Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 412
Filtrar
Mais filtros

Tipo de documento
Intervalo de ano de publicação
1.
BMC Palliat Care ; 23(1): 77, 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38509501

RESUMO

BACKGROUND: Advance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients' medical treatment preferences. METHODS: The design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient's preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach's α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups. RESULTS: Acceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up. CONCLUSIONS: The Treat-Me-ACP can be used to evaluate the dynamics of patients' medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00016886 on 04/06/2019.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Idoso , Idoso de 80 Anos ou mais , Diretivas Antecipadas , Assistência Terminal/métodos , Preferência do Paciente , Vida Independente
2.
J Music Ther ; 61(2): 102-131, 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38484183

RESUMO

The concept of relationship completion is embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life. No studies have been published investigating and trying to understand how music therapy facilitates the Four Expressions in Life. This convergent mixed-methods study examined the effects of music therapy to facilitate relationship completion for patients at the end of life and their families in Taiwan, and explored their personal experiences in music therapy sessions. Thirty-four patients at end-of-life care and 36 of their family members participated in a single music therapy session with a one-group pretest-posttest design using standardized quality-of-life measures for patients at the end of life and families. A nested sample of 5 patients and 9 family members completed semi-structured interviews. Significant differences between the pre and post session scores were revealed for patients in the Life Completion subscale of the QUAL-E (p < .001), and the global QoL Indicator (p < .001), and for families in the Completion subscale of the QUAL-E (Fam) (p < .001), and the Overall Quality of Life (p < .001). Four themes around opportunities emerged from the interviews: the opportunity for exploration, for connection, for expression, and for healing. The integrated findings suggest that music therapy facilitated relationship completion and improved quality of life for both patients and their families. Furthermore, this study supports that the transformative level of music therapy practice within a single session for end-of-life care is attainable.


Assuntos
Musicoterapia , Qualidade de Vida , Assistência Terminal , Humanos , Musicoterapia/métodos , Feminino , Masculino , Assistência Terminal/psicologia , Assistência Terminal/métodos , Taiwan , Pessoa de Meia-Idade , Idoso , Adulto , Família/psicologia , Idoso de 80 Anos ou mais
3.
Oncologist ; 29(5): e708-e715, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38387031

RESUMO

BACKGROUND: The aim of this study was to describe the implementation of integrated palliative care (PC) and the intensity of care in the last 3 months before death for patients with metastatic breast cancer. MATERIALS AND METHODS: We conducted a multicentric study of all adult patients with metastatic breast cancer who died over a 4-month period. Complete data were collected and checked from clinical records, including PC interventions and criteria regarding EOL care aggressiveness. RESULTS: A total of 340 decedent patients from 12 comprehensive cancer centres in France were included in the study. Sixty-five percent met the PC team with a median time of 39 days between the first intervention and death. In the last month before death, 11.5% received chemotherapy, the frequency of admission to intensive care unit was 2.4%, and 83% experienced acute hospitalization. The place of death was home for 16.7%, hospitalization for 63.3%, PC unit for 20%. Univariate and multivariate analyses showed factors independently associated with a higher frequency of chemotherapy in the last month before death: having a dependent person at home, meeting for the first time with a PC team < 30 days before death, and time between the first metastasis and death below the median. CONCLUSION: PC team integration was frequent and late for patients with metastatic breast cancer. However, PC intervention > 30 days is associated with less chemotherapy in the last month before death. Further studies are needed to better understand how to implement a more effective mode of PC integration for patients with metastatic breast cancer.


Assuntos
Neoplasias da Mama , Cuidados Paliativos , Assistência Terminal , Humanos , Neoplasias da Mama/terapia , Neoplasias da Mama/patologia , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/mortalidade , Feminino , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Assistência Terminal/normas , Pessoa de Meia-Idade , Idoso , Metástase Neoplásica , Adulto , França , Idoso de 80 Anos ou mais
4.
BMC Geriatr ; 23(1): 677, 2023 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-37858076

RESUMO

BACKGROUND: Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned. METHODS: A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services. RESULTS: The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place. CONCLUSIONS: An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.


