Palliative Care and Social Practice最新文献

Background: The practice of palliative sedation (PS) in end-of-life care has generated significant debate due to concerns about improper application and communication issues. Previous efforts to assess and enhance the practice have often focused on single outcomes, resulting in incomplete evaluations. There is currently no consensus on the core outcomes needed to assess PS effectively.

Aim: This study aims to develop a core outcome set (COS) for PS in end-of-life care to enable comprehensive evaluation and improve clinical practice.

Design: The study follows the four-stage Core Outcome Measures in Effectiveness Trials (COMET) initiative approach to develop the set of core outcomes.

Methods and analysis: First, we will conduct a scoping review to identify potentially relevant outcomes reported in existing peer-reviewed and gray literature. Second, we will employ qualitative methods to explore outcomes valued by patients, their proxies, and healthcare professionals. Third, experts, including researchers, healthcare providers and bereaved relatives, and patient advocates will assess the importance of these outcomes through a Delphi study. Finally, a consensus meeting with stakeholder representatives will refine the COS. Concurrently, measurement instruments for these core outcomes will be identified.

Ethics: Ethical clearance was obtained by the Ghent University Hospital Ethics Committee for the whole study (ONZ-2023-0050).

Discussion: This study is crucial for establishing a gold-standard measurement instrument to evaluate the multifaceted practice of PS in all its complexity. Providing a standardized set of outcomes will facilitate the design and evaluation of clinical trials, support effective quality improvement initiatives, and inform evidence-based decision-making in healthcare. Engaging all key stakeholders, including dying persons and their families, significantly improving patient care. Furthermore, internationally validated, clinically relevant endpoints will further strengthen research impact and promote consistent, high-quality PS practices worldwide.

Background: Physicians play a key role in end-of-life decision-making. As research suggests a connection between physicians' personal end-of-life preferences and their clinical practice, it is important to understand what physicians want for themselves at the end of life and what has shaped their preferences.

Objective: To explore what physicians have considered for their end-of-life preferences, including life-sustaining and life-shortening practices, and their perceptions of the socio-cultural factors that influence their preferences.

Design: Qualitative study using in-depth interviews.

Methods: Forty-five interviews were conducted from January to November 2022 using a semi-structured interview guide. Participants included three types of physicians: general practitioners, palliative care physicians, and other medical specialists in Belgium (Flanders), Italy, and the United States (Wisconsin). Data collection and analysis were informed using the reflexive thematic analysis approach. Audio recordings were transcribed verbatim and NVivo 14 was used for coding and analysis. Consolidated criteria for reporting qualitative research (COREQ) were followed.

Results: We found physicians, particularly those in palliative care, have reflected on their end-of-life preferences and have ideas about what constitutes a good death and what they hope to avoid. Most physicians prefer to avoid aggressive and life-prolonging treatment, physical and mental suffering, and being a burden. They prioritize being in a peaceful environment and communication with loved ones. Various factors influence preferences including cultural, social, and religious beliefs, and legislative environment, but most significant are the deaths of loved ones and clinical practice. Death and dying become normalized the more they are reflected upon and discussed, and this process can also provide personal growth which helps physicians provide better care to patients and families.

Conclusion: Physicians have reflected on their end-of-life preferences and prefer a peaceful end of life without aggressive and life-prolonging treatment. Physicians' views on end-of-life practices are influenced by evolving cultural and societal norms and legal and ethical factors.

Situations wherein a patient refuses potentially important information present tricky ethical challenges for palliative care staff. This critical essay looks to both mainstream bioethics and the palliative care ethos for recommendations on whether or not to provide information in such situations. Such cases highlight controversies surrounding autonomy within mainstream bioethics, making the latter an unlikely source of clear and coherent guidance on this specific topic. The palliative care ethos, as presented by authors within the palliative care community claiming to (re)present such an ethos, may be a more promising source for practical and ethical recommendations. Eleven aspects of the palliative care ethos that may be relevant for such situations are presented, and their implications, individually and collectively, are summarised. Taken as a whole, the palliative care ethos seems to recommend a strategy of using communication skills and time to try to get information across to the patient without forcing things. The recommendation is nuanced and highly contextualised, which increases its validity for clinical practice. Some meta-ethical questions are discussed regarding the use of the palliative care ethos as a source of guidance in ethically challenging clinical situations. All in all, probing the palliative care ethos for practical guidance is an interesting possibility that deserves further ethical and practical reflection.

