RESUMO
BACKGROUND: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care. METHODS: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners). RESULTS: Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence. CONCLUSION: No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.
Assuntos
Planejamento Antecipado de Cuidados/tendências , Demência/terapia , Diretrizes para o Planejamento em Saúde , Tomada de Decisões , Demência/psicologia , Prática Clínica Baseada em Evidências/métodos , Humanos , Cuidados Paliativos/métodos , Inquéritos e QuestionáriosRESUMO
AIM: To describe and compare end-of-life care for people with mild or severe dementia in general practice in Belgium, Italy and Spain, in terms of place of care, place of death, treatment aims, use of specialized palliative care and communication with general practitioners (GPs). METHODS: Cross-sectional retrospective survey was carried out of nationwide networks of GPs in Belgium, Italy and Spain, including patients who died aged 65 years or older in 2009-2011 and were judged by the GP to have had dementia (n = 1623). RESULTS: GPs reported a higher proportion of older people with severe dementia in Belgium (55%) than in Spain (46 %) and Italy (45 %), and a higher proportion of patients living in care homes (57% vs 18% and 13%, respectively). A palliative treatment aim was common in the last 3 months of life in all three countries. Specialized palliative care services were provided in 14% (Italy, severe dementia) to 38% (Belgium, severe dementia) of cases. Communication between GP and patient about illness-related topics occurred in between 50% (Italy) and 72% (Belgium) of cases of mild dementia, and 10% (Italy) to 32% (Belgium) of cases of severe dementia. Patient preferences for end-of-life care were known in a minority of cases. Few people (13-15 %) were transferred between care settings in the last week of life. CONCLUSIONS: Although overall treatment aims at the end of life are often aligned with a palliative care approach and transfer rates are low, there is room for improvement in end-of-life care for people with dementia in all countries studied, especially regarding early patient-GP communication. Geriatr Gerontol Int 2017; 17: 1667-1676.
Assuntos
Demência/psicologia , Demência/terapia , Medicina Geral , Cuidados Paliativos , Assistência Terminal , Idoso , Idoso de 80 Anos ou mais , Bélgica , Comunicação , Estudos Transversais , Demência/mortalidade , Feminino , Humanos , Itália , Masculino , Preferência do Paciente , Estudos Retrospectivos , EspanhaRESUMO
BACKGROUND: Research on the costs of healthcare provision has so far focused on insurer costs rather than out-of-pocket costs. Out-of-pocket costs may be important to patients making medical decisions. AIM: To investigate the self-reported out-of-pocket costs associated with healthcare in the last year of life of older adults in Europe. DESIGN: A post-death survey, part of the Survey of Health, Ageing, and Retirement in Europe, completed by proxy respondents in four waves from 2005 to 2012. SETTING/PARTICIPANTS: Proxy respondents for 2501 deceased adults of 55 years or over. Data from 13 European countries and four waves from 2005 to 2012 were used. RESULTS: The proportion of people with out-of-pocket costs ranged from 21% to 96% in different European Union countries. Out-of-pocket costs ranged from 2% to 25% of median household income. Secondary and institutional care was most often the largest contributor to out-of-pocket costs, with care received in a care home being the most expensive type of care in 11 of 13 countries. Multilevel analyses showed that limitations in more than two activities of daily living (coefficient = 6.47, 95% confidence interval = 1.81-11.14) and a total hospitalization time of 3-6 months (coefficient = 14.66; 95% confidence interval = 0.97-28.35) or more than 6 months (coefficient = 31.01; 95% confidence interval = 11.98-50.15) were associated with higher out-of-pocket costs. In total, 24% of the variance on a country level remained unexplained. CONCLUSION: Variation in out-of-pocket costs for healthcare in the last year of life between European countries indicates that countries face different challenges in making healthcare in the last year of life affordable for all.
