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1.
J Pain Symptom Manage ; 66(2): e233-e237, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37072103

RESUMEN

Palliative care teams offer holistic care for patients experiencing serious illness and related suffering, nevertheless, there are times when clinicians are asked by patients for help to obtain assisted dying. Patients in a growing number of areas may be eligible to request medically administered or self-administered lethal medications to control the timing of death and palliative care practices, established to neither hasten nor postpone death, may be challenged when caring for patients asking for assisted dying. In this "Controversies in Palliative Care" article, we invite three experts to provide a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. These experts suggest palliative care teams should be and are involved in medical assisted dying, but how palliative care teams are involved may depend on type of assisted dying requested, team members' scope of practice, legal regulations, and institutional guidelines. Research is needed on many aspects of assisted dying and palliative care including improving evidence-based clinical guidelines, addressing the needs of families, and coping strategies for all involved. An international study comparing assisted dying practices within, and outside palliative care may inform policy helping to clarify whether the integration of palliative care in assisted dying improves end-of-life care. In addition to research, it is recommended that researchers and clinicians collaborate on the development of a clinical textbook on assisted dying and palliative care to support all palliative care team members, offering guidelines and recommendations for practice.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Enfermería de Cuidados Paliativos al Final de la Vida , Suicidio Asistido , Cuidado Terminal , Humanos , Cuidados Paliativos
2.
Front Psychiatry ; 13: 859745, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35360142

RESUMEN

Objective: Although euthanasia in the context of adult psychiatry is legalized in Belgium, it poses major ethical and clinical challenges for the health care professionals and volunteers involved. This study aimed to address these members' concrete experiences and support needs. Methods: A qualitative semi-structured interview study was conducted with 16 physicians and 14 other health care professionals and volunteers, with at least one concrete experience with euthanasia requests and procedures concerning adults with psychiatric conditions. Findings: Concrete experiences concerned the following 8 domains: (1) the impact of euthanasia on the clinical trajectory and (2) on the therapeutic relationship, (3) internal and (4) external collaborative partnerships, (5) patients' social inner circle (non-)involvement, (6) the use of recently published guidelines and, (7) the first criminal trials on this topic, and (8) the act of euthanasia. The following 8 main support needs emerged; (1) protocols addressing specific sub-populations and pathologies, (2) protocols specifically drawn up for non-medics, (3) guidance on how to adequately implement the two-track approach, (4) (after)care for patients, (5) (after)care for the health care team, (6) guidance on the patient's social inner circle involvement, (7) enhanced education measures, and (8) enhanced financial measures, including incentives for holistic, palliative care approaches. Conclusion: The health care professionals and volunteers reported many positive and negative experiences in dealing with euthanasia requests in adult psychiatry. They reported several support needs across the extensive euthanasia trajectory, pertaining to concrete management of thorny issues that guidelines do not (yet) touch on. Important implications of our study relate to tackling these existing issues, and to paying sufficient attention to the impact of a euthanasia trajectory on all actors, including the patients and their social inner circle, involved.

3.
PLoS Med ; 17(11): e1003422, 2020 11.
Artículo en Inglés | MEDLINE | ID: mdl-33186365

RESUMEN

BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.


Asunto(s)
Planificación Anticipada de Atención , Neoplasias , Participación del Paciente/estadística & datos numéricos , Atención Dirigida al Paciente , Adaptación Psicológica , Adolescente , Adulto , Directivas Anticipadas , Anciano , Anciano de 80 o más Años , Bélgica , Comunicación , Toma de Decisiones/fisiología , Dinamarca , Femenino , Humanos , Italia , Masculino , Persona de Mediana Edad , Neoplasias/diagnóstico , Neoplasias/terapia , Países Bajos , Calidad de Vida/psicología , Eslovenia , Reino Unido , Adulto Joven
4.
BMJ Support Palliat Care ; 10(4): e42, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30948448

RESUMEN

OBJECTIVE: To examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision. METHODS: A cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians' provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis. RESULTS: The response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident's religiousness, fear of dying and involvement of a healthcare chaplain. CONCLUSION: Most physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician's own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents.


Asunto(s)
Casas de Salud/estadística & datos numéricos , Médicos , Terapias Espirituales , Adulto , Anciano , Anciano de 80 o más Años , Actitud Frente a la Muerte , Bélgica , Estudios Transversales , Familia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Religión , Espiritualidad , Encuestas y Cuestionarios , Cuidado Terminal
5.
Int J Integr Care ; 19(2): 3, 2019 Apr 03.
Artículo en Inglés | MEDLINE | ID: mdl-30971869

RESUMEN

INTRODUCTION: Nursing home residents are a vulnerable and frail segment of the population, characterised by their complex and palliative care needs. To ensure an integrated approach to palliative care for this target group, working on a collaborative basis with multiple providers across organisational boundaries is necessary. Considering that coordinators of palliative networks support and coordinate collaboration, the research question is: 'how do network coordinators perceive the process of collaboration between organisations in Flemish palliative networks?' METHODS: A dual-phase sequential mixed-methods design was applied. First, the coordinators of each of the fifteen palliative networks in Flanders completed a survey in which they evaluated ten aspects of collaboration for two types of cooperation: between nursing homes and home care, and between nursing homes and hospitals. Next, the survey results thus obtained were discussed to improve understanding in a focus group composed of the above coordinators, and which was analysed on the basis of content analysis. RESULTS: In both forms of cooperation, the 'formalisation' and 'governance' were the aspects that yielded the lowest mean scores. The coordinators in the focus group expressed a need for more formalised interaction among organisations with regard to palliative care, the establishment of formal channels of communication and the exchange of information, as well as the development of shared leadership. CONCLUSIONS: The perspectives of the coordinators on inter-organisational collaboration are a valuable starting point for interventions directed at the stronger integration of palliative care for residents of long term-care facilities.

6.
Lancet Oncol ; 19(11): e588-e653, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-30344075

RESUMEN

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.


Asunto(s)
Prestación Integrada de Atención de Salud/organización & administración , Oncología Médica/organización & administración , Neoplasias/terapia , Cuidados Paliativos/organización & administración , Grupo de Atención al Paciente/organización & administración , Actitud del Personal de Salud , Actitud Frente a la Muerte , Conducta Cooperativa , Vías Clínicas/organización & administración , Conocimientos, Actitudes y Práctica en Salud , Humanos , Comunicación Interdisciplinaria , Neoplasias/diagnóstico , Neoplasias/mortalidad , Calidad de Vida , Resultado del Tratamiento
7.
PLoS One ; 13(9): e0203326, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30231042

RESUMEN

BACKGROUND: Research suggests that palliative home care should be integrated early into standard care for end-stage COPD patients. Patients also express the wish to be cared for and to die at home. However, a practice model for early integration of palliative home care (PHC) into standard care for end-stage COPD has not been fully developed. AIM: To develop an intervention for early integration of PHC into standard care for end-stage COPD patients. METHODS: We conducted a Phase 0-I study according to the Medical Research Council Framework for the development of complex interventions. Phase 0 aimed to identify the inclusion criteria and key components of the intervention by way of an explorative literature search of interventions, expert consultations, and seven focus groups with general practitioners and community nurses on perceived barriers to and facilitators of early integrated PHC for COPD. In Phase 1, the intervention, its inclusion criteria and its components were developed and further refined by an expert panel and two expert opinions. RESULTS: Phase 0 resulted in identification of inclusion criteria and components from existing interventions, and barriers to and facilitators of early integration of PHC for end-stage COPD. Based on these findings, a nurse-led intervention was developed in Phase I consisting of training for PHC nurses in symptom recognition and physical therapy exercises for end-stage COPD, regular visits by PHC nurses at the patients' homes, two information leaflets on self-management, a semi-structured protocol and follow-up plan to record the outcomes of the home visits, and integration of care by enabling collaboration and communication between home and hospital-based professional caregivers. CONCLUSION: This Phase 0-I trial succeeded in developing a complex intervention for early integration of PHC for end-stage COPD. The use of three methods in Phase 0 gave reliable data on which to base inclusion criteria and components of the intervention. The preliminary effectiveness, feasibility and acceptability of the intervention will be subsequently tested in a Phase II study.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Cuidados Paliativos/métodos , Enfermedad Pulmonar Obstructiva Crónica/terapia , Bélgica , Prestación Integrada de Atención de Salud/métodos , Medicina Basada en la Evidencia/métodos , Enfermería Basada en la Evidencia/métodos , Humanos , Modelos Teóricos , Enfermedad Pulmonar Obstructiva Crónica/enfermería
8.
NPJ Prim Care Respir Med ; 28(1): 23, 2018 06 20.
Artículo en Inglés | MEDLINE | ID: mdl-29925846

