Palliative Care and Social Practice最新文献

Death literacy is an emerging concept within academic and social spheres, reflecting increasing recognition that people need to be better prepared for death and dying. The extent to which key features of death literacy are embedded in policies indicates how death and dying are framed and prioritised. Therefore, how the term 'death literacy' and its components have been adopted in UK governments' policies required exploration. This study aimed to analyse post-2015 UK state-level (Westminster) and national (England, Northern Ireland, Scotland and Wales) policies to explore how death literacy is framed and described. A document analysis of policies was conducted using the READ approach, comprising reading materials, data extraction, data analysis and distilling the findings. UK and national governments' and health services' websites were searched. A thematic policy analysis was conducted, mapping content to Noonan et al. - features of death literacy (knowledge, skills, experiential learning and social action). Key findings were outlined in a narrative format. Initially, 11,063 records were screened, 59 documents were eligible for data extraction and a final 22 papers were selected. Findings included that death literacy was not explicitly referenced, despite key features of death literacy being present. These elements focused on knowledge and skills relating to death and dying, including publics', caregivers' and professionals' understanding of end-of-life processes, predominantly relating to the skills of healthcare professionals. The policies also incorporated social action through community engagement and support. Elements of experiential learning, including coproduction of health services, were only referred to minimally. Despite no explicit reference to death literacy, key features were evident within UK policies, which focused on knowledge and skills relating to death and dying through palliative and end-of-life care processes. Future policies should explicitly outline a consolidated approach to death literacy, with the aim of improving experiences and preparedness relating to death, dying and end-of-life. These should embed strategies to implement multi-level, cross-departmental, and new public health approaches that addresses systemic inequalities, and to enhance experiential and socially focused initiatives.

Due to the COVID-19 pandemic, various infection control measures were introduced that had a profound effect on caregiving dynamics and created burdens in the daily lives of informal caregivers (ICs). A scoping review was conducted to identify burden and support factors for ICs during and beyond the pandemic. Studies were included when they examined ICs' care work during the official time period of the COVID-19 pandemic (March 2020-May 2023) and care hours worked per day or week were specified. Only studies with adult participants and studies in German or English language were incorporated. The scoping review considered quantitative cross-sectional and longitudinal studies involving randomized/quasi-randomized controlled trials, cohort studies, case studies, mixed-methods, and qualitative studies as well as reviews and meta-analyses. The electronic databases PubMed, the Cochrane COVID-19 Study Register, and EBSCO Host were systematically searched. The search was limited to articles published between 2020 and 2024. The scoping review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews. Overall, 42 studies with 51,183individuals met the inclusion criteria and were included in the scoping review. Main findings suggested that the pandemic-related measures caused additional care burden for ICs and worsened the already poor situation of informal care. In particular, the lack of support from health services and the increase in care hours were described as burdensome. Additionally, studies indicated an increase in rates of depression and overall poor mental health, particularly affecting female ICs. Social and formal care support were mentioned as main support factors. Consequently, preparation of future crises should focus on formal health services and structures to promote social support and mental health of ICs during pandemics.

Background: Advance care planning (ACP) has become central to end-of-life policy in Japan, aiming to uphold autonomy and dignity. However, conceptual confusion about its ethical and legal foundations risks promoting a procedural rather than ethically grounded approach to ACP.

Aims: This study aimed to (1) assess healthcare professionals' knowledge of ethical and legal concepts in medical decision-making, (2) examine how patient autonomy is respected through clinical vignettes, and (3) identify factors associated with respect for autonomy.

Design: Cross-sectional questionnaire survey.

Methods: Healthcare professionals (n = 549) in a Tokyo geriatric hospital completed measures of attitudes toward and experiences with end-of-life care, knowledge of legislation and ethical concepts underlying medical decision-making, and response to two clinical vignettes depicting decision-making dilemmas. Analyses included descriptive statistics, comparisons across occupational groups, and multivariate regression to identify factors associated with respect for patient autonomy.

Results: Misconceptions were common: 38% of participants equated ACP exclusively with decisions to forgo active treatment, and many conflated ACP with current rather than future-oriented care planning. The vignette study further demonstrated that a dementia diagnosis alone reduced respect for patient preferences in 27.8% of cases. Ethical dilemmas frequently arose when ACP was applied in practice, especially regarding withholding or withdrawing treatment, suggesting that ACP does not necessarily resolve such dilemmas and may generate new ones in some cases. Two independent factors related to greater respect for patient autonomy were identified: greater knowledge of ethical concepts and personal experience witnessing harm from insufficient medical intervention.

Conclusion: ACP policies in Japan have advanced more rapidly than healthcare professionals' ethical and legal understanding, risking procedural rather than ethically grounded practice. Systematic, cross-professional education integrating legal literacy, ethical reasoning, and reflective learning is essential to ensure that ACP genuinely safeguards patients' rights and supports ethically sound decision-making.

