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1.
BMJ Open Qual ; 13(3)2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38977313

RESUMO

Advance care planning (ACP) is a process of discussion, reflection and communication, enabling planning for future medical treatment. Despite evidence of benefits of ACP to patients, families and the healthcare system, many die without an opportunity for such conversations, particularly those living with progressive non-malignant conditions. The Royal College of General Practitioners and Marie Curie Daffodil Standards launched in 2020 provide primary care with a structure for improving end-of-life care, including delivery of ACP. Proactive identification of patients is integral to the approach.We report on a quality improvement project which aimed to assess the take-up rate and acceptability in general practice of a timely and personalised ACP conversation using a 'What matters to you' (WMTY) framework, and to ensure that different diagnostic and demographic groups were included.Patients without previous ACP and potentially in the last year of life were offered an ACP conversation; a survey sought feedback.81% accepted the offer and in most cases, future care guidance was documented using the recognised format in Gloucestershire for recording ACP conversations, the Recommended Summary for Emergency Care and Treatment (ReSPECT) plan. Clinician and patient satisfaction was high.We concluded that an ACP discussion using a 'WMTY' format was highly acceptable to most. With recognised enablers in place and known barriers minimised, valuable personalised conversations occurred. Reframing the conversation to focus on how someone wants to live, while including their priorities for death, could alter how such conversations are perceived by clinicians and the public. It could remove negative associations (such as linking these conversations with an imminent death), which may increase motivation for all to initiate discussions.ACP conversations are evidenced best practice and could become routine in general practice with adjustments to practice processes and clinician education; the Daffodil Standards facilitate continued quality improvement.


Assuntos
Planejamento Antecipado de Cuidados , Comunicação , Medicina Geral , Melhoria de Qualidade , Humanos , Planejamento Antecipado de Cuidados/normas , Feminino , Masculino , Medicina Geral/métodos , Medicina Geral/normas , Idoso , Pessoa de Meia-Idade , Inquéritos e Questionários , Idoso de 80 Anos ou mais , Adulto , Assistência Terminal/normas , Assistência Terminal/métodos , Relações Médico-Paciente , Satisfação do Paciente
2.
BMC Palliat Care ; 23(1): 123, 2024 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-38760714

RESUMO

BACKGROUND: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. METHOD: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. DISCUSSION: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias , Humanos , Planejamento Antecipado de Cuidados/tendências , Planejamento Antecipado de Cuidados/normas , Neoplasias/terapia , Diversidade Cultural , Austrália , Pesquisa Qualitativa , Estudos Retrospectivos , Feminino , Masculino
3.
BMC Palliat Care ; 23(1): 127, 2024 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-38778335

RESUMO

BACKGROUND: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advance care planning (ACP) and patterns of end-of-life care for patients who died in the hospital. METHODS: This is a retrospective cohort study of medical records extracted from a clinical data warehouse, covering patients who died aged 0-24 in an academic tertiary children's hospital in South Korea. Participants were categorized into before (2011-2013; pre-period) and after (2017-2019; post-period) the introduction of an SPC service. Within the post-period, patients were further categorized into SPC recipients and non-recipients. RESULTS: We identified 274 and 205 patients in the pre-period and post-period, respectively. ACP was conducted more and earlier in the post-period than in the pre-period, and in patients who received palliative care than in those who did not. Patients who received SPC were likely to receive less mechanical ventilation or cardiopulmonary resuscitation and more opioids. A multivariable regression model showed that earlier ACP was associated with not being an infant, receiving SPC, and having a neurological or neuromuscular disease. CONCLUSIONS: SPC involvement was associated with more and earlier ACP and less intense end-of-life care for children and young adults who died in the hospital. Integrating palliative care into routine care can improve the quality of end-of-life care by reflecting patients' and their families' values and preferences.


Assuntos
Planejamento Antecipado de Cuidados , Cuidados Paliativos , Humanos , Estudos Retrospectivos , Masculino , Feminino , Planejamento Antecipado de Cuidados/estatística & dados numéricos , Planejamento Antecipado de Cuidados/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Cuidados Paliativos/normas , Criança , Adolescente , Lactente , Pré-Escolar , República da Coreia , Adulto Jovem , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Recém-Nascido , Prontuários Médicos/estatística & dados numéricos , Estudos de Coortes , Pediatria/métodos , Pediatria/estatística & dados numéricos , Assistência Terminal/métodos , Assistência Terminal/estatística & dados numéricos , Assistência Terminal/normas , Mortalidade Hospitalar
4.
BMC Palliat Care ; 23(1): 119, 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38750464

RESUMO

BACKGROUND: In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this. AIM: The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness. METHODS: In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global. RESULTS: From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries. CONCLUSIONS: Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.