RESUMEN

Early integration of palliative home care (PHC) might positively affect people with chronic obstructive pulmonary disease (COPD). However, PHC as a holistic approach is not well integrated in clinical practice at the end-stage COPD. General practitioners (GPs) and community nurses (CNs) are highly involved in primary and home care and could provide valuable perspectives about barriers to and facilitators for early integrated PHC in end-stage COPD. Three focus groups were organised with GPs (n = 28) and four with CNs (n = 28), transcribed verbatim and comparatively analysed. Barriers were related to the unpredictability of COPD, a lack of disease insight and resistance towards care of the patient, lack of cooperation and experience with PHC for professional caregivers, lack of education about early integrated PHC, insufficient continuity of care from hospital to home, and lack of communication about PHC between professional caregivers and with end-stage COPD patients. Facilitators were the use of trigger moments for early integrating PHC, such as after a hospital admission or when an end-stage COPD patient becomes oxygen-dependent or housebound, positive attitudes towards PHC in informal caregivers, more focus on early integration of PHC in professional caregivers' education, implementing advance care planning in healthcare and PHC systems, and enhancing communication about care and PHC. The results provide insights for clinical practice and the development of key components for successful practice in a phase 0-2 Early Integration of PHC for end-stage COPD (EPIC) trial, such as improving care integration, patients' disease insight and training PHC nurses in care for end-stage COPD.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Cuidados Paliativos , Enfermedad Pulmonar Obstructiva Crónica/terapia , Adulto , Anciano , Terapia Combinada , Femenino , Accesibilidad a los Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Índice de Severidad de la Enfermedad , Factores de Tiempo
9.
Palliat Med ; 32(7): 1275-1282, 2018 07.
Artículo en Inglés | MEDLINE | ID: mdl-29741457

RESUMEN

BACKGROUND: To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing. AIM: To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams. DESIGN: Qualitative study - focus group interviews. SETTING/PARTICIPANTS: Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists. RESULTS: Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks. DISCUSSION: Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.


Asunto(s)
Prestación Integrada de Atención de Salud/normas , Servicios de Atención de Salud a Domicilio/normas , Neoplasias/terapia , Cuidados Paliativos/normas , Bélgica , Femenino , Grupos Focales , Humanos , Masculino , Cuidados Paliativos/métodos , Participación del Paciente , Investigación Cualitativa
10.
Lancet Oncol ; 19(3): 394-404, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29402701

RESUMEN

BACKGROUND: The benefit of early integration of palliative care into oncological care is suggested to be due to increased psychosocial support. In Belgium, psychosocial care is part of standard oncological care. The aim of this randomised controlled trial is to examine whether early and systematic integration of palliative care alongside standard psychosocial oncological care provides added benefit compared with usual care. METHODS: In this randomised controlled trial, eligible patients were 18 years or older, and had advanced cancer due to a solid tumour, an European Cooperative Oncology Group performance status of 0-2, an estimated life expectancy of 12 months, and were within the first 12 weeks of a new primary tumour or had a diagnosis of progression. Patients were randomly assigned (1:1), by block design using a computer-generated sequence, either to early and systematic integration of palliative care into oncological care, or standard oncological care alone in a setting where all patients are offered multidisciplinary oncology care by medical specialists, psychologists, social workers, dieticians, and specialist nurses. The primary endpoint was change in global health status/quality of life scale assessed by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 items (EORTC QLQ C30) at 12 weeks. The McGill Quality of Life Questionnaire (MQOL), which includes the additional existential wellbeing dimension, was also used. Analysis was by intention to treat. This trial is ongoing, but closed for accrual, and is registered with ClinicalTrials.gov, number NCT01865396. FINDINGS: From April 29, 2013, to Feb 29, 2016, we screened 468 patients for eligibility, of whom 186 were enrolled and randomly assigned to the early and systematic palliative care group (92 patients) or the standard oncological care group (94). Compliance at 12 weeks was 71% (65 patients) in the intervention group versus 72% (68) in the control group. The overall quality of life score at 12 weeks, by the EORTC QLQ C30, was 54·39 (95% CI 49·23-59·56) in the standard oncological care group versus 61·98 (57·02-66·95) in the early and systematic palliative care group (difference 7·60 [95% CI 0·59-14·60]; p=0·03); and by the MQOL Single Item Scale, 5·94 (95% CI 5·50-6·39) in the standard oncological care group versus 7·05 (6·59-7·50) in the early and systematic palliative care group (difference 1·11 [95% CI 0·49-1·73]; p=0.0006). INTERPRETATION: The findings of this study show that a model of early and systematic integration of palliative care in oncological care increases the quality of life of patients with advanced cancer. Our findings also show that early and systematic integration of palliative care is more beneficial for patients with advanced cancer than palliative care consultations offered on demand, even when psychosocial support has already been offered. Through integration of care, oncologists and specialised palliative care teams should work together to enhance the quality of life of patients with advanced cancer. FUNDING: Research Foundation Flanders, Flemish Cancer Society (Kom Op Tegen Kanker).


