for them and the dying person. This study aims to examine how often ELDs are discussed with relatives of the dying person and which characteristics determine their involvement in those ELDs. METHODS: A questionnaire survey was conducted in 2013 among physicians attending a large, stratified and representative sample of deaths (n = 6188) in Flanders. RESULTS: In 72.3% of ELDs preceding death, family of the dying person were involved. Discussion of an ELD with family members was more likely when the decision was also discussed with the dying person, the ELD was made with the explicit intention to shorten life, specialized palliative care was provided or death occurred in an ICU. CONCLUSIONS: Involving family in end-of-life decision making appears to be related to the type of formal care services involved, communication with the dying person and the motives behind the decision. PRACTICE IMPLICATIONS: Our findings suggest a need to further expand a palliative care approach with a focus on both the dying person and their family within and across a variety of health care services.


Assuntos
Tomada de Decisões , Padrões de Prática Médica/estatística & dados numéricos , Relações Profissional-Família , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
4.
Br J Cancer ; 118(10): 1369-1376, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29593337

RESUMO

BACKGROUND: The treatment of advanced cancer often involves potentially life-shortening end-of-life decisions (ELDs). This study aimed to examine the prevalence and characteristics of ELDs in different cancer types. METHODS: A nationwide death certificate study was conducted based on a large random sample of all deaths in Flanders, Belgium, between 1 January and 30 June 2013. All cancer deaths were selected (n = 2392). Attending physicians were sent a questionnaire about ELDs and the preceding decision-making process. RESULTS: The response rate was 58.3%. Across cancer types, a non-treatment decision occurred in 7.6-14.0%, intensified pain and symptom alleviation in 37.5-41.7%, euthanasia or physician-assisted suicide in 8.7-12.6%, and life shortening without explicit patient request in 1.0-2.4%. ELD prevalence did not differ significantly by cancer type. Reasons for ELDs were most frequently patient's physical suffering and lack of prospect of improvement. 'Anticipated further suffering' and 'unbearable situation for relatives' were reasons more often reported in haematological cancer than in other cancer types. Patient, family, and caregiver involvement in decision-making did not differ across cancer types. CONCLUSIONS: Euthanasia or physician-assisted suicide rates were relatively high in all cancer types. Neither the prevalence of ELDs nor characteristics of the decision-making process differed substantially between cancer types. This indicates a uniform approach to end-of-life care, including palliative care, across oncological settings.


Assuntos
Eutanásia/psicologia , Neoplasias/mortalidade , Suicídio Assistido/psicologia , Bélgica/epidemiologia , Tomada de Decisão Clínica/ética , Eutanásia/ética , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/classificação , Neoplasias/psicologia , Suicídio Assistido/ética , Inquéritos e Questionários , Assistência Terminal
5.
BMC Infect Dis ; 18(1): 55, 2018 01 25.
Artigo em Inglês | MEDLINE | ID: mdl-29370765

RESUMO

BACKGROUND: With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death. METHODS: In this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased's demographic characteristics, place of death, healthcare supply. RESULTS: i) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in the Netherlands to 90.9% in South Korea. The least common places were hospice facility (3.3%-5.7%), nursing home (0%-17.6%) and home (5.9%-26.3%).iii) Age-standardised relative risks found those with HIV less likely to die at home and more likely to die in hospital compared with cancer patients, and in most countries more likely to die in a nursing home. iv) Multivariate analysis found that men were more likely to die at home in UK, Canada, USA and Mexico; a greater number of hospital beds reduced the likelihood of dying at home in Italy and Mexico; a higher number of GPs was associated with home death in Italy and Mexico. CONCLUSIONS: With increasing comorbidity among people ageing with HIV, it is essential that end-of-life preferences are established and met. Differences in place of death according to country and diagnosis demonstrate the importance of ensuring a "good death" for people with HIV, alongside efforts to optimise treatment.


Assuntos
Atestado de Óbito , Infecções por HIV/mortalidade , Canadá/epidemiologia , Feminino , Hospitais/estatística & dados numéricos , Humanos , Itália/epidemiologia , Masculino , México/epidemiologia , Países Baixos/epidemiologia , Casas de Saúde/estatística & dados numéricos , República da Coreia/epidemiologia , Estudos Retrospectivos , Suécia/epidemiologia , Assistência Terminal
6.
Death Stud ; 42(7): 463-469, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-28985143

RESUMO

Information is needed on the incidence and prevalence of bereavement grief, and factors associated with severe or prolonged grief. Among 1,208 representative Canadian adults, 96% had experienced bereavement grief and 78% were actively grieving at interview. Grief levels were higher among women, Protestants, and Catholics, when the death was under 2 years previously, when a spouse, parent, or child had died, and when the perceived death quality was lower. This study reveals the importance of good deaths; they are essential for dying people and also those who mourn their deaths.