Background: Pain relief is a fundamental human right, yet evidence suggests access to analgesia is not equitably distributed. People with severe mental illness (SMI) experience significant disparities in healthcare during life, which may also be mirrored at the end of life. This systematic review examines the extent of inequities and underlying factors contributing to disparities in pain care for people with SMI and life-threatening diseases.

Methods: A mixed-methods systematic review of MEDLINE, EMBASE, AMED, CINAHL, PsycINFO and EThOS (January 2000-September 2024), hand-searching key journals and citation tracking. Two reviewers independently screened studies, and data were extracted using a standardised approach. A narrative synthesis was used to integrate findings.

Results: Two thousand nine hundred seven records were identified, with eight studies meeting the inclusion criteria. Study quality ranged from 'very low' to 'high'. All quantitative studies were retrospective analyses of routine healthcare data, examining analgesic prescribing for people with schizophrenia. Despite variability in outcome measures, all studies found that individuals with schizophrenia received significantly less analgesia than those without SMI. Four qualitative studies explored clinicians' views on providing pain care to patients with SMI; only one study included patient experiences. Identified barriers to optimal pain management included patient-related factors (e.g. difficulties in pain expression, behavioural symptoms), clinician-related factors (e.g. diagnostic overshadowing, stigma) and systemic issues (e.g. fragmented care, restrictive prescribing practices).

Conclusion: There is a striking lack of research on pain assessment and management for people with SMI and life-threatening illnesses, yet available evidence indicates clear inequities in care. These disparities may be driven by intersecting structural, social and clinical barriers, contributing to poorer end-of-life experiences. Addressing this gap requires urgent action from clinicians, policymakers and researchers. Future work should combine population-based studies to quantify prescribing disparities with qualitative research involving people with lived experience of SMI and their carers. Participatory, co-produced approaches are essential.

Background: A cancer diagnosis and its treatment can profoundly disrupt an individual's life, often prompting a reevaluation of personal goals, relationships, and self-identity. Qualitative research has documented experiences of emotional transformation, altered life priorities, and personal growth in cancer survivors. Many struggle to maintain normalcy while adapting to a reality shaped by the illness. This study is motivated by a critical gap in cancer care, that is, a holistic understanding of patients' lived experiences in their journey. The study aimed to explore key aspects of cancer patients' experiences, including disease-related factors, as well as their psychosocial and emotional transitions over time.

Methods: A qualitative research design was adopted using in-depth interviews (life course transition approach). The study employed a life course perspective to examine the cancer journey across three primary thematic phases: (a) Initial diagnosis-exploring both the negative and positive impacts of receiving a cancer diagnosis; (b) Confinement and restrictions-addressing the emotional and psychological effects following diagnosis, including lifestyle changes and limitations; and (c) Obstacles of the cancer journey-identifying ongoing challenges during treatment and survivorship. Each phase encapsulated a range of biopsychosocial factors (codes), which were categorized as either negative (e.g., deterioration of health, treatment side effects, emotional distress, financial burden) or positive (e.g., support from family, friends, and healthcare providers that foster resilience and coping).

Results: The study revealed that the cancer journey unfolds in distinct yet interconnected phases starting from diagnosis, and carried through treatment, survivorship, and end-of-life care. Each phase presents a set of unique challenges and thus the corresponding transitions in the life course. Psychosocioeconomic dimensions, particularly social support, stigma, sense of contagion, individual coping mechanisms resilience, role of health insurance have emerged as pivotal in influencing patients' health trajectories. Importantly, effective communication with healthcare providers and the consistent delivery of patient-centered care facilitate smoother transitions.

Conclusion: This research highlights the critical role of psychosocial and financial determinants and the importance of phase-to-phase continuity in cancer care. The findings underscore that effective healthcare communication and a patient-centered approach are essential for supporting patients through the evolving complexities of their cancer journey.

Background: Many people still lack a clear understanding of what palliative care is and the value it brings. Although recognized by the World Health Organization as a fundamental human right, palliative care remains inaccessible to many. This lack of awareness and genuine understanding hinders its integration into health systems. Art-and theatre in particular-can offer innovative ways to connect with the public.

Objective: To explore how a theatrical performance about the origins of palliative care can influence students' understanding and attitudes.

Design: A qualitative descriptive study with an interpretivist approach.

Methods: The study examined the impact of the play Cicely and David on university students. The play dramatizes the early development of palliative care through imagined dialogues between Cicely Saunders and David Tasma. Audience members (n = 42) completed an open online questionnaire, and data were analysed using inductive thematic analysis.

Results: Students reported improved understanding of palliative care and its historical foundations. The performance evoked strong emotional responses and personal reflection. Key values such as empathy, accompaniment, and focus on quality of life were highlighted. Theatre was perceived as an effective and transformative way to convey the principles of palliative care.