Assuntos
Planejamento Antecipado de Cuidados , Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Planejamento Antecipado de Cuidados/normas , Assistência Terminal/métodos , Assistência Terminal/normas
5.
Pediatrics ; 149(2)2022 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-34984466

RESUMO

BACKGROUND AND OBJECTIVES: Adolescents with cardiac disease are at risk for life-changing complications and premature death. The importance of advance care planning (ACP) in adults with congenital heart disease and in pediatric patients with HIV and cancer has been demonstrated. ACP preferences of adolescents with heart disease have not been evaluated. We describe ACP preferences of adolescents with heart disease and compare with those of their caregivers. METHODS: Outpatient adolescents aged 12 to 18 years with heart failure, cardiomyopathy, heart transplantation, or who were at risk for cardiomyopathy, as well as their caregivers, completed self-administered questionnaires which evaluated participants' opinions regarding content and timing of ACP discussions, preferences for end-of-life communication, and emotional responses to ACP. RESULTS: Seventy-eight adolescents and 69 caregivers participated, forming 62 adolescent-caregiver dyads. Adolescents and caregivers reported that adolescent ACP discussions should occur early in the disease course (75% and 61%, respectively). Adolescents (92%) wanted to be told about terminal prognosis, whereas only 43% of caregivers wanted the doctor to tell their child this information. Most adolescents (72%) and caregivers (67%) anticipated that discussing ACP would make the adolescent feel relieved the medical team knew their wishes. Most caregivers (61%) believed that adolescents would feel stress associated with ACP discussions, whereas only 31% of adolescents anticipated this. CONCLUSIONS: Adolescents and their caregivers agree that ACP should occur early in disease course. There are discrepancies regarding communication of prognosis and perceived adolescent stress related to ACP discussions. Facilitated conversations between patient, caregiver, and providers may align goals of care and communication preferences.


Assuntos
Planejamento Antecipado de Cuidados/tendências , Cuidadores/psicologia , Cuidadores/tendências , Cardiopatias/psicologia , Preferência do Paciente/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Planejamento Antecipado de Cuidados/normas , Criança , Estudos Transversais , Feminino , Cardiopatias/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Transferência de Pacientes/normas , Transferência de Pacientes/tendências , Inquéritos e Questionários/normas
6.
Medicine (Baltimore) ; 100(38): e27225, 2021 Sep 24.
Artigo em Inglês | MEDLINE | ID: mdl-34559116

RESUMO

ABSTRACT: End-of-life advance care planning (ACP) has become increasingly important in home care setting. In facilitating ACP discussion in home care setting, accurate understanding of patients' survival would be beneficial because it would facilitate healthcare professionals to individualize ACP discussion. However, little is known about survival outcome of home care patients. This study aimed to clarify the outcome of patients and identify factors to better predict the survival outcome of home care patients with the focus on patients' primary diseases.We conducted a retrospective analysis using data from 277 patients managed at a home care clinic in Japan and first treated in 2017 or 2018. Data regarding sociodemographic and clinical characteristics, and clinical outcome on December 31, 2019 were extracted. Using Kaplan-Meier product-limit method, we estimated the overall 30 days, 90 days, 1 year, and 3 year survival probabilities among the entire patients and their differences according to their primary disease. We also evaluated whether outcomes differed based on the primary disease or other factors using the hazard ratio and Cox proportional hazards regression.The overall survival probability was 82.5% at 30 days, 67.8% at 90 days, 52.7% at 1 year, and 39.1% at 3 years. The survival rates at 30 days, 90 days, 1 year, and 3 years were 64.6%, 33.4%, 9.5%, and 4.1% among cancer patients; 91.9%, 86.4%, 78.1%, and 47.0% among dementia patients; and 91.9%, 86.4%, 78.1%, and 47.0% among patients with other nervous and cerebrovascular diseases, respectively. Cox proportional hazard regression clarified that cancer patients (hazard ratio 6.53 [95% CI 4.16-10.28]) and older adults (hazard ratio 1.01 [95% CI 1.00-1.02]) were significantly more likely to die than dementia patients and young patients, respectively.Primary disease had a significant influence on the prediction of survival time and could be a useful indicator to individualize ACP in home care setting.