Asunto(s)
Prestación Integrada de Atención de Salud/organización & administración , Esperanza de Vida , Oncología Médica/organización & administración , Neoplasias/terapia , Cuidados Paliativos/organización & administración , Grupo de Atención al Paciente/organización & administración , Anciano , Bélgica , Conducta Cooperativa , Femenino , Estado de Salud , Humanos , Comunicación Interdisciplinaria , Masculino , Persona de Mediana Edad , Neoplasias/mortalidad , Neoplasias/patología , Neoplasias/psicología , Calidad de Vida , Factores de Tiempo , Resultado del Tratamiento
11.
PLoS One ; 10(3): e0118971, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25756184

RESUMEN

BACKGROUND: Although many patients prefer to stay and die at home at the end of life, many are hospitalised. Little is known about how to avoid hospitalisations for patients living at home. AIM: To describe how hospitalisation at the end of life can be avoided, from the perspective of the GPs, nurses and family carers. METHOD: A qualitative design with face-to-face interviews was used. Taking 30 cases of patients who died non-suddenly, 26 GPs, 15 nurses and 18 family carers were interviewed in depth. Of the 30 patients, 20 were hospitalised and 10 were not hospitalised in the last three months of life. RESULTS: Five key themes that could help avoid hospitalisation at the end of life emerged from the interviews. The key themes were: 1) marking the approach of death, and shifting the mindset; 2) being able to provide acute treatment and care at home; 3) anticipatory discussions and interventions to deal with expected severe problems; 4) guiding and monitoring the patient and family in a holistic way through the illness trajectory; 5) continuity of treatment and care at home. If these five key themes are adopted in an interrelated way, this could help avoid hospitalisations, according to GPs, nurses and family carers. CONCLUSIONS: The five key themes described in this study can be seen as strategies that could help in avoiding hospitalisation at the end of life. It is recommended that for all patients residing at home, GPs and community nurses work together as a team from the moment that it is marked that death is approaching up to the end of life.


Asunto(s)
Hospitalización , Cuidado Terminal , Adulto , Anciano , Anciano de 80 o más Años , Cuidadores , Medicina Familiar y Comunitaria , Femenino , Médicos Generales , Humanos , Masculino , Persona de Mediana Edad , Enfermeras y Enfermeros , Cuidados Paliativos , Estudios Retrospectivos , Adulto Joven
12.
Eur J Public Health ; 24(3): 521-7, 2014 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-23487548

RESUMEN

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.


Asunto(s)
Accesibilidad a los Servicios de Salud , Opinión Pública , Mejoramiento de la Calidad , Cuidado Terminal , Adolescente , Adulto , Anciano , Europa (Continente) , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Cuidado Terminal/normas , Adulto Joven
13.
J Am Med Dir Assoc ; 14(9): 679-84, 2013 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-23702603

RESUMEN

OBJECTIVES: The aim of this study was to explore if and how spiritual needs are assessed and if spiritual care is provided to Dutch nursing home residents, including residents suffering from dementia, and if and how caregivers communicate and collaborate regarding the residents' spiritual needs. DESIGN: Two researchers conducted an ethnographic participatory study in a Dutch nursing home between April 2010 and June 2011, on a psychogeriatric unit (mostly dementia) and a somatic unit for residents suffering from physical disabilities. Inductive thematic analysis was used to identify patterns and trends and to interpret the data. RESULTS: The physicians did not actively address spiritual issues, nor was it part of the official job of care staff. There was no communication between the physicians and the spiritual counselor. When a resident was about to die, the nurses started an informal care process aimed at (spiritual) well-being, including cuddling, rituals, and music. This was not mentioned in the care plan or the medical chart. The nurses even supported the residents outside their professional role in their spare time. Furthermore, we identified different occupational subcultures (eg, nurses and physicians), in which behavior of residents was given different meaning, depending on the frame of reference within the subculture. CONCLUSION: Spiritual issues were addressed only informally and were not part of the formal care process, either for residents suffering from dementia or for those with physical disabilities. Our results raise questions about how the lack of communication about spiritual end-of-life care between disciplines, and the informal and formal care processes affect spiritual well-being.