Conclusion: Theatrical performance is an innovative and effective tool to raise awareness and educate about palliative care. Beyond knowledge transfer, it fostered empathy and personal motivation to engage with this field. These findings underscore the potential of art-based strategies to promote palliative care understanding and engagement among younger generations, contributing to broader societal awareness and support.

Background: Soft tissue and bone sarcomas affect adolescents and young adults and require intensive treatments despite overall poor prognoses. These factors seem to provide an indication for palliative care, a specialty committed to addressing physical and psychological suffering for patients with serious illnesses.

Aim: Explore palliative care intervention in the adolescent and young adult sarcoma population and qualitatively analyze palliative care visits and medical oncology visits to propose a framework for collaboration.

Design: A quantitative retrospective review and directed content analysis of palliative care and medical oncology visits.

Setting/participants: Single-center review of adolescent and young adult patients with soft tissue or bone sarcoma who died April 1, 2019-March 31, 2024, and directed content analysis of clinical documentation from 10 patients who received palliative care.

Results: Thirty-nine of 63 patients (62%) received palliative care. Median overall survival from advanced/metastatic diagnosis was 700 days for those with palliative care and 500 days for those without (95% CI: 0.84-2.33). Overall survival at 24 months from advanced/metastatic diagnosis was 43.6% for those with palliative care and 29.2% for those without, p = 0.38. Palliative care and medical oncology visits addressed physical symptoms, while end-of-life discussions were more common in palliative care visits.

Conclusion: Adolescents and young adults with soft tissue and bone sarcomas may especially benefit from early engagement of palliative care both in trends toward improved overall survival and respect for end-of-life wishes. Future directions will be aimed at promoting early engagement through patient and provider education and optimization of referral patterns to identify vulnerable patients.

Background: Although palliative care embraces person-centred principles and autonomy to meet patients' holistic needs, autonomy is not automatically assured and few studies cover patients' lived experiences. Consequently, current thinking about dying and palliative care practices would benefit from an in-depth understanding of patient experiences. Such research provides an opportunity to challenge assumptions about patient preferences for the amount and type of care and decision-making involvement, especially for the way patient preferences may vary between individuals and change through the palliative care process.

Objectives: This project aimed to investigate patient conceptualisations and preferences for autonomy while receiving palliative care.

Design: This qualitative phenomenological study explored patients' experiences of autonomy in home-based palliative care in Queensland, Australia.

Methods: Face-to-face semi-structured interviews were audio-recorded with two participants to learn their perspectives regarding autonomy in palliative care. Transcripts were analyzed using interpretative phenomenological analysis.

Results: Four themes were identified: (a) my involvement in healthcare decisions, (b) change to my autonomy during illness progression, (c) self-assessing my abilities to exercise autonomy and (d) my coping mechanisms for loss of autonomy. Palliative care patients perceived and managed their autonomy amidst their illnesses, revealing a sense of loss of autonomy extending beyond healthcare into many daily activities. Participants wished to exercise autonomy in nuanced ways, varying in intensity across many aspects of their lives, underscoring the importance of recognising and respecting individuals' wishes for autonomy.

Conclusion: Partnering with individuals receiving palliative care provided authentic insight into their level and experience of autonomy. While many health practitioners aim to facilitate autonomy in patients receiving palliative care, flexibility is required to recognise variable patient needs. Such approaches will further ensure autonomy moves beyond a singular view of healthcare decision participation, to encompass changes to preferences during palliative care, while recognising how patients exercise autonomy via self-assessment and coping mechanisms.

Trial registration: Not applicable.

Background: A growing proportion of older adults are living longer and dying with life-limiting illnesses. While the majority express a preference for end-of-life care at home, there is often a disparity between this preference and settings in which care and death continue to occur. Alongside other determinants, the nature of available care at home at the end of life shapes the realisation of preferences. Yet there is limited understanding of the experience and effectiveness of programs of in-home aged care in supporting end-of-life care at home.

Objectives: The study aimed to explore the experiences of informal carers of older adults with a life-limiting illness in the last year of life who received forms of in-home aged care.

Design and methods: A qualitative design utilised semi-structured interviews to elicit experiences of current or former (bereaved) carers of an older adult (n = 14), who currently or previously received support through programs of Australian government-funded in-home aged care. Analysis of interview data employed reflexive thematic analysis.

Results: Findings highlight features of in-home care that shape and constrain effective and equitable end-of-life care provision over the arc of experience, from the point of accessing this care. Themes pertained to the centrality of navigational support, the need for responsivity and flexibility to meet needs and preferences, the function of specific knowledge and skills and the importance of a relational orientation in facilitating continuity. Carer positionality, associated with individual capacity and resources, influenced the potential to mitigate gaps in care.

Conclusion: Approaches that support system navigation and the tailoring of features of in-home aged care to meet complex end-of-life needs are indicated, alongside further attention to education and support of the in-home aged care workforce. Implications are timely and possess relevance across sectors of aged and health care seeking to enable end-of-life care for older adults at home.