Palliative Medicine最新文献

Background: Evidence based guidelines for treatment of physical symptoms during the last days of life in older people are not available.

Aim: We wanted to synthesize the existing evidence on the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting during the last days of life in older people to develop recommendations that can help guide clinical practice.

Design: A systematic review was conducted (PROSPERO #CRD42023406100) and reported in accordance with PRISMA guidelines.

Data sources: MEDLINE and EMBASE were searched from inception till March 2023, together with national and international guideline databases.

Results: Four predominantly descriptive studies on opioid use were included for the treatment of pain and four for dyspnea, without clear evidence for the choice of one specific opioid, nor a specific opioid dose. For death rattle, five randomized controlled trials and two retrospective studies were included. These provide evidence for the prophylactic treatment of death rattle with hyoscine butylbromide. For fever, nausea, and vomiting, no articles met the inclusion criteria.

Conclusion: Limited evidence exists to guide the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life of older people. Other than the use of opioids for treatment of pain and dyspnea and prophylactic administration of hyoscine butylbromide to decrease the likelihood of developing death rattle, no specific recommendations can be formulated for use in clinical practice. This demonstrates the challenging nature of research in the last days of life of older people, despite its pressing need.

Background: In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning.

Aim: To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia.

Design: A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0-1 were considered very strong agreement and very strong consensus, respectively.

Setting/participants: The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan).

Results: Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as "a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate." Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus.

Conclusions: Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care.

Background: The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial.

Aim: To explore how patients and families navigate palliative care and the problems they experience.

Design: An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis.

Setting/participants: Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia.

The analysis: Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices.

Conclusions: Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.

Background: The limited palliative care evidence base is poorly amenable to existing grading schemes utilized in guidelines. Many recommendations are based on expert consensus or clinical practice standards, which are often considered 'low-quality' evidence. Reinforcing provider hesitancy in translating recommendations to practice has implications for patient care.

Aim: To rationalize the selection of an appropriate grading system for rating evidence to support recommendations made in palliative care clinical practice guidelines.

Design: Review of the methodology sections of international palliative care guidelines published in English identified five grading systems comparison: Grading of Recommendations, Assessment, Development and Evaluations (GRADE); the Scottish Intercollegiate Guidelines Network (SIGN); Infectious Diseases Society of America-European Society for Medical Oncology (IDSA-ESMO); Confidence in the Evidence from Reviews of Qualitative research (CERQual) and the National Service Framework for Long Term Conditions (NSF-LTC).

Results: There is heterogeneity among grading systems used in published palliative care or terminal symptom management guidelines. GRADE has been increasingly adopted for its methodological rigour and inter-guideline consistency with other medical associations. CERQual has the potential to support recommendations informed by qualitative evidence, but its role in clinical guidelines is less defined. The IDSA-ESMO system has an intuitive typology with the ability to categorize tiers of lower-quality evidence.

Conclusions: It is challenging to apply commonly used grading systems to the palliative care evidence base, which often lacks robust randomized controlled trials (RCTs). Adoption of IDSA-ESMO offers a feasible and practical alternative for lower-resourced guideline developers and palliative clinicians without a prerequisite for methodological expertise.

Background: Adequate death preparation positively influences families' experience before death and during bereavement. However, how to prepare families in non-Western cultures has received scant attention.

Aim: To explore family caregivers' experiences in preparing for a relative's death in specialist palliative care in Taiwan.

Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured interviews was conducted.

Setting/participants: Twenty-two family caregivers from seven hospitals participated.

Results: The overarching theme was 'getting everything right to have no regrets between the dead and the living'. We developed two themes to explain preparations for the time surrounding and after the death, including the deceased' afterlife: (1) 'having a good ending but not the end of the relationship', which addresses preparations for the death itself, the funeral, the afterlife and maintaining connections and (2) 'using religious beliefs and cultural norms to guide preparation', which explores perceptions of a good death, including refrain from strong emotions before and after the death.

Conclusion: Funeral arrangements, enhancing the deceased's afterlife and maintaining connections to the deceased are crucial for families' experiences which can be impacted by actions they take as they prepare for the death. A culturally appropriate death is beneficial for the dying relative which includes preparing to not show strong emotions during and after the death. These insights inform the importance of the cultural context in death preparation in Taiwan and provide perspectives for palliative care beyond Western culture, potentially benefiting Chinese populations, predominantly East Asian and Buddhist societies.

Background: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is usually only offered in low-risk pregnancies.

Case: A couple who received an antenatal diagnosis of hypoplastic left heart syndrome and who had made a plan to provide palliative care to their baby after birth requested the option of a home birth.

Possible courses of action: Recommend birth at hospital or explore the possibility of a home birth with perinatal palliative care support.

Formulation of a plan: Multidisciplinary discussion and collaboration enabled a plan for home birth to be made which anticipated potential complications.

Outcome: The baby was born at home and died on day 5 of life receiving outreach nursing, paediatric and palliative care support and buccal and oral opioids for symptom management. We include reflections from the family on the importance of this experience.

Lessons: We provide a list of potential criteria for considering home birth in the setting of perinatal palliative care.

View: Facilitating a home birth in the setting of perinatal palliative care is an option that can be hugely valued by families, but this service may be practically difficult to deliver in many contexts. Further research is needed to understand the preferences of women and families receiving perinatal palliative care.

Background: Implementing shared decision-making in oncology practice is often limited, particularly integrating the patient's context into decision-making. To improve this, we conducted a quality improvement project, CONtext. CONtext attempts to accomplish this by: (1) Integrating the patient's context into shared decision-making during consultation with the medical oncologist; (2) Actively involving the GP and case manager (a specialized oncology nurse), who often have knowledge about the patient's context, and; (3) Giving the person with advanced cancer a time-out period of up to 2 weeks to consider and discuss treatment options with others, including close family and friends.

Aim: To explore how persons with advanced cancer and their involved professionals experienced shared decision-making after the introduction of CONtext.

Design: A qualitative embedded multiple-case study using in-depth interviews analysed with inductive content analysis.

Participants: A purposive sample of 14 cases, each case consisting of a patient with advanced cancer and ideally their medical oncologist, case manager, and GP.

Results: Four themes were identified: shared decision-making is a dynamic and continuous process (1), in which the medical oncologist's treatment recommendation is central (2), fuelled by the patients' experience of not having a choice (3), and integrating the patient's context into shared decision-making was considered important but hampered (4), for example, by the association with the terminal phase.

Conclusions: The prevailing tendency among medical oncologists and persons with advanced cancer to prioritize life-prolonging anticancer treatments restricts the potential for shared decision-making. This undermines integrating individual context into decision-making, a critical aspect of the palliative care continuum.

Background: Healthcare providers working in hospitals have significant exposure to patients with palliative care needs. For many patients, these needs often reflect non-specialist rather than specialist palliative care needs. Embedding a palliative care approach in acute hospital-based care however is challenging.

Aim: To identify core indicators for the integration of a palliative care approach in hospitals.

Design: A Delphi technique used three sequential online survey rounds. Preliminary indicators were identified in a concept analysis of a palliative care approach, and a systematic review of hospital-based healthcare providers' views of a palliative care approach.

Participants: An international expert panel of three key stakeholder groups (clinicians, researchers, patients/family members) participated in each Delphi round.

Results: The Delphi participants were recruited from 12 countries; 97 individuals responded to round 1, 78 to round 2 and 72 to round 3 (74% overall response rate). Consensus was achieved (defined a priori as >70%) on 32 core indicators of a hospital-based palliative care approach, with five structural indicators (relating to infrastructure and governance), 21 organisational indicators (relating to clinical care processes) and six staff indicators (relating to training and support for healthcare providers).

Conclusions: This study offers multi-level guidance for clinical practice, policy and research related to integration of a palliative care approach in hospitals, based on evidence and international consensus from major stakeholder groups. These core indicators provide a means to assess, review and communicate the core elements of a palliative care approach in hospitals.

Background: Rural areas frequently encounter restricted access to healthcare and end-of-life services. Given current pressing realities, understanding their unique perspectives on what constitutes a good death is essential. Existing research has largely overlooked the voices of rural residents.

Aim: To obtain a more comprehensive understanding of rural residents' expectations regarding a good death.

Design: A meta-synthesis. By exploring the logic within relevant content, the stages of the life course serve as the framework for integration.

Data sources: PubMed, Web of Science Core Collection, Embase, Cochrane Library, CINAHL (EBSCO), PsycINFO (EBSCO), China National Knowledge Infrastructure (CNKI), WanFang, and China Biology Medicine disc (CBM) were systematically searched from their inception to May 2023.

Result: Of the 1100 articles retrieved, 8 studies were included. This paper outlines "the path to a rural good death": (1) When death is perceived as distant: acknowledge its inevitability while striving to achieve a successful and complete life journey. (2) As death approaches: maintain composure and have the capacity and support to face it. (3) When death truly arrives: depart in an envisioned scenario. (4) What's left behind: be properly arranged.

Conclusion: The essential characteristics of a rural good death align with previous interpretations. However, distinct aspects emerge: communities play a significant role, characterized by reciprocal relationships; the role of medicine is less emphasized; and "rurality" deeply shapes residents' expectations of a good death. The pathway to a good death presented in this article is aspirational, requiring collaborative efforts to make it a tangible reality.

Background: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation.

Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems.

Design: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation.

Participants: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities).

Results: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated.

Conclusions: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.