Asunto(s)
Casas de Salud , Relaciones Profesional-Paciente , Espiritualidad , Cuidado Terminal , Adaptación Psicológica , Demencia/psicología , Personas con Discapacidad , Femenino , Humanos , Masculino , Países Bajos , Investigación Cualitativa
14.
J Pain Symptom Manage ; 45(6): 1030-8, 2013 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-23141880

RESUMEN

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.


Asunto(s)
Planificación Anticipada de Atención/estadística & datos numéricos , Actitud Frente a la Muerte , Actitud Frente a la Salud , Enfermedad Crónica/mortalidad , Estado de Salud , Cuidados Paliativos/estadística & datos numéricos , Cuidado Terminal/estadística & datos numéricos , Adolescente , Adulto , Distribución por Edad , Anciano , Anciano de 80 o más Años , Enfermedad Crónica/psicología , Personas con Discapacidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Países Bajos/epidemiología , Cuidados Paliativos/psicología , Prevalencia , Factores de Riesgo , Distribución por Sexo , Factores Socioeconómicos , Espiritualidad , Cuidado Terminal/psicología , Enfermo Terminal/psicología , Adulto Joven
15.
J Palliat Med ; 14(7): 852-63, 2011 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-21612502

RESUMEN

Although spiritual caregiving is a key domain of palliative care, it lacks a clear definition, which impedes both caregiving and research in this domain. The aim of this study was to conceptualize spirituality by identifying dimensions, based on instruments measuring spirituality in end-of-life populations. A systematic literature review was conducted. Literature published between 1980 and 2009, focussing on instruments measuring spirituality at the end of life was collected from the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO databases. Inclusion criteria were: (1) the studies provide empirical data collected with an instrument measuring spirituality or aspects of spirituality at the end of life; (2) the data report on a (subgroup) of an end-of-life population, and (3) the instrument is available in the public domain. Content validity was assessed according to a consensus-based method. From the items of the instruments, three investigators independently derived dimensions of spirituality at the end of life. In 36 articles that met the inclusion criteria we identified 24 instruments. Nine instruments with adequate content validity were used to identify dimensions of spirituality. To adequately represent the items of the instruments and to describe the relationships between the dimensions, a model defining spirituality was constructed. The model distinguishes the dimensions of Spiritual Well-being (e.g., peace), Spiritual Cognitive Behavioral Context (Spiritual Beliefs, Spiritual Activities, and Spiritual Relationships), and Spiritual Coping, and also indicates relationships between the dimensions. This model may help researchers to plan studies and to choose appropriate outcomes, and assist caregivers in planning spiritual care.


Asunto(s)
Formación de Concepto , Espiritualidad , Cuidado Terminal , Humanos
16.
J Pain Symptom Manage ; 40(2): 290-300, 2010 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-20541898

RESUMEN

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.


Asunto(s)
Cuidados Paliativos/psicología , Calidad de Vida/psicología , Espiritualidad , Humanos , Encuestas y Cuestionarios
18.
Palliat Med ; 20(6): 585-92, 2006 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-17060251

RESUMEN

INTRODUCTION: In the Netherlands, healthcare professionals are able to consult Palliative Care Consultation (PCC) teams about individual patients, for information, support and advice. This study aims to understand which spiritual issues are discussed in these consultations and to determine which factors influence whether they are raised or not. METHODS: The national register of the consultations of the PCC teams was analysed for a two-year period. RESULTS: Spiritual issues played a role in 8.4% of palliative care consultations, of which 4.1% were by phone and 18.3% were bedside consultations. Often spiritual issues were raised by the consultant during the exploration of the request from the caregiver; the discipline of the consultant rather than the discipline of the requesting professional or the patient characteristics determined whether or not such issues were raised. The main support given by the consultant was in coaching the professional caregiver on how to address these issues. DISCUSSION: This study demonstrates the important role of PCC team consultants in exploring and identifying the spiritual needs of patients about whom they are consulted. Although continued education in spiritual care for palliative care professionals is essential, PCC team consultants will play an important role in drawing the attention of healthcare professionals to the need to recognize and address the spiritual needs of their patients.


Asunto(s)
Cuidadores/educación , Cuidados Paliativos/psicología , Grupo de Atención al Paciente/organización & administración , Espiritualidad , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Niño , Preescolar , Consultores , Atención a la Salud/organización & administración , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Países Bajos
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