Assuntos
Efeitos Psicossociais da Doença , Financiamento Pessoal/estatística & dados numéricos , Gastos em Saúde/estatística & dados numéricos , Assistência Terminal/economia , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Europa (Continente) , Feminino , Hospitalização/economia , Humanos , Masculino , Pessoa de Meia-Idade , Instituições Residenciais/economiaRESUMO
BACKGROUND: With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collaboration and integration between palliative care and geriatric medicine from a European perspective. METHODS: Four semi-structured group interviews were undertaken with 32 participants from 18 countries worldwide. Participants were both clinicians (geriatricians, GPs, palliative care specialists) and academic researchers. The interviews were transcribed and independent analyses performed by two researchers who then reached consensus. RESULTS: Limited knowledge and understanding of what the other discipline offers, a lack of common practice and a lack of communication between disciplines and settings were considered as barriers for collaboration between palliative care and geriatric medicine. Multidisciplinary team working, integration, strong leadership and recognition of both disciplines as specialties were considered as facilitators of collaborative working. Whilst there are instances of close clinical working between disciplines, examples of strategic collaboration in education and policy were more limited. CONCLUSIONS: Improving knowledge about its principles and acquainting basic palliative care skills appears mandatory for geriatricians and other health care professionals. In addition, establishing more academic chairs is seen as a priority in order to develop more education and development at the intersection of palliative care and geriatric medicine.
Assuntos
Serviços de Saúde para Idosos , Comunicação Interdisciplinar , Cuidados Paliativos , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Comportamento Cooperativo , Europa (Continente)/epidemiologia , Feminino , Geriatria , Necessidades e Demandas de Serviços de Saúde , Serviços de Saúde para Idosos/organização & administração , Serviços de Saúde para Idosos/normas , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/organização & administração , Cuidados Paliativos/normas , Guias de Prática Clínica como Assunto , Pesquisa QualitativaRESUMO
OBJECTIVES: To give insight into Dutch nursing staff's attitudes and involvement regarding euthanasia. METHODS: The sample was recruited from a nation-wide existent research panel of registered nurses and certified nursing assistants. Descriptive analyses and multivariate logistic regression analyses were performed. RESULTS: 587 respondents (response of 65%) completed the questionnaire. The majority (83%) state that physicians have to discuss the decision about euthanasia with the nurses involved. Besides, 69% state that a physician should discuss a euthanasia request with nurses who have regular contact with a patient. Nursing staff who have religious or other beliefs that they consider important for their attitude towards end-of-life decisions, and staff working in a hospital or home care, are most likely to have this opinion. Being present during the euthanasia is quite unusual: only a small group (7%) report that this has ever been the case in their entire working life. Seven% (incorrectly) think they are allowed to administer the lethal drugs. CONCLUSION: The majority want to be involved in decision-making processes about euthanasia. Not all are aware that they are not legally allowed to administer the lethal drugs. PRACTICE IMPLICATIONS: Nursing staff should be informed of relevant existing legislation and professional guidelines.
Assuntos
Atitude do Pessoal de Saúde , Tomada de Decisões , Eutanásia Ativa/psicologia , Papel do Profissional de Enfermagem/psicologia , Enfermeiras e Enfermeiros/psicologia , Recursos Humanos de Enfermagem/psicologia , Adulto , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Relações Médico-Enfermeiro , Inquéritos e Questionários , Assistência TerminalRESUMO
CONTEXT: Although dying peacefully is considered an important outcome of high-quality palliative care, large-scale quantitative research on dying peacefully and the factors associated with a peaceful death is lacking. OBJECTIVES: To gain insight into how many residents with dementia in long-term care facilities die peacefully, according to their relatives, and whether that assessment is correlated with observed physical and psychological distress. METHODS: This was a retrospective cross-sectional study of deceased nursing home residents in a representative sample of long-term care facilities in Flanders, Belgium (2010). Structured post-mortem questionnaires were completed by relatives of the resident, who were asked to what extent they agreed that the resident "appeared to be at peace" during the dying process. Spearman correlation coefficients gave the correlations between physical and psychological distress (as measured using the Symptom Management at the End of Life with Dementia and Comfort Assessment in Dying at the End of Life with Dementia scales) and dying peacefully (as measured using the Quality of Dying in Long Term Care instrument). RESULTS: The sample comprised 92 relatives of deceased residents with dementia. In 54% of cases, relatives indicated that the resident died peacefully. Weak-to-moderate correlations (0.2-0.57) were found between dying peacefully and physical distress in the last week of life. Regarding psychological distress, weak-to-moderate correlations were found for both the last week (0.33-0.44) and last month of life (0.28-0.47). CONCLUSION: Only half of the residents with dementia died peacefully as perceived by their relatives. Relatives' assessment of whether death was peaceful is related to both physical and psychological distress. Further qualitative research is recommended to gain more in-depth insights into the aspects on which relatives base their judgment of dying peacefully.