Assuntos
Demência , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Demência/epidemiologia , Demência/terapia , Cuidadores , Assistência Terminal/métodos , Inglaterra
5.
BMC Emerg Med ; 23(1): 81, 2023 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-37532997

RESUMO

BACKGROUND: Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care (EoLC) but without a fully specified theoretical model. Theory of Change models can provide theoretical and testable links from intervention activities to proposed long-term outcomes and indicate the areas for assessment of effectiveness. This study aimed to develop an intervention for improving paramedic EoLC for patients in the community. METHODS: A Theory of Change approach was used as the overarching theoretical framework for developing an intervention to improve paramedic end-of-life skills. Nine stakeholders - including specialist community paramedics, ambulance call handlers and palliative care specialists - were recruited to five consecutive online workshops, ranging between 60 and 90 min. Each workshop had 2-3 facilitators. Over multiple workshops, stakeholders decided on the desired impact, short- and long-term outcomes, and possible interventions. During and between these workshops a Theory of Change model was created, with the components shared with stakeholders. RESULTS: The stakeholders agreed the desired impact was to provide consistent, holistic, patient-centred, and effective EoLC. Four potential long-term outcomes were suggested: (1) increased use of anticipatory and regular end-of-life medications; (2) reduced end-of-life clinical and medication errors; (3) reduced unnecessary hospitalisations; (4) increased concordance between patient preferred and actual place of death. Key interventions focused on providing immediate information on what to do in such situations including: appraising the situation, developing an algorithm for a treatment plan (including whether or not to convey to hospital) and how to identify ongoing support in the community. CONCLUSIONS: A Theory of Change approach was effective at identifying impact, outcomes, and the important features of an end-of-life intervention for paramedics. This study identified the need for paramedics to have immediate access to information and resources to support EoLC, which the workshop stakeholders are now seeking to develop as an intervention.


Assuntos
Auxiliares de Emergência , Assistência Terminal , Humanos , Paramédico , Assistência Terminal/métodos , Cuidados Paliativos , Morte
6.
BMJ Health Care Inform ; 30(1)2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37399361

RESUMO

BACKGROUND: Quality improvement decision makers are left to develop an understanding of quality within their healthcare system from a deluge of narrowly focused measures that reflect existing fragmentation in care and lack a clear method for triggering improvement. A one-to-one metric-to-improvement strategy is intractable and leads to unintended consequences. Although composite measures have been used and their limitations noted in the literature, what remains unknown is 'Can integrating multiple quality measures provide a systemic understanding of care quality across a healthcare system?' METHODS: We devised a four-part data-driven analytic strategy to determine if consistent insights exist about the differential utilisation of end-of-life care using up to eight publicly available end-of-life cancer care quality measures across National Cancer Institute and National Comprehensive Cancer Network-designated cancer hospitals/centres. We performed 92 experiments that included 28 correlation analyses, 4 principal component analyses, 6 parallel coordinate analyses with agglomerative hierarchical clustering across hospitals and 54 parallel coordinate analyses with agglomerative hierarchical clustering within each hospital. RESULTS: Across 54 centres, integrating quality measures provided no consistent insights across different integration analyses. In other words, we could not integrate quality measures to describe how the underlying quality constructs of interest-intensive care unit (ICU) visits, emergency department (ED) visits, palliative care use, lack of hospice, recent hospice, use of life-sustaining therapy, chemotherapy and advance care planning-are used relative to each other across patients. Quality measure calculations lack interconnection information to construct a story that provides insights about where, when or what care is provided to which patients. And yet, we posit and discuss why administrative claims data-used to calculate quality measures-do contain such interconnection information. CONCLUSION: While integrating quality measures does not provide systemic information, new systemic mathematical constructs designed to convey interconnection information can be developed from the same administrative claims data to support quality improvement decision making.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Melhoria de Qualidade , Indicadores de Qualidade em Assistência à Saúde , Assistência Terminal/métodos , Tomada de Decisões
7.
Int J Palliat Nurs ; 29(4): 180-186, 2023 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-37079474

