Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’

Around the world there is growing interest in the manner in which care is delivered to people at the end of life. However, there is little unanimity on what constitutes a ‘good death’ and the appropriate societal responses to the issue of delivering culturally relevant and sustainable forms of end of life care in different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the emerging narratives of global palliative care and offer an assessment of their implications. We relate this to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the development of palliative care provision, and to the emergence of a widely recognised global ‘quality of death index’. We consider an alternative approach to framing this debate, drawn from a subaltern and post-colonial studies perspective and suggest that adopting a truly global perspective will require acceptance of the plurality of past and present local problems and issues relating to end of life care, as well as the plural possibilities of how they might be overcome. In that context, we would not aim to universalise or privilege one particular global future for end of life care. Instead of homogenising end of life interventions, we seek to be open to multiple futures for the care of the dying

Self-management toolkit and delivery strategy for end-of-life pain: the mixed-methods feasibility study

Background: Pain affects most people approaching the end of life and can be severe for some. Opioid analgesia is effective, but evidence is needed about how best to support patients in managing these medicines. Objectives: To develop a self-management support toolkit (SMST) and delivery strategy and to test the feasibility of evaluating this intervention in a future definitive trial. Design: Phase I – evidence synthesis and qualitative interviews with patients and carers. Phase II – qualitative semistructured focus groups and interviews with patients, carers and specialist palliative care health professionals. Phase III – multicentre mixed-methods single-arm pre–post observational feasibility study. Participants: Phase I – six patients and carers. Phase II – 15 patients, four carers and 19 professionals. Phase III – 19 patients recruited to intervention that experienced pain, living at home and were treated with strong opioid analgesia. Process evaluation interviews with 13 patients, seven carers and 11 study nurses. Intervention: Self-Management of Analgesia and Related Treatments at the end of life (SMART) intervention comprising a SMST and a four-step educational delivery approach by clinical nurse specialists in palliative care over 6 weeks. Main outcome measures: Recruitment rate, treatment fidelity, treatment acceptability, patient-reported outcomes (such as scores on the Brief Pain Inventory, Self-Efficacy for Managing Chronic Disease Scale, Edmonton Symptom Assessment Scale, EuroQol-5 Dimensions, Satisfaction with Information about Medicines Scale, and feasibility of collecting data on health-care resource use for economic evaluation). Results: Phase I – key themes on supported self-management were identified from evidence synthesis and qualitative interviews. Phase II – the SMST was developed and refined. The delivery approach was nested within a nurse–patient consultation. Phase III – intervention was delivered to 17 (89%) patients, follow-up data at 6 weeks were available on 15 patients. Overall, the intervention was viewed as acceptable and valued. Descriptive analysis of patient-reported outcomes suggested that interference from pain and self-efficacy were likely to be candidates for primary outcomes in a future trial. No adverse events related to the intervention were reported. The health economic analysis suggested that SMART could be cost-effective. We identified key limitations and considerations for a future trial: improve recruitment through widening eligibility criteria, refine the SMST resources content, enhance fidelity of intervention delivery, secure research nurse support at recruiting sites, refine trial procedures (including withdrawal process and data collection frequency), and consider a cluster randomised design with nurse as cluster unit. Limitations: (1) The recruitment rate was lower than anticipated. (2) The content of the intervention was focused on strong opioids only. (3) The fidelity of intervention delivery was limited by the need for ongoing training and support. (4) Recruitment sites where clinical research nurse support was not secured had lower recruitment rates. (5) The process for recording withdrawal was not sufficiently detailed. (6) The number of follow-up visits was considered burdensome for some participants. (7) The feasibility trial did not have a control arm or assess randomisation processes. Conclusions: A future randomised controlled trial is feasible and acceptable

Experiences of clinical psychologists working in palliative care:A qualitative study

Background Compassion fatigue refers to the emotional and physical exhaustion felt by professionals in caring roles, whereas compassion satisfaction encompasses the positive aspects of helping others. Levels of compassion satisfaction and fatigue have been found to be inconsistent in palliative care professionals, which could have serious implications for patients, professionals and organisations. Objectives This study explored the experiences of clