Palliative Medicine最新文献

Background: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare.

Aim: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?'

Design: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs).

Findings: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements.

Conclusions: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

Background: Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers' support needs are often overlooked.

Aim: To explore caregivers' experiences of psychological support and perceptions of what constitutes optimal psychological support for caregivers in the context of high-grade glioma.

Design: Qualitative study involving semi-structured interviews with data analysed using reflexive thematic analysis.

Setting/participants: Eighteen current (n = 11) and bereaved (n = 7) family caregivers (73% female, aged 33-69 years) of adults with high-grade glioma participated. Interviews explored caregivers' perceptions of psychological support.

Results: Two major themes were generated. The first theme, 'It was never about me', reflected caregivers prioritise for people with high-grade glioma to be well supported despite experiencing their own unmet psychological support needs. The second theme, 'Continuous, coordinated and personalised support', highlighted the importance of timely and tailored interventions addressing caregivers' practical, educational and emotional support needs throughout the illness journey.

Conclusions: Caregivers commonly prioritise the support needs of people with high-grade gliomas; yet, have their own distinct needs that vary throughout the illness. Primary care providers have a potential role in facilitating timely access to palliative care, practical support and brain tumour-specific psychological support to meet caregivers' diverse needs across the care continuum in the context of high-grade glioma.

Background: People living with terminal illness are at higher risk of experiencing financial insecurity. The variance in definitions of financial insecurity, in addition to its impact on the well-being of this population has not yet been systematically analysed.

Aim: To understand the definition, prevalence and impact of financial insecurity on the physical and psychological well-being of people living with terminal illness.

Design: A systematic review with a narrative synthesis (prospectively registered; CRD42023404516).

Data sources: Medline, Embase, CINAHL, AMED, PsycINFO, ProQuest Central and Cochrane Central Register of Controlled Trials, from inception to May 2023. Included studies had to measure or describe the impact of financial insecurity on an aspect of participants' physical or mental well-being. Study quality was assessed using the Hawker tool.

Results: A total of 26 studies were included in the review. Financial insecurity was defined using many different definitions and terminology. Out of 4824 participants, 1126 (23%) reported experiencing high levels of financial insecurity. Nine studies reported 21 unique analyses across three domains of physical well-being. Out of those 21 analyses, 10 (48%) reported a negative result (an increase in financial insecurity was reported with a decrease in physical well-being). Twenty-one studies reported 51 unique analyses across nine domains of psychological well-being. Out of these analyses, 35 (69%) reported a negative result (an increase in financial insecurity was reported with a decrease in psychological well-being).

Conclusions: People living with terminal illness require support with their financial situation to ensure their well-being is not negatively impacted by financial insecurity.

Background: Tracheostomy ventilation in motor neurone disease is an uncommon life-sustaining treatment. Best practice is having a plan for ventilation withdrawal, but the literature to guide practice is limited. Case reports have documented standard doses of opioids and benzodiazepines used for sedation in such cases.

Case: A 49-year-old man was diagnosed with motor neurone disease in 2016. He commenced tracheostomy ventilation in 2018. In 2022 and 2023, planning was undertaken, at the patient's request, for withdrawal of tracheostomy ventilation at home, when he was no longer able to communicate with technology.

Case planning: Planning included Bispectral Index monitoring prior to cessation of ventilation, ensuring this only occurred when deep sedation was achieved. After ventilation withdrawal in 2023, a retrospective review of medications given and his level of sedation on monitoring was undertaken, with family consent.

Outcome: Ventilation withdrawal was initiated after deep sedation was achieved, 6 h after commencing subcutaneous infusions of morphine, midazolam, clonazepam and phenobarbital.

Lessons: Doses required to achieve acceptable sedation exceeded literature reports. Achieving deep sedation was a longer than expected process.

Conclusion: More research using an objective measure of sedation is required, as clinical assessment of sedation in this context is compromised.

Background: Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed.

Aim: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness.

Design: A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis.

Setting/participants: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness.

Results: Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations).

Conclusions: Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases.

Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics.

Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs.

Setting/participants: Adult national survey respondents - England.

Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only.

Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care.

Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development.

Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews.

Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents.

Results: Four generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'.

Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.

Background: Patients receiving palliative care often face psychological distress, which can be challenging for clinicians to manage. Therefore, reflexive and visual journaling can be used as powerful techniques for clinician selfreflection and personal development. These journals are a form of practice wisdom, providing insights into psychological health in palliative care.

Aim: This study aims to describe how patients receiving palliative care experience psychological health, explore the meaning of a palliative care clinician's work and contribute to the understanding of psychological health in palliative care through the reflexive and visual journals of clinicians.

Design: Using Gibb's reflective cycle as a framework for journaling, this study employs reflexive and visual journaling through the lenses of a psychiatrist and an art therapist. Journal data were analysed using a thematic analysis approach.

Setting/participants: The two first authors journaled 107 clinical encounters and created 36 pieces of response art detailing encounters with patients and their families, and clinical conversations in two palliative care centres.

Results: Patient attributes and the clinical environment were observed to influence psychological health in palliative care. The patient's ability to navigate dying, maintain personhood, exert resilience and experience satisfying relationships contribute to psychological health. A clinical environment comprising clinicians with holistic competencies, systems promoting interdisciplinary collaborations and a values-based culture that promotes patient centricity strengthens the delivery of psychological care.

Conclusions: Good psychological health in palliative care extends beyond psychopathology and is influenced by the cardinal elements of being human, value systems and systemic elements in the therapeutic environment.

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning.

Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services.

Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities.

Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK.

Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying.

Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.