Assuntos
Atitude Frente a Morte , Família/psicologia , Pesar , Religião e Psicologia , Adulto , Canadá/epidemiologia , Feminino , Humanos , Masculino , Fatores Sexuais
7.
Lancet Oncol ; 18(9): e543-e551, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-28884703

RESUMO

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.


Assuntos
Planejamento Antecipado de Cuidados , Cuidados Paliativos , Atitude do Pessoal de Saúde , Consenso , Técnica Delphi , Humanos
8.
Palliat Med ; 31(10): 932-945, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28429629

RESUMO

BACKGROUND: A substantial amount of aggressive life-prolonging treatments in the final stages of life has been reported for people with progressive life-shortening conditions. Monitoring appropriate and inappropriate end-of-life care is an important public health challenge and requires validated quality indicators. AIM: To develop indicators of appropriate and inappropriate end-of-life care for people with cancer, chronic obstructive pulmonary disease or Alzheimer's disease, measurable with population-level administrative data. DESIGN: modified RAND/UCLA appropriateness method. SETTING/PARTICIPANTS: Potential indicators were identified by literature review and expert interviews and scored in a survey among three panels of experts (one for each disease group). Indicators for which no consensus was reached were taken into group discussions. Indicators with consensus among the experts were retained for the final quality indicator sets. RESULTS: The final sets consist of 28 quality indicators for Alzheimer's disease, 26 quality indicators for cancer and 27 quality indicators for chronic obstructive pulmonary disease. The indicator sets measure aspects of aggressiveness of care, pain and symptom treatment, specialist palliative care, place of care and place of death and coordination and continuity of care. CONCLUSION: We developed a comprehensive set of quality indicators of appropriate and inappropriate end-of-life care in people with Alzheimer's disease, cancer or chronic obstructive pulmonary disease, to be used in population-level research. Our focus on administrative healthcare databases limits us to treatment and medication, excluding other important quality aspects such as communication, which can be monitored using complementary approaches. Nevertheless, our sets will enable an efficient comparison of healthcare providers, regions and countries in terms of their performance on appropriateness of end-of-life care.


Assuntos
Doença de Alzheimer/terapia , Neoplasias/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Indicadores de Qualidade em Assistência à Saúde , Qualidade da Assistência à Saúde/normas , Assistência Terminal/normas , Atitude do Pessoal de Saúde , Humanos , Cuidados Paliativos/normas
9.
NPJ Prim Care Respir Med ; 27(1): 14, 2017 03 03.
Artigo em Inglês | MEDLINE | ID: mdl-28258277

RESUMO

Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information. We included patients dying from lung cancer or chronic obstructive pulmonary disease and used descriptive statistics and multivariable logistic regressions to describe patterns in place of death. Of 5,568,827 deaths, 5.8% were from lung cancer and 4.4% from chronic obstructive pulmonary disease. Among lung cancer decedents, home deaths ranged from 12.5% in South Korea to 57.1% in Mexico, while hospital deaths ranged from 27.5% in New Zealand to 77.4% in France. In chronic obstructive pulmonary disease patients, the proportion dying at home ranged from 10.4% in Canada to 55.4% in Mexico, while hospital deaths ranged from 41.8% in Mexico to 78.9% in South Korea. Controlling for age, sex, and marital status, patients with chronic obstructive pulmonary disease were significantly less likely die at home rather than in hospital in nine countries. Our study found in almost all countries that those dying from chronic obstructive pulmonary disease as compared with those from lung cancer are less likely to die at home and at a palliative care institution and more likely to die in a hospital or a nursing home. This might be due to less predictable disease trajectories and prognosis of death in chronic obstructive pulmonary disease. LUNG DISEASE: IMPROVING END-OF-LIFE CARE: Structured palliative care similar to that offered to cancer sufferers should be in place for patients with chronic lung disease. Joachim Cohen at Vrije University in Brussels and co-workers examined international death certificate data collected from 14 countries to determine place of death for patients with lung cancer and chronic obstructive pulmonary disease (COPD). While patients with COPD suffer similar symptoms to lung cancer in their final days, few COPD patients receive palliative care or achieve the common wish of dying at home. This may be partly due to the inherent unpredictability of final-stage COPD compared with lung cancer. Cohen's team found that, with the exception of Italy, Spain, and Mexico, patients with COPD were significantly more likely to die in hospital than at home. They highlight the need for improved COPD palliative care provision.