Assuntos
Morte , Demência/fisiopatologia , Demência/terapia , Casas de Saúde , Estresse Psicológico/fisiopatologia , Idoso de 80 Anos ou mais , Bélgica/epidemiologia , Estudos Transversais , Demência/mortalidade , Demência/psicologia , Família/psicologia , Feminino , Humanos , Julgamento , Assistência de Longa Duração , Masculino , Pessoa de Meia-Idade , Casas de Saúde/estatística & dados numéricos , Percepção , Qualidade de Vida , Estudos Retrospectivos , Estresse Psicológico/mortalidade , Estresse Psicológico/terapiaRESUMO
BACKGROUND: High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. AIM: To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness. DESIGN: Post-death study using random cluster sampling. SETTING/PARTICIPANTS: Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010). RESULTS: Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94). CONCLUSION: Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents.
Assuntos
Conscientização , Cuidadores/psicologia , Demência/mortalidade , Demência/enfermagem , Casas de Saúde , Bélgica/epidemiologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
AIMS: To investigate how often nursing staff perceive caring for nursing home residents with dementia at the end of life as an emotional and/or physical burden, and to identify associated factors. DESIGN: Postdeath study conducted in 2010 in Flanders, Belgium. Nursing homes were selected through random clustersampling. METHODS: All residents who died with dementia in a three-month period were identified, and a structured questionnaire was completed by the nurse mostly involved. Nursing staff were asked to indicate how they perceived burden of caregiving for this resident on 10-point scale. RESULTS: Sixty-nine out of 120 nursing homes (response rate 58%) participated in the study. In 37% and 32% of cases, respectively, the nursing staff reported that they perceived themselves as experiencing a high emotional and physical burden. In cases where the resident had capacity for medical decision making during the last week of life and where the nurse had spoken with a relative about wishes for medical end-of-life treatments, they were more likely to report an emotional burden. A physical burden was more likely to be reported where the resident had decubitus ulcers or had developed pneumonia. CONCLUSION: In one-third of cases, nursing staff experienced a high emotional and/or physical burden. While experiencing a physical burden seems to be related to the poorer clinical status of the resident, an emotional burden was more likely to be related to greater and closer contact with the resident or a relative and to the nurse being involved in the process of care and decision making in the last phase of life. IMPLICATIONS FOR PRACTICE: This study highlights the need to support nursing home staff in providing compassionate end-of-life care for people with dementia and suggests that both the physical and emotional burdens in staff should be monitored regularly to achieve optimal working.
Assuntos
Demência/enfermagem , Enfermagem Geriátrica , Casas de Saúde , Recursos Humanos de Enfermagem/psicologia , Assistência Terminal , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Atitude Frente a Morte , Bélgica , Estudos Transversais , Feminino , Humanos , Masculino , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To investigate nursing staff attitudes towards involvement and role in end-of-life decisions (ELDs) and the relationships with sociodemographic and work-related characteristics. METHODS: Survey study among nationally representative Dutch research sample consisting of care professionals. Nursing staff working in hospitals, home care, nursing homes or homes for the elderly were sent ELD-questionnaire. RESPONSE: 66% (n=587). Most respondents had been involved in ELD. Three quarters wanted to be involved in whole ELD process; 58% agreed that decisions to withhold/withdraw treatment ought to be discussed with the nurses involved; 64% believed patients would talk rather to nurses than physicians; 72% thought physicians are usually prepared to listen to nurses' opinions. Hospital and highly educated nursing staff indicated relatively more often that they want to be involved in ELD. CONCLUSION: Majority of nursing staff want to be involved in ELD. Work setting and educational level are determining factors in attitudes of nursing staff regarding involvement in ELD. PRACTICE IMPLICATIONS: Awareness on the important role nurses have and want to have in ELD should be raised, and taken into account in trainings on end-of-life care for nurses and physicians and development of guidelines for communication about ELD between patients, nursing staff and physicians.
Assuntos
Atitude do Pessoal de Saúde , Tomada de Decisões , Papel do Profissional de Enfermagem , Recursos Humanos de Enfermagem/psicologia , Assistência Terminal , Adulto , Idoso , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Relações Enfermeiro-Paciente/ética , Religião , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. RESULTS: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.
Assuntos
Acessibilidade aos Serviços de Saúde , Opinião Pública , Melhoria de Qualidade , Assistência Terminal , Adolescente , Adulto , Idoso , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Assistência Terminal/normas , Adulto JovemRESUMO
BACKGROUND: Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care. OBJECTIVES: To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services. DESIGN: Survey questionnaire study conducted in the Netherlands. SETTINGS: Intellectual disability care services. PARTICIPANTS: The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire. METHODS: Postal survey addressing education, views and needs regarding end-of-life care. RESULTS: The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities. CONCLUSIONS: This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care grows, organizations need to offer additional relevant training and must give information about the availability of external expert consultation for nurses and social workers.