Assuntos
Análise de Sobrevida , Assistência Terminal/normas , Adolescente , Adulto , Planejamento Antecipado de Cuidados/normas , Planejamento Antecipado de Cuidados/tendências , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Japão , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Assistência Terminal/métodos , Assistência Terminal/estatística & dados numéricos
7.
Ann Emerg Med ; 78(5): 658-669, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34353647

RESUMO

The growing palliative care needs of emergency department (ED) patients in the United States have motivated the development of ED primary palliative care principles. An expert panel convened to develop best practice guidelines for ED primary palliative care to help guide frontline ED clinicians based on available evidence and consensus opinion of the panel. Results include recommendations for screening and assessment of palliative care needs, ED management of palliative care needs, goals of care conversations, ED palliative care and hospice consults, and transitions of care.


Assuntos
Planejamento Antecipado de Cuidados/normas , Medicina de Emergência/normas , Fidelidade a Diretrizes , Cuidados Paliativos/normas , Atenção Primária à Saúde/normas , Registros Eletrônicos de Saúde , Humanos , Transferência de Pacientes , Encaminhamento e Consulta , Estados Unidos
8.
Jpn J Clin Oncol ; 51(6): 942-949, 2021 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-33774665

RESUMO

BACKGROUND: In Japan, educational support for advance care planning is still limited, and the factors facilitating advance care planning practice have not been identified. The aim of this study is to identify the factors associated with advance care planning practice in Japan using the theory of planned behaviour. METHODS: We conducted a cross-sectional study through a nationwide online questionnaire survey with 446 Japanese residents aged 20 years and older. After categorizing participants into two groups based on who performed advance care planning, comparisons were made (univariate analysis) regarding attitudes towards advance care planning, willingness to perform advance care planning, subjective norms, sense of control in performing advance care planning, presence of and relationship with a family doctor, experience of seeing or using a ventilator, and degree of self-determination (Autonomy Preference Index) as well as sociodemographic data. In addition, a logistic regression analysis was performed using the factors with significant differences in the univariate analysis as independent variables and the existence of the implementation of advance care planning as a dependent variable. RESULTS: The group with advance care planning consisted of 106 participants (23.8%), and the group without advance care planning comprised 340 participants (76.2%). Through logistic regression analysis, age (odds ratio: 1.020), subjective norms (odds ratio: 3.276) and experience with mechanical ventilation (odds ratio: 1.997) were extracted as significant factors influencing advance care planning implementation. CONCLUSIONS: Advance care planning may be facilitated by providing support not only to the patients but also to their family members to be positively disposed towards advance care planning and by offering comprehensive education regarding using a ventilator.


Assuntos
Planejamento Antecipado de Cuidados/normas , Morte , Comportamentos Relacionados com a Saúde/fisiologia , Atitude , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
9.
Support Care Cancer ; 29(6): 2917-2929, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33001268

RESUMO

PURPOSE: Patients' readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals' uncertainty about patients' readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients' readiness is expressed and develops throughout an ACP conversation. METHODS: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. RESULTS: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one's disease. Signs of not being ready included limiting one's perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. CONCLUSION: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.


Assuntos
Planejamento Antecipado de Cuidados/normas , Idoso , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
10.
BMC Palliat Care ; 19(1): 145, 2020 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-32948177

RESUMO

BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties. METHODS: This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018. RESULTS: Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%). CONCLUSIONS: The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.


Assuntos
Planejamento Antecipado de Cuidados/normas , Cuidados Paliativos/métodos , Pediatras/psicologia , Adulto , Planejamento Antecipado de Cuidados/estatística & dados numéricos , Idoso , Atitude do Pessoal de Saúde , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Pediatras/estatística & dados numéricos , República da Coreia , Inquéritos e Questionários
11.
Jpn J Clin Oncol ; 50(9): 976-989, 2020 Sep 05.
Artigo em Inglês | MEDLINE | ID: mdl-32761078

RESUMO

Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of 'filial piety,' patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient's end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient's poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of 'relational autonomy' and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.


Assuntos
Planejamento Antecipado de Cuidados/normas , Assistência Terminal/normas , Idoso , Envelhecimento , Povo Asiático , Feminino , Humanos , Masculino
12.
Contemp Nurse ; 56(3): 242-254, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32746719

RESUMO

Background: Ineffective medical treatment could be avoided if patients had completed advance directives documents in advance. Aims: This study aimed to explore the predictors for the intentions of signing advance directives among dialysis patients. Methods: This cross-sectional study recruited 209 dialysis patients by using structured questionnaires. The Statistical Package for the Social Sciences (Version 17) (SPSS/IBM Inc., Chicago, IL, USA) was used for data analysis. Results: The predictors for the intention of signing the advance directives documents were having information on palliative care, the participants' knowing about the advanced directives documents, and their having more knowledge of advance care plans. Conclusions: Health care workers may strengthen the patient's knowledge of an "advance care plan" by health education during the dialysis treatment and provide information on websites for the patients. Impact statement: Hospital managers should train their staff to provide health teachings for an advance care plan.


Assuntos
Planejamento Antecipado de Cuidados/normas , Diretivas Antecipadas/psicologia , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Educação de Pacientes como Assunto/normas , Guias de Prática Clínica como Assunto , Diálise Renal/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Taiwan , Adulto Jovem
13.
BMC Palliat Care ; 19(1): 134, 2020 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-32838763

RESUMO

BACKGROUND: To assure patient-centred end-of-life care, palliative interventions need to account for patients' preferences. Advance care planning (ACP) is a structured approach that allows patients, relatives and physicians to discuss end-of-life decisions. Although ACP can improve several patient related outcomes, the implementation of ACP remains difficult. The col-ACP-study (collaborative advance care planning) will investigate a new ACP procedure (col-ACP-intervention (German: Hand-in-Hand Intervention)) in palliative cancer patients and their relatives that addresses individual values and targets barriers of communication before an ACP process. METHODS: In a randomised controlled trial, 270 cancer patients without curative treatment options and their relatives will receive either 1) col-ACP 2) a supportive intervention (active control group) or 3) standard medical care (TAU). col-ACP comprises two steps: a) addressing various barriers of patients and relatives that discourage them from discussing end-of-life issues followed by b) a regular, structured ACP procedure. The col-ACP-intervention consists of 6 sessions. Primary endpoint is the patients' quality of life 16 weeks after randomisation. Secondary endpoints include measurements of distress; depression; communication barriers; caregivers' quality of life; existence of ACP or advance directives; the consistence of end of life care; and others. Patients will be followed up for 13 months. Multivariate analyses will be carried out. Qualitative evaluation of the intervention will be conducted. DISCUSSION: Augmentation of a regular ACP program by a structured psycho-oncological intervention is an innovative approach to target barriers of communication about end-of-life issues. Study findings will help to understand the value of such a combined intervention in palliative care. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03387436 (Date of registration: 01/02/2018, retrospectively registered.


Assuntos
Planejamento Antecipado de Cuidados/normas , Protocolos Clínicos , Neoplasias/psicologia , Participação do Paciente/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Participação do Paciente/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e Questionários
15.
Int J Nurs Stud ; 107: 103576, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32380259

RESUMO

BACKGROUND: End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia. DESIGN: Evidence synthesis including systematic reviews and primary studies. PROSPERO registration: CRD42018107718. DATA SOURCES: PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library were searched (July 2018). No year limit applied. To be included, reviews had to evaluate effectiveness of ACP for people with dementia or report on views and experiences of ACP from the perspective of people with dementia, carers, or health and care professionals. Additional searches (September 2018) were conducted to identify recent primary studies not included in the reviews. REVIEW METHODS: Data extraction was undertaken by one reviewer and checked by a second. Methodological quality was assessed using AMSTAR-2 and Joanna Briggs Institute instruments by two authors independently. Outcomes were categorized and tabulated to assess effectiveness. Qualitative data was analysed using thematic synthesis. RESULTS: Nineteen reviews (163 unique studies) and 11 primary articles with a range of advance care planning definitions and of variable quality were included. Advance care planning was associated with decreased hospitalizations, increased concordance between care received and prior wishes and increased completion of advance care planning documents but quality of primary research was variable. Views of ACP for people with dementia can be clustered around six themes; 1) timing and tailoring, 2) willingness to engage, 3) roles and responsibilities of healthcare professionals, 4) relationships, 5) training and 6) resources needed. Diminishing decision-making capacity over time is a key overarching feature. CONCLUSIONS: Advance care planning is acceptable for people with dementia and their carers and is associated with improved outcomes. Guidelines on which outcomes and which definition to use are necessary, as is research to test different approaches to ACP. Education on topics related to diminishing decision-making capacity is key to optimize advance care planning for people with dementia and their carers.