Assuntos
Morte , Serviços de Assistência Domiciliar/estatística & dados numéricos , Hospitais para Doentes Terminais , Hospitalização/estatística & dados numéricos , Hospitais , Neoplasias Pulmonares , Doença Pulmonar Obstrutiva Crônica , Assistência Terminal/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Atestado de Óbito , Europa (Continente) , Feminino , Humanos , Modelos Logísticos , Masculino , Estado Civil , Pessoa de Meia-Idade , Análise Multivariada , Nova Zelândia , América do Norte , Cuidados Paliativos , República da Coreia , Adulto Jovem
10.
Eur J Pediatr ; 176(3): 327-335, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28070671

RESUMO

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.


Assuntos
Doença Crônica/mortalidade , Morte , Características de Residência , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Adolescente , Canadá , Causas de Morte , Criança , Pré-Escolar , Comparação Transcultural , Atestado de Óbito , Europa (Continente) , Feminino , Mortalidade Hospitalar , Humanos , Lactente , Modelos Logísticos , Masculino , México , Nova Zelândia , Razão de Chances , República da Coreia , Distribuição por Sexo , Estados Unidos
11.
Palliat Med ; 31(5): 456-464, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-27407016

RESUMO

BACKGROUND: Although the acute hospital setting is not considered to be an ideal place of death, many people are admitted to hospital at the end of life. AIM: To examine what proportion of terminal hospital admissions among their patients family physicians consider to have been avoidable and/or inappropriate; which patient, family physician and admission factors are associated with the perceived inappropriateness or avoidability of terminal hospital admissions; and which interventions could have prevented them, from the perspective of family physicians. DESIGN: Survey among family physicians, linked to medical record data. SETTING: Patients who had died non-suddenly in the acute hospital setting of a university hospital in Belgium between January and August 2014. RESULTS: We received 245 completed questionnaires (response rate 70%) and 77% of those hospital deaths ( n = 189) were considered to be non-sudden. Almost 14% of all terminal hospital admissions were considered to be potentially inappropriate, almost 14% potentially avoidable and 8% both, according to family physicians. The terminal hospital admission was more likely to be considered potentially inappropriate or potentially avoidable for patients who had died of cancer, when the patient's life expectancy at the time of admission was limited, by family physicians who had had palliative care training at basic, postgraduate or post-academic level, and when the admission was initiated by the patient, partner or other family. CONCLUSION: Timely communication with the patient about their limited life expectancy and the provision of better support to family caregivers may be important strategies in reducing the number of hospital deaths.


Assuntos
Mortalidade Hospitalar , Hospitalização/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Admissão do Paciente/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Bélgica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Médicos de Família , Inquéritos e Questionários
12.
Palliat Med ; 31(6): 526-536, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27683475

RESUMO

BACKGROUND: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed. AIM: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries. DESIGN: This is a cross-sectional study using death certificate data. SETTING/PARTICIPANTS: All adults (⩾18 years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand ( N = 4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively. RESULTS: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs. CONCLUSION: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.


Assuntos
Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Curva ROC , Assistência Terminal/estatística & dados numéricos , Adulto Jovem
13.
BMC Palliat Care ; 15(1): 86, 2016 Oct 18.
Artigo em Inglês | MEDLINE | ID: mdl-27756296

RESUMO

BACKGROUND: The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases. METHODS: Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies. For all relevant databases, we followed procedures in cooperation with database administrators to link the databases and to access the data. RESULTS: We identified several databases as fitting for end-of-life care research in Belgium: the InterMutualistic Agency's national registry of health care claims data, the Belgian Cancer Registry including data on incidence of cancer, and databases administrated by Statistics Belgium including data from the death certificate database, the socio-economic survey and fiscal data. To obtain access to the data, approval was required from all database administrators, supervisory bodies and two separate national privacy bodies. Two Trusted Third Parties linked the databases via a deterministic matching procedure using multiple encrypted social security numbers. CONCLUSION: In this article we describe how various routinely collected population-level databases and disease registries can be accessed and linked to study patterns in the use, quality and costs of end-of-life care in the full population and in specific diagnostic groups.