Assuntos
Educação em Enfermagem , Deficiência Intelectual/enfermagem , Assistentes Sociais/educação , Assistência Terminal , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Competência Profissional , Qualidade da Assistência à Saúde , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. OBJECTIVE: The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. DESIGN: The study is a survey questionnaire study. SUBJECTS: Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n=236) and end-of-life consultants (SCEN physicians; n=427). MEASUREMENTS: Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life. RESULTS: Overall, volunteers indicated items more frequently as influential to dignity and as problematic in maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items. CONCLUSIONS: It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity.
Assuntos
Atitude Frente a Morte , Cuidadores/psicologia , Médicos/psicologia , Doente Terminal/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Cuidados Paliativos , Inquéritos e Questionários , Assistência Terminal/psicologiaRESUMO
CONTEXT: More people are surviving into old age, and chronic diseases tend to become more common with age. Ill health and disability can lead to concerns about loss of personal dignity. OBJECTIVES: To investigate whether health status affects the perceptions of factors influencing personal dignity at the end of life, and the relationship between those perceptions and sociodemographic characteristics. METHODS: A subsample (n=2282) of a large advance directives cohort study was used. Three different health status groups (good, moderate, and poor) were defined based on the Euroqol-5D and a question on whether they had an illness. For each health status group, we calculated the percentage of respondents who indicated the extent to which the items of the Patient Dignity Inventory would influence their dignity as (very) large. Logistic regression analyses were used to investigate the associations between the perceptions of factors influencing personal dignity and sociodemographics. RESULTS: The percentage of respondents who indicated the factors as having a (very) large influence on dignity at the end of life were not significantly different for the three health status groups, except for three physical items on symptoms, roles, and routines. Those items were significantly more influential on dignity for people with a poor health status. Gender, old age, having a partner, and having a belief or religion that is important to one's life were associated with an understanding of factors influential to dignity. CONCLUSION: Health status seems only to affect the perceptions of physical factors maintaining dignity at the end of life. This might suggest that the understanding of dignity will not substantially change as health status changes and may support starting advance care planning early.
Assuntos
Planejamento Antecipado de Cuidados/estatística & dados numéricos , Atitude Frente a Morte , Atitude Frente a Saúde , Doença Crônica/mortalidade , Nível de Saúde , Cuidados Paliativos/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Adolescente , Adulto , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Doença Crônica/psicologia , Pessoas com Deficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Cuidados Paliativos/psicologia , Prevalência , Fatores de Risco , Distribuição por Sexo , Fatores Socioeconômicos , Espiritualidade , Assistência Terminal/psicologia , Doente Terminal/psicologia , Adulto JovemRESUMO
BACKGROUND: The European population is rapidly ageing, resulting in increasing numbers of older people dying in long-term care facilities. There is an urgent need for palliative care in long-term care facilities. AIM: The aim of this study was to systematically review the literature on palliative care research in long-term care facilities in Europe with respect to how the palliative care populations were described, and to determine the study designs and patient outcome measures utilized. METHODS: We used a systematic literature review. The search strategy included searches of PubMed, Embase and PsychINFO databases from 2000 up to May 2010, using search terms related to 'palliative care' and 'end-of-life care' combined with search terms related to 'long-term care'. We selected articles that reported studies on patient outcome data of palliative care populations residing in a long-term care facility in Europe. RESULTS: This review demonstrated that there are few, and mainly descriptive, European studies on palliative care research in long-term care facilities. Fourteen studies were retained in the review, of which eight were conducted in the Netherlands. None of these studies described their study population specifically as a palliative care or end-of-life care population. Retrospective and prospective designs were applied using many different measurement instruments. Most instruments were proxy ratings. Symptom (management) was the most frequently measured outcome. CONCLUSION: To improve future research on palliative care in long-term care facilities, agreement on what can be considered as palliative care in long-term care facilities and, the availability of well-developed and tested measurement instruments is needed to provide more evidence, and to make future research more comparable.