RESUMO

BACKGROUND: Spiritual uncertainty is a new construct for end-of-life care that focuses on the questions, worries and doubts people have with end-of-life spirituality. Spiritual uncertainty can contribute to spiritual distress for patients and families dealing with the end of life, as well as lead healthcare providers to avoid spiritual care methods. AIMS: This article reports on the item construction of a new survey design to measure the spiritual uncertainty of healthcare providers. METHODS: Items were constructed from qualitative data gathered from five focus groups (with a total of 23 interdisciplinary hospice and palliative care providers being surveyed). Data were developed through three rounds of item construction, selection/refinement and assessment. FINDINGS: A final pool of 42 items was constructed to measure the spiritual uncertainty of healthcare providers. Expert validity was obtained by 16 interdisciplinary hospice and palliative care providers. CONCLUSION: This survey is the first to measure spiritual uncertainty of healthcare providers. Additional research is needed to assess the psychometric properties of survey items.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Hospitais para Doentes Terminais/métodos , Incerteza , Assistência Terminal/métodos , Espiritualidade
9.
BMC Prim Care ; 24(1): 77, 2023 03 23.
Artigo em Inglês | MEDLINE | ID: mdl-36959553

RESUMO

BACKGROUND: Many elderly people wish to die at home but end up dying at the hospital. If the patient wishes to die at home, palliative care provided by General Practitioners (GPs) may increase the chance of dying at home, however, there is a lack of knowledge on how GPs should provide palliative care. We aimed to identify roles, tasks and approaches of GPs enabling palliative care, by exploring the experiences of GPs, other healthcare professionals, patients, and relatives through a systematic review of the qualitative literature. METHODS: We searched PubMed, EMBASE, PsycINFO, Web of Science, and CINAHL in March 2022. Thematic analysis was used for synthesizing the results. RESULTS: Four thousand five hundred sixty three unique records were retrieved, and 12 studies were included for review. Of these, ten were interview or focus group studies and two were survey studies with additional open-ended questions. Only qualitative findings from the studies were used in synthesizing the results. Thematic analysis produced four main themes describing the roles, tasks and approaches of GPs enabling palliative care to increase the chance for patients to die at home. GPs can support patients in the final phases of life by applying a holistic, patient-centred, and proactive approach to palliative care and by having sufficient education and training. Furthermore, the palliative care consultation should include symptom management, handling psychosocial and spiritual needs, maintaining a fragile balance, and proper communication with the patient. Lastly, GPs must address several palliative care elements surrounding the consultation including initiating the palliative care, being available, being the team coordinator/collaborator, providing continuous care and having sufficient knowledge about the patient. CONCLUSIONS: The roles, tasks and approaches of the GPs enabling palliative care include being aware of elements in the palliative care consultation and elements surrounding the consultation and by having sufficient education and training and a broad, proactive, and patient-centred approach.


Assuntos
Clínicos Gerais , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Idoso , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Assistência Terminal/psicologia , Clínicos Gerais/psicologia , Atitude do Pessoal de Saúde
10.
Age Ageing ; 51(8)2022 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-36001482

RESUMO

BACKGROUND: understanding end-of-life preferences in the general population and how they are structured in people's minds is essential to inform how to better shape healthcare services in accordance with population expectations for their end of life and optimise communication on end-of-life care issues. OBJECTIVE: explore key dimensions underlying end-of-life preferences in a nationally representative sample of adults aged 55 and over in Switzerland. METHODS: respondents (n = 2,514) to the Swiss version of the Survey of Health, Ageing and Retirement in Europe assessed the importance of 23 end-of-life items on a 4-point Likert scale. The factorial structure of the underlying end-of-life preferences was examined using exploratory structural equation modelling. RESULTS: four dimensions underlying end-of-life preferences were identified: a medical dimension including aspects related to pain management and the maintenance of physical and cognitive abilities; a psychosocial dimension encompassing aspects related to social and spiritual support; a control dimension addressing the need to achieve some control and to put things in order before death; and a burden dimension reflecting wishes not to be a burden to others and to feel useful to others. CONCLUSION: highlighting the multi-dimensionality of end-of-life preferences, our results reaffirm the importance of a holistic and comprehensive approach to the end of life. Our results also provide a general framework that may guide the development of information and awareness campaigns on end-of-life care issues in the general population, informational materials and guidelines to support healthy individuals in end-of-life thinking and planning, and advance directive templates appropriate for healthy individuals.