Assuntos
Armazenamento e Recuperação da Informação/métodos , Qualidade da Assistência à Saúde , Sistema de Registros , Assistência Terminal/estatística & dados numéricos , Doença de Alzheimer/economia , Doença de Alzheimer/terapia , Bélgica , Bases de Dados Factuais , Custos de Cuidados de Saúde , Humanos , Neoplasias/economia , Neoplasias/terapia , Doença Pulmonar Obstrutiva Crônica/economia , Doença Pulmonar Obstrutiva Crônica/terapia , Assistência Terminal/economia
14.
J Pain Symptom Manage ; 52(4): 498-506, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27401513

RESUMO

CONTEXT: Although the acute hospital setting is not considered to be an ideal place of death, many people are admitted to hospital at the end of life. OBJECTIVES: The present study aims to examine the reasons for hospital admissions that result in an expected death and the factors that play a role in the decision to admit to hospital. METHODS: This was a survey among family physicians (FPs) about those of their patients who had died nonsuddenly in an acute university hospital setting in Belgium between January and August 2014. Questions were asked about the patient's health situation, care that the patient received before the admission, the circumstances of the hospital admission, the reasons necessitating the admission, and other factors that had played a role in the decision to admit the patient to hospital. RESULTS: We received 245 completed questionnaires (response rate 70%), and 77% of those hospital deaths were considered to be nonsudden. FPs indicated that 55% of end-of-life hospitalizations were for palliative reasons and 26% curative or life-prolonging. Factors such as the patient feeling safer in hospital (35%) or family believing care to be better in hospital (54%) frequently played a role in the end-of-life hospitalization. When patients were admitted with a limited anticipated life expectancy, FPs were more likely to indicate that an inadequate caring capacity of the care setting had played a role in the admission. CONCLUSION: To reduce the number of hospital deaths, a combination of structural support for out-of-hospital end-of-life care and a more timely referral to out-of-hospital palliative care services may be needed.


Assuntos
Admissão do Paciente , Assistência Terminal , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Preferência do Paciente , Médicos de Família , Inquéritos e Questionários
15.
BMC Cancer ; 16: 264, 2016 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-27059593

RESUMO

BACKGROUND: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life. METHODS/DESIGN: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators. DISCUSSION: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number: ISRCTN63110516. Date of registration: 10/3/2014.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias Colorretais/terapia , Neoplasias Pulmonares/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/epidemiologia , Neoplasias Colorretais/patologia , Comunicação , Tomada de Decisões , Feminino , Pessoal de Saúde , Humanos , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/patologia , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente , Qualidade de Vida , Inquéritos e Questionários , Assistência Terminal
16.
PLoS One ; 11(4): e0153747, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27096846

RESUMO

OBJECTIVES: To explore how GPs conceptualise advance care planning (ACP), based on their experiences with ACP in their practice. METHODS: Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method. RESULTS: Four overarching themes in the conceptualisations of ACP were discerned: (1) the organisation of professional care required to meet patients' needs, (2) the process of preparing for death and discussing palliative care options, (3) the discussion of care goals and treatment decisions, (4) the completion of advance directives. Within these themes, ACP was both conceptualised in terms of content of ACP and/or in terms of tasks for the GP. A specific task that was mentioned throughout the discussion of the four different themes was (5) the task of actively initiating ACP by the GP versus passively waiting for patients' initiation. CONCLUSIONS: This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. A shared conceptualisation and agreement on the purpose and goals of ACP is needed to ensure successful implementation, as well as a systematic integration of ACP in routine practice that could lead to a better uptake of all the important elements of ACP.


Assuntos
Planejamento Antecipado de Cuidados , Clínicos Gerais , Adulto , Planejamento Antecipado de Cuidados/organização & administração , Idoso , Feminino , Grupos Focais , Clínicos Gerais/organização & administração , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/organização & administração , Relações Médico-Paciente , Pesquisa Qualitativa
17.
BMC Palliat Care ; 15: 17, 2016 Feb 11.
Artigo em Inglês | MEDLINE | ID: mdl-26868650

RESUMO

BACKGROUND: Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice. METHODS: We conducted a Phase 0-I study according to the Medical Research Council (MRC) Framework. Phase 0 consisted of a systematic literature review about the barriers and facilitators for GPs to engage in ACP, focus groups with GPs were held about their experiences, attitudes and concerns regarding initiating ACP in general practice and a review of ACP interventions to identify potential components for the development of our intervention. In Phase 1, we developed a complex intervention to support the initiation of ACP in general practice in patients at risk of deteriorating or dying, based on the results of Phase 0. The complex intervention and its components were reviewed and refined by two expert panels. RESULTS: Phase 0 resulted in the identification of the factors inhibiting or enabling GPs' initiation of ACP and important components underpinning existing ACP interventions. Based on these findings, an intervention was developed in Phase 1 consisting of: (1) a training for GPs in initiating and conducting ACP discussions, (2) a register of patients eligible for ACP discussions, (3) an educational booklet on ACP for patients to prepare the ACP discussions that includes general information on ACP, a section on the role of GPs in the process of ACP and a prompt list, (4) a conversation guide to support GPs in the ACP discussions and (5) a structured documentation template to record the outcomes of discussions. CONCLUSION: Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study.


Assuntos
Planejamento Antecipado de Cuidados/estatística & dados numéricos , Comunicação , Intervenção Médica Precoce/métodos , Clínicos Gerais , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/normas , Adulto , Idoso , Atitude do Pessoal de Saúde , Intervenção Médica Precoce/estatística & dados numéricos , Grupos Focais , Humanos , Pessoa de Meia-Idade , Relações Médico-Paciente , Medição de Risco
18.
Soc Psychiatry Psychiatr Epidemiol ; 51(1): 101-6, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26577917

RESUMO

PURPOSE: The places of death for people who died of suicide were compared across eight countries and socio-demographic factors associated with home suicide deaths identified. METHODS: Death certificate data were analyzed; using multivariable binary logistic regression to determine associations. RESULTS: National suicide death rates ranged from 1.4 % (Mexico) to 6.4 % (South Korea). The proportion of suicide deaths occurring at home was high, ranging from 29.9 % (South Korea) to 65.8 % (Belgium). Being older, female, widowed/separated, highly educated and living in an urban area were risk factors for home suicide. CONCLUSIONS: Home suicide deaths need specific attention in prevention programs.


Assuntos
Atestado de Óbito , Saúde Global/estatística & dados numéricos , Suicídio/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Causas de Morte , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Adulto Jovem
19.
J Epidemiol Community Health ; 70(1): 17-24, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26202254

RESUMO

BACKGROUND: Studying where people die across countries can serve as an evidence base for health policy on end-of-life care. This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries, the association of place of death with cause of death, sociodemographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death. METHODS: Death certificate data for all deaths in 2008 (age ≥1 year) in Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the USA and Wales caused by cancer, heart/renal/liver failure, chronic obstructive pulmonary disease, diseases of the nervous system or HIV/AIDS were linked with national or regional healthcare statistics (N=2,220,997). RESULTS: 13% (Canada) to 53% (Mexico) of people died at home and 25% (the Netherlands) to 85% (South Korea) died in hospital. The strength and direction of associations between home death and cause of death, sociodemographic and healthcare availability factors differed between countries. Differences between countries in home versus hospital death were only partly explained by differences in these factors. CONCLUSIONS: The large differences between countries in and beyond Europe in the place of death of people in potential need of palliative care are not entirely attributable to sociodemographic characteristics, cause of death or availability of healthcare resources, which suggests that countries' palliative and end-of-life care policies may influence where people die.


Assuntos
Morte , Necessidades e Demandas de Serviços de Saúde , Cuidados Paliativos , Características de Residência , Doente Terminal , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Causas de Morte/tendências , Criança , Pré-Escolar , Atestado de Óbito , Feminino , Humanos , Lactente , Internacionalidade , Masculino , Pessoa de Meia-Idade , Adulto Jovem
20.
BMC Palliat Care ; 14: 71, 2015 Dec 07.
Artigo em Inglês | MEDLINE | ID: mdl-26643482

RESUMO

BACKGROUND: To determine the extent to which members of the general population have talked to their physician about their wishes regarding medical treatment at the end of life, to describe the prevalence of advance directives on euthanasia, and to identify associated factors. METHOD: This study used data from the cross-sectional Health Interview Study (HIS) 2008 that collected data from a representative sample (N = 9651) of the Belgian population. RESULTS: Of all respondents, 4.4 % had spoken to their physician about their wishes regarding medical treatment at the end of life, while 1.8 % had an advance directive on euthanasia. Factors positively associated with discussions regarding wishes for medical treatment at the end of life were being female, being older in age, having poorer health status and having more GP contacts. People older than 55 years and living in Flanders or Brussels were more likely than the youngest age categories to have an advance directive on euthanasia. CONCLUSION: Younger people, men, people living in the Walloon region of Belgium, people without a longstanding illness, chronic condition or disability and people with few GP contacts could represent a target group for education regarding advance care planning. Public information campaigns and education of physicians may help to enable the public and physicians to engage more in advance care planning.


Assuntos
Diretivas Antecipadas/estatística & dados numéricos , Tomada de Decisões , Eutanásia/estatística & dados numéricos , Prevalência , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Bélgica , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
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