Background: Dignity is a cornerstone of end-of-life (EoL) care, particularly in Home Hospice (HH) settings, where most patients wish to spend their final days. Despite HH staff's crucial role in preserving EoL dignity and their unique challenges, their views of EoL dignity remain underexplored. Moreover, the limited research draws on declarative descriptions, failing to capture the dynamic nature of EoL dignity as embedded in daily practice.

Objectives: To address these gaps, we aimed to identify EoL dignity values and strategies embedded in HH staff's narratives on (in)dignity in their daily practice, that is, dignity-in-action.

Design: Qualitative research using narrative methodology.

Methods: Drawing on the narrative research paradigm, 17 multidisciplinary HH staff members recounted cases of dignity or indignity in HH. An inductive, holistic content analysis of 32 narratives identified 48 endpoints illustrating (in)dignity incidents. These endpoints were analyzed to determine dignity values and the strategies used to uphold them. Finally, the endpoints were categorized by dignity values, strategies, and relations-who provided (in)dignity to whom.

Results: The narratives presented HH staff as primary dignity providers, often identifying family members as sources of dignity violations. Dignity was framed around two core values, each upheld by three strategies. Autonomy was maintained by respecting patients' and families' preferences regarding care, staff-patient relationships, and coping strategies. Individuality was upheld by acknowledging and respecting the person beyond their patient status, honoring patients' and families' unique identities, and acknowledging and respecting patients' body image.

Conclusion: HH care presents unique challenges in preserving EoL dignity but also offers opportunities for dignity-centered care. Respecting patients' and families' autonomy and individuality through targeted strategies can enhance dignified care. These insights underscore the need to embed dignity-preserving strategies into HH protocols and promote reflective training to heighten staff awareness of dignity violations while reinforcing their strengths in upholding patient and family dignity.

Background: The need to improve equity of access to palliative care is well recognized; however, much less is known about how new models of hospice community services can be successfully introduced.

Aim: We aimed to capture learning from the implementation experiences of hospice stakeholders during the first 12 months of a hospice community services redesign.

Design: Qualitative research using individual semi-structured interviews (n = 38) and follow-up focus groups (n = 8).

Methods: Participants were clinical and non-clinical staff, hospice leaders, volunteers, and external stakeholders. Interviews were analysed with framework analysis using Normalisation Process Theory. Focus groups were used to confirm and prioritise recommendations.

Results: Implementation is more likely to be successful where hospice personnel are enabled to work together in understanding and adapting to new ways of working. Participants gave examples of being supported to plan activities, to form networks of participation, to pilot new ways of working, and to appraise and improve their work. Receiving feedback on progress is beneficial. Implementation strategies that are tailored to each context could be effective if they engage with hospice stakeholders to ensure that strategic aims are well-understood and that the necessary resources are available. Positive experiences of implementation are more likely where stakeholders understand the changes and can participate in planning. Where necessary, changes to human resources and technology support systems would ideally be adopted prior to making changes to patient-facing services.

Conclusion: This study contributes knowledge from a charitable provider of specialist palliative care during the implementation of a hospice community service redesign. We identified opportunities for future improvement, particularly regarding communication, planning, prioritisation, and feedback. Investment of time and reflection during implementation can support the ambition of hospices to become integrated within a place-based system, to improve access to palliative care within the communities they serve. We report key implementation recommendations for organisations considering service redesign.

Background: Patients with advanced cancer often experience symptoms between clinic visits, leading to emergency department admissions. Integrating patient-reported outcome measures into care could enhance symptom monitoring and support.

Aim: This study assesses the feasibility and efficacy of the SUPPORT+ app for monitoring symptoms and providing timely interventions for patients with advanced cancer.