Assuntos
Diretivas Antecipadas , Assistência Terminal , Comunicação , Morte , Humanos , Inquéritos e Questionários , Suíça , Assistência Terminal/métodos
11.
J Hosp Palliat Nurs ; 24(1): 78-83, 2022 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-34840281

RESUMO

Spiritual care is a critical aspect of end-of-life care that is often undervalued and underaddressed by hospice health care teams. The purpose of this quality improvement project was to determine if the implementation of an evidence-based spiritual care protocol changed practices regarding the initial assessment of spiritual needs, frequency of reassessment of needs, the inclusion of spiritual interventions, and staff perspectives on spiritual care. The preimplementation and postimplementation data evaluation displayed increased compliance with spiritual needs assessment within 5 days of admission, increased reassessment intervals, an increase in the percentage of interactions that included spiritual interventions, and improved staff perspectives on spiritual care. The findings of the study support implementation of a spiritual care protocol in hospice patients.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Terapias Espirituais , Assistência Terminal , Cuidados Paliativos na Terminalidade da Vida/métodos , Humanos , Espiritualidade , Assistência Terminal/métodos
12.
Am J Hosp Palliat Care ; 39(8): 926-933, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34951547

RESUMO

PURPOSE: Artificial hydration and nutrition therapy (AHNT) initiated by patients/families sometimes differs from medically appropriate treatment plans. We aimed to identify the causes of these differences and examine the ensuing responses and outcomes. METHODS: Of 133 adult cancer patients receiving end-of-life care in the last 2 years, these discrepancies occurred in 41 patients. We retrospectively examined the following issues: (1) The reason why these discrepancies occurred. (2) Based on the causes identified in (1), the following actions were taken: 1) If the consent to change to medically appropriate AHNT was obtained, physical findings using Japan Palliative Oncology Study (JPOS) group and Edmonton Symptom Assessment System (ESAS) were compared before and 1 week after the intervention. 2) If consent was not obtained, time-limited trial (TLT) was conducted, and these results were compared. (3) The communication between patients/families and medical professionals was compared using Support Team Assessment Schedule. RESULTS: (1) Causes: a) the lack of understanding of the disease condition in 26 cases and b) faulty expectation of AHNT in 15 cases. (2) In 30 cases of 1) (20 of a) and 10 of b)) and 11 of 2) in which TLT was performed, JPOS and ESAS improved significantly. (3) The communication above was improved significantly in 1) and 2) (P = .0027 and .0039, respectively). CONCLUSION: Providing medically appropriate AHNT with the consent of patients/families is expected to not only alleviate distressing symptoms but also improve the communication between patients/families and medical professionals, as well as improve the quality of palliative care.


Assuntos
Neoplasias , Terapia Nutricional , Assistência Terminal , Adulto , Humanos , Neoplasias/terapia , Apoio Nutricional , Cuidados Paliativos/métodos , Estudos Retrospectivos , Assistência Terminal/métodos
13.
Isr Med Assoc J ; 23(7): 426-431, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34251125

RESUMO

BACKGROUND: Decisions on medication treatment in children dying from cancer are often complex and may result in polypharmacy and increased medication burden. There is no information on medication burden in pediatric cancer patients at the end of life (EOL). OBJECTIVES: To characterize medication burden during the last hospitalization in children dying from cancer. METHODS: We performed a retrospective cohort study based on medical records of 90 children who died from cancer in hospital between 01 January 2010 and 30 December 2018. Demographic and clinical information were collected for the last hospitalization. We compared medication burden (number of medication orders) at hospitalization and at time of death and examined whether changes in medication burden were associated with clinical and demographic parameters. RESULTS: Median medication burden was higher in leukemia/lymphoma patients (6 orders) compared to solid (4 orders) or CNS tumor patients (4 orders, P = 0.006). Overall, the median number of prescriptions per patient did not change until death (P = 0.42), while there was a significant reduction for some medication subgroups (chemotherapy [P = 0.035], steroids [P = 0.010]).Patients dying in the ICU (n=15) had a higher medication burden at death (6 orders) than patients dying on wards (3 orders, P = 0.001). There was a trend for a reduction in medication burden in patients with "Do not resuscitate" (DNR) orders (P = 0.055). CONCLUSIONS: Polypharmacy is ubiquitous among pediatric oncology patients at EOL. Disease type and DNR status may affect medication burden and deprescribing during the last hospitalization.