Assuntos
Planejamento Antecipado de Cuidados/normas , Demência/terapia , Demência/psicologia , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas
16.
J Clin Oncol ; 38(9): 852-865, 2020 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-32023157

RESUMO

Palliative care has evolved over the past five decades as an interprofessional specialty to improve quality of life and quality of care for patients with cancer and their families. Existing evidence supports that timely involvement of specialist palliative care teams can enhance the care delivered by oncology teams. This review provides a state-of-the-science synopsis of the literature that supports each of the five clinical models of specialist palliative care delivery, including outpatient clinics, inpatient consultation teams, acute palliative care units, community-based palliative care, and hospice care. The roles of embedded clinics, nurse-led models, telehealth interventions, and primary palliative care also will be discussed. Outpatient clinics represent the key point of entry for timely access to palliative care. In this setting, patient care can be enhanced longitudinally through impeccable symptom management, monitoring, education, and advance care planning. Inpatient consultation teams provide expert symptom management and facilitate discharge planning for acutely symptomatic hospitalized patients. Patients with the highest level of distress and complexity may benefit from an admission to acute palliative care units. In contrast, community-based palliative care and hospice care are more appropriate for patients with a poor performance status and low to moderate symptom burden. Each of these five models of specialist palliative care serve a different patient population along the disease continuum and complement one another to provide comprehensive supportive care. Additional research is needed to define the standards for palliative care interventions and to refine the models to further improve access to quality palliative care.


Assuntos
Planejamento Antecipado de Cuidados/normas , Prestação Integrada de Cuidados de Saúde/organização & administração , Modelos Organizacionais , Neoplasias/terapia , Cuidados Paliativos/normas , Equipe de Assistência ao Paciente/normas , Qualidade da Assistência à Saúde/normas , Gerenciamento Clínico , Humanos
17.
J Clin Oncol ; 38(9): 885-904, 2020 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-32023159

RESUMO

A growing body of research demonstrates the feasibility and efficacy of psychological interventions for adult patients with advanced cancer. Findings from quantitative studies of psychotherapeutic interventions with primary psychological outcomes for such patients are reviewed here and recommendations for best practice are made. We consider these interventions according to three broad phases in which they are most commonly applied: soon after diagnosis of advanced cancer, when living with the disease, and at or near the end of life. Cumulative evidence from well-designed studies demonstrates the efficacy of psychosocial interventions for patients with advanced disease to relieve and prevent depression, anxiety, and distress related to dying and death, as well as to enhance the sense of meaning and preparation for end of life. Individual and couple-based interventions have been proven to be most feasible, and the development and use of tailored and validated measures has enhanced the rigor of research and clinical care. Palliative care nurses and physicians can be trained to deliver many such interventions, but a core of psychosocial clinicians, including social workers, psychologists, and psychiatrists, is usually required to train other health professionals in their delivery and to ensure their quality. Few of the interventions for which there is evidence of effectiveness have been routinely incorporated into oncology or palliative care. Advocacy on the basis of this evidence is required to build psychosocial resources in cancer treatment settings and to ensure that psychological care receives the same priority as other aspects of palliative care in oncology.


Assuntos
Planejamento Antecipado de Cuidados/normas , Atenção à Saúde/normas , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/normas , Estresse Psicológico/terapia , Adulto , Humanos , Qualidade de Vida
18.
J Clin Oncol ; 38(9): 987-994, 2020 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-32023165

RESUMO

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.