Assuntos
Pesquisa sobre Serviços de Saúde/métodos , Assistência de Longa Duração , Cuidados Paliativos , Europa (Continente) , Pesquisa sobre Serviços de Saúde/normas , Humanos , Avaliação de Resultados em Cuidados de Saúde/métodosRESUMO
BACKGROUND: Maintaining dignity, the quality of being worthy of esteem or respect, is considered as a goal of palliative care. The aim of this study was to analyse the construct of personal dignity and to assess the content validity of the Patient Dignity Inventory (PDI) in people with an advance directive in the Netherlands. METHODS: Data were collected within the framework of an advance directives cohort study. This cohort study is aiming to get a better insight into how decisions are made at the end of life with regard to advance directives in the Netherlands. One half of the cohort (n = 2404) received an open-ended question concerning factors relevant to dignity. Content labels were assigned to issues mentioned in the responses to the open-ended question. The other half of the cohort (n = 2537) received a written questionnaire including the PDI. The relevance and comprehensiveness of the PDI items were assessed with the COSMIN checklist ('COnsensus-based Standards for the selection of health status Measurement INstruments'). RESULTS: The majority of the PDI items were found to be relevant for the construct to be measured, the study population, and the purpose of the study but the items were not completely comprehensive. The responses to the open-ended question indicated that communication and care-related aspects were also important for dignity. CONCLUSIONS: This study demonstrated that the PDI items were relevant for people with an advance directive in the Netherlands. The comprehensiveness of the items can be improved by including items concerning communication and care.
Assuntos
Diretivas Antecipadas/ética , Cuidados Paliativos/ética , Qualidade de Vida , Direito a Morrer/ética , Adolescente , Adulto , Diretivas Antecipadas/psicologia , Diretivas Antecipadas/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões/ética , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Preferência do Paciente/estatística & dados numéricos , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: The clinical impact of risk score use in end-of-life settings is unknown, with reports limited to technical properties. METHODS: We conducted a mixed-methods study to evaluate clinical impact of a validated mortality risk score aimed at informing prognosis and supporting clinicians in decision-making in dementia patients with pneumonia. We performed a trial (n = 69) with physician-reported outcomes referring to the score's aims. Subsequently, physician focus group discussions were planned to better understand barriers to clinical impact, and we surveyed families (n = 50) and nurses practicing in nursing homes (n = 29). We finally consulted with experts and key persons for implementation. RESULTS: Most (71%) physicians who used the score considered it useful, but mainly for its learning effects. Families were never informed of numerical risk estimates. Two focus group discussions revealed a reluctance to use a numerical approach, and physicians found that outcomes conditional on antibiotic treatment were inadequate to support decision-making. Nurses varied in their perceived role in informing families. Most families (88%) wished to be informed, preferring a numerical (43%), verbalized (35%), or other approach (18%) or had no preference (5%). Revising the score, we added an ethical framework for decision-making to acknowledge its complexity, an explanatory note addressing barriers related to physicians' attitudes, and a nurses' form. CONCLUSION: The combined quantitative and qualitative studies elicited: substantial barriers to a numerical approach to physicians' end-of-life decision-making; crucial information for revisions and further score development; and a need for implementation strategies that focus on education.
Assuntos
Demência/mortalidade , Instituição de Longa Permanência para Idosos , Casas de Saúde , Pneumonia/mortalidade , Medição de Risco , Adulto , Idoso , Idoso de 80 Anos ou mais , Antibacterianos/uso terapêutico , Tomada de Decisões , Demência/complicações , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros , Médicos , Pneumonia/complicações , Pneumonia/tratamento farmacológico , Prognóstico , Índice de Gravidade de Doença , Assistência TerminalRESUMO
Despite the importance of palliative care and quality of life (QoL) as an outcome measure, little research evaluated the QoL instruments that are used in end-of-life situations. We evaluated the content of and domains measured by QoL instruments that are suitable for use in palliative care and how the domain of spirituality was operationalized in these instruments. We conducted two literature reviews. One identified the domains that are most important for the QoL of incurably ill patients and resulted in a framework of QoL domains. The other review identified 29 instruments measuring (at least one domain of) QoL that are appropriate for use in palliative care. Most of the instruments covered only one or two QoL domains, and none of the instruments covered all QoL domains included in the framework. Among the 29 instruments, 15 included items on spirituality. We also categorized the spirituality items contained in the instruments into the spirituality aspects in the framework. Most spirituality items concerned the meaning or purpose of life. This study provides information about the domains included in QoL instruments that are suitable for use in palliative care and provides insights into the differences in content, which can be helpful when choosing an instrument for use in palliative care.
Assuntos
Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Espiritualidade , Humanos , Inquéritos e QuestionáriosRESUMO
PURPOSE: In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. METHODS: We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. RESULTS: 29 instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. CONCLUSIONS: Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.