Assuntos
Antineoplásicos/uso terapêutico , Neoplasias , Cuidados Paliativos , Polimedicação , Esteroides/uso terapêutico , Assistência Terminal , Criança , Procedimentos Clínicos/estatística & dados numéricos , Demografia , Feminino , Pesquisa sobre Serviços de Saúde , Hospitalização/estatística & dados numéricos , Humanos , Israel/epidemiologia , Masculino , Estadiamento de Neoplasias , Neoplasias/tratamento farmacológico , Neoplasias/mortalidade , Neoplasias/patologia , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Ordens quanto à Conduta (Ética Médica) , Assistência Terminal/métodos , Assistência Terminal/estatística & dados numéricos
16.
J Hosp Palliat Nurs ; 22(6): 532-551, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33044420

RESUMO

This study aimed to compare perceptions of spiritual care among patients with life-threatening cancer, their primary family caregivers, and hospice/palliative care nurses.Data were collected using both structured and unstructured approaches. Structured questionnaire data were examined using statistical analysis methods, and unstructured data were examined using content analysis to compare the 3 participant groups. The questionnaire revealed that among all 3 groups, spiritual care was commonly perceived to relate to "having the opportunity for internal reflection," "finding meaning," "encouraging hope," and "listening to and being with patients." Content analysis of the unstructured data revealed 5 themes: "Caring with sincerity," "Strengthening spiritual resources," "Alleviating physical pain and discomfort" (among patients and primary family caregivers only), "Improving spiritual care service," and "Multifaceted cooperation" (among hospice/palliative care nurses only). Our findings suggest that for patients with life-threatening illnesses such as terminal cancer, spiritual care should not be limited to religious practice but should also satisfy inner existential needs, for example, by encouraging hope, providing empathy, and helping patients find meaning in their circumstances.


Assuntos
Cuidadores/psicologia , Percepção , Terapias Espirituais/normas , Assistência Terminal/normas , Adulto , Cuidadores/estatística & dados numéricos , Feminino , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/psicologia , Pesquisa Qualitativa , República da Coreia , Terapias Espirituais/psicologia , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/psicologia
17.
Cochrane Database Syst Rev ; 9: CD012780, 2020 09 30.
Artigo em Inglês | MEDLINE | ID: mdl-32996586

RESUMO

BACKGROUND: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously. OBJECTIVES: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families. SEARCH METHODS: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available. MAIN RESULTS: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I2 = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I2 = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I2 = 0%, 2 studies, 337 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I2 = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I2 = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision. AUTHORS' CONCLUSIONS: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations.


Assuntos
Cuidadores/estatística & dados numéricos , Serviços Hospitalares de Assistência Domiciliar/economia , Cuidados Paliativos/economia , Cuidados Paliativos/métodos , Assistência Terminal/economia , Assistência Terminal/métodos , Assistência Ambulatorial/economia , Viés , Cuidadores/psicologia , Análise Custo-Benefício , Família , Insuficiência Cardíaca/mortalidade , Insuficiência Cardíaca/terapia , Hospitalização/economia , Humanos , Neoplasias/mortalidade , Neoplasias/terapia , Manejo da Dor/estatística & dados numéricos , Satisfação do Paciente , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Avaliação de Sintomas/estatística & dados numéricos
18.
Cuad Bioet ; 31(102): 203-222, 2020.
Artigo em Espanhol | MEDLINE | ID: mdl-32910672

RESUMO

The crisis in the health system caused by COVID-19 has left some important humanitarian deficits on how to care for the sick in their last days of life. The humanization of the dying process has been affected in three fundamental aspects, each of which constitutes a medical and ethical duty necessary. In this study, I analyze why dying accompanied, with the possibility of saying goodbye and receiving spiritual assistance, constitutes a specific triad of care and natural obligations that should not be overlooked - even in times of health crisis - if we do not want to see human dignity violated and violated some fundamental rights derived from it.


Assuntos
Atitude Frente a Morte , Betacoronavirus , Infecções por Coronavirus , Pandemias , Pneumonia Viral , Espiritualidade , Assistência Terminal/ética , COVID-19 , Desumanização , Emoções , Humanos , Relações Interpessoais , Obrigações Morais , Cuidados Paliativos , Conforto do Paciente , Isolamento de Pacientes/ética , Direitos do Paciente , Pessoalidade , Papel do Médico , Religião , SARS-CoV-2 , Assistência Terminal/métodos , Assistência Terminal/psicologia , Visitas a Pacientes
19.
J Altern Complement Med ; 26(7): 571-591, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32673080