Assuntos
Planejamento Antecipado de Cuidados/normas , Prestação Integrada de Cuidados de Saúde/organização & administração , Modelos Organizacionais , Neoplasias/terapia , Cuidados Paliativos/normas , Guias de Prática Clínica como Assunto/normas , Qualidade da Assistência à Saúde/normas , Gerenciamento Clínico , Humanos
19.
Respir Med Res ; 77: 11-17, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31927479

RESUMO

BACKGROUND: End-of-life (EOL) communication is crucial, particularly for cancer patients. While advanced care planning is still uncommon, we sought to investigate its impact on care intensity in case of organ failure in lung cancer patients. METHODS: We prospectively included consecutive lung cancer patients hospitalised at the Grenoble University Hospital, France, between January 1, 2014 and March 31, 2016. Patients could be admitted several times and benefited from advanced care planning based on three care intensities: intensive care, maximal medical care, and exclusive palliative care. Patients' wishes were addressed. RESULTS: Data of 739 hospitalisations concerning 482 patients were studied. During the three first admissions, 173 (25%) patients developed organ failure, with intensive care proposed to 56 (32%), maximal medical care to 104 (60%), and exclusive palliative care to 13 (8%). Median time to organ failure was 9 days [IQR 25%-75%: 3-13]. All patients benefited from care intensity that was either equal to or lower than the care proposed. Specific wishes were recorded for 158 (91%) patients, with a discussion about EOL conditions held in 116 (73%). CONCLUSIONS: In case of organ failure, advanced care planning helps provide reasonable care intensity. The role of the patient's wishes as to the proposed care must be further investigated. CLINICAL TRIAL REGISTRATION: The study was registered at www.ClinicalTrials.gov with the identifier NCT02852629.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias Pulmonares/terapia , Planejamento Antecipado de Cuidados/organização & administração , Planejamento Antecipado de Cuidados/normas , Idoso , Atitude Frente a Morte , Comunicação , Cuidados Críticos/organização & administração , Cuidados Críticos/normas , Cuidados Críticos/estatística & dados numéricos , Feminino , França/epidemiologia , Fidelidade a Diretrizes/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Humanos , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/patologia , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/organização & administração , Cuidados Paliativos/normas , Cuidados Paliativos/estatística & dados numéricos , Relações Médico-Paciente , Estudos Prospectivos , Assistência Terminal/organização & administração , Assistência Terminal/normas , Assistência Terminal/estatística & dados numéricos
20.
Support Care Cancer ; 28(10): 4667-4675, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31955277

RESUMO

PURPOSE: Patients with advanced cancer often receive suboptimal end-of-life (EOL) care. Particularly males with advanced cancer are more likely to receive EOL care that is more aggressive, even if death is imminent. Critical factors determining EOL care are EOL conversations or advance care planning. However, information about gender-related factors influencing EOL conversations is lacking. Therefore, the current study investigates gender differences concerning the content, the desired time point, and the mode of initiation of EOL conversations in cancer patients. METHODS: In a cross-sectional study, 186 female and male cancer patients were asked about their preferences for EOL discussions using a semi-structured interview, focusing on (a) the importance of six different topics (medical and nursing care, organizational, emotional, social, and spiritual/religious aspects), (b) the desired time point, and (c) the mode of discussion initiation. RESULTS: The importance of EOL topics differs significantly regarding issue (p = 0.002, η2 = 0.02) and gender (p < 0.001, η2 = 0.11). Males wish to avoid the engagement in discussions about death and dying particularly if they are anxious about their end-of-life period. They wish to be addressed regarding the "hard facts" nursing and medical care only. In contrast, females prefer to speak more about "soft facts" and to be addressed about each EOL topic. Independent of gender, the majority of patients prefer to talk rather late: when the disease is getting worse (58%), at the end of their therapy, or when loosing self-sufficiency (27.5%). CONCLUSION: The tendency of patients to talk late about EOL issues increases the risk of delayed or missed EOL conversations, which may be due to a knowledge gap regarding the possibility of disease-associated incapability. Furthermore, there are significant gender differences influencing the access to EOL conversations. Therefore, for daily clinical routine, we suggest an early two-step, gender-sensitive approach to end-of-life conversations.


Assuntos
Planejamento Antecipado de Cuidados/normas , Neoplasias/psicologia , Assistência Terminal/psicologia , Estudos Transversais , Feminino , Identidade de Gênero , Humanos , Masculino
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