Design: In this prospective feasibility study, patients used the SUPPORT+ app for weekly symptom monitoring over 16 weeks. Participants received self-management advice from the app and timely remote consultations from palliative care nurses. Assessments included questionnaires on psychological stress, app satisfaction, and palliative care knowledge, with medical records reviewed for emergency department visits and unplanned hospitalizations.

Setting and participants: Patients with advanced cancer receiving community palliative care and owning smartphones were recruited from an outpatient palliative care clinic at a university hospital in Hong Kong.

Results: A total of 109 patients were recruited, with 84 completing the study (retention rate: 78.4%). Over 90% reported their symptoms weekly. Significant increases were noted in advance directive completion (9.5% vs 22.6%, p = 0.047) and discussions on preferred places of dying (14.3% vs 28.6%, p = 0.044), alongside a decrease in depression scores (8.4-6.7, p = 0.024). Most participants found the app easy to use and reported positive health effects.

Conclusion: The SUPPORT+ app demonstrated feasibility and acceptability in facilitating end-of-life communication, increasing advance directive completion, and potentially reducing depression in patients with advanced cancer. Further research, including randomized controlled trials, is needed to establish its efficacy.

Background: In Spain, there are between 300,000 and 370,000 people with palliative care needs, and it is believed that fewer than 50% can access them. The current challenge is to combat inequities in access to palliative care resources in the rural environment through training, greater provision of material and human resources, and the involvement of health system managers.

Main objective: To determine the effectiveness of an educational community intervention on knowledge of care for nonformal caregivers in a rural area.

Design: A quasi-experimental pretest-posttest study with a control group will be conducted in Isso's primary care setting (Albacete).

Methods and analysis: The sample calculation was performed with the GRANMO program (version 8.0, 2024) with 80 caregivers. The dependent variables will be caregiver support, quality of life, and knowledge of palliative care. The IBM SPSS Statistics version 28 program will be used for statistical analysis. Instruments used were the abbreviated Zarit scale, EuroQol 5D, Goldberg, and PaCKs.

Discussion: Improving the overload in care of the main caregiver of people with palliative care, since it negatively affects health and improves the well-being of informal caregivers.

Conclusion: If schools for caregivers were implemented in other health centers or clinics accessible to the population, the empowerment of these people could be improved by reducing costs and enhancing experiences in care.

Ethics: The protocol was approved by the social research ethics committee of the University of Castilla-la Mancha with reference number CEIS-2024-21094 and by the drug research ethics committee of the Gerencia de Atención Integrada de Albacete with code No. 2024-003.

Background: Familial and social support for patients with life-limiting conditions is crucial, especially in resource-poor settings. However, limited knowledge exists about patients' and caregivers' experiences within these informal networks in such contexts.

Aims: This systematic review aimed to (i) synthesise the experiences of patients and caregivers regarding familial and social support in resource-poor settings, and (ii) understand the challenges they face in order to provide evidence for more compassionate, culturally congruent palliative care.

Design: Systematic review and meta-synthesis registered on PROSPERO (CRD42023486219).

Methods: We searched CINAHL, MEDLINE, PsycINFO, and Scopus using keywords such as "familial and social support" and "chronic debilitating conditions" in low- and middle-income countries. Only English-language qualitative studies exploring familial and social support were included. Thomas and Harden's approach was used for data synthesis, and the Joanna Briggs Institute's critical appraisal checklist was used to assess the studies' quality.

Results: We report our findings using the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Following screening, 39 studies were retained from 9157 search results. Five key themes emerged: (1) Bearing the weight of financial strain; (2) Psychosocial support as a "lifeline" for care; (3) Hands-on help and guidance; (4) Cultural and social obligations; and (5) Developing a "thick skin" and having faith as a coping mechanism. The findings show that caregiving in the context of life-limiting illnesses is influenced by financial burdens, emotional challenges, and cultural obligations, with caregivers depending on spiritual and social networks. However, resource availability is inconsistent, underscoring the need for tailored interventions.

Conclusion: Culturally specific palliative care strategies are necessary to ease caregiver burdens, improve resource distribution, and support the well-being of patients and caregivers in resource-poor settings.