RESUMO

Objectives: This study was conducted before an evidence review on Traditional and Complementary Medicine (TCM) to update the clinical practice guidelines (CPGs): "Deciding palliative and end-of-life (P/EoL) care for people with diabetes." The aim was to frame the PICO (population/problems, interventions/comparisons, and outcomes), ascertain their importance, and identify other modifying factors for grading recommendations. Design: A systematic scoping review mapped information about diabetes P/EoL problems and outcomes, TCM use, provision, benefits and risks, and stakeholder preferences and values. Thirteen electronic databases were searched in 2017/18 until no new information was identified. Relevant data were extracted, rated for quality, directness, and relevance, and synthesized using triangulation methods. Excluded was diabetes prevention or treatment, as this is not an important P/EoL problem. Results: Of the 228 included articles, except for diabetes P/EoL problems, insufficient direct evidence led to data being extrapolated from either adults with diabetes or any P/EoL diagnosis. The findings affirmed that caring for people with diabetes in need of P/EoL care is complex due to multiple fluctuating needs that are influenced by the P/EoL trajectories (stable, unstable, deteriorating, terminal, or bereaved), multimorbidity, and difficult-to-manage chronic and acute problems. The only problem specific to diabetes P/EoL care, was unstable glycemia. Over 50 TCM interventions commonly used by patients and/or provided by services were identified, of which, many might simultaneously address multiple problems and 18 had been appraised in systematic reviews. Physical and psychologic symptom reliefs were most often evaluated; however, these were only one aspect of a "good death." Other important outcomes were the quality and location of care, personal agency, relationships, preparations for the dying process, spirituality, and affirmation of the whole person. Other important modifying factors included opportunity costs, affordability, availability, preferences, cultural appropriateness, and alignment with beliefs about the meaning of illness and death. Conclusions: There is a role for TCM in the multidisciplinary holistic P/EoL care of people with diabetes. Due to the paucity of evidence specific to this population, the generalizability of some of these results is broader and the updated CPG will also need to consider indirect evidence from other patient groups. Along with recommendations about indications for TCM use, the CGP should provide guidance on ceasing unnecessary interventions, reducing polypharmacy and managing unstable glycemia is required. Before ceasing a TCM, a broader risk-benefit analysis is recommended, as unlike many conventional therapies, there may be multiple benefits warranting its continuation.


Assuntos
Terapias Complementares , Diabetes Mellitus/terapia , Medicina Integrativa , Cuidados Paliativos/métodos , Guias de Prática Clínica como Assunto , Assistência Terminal/métodos , Glicemia/metabolismo , Cultura , Saúde Holística , Humanos , Medicina Tradicional , Autonomia Pessoal , Espiritualidade
20.
Tohoku J Exp Med ; 251(2): 91-96, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32581192

RESUMO

Providing spiritual care in light of a patient's religious and/or spiritual background can help improve the quality of end-of-life care. Rinsho-shukyo-shi is a Japanese interfaith chaplain who provides religious and spiritual care to patients. In this study, we qualitatively explore the impressions of patients in a palliative care unit of the activities of an interfaith chaplain in a hospital in Japan. The authors used semi-structured interviews carried out by a male nurse experienced in qualitative and quantitative research in palliative care. The male nurse asked only a few predetermined questions in the interviews, which were conducted from January 19 to December 26, 2018. The interviewees were 15 patients diagnosed with advanced cancer (five men and 10 women; aged 53-81 years), and they were admitted to the palliative care unit of Tohoku University Hospital (the hospital has no religious affiliation). Patients who had spoken to the interfaith chaplain at the hospital at least twice were included in the study. The interviews were digitally audio-recorded, transcribed verbatim, and analyzed. Three main themes were identified through thematic analysis. Resistance varied across patients; no patient felt resistance to the intervention by, or to the presence of, the interfaith chaplain once he/she had spoken with him. Opinions about the interfaith chaplain also varied, with 10 patients claiming that his role was necessary for end-of-life care and beneficial for the chaplain himself. Finally, the patients' religious beliefs varied widely. In conclusion, the interfaith chaplain is deemed helpful by the interviewed patients in relieving their anxieties.


Assuntos
Clero/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Percepção , Espiritualidade , Idoso , Idoso de 80 Anos ou mais , Atitude , Feminino , Unidades Hospitalares , Humanos , Entrevistas como Assunto , Japão , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Religião , Religião e Medicina , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/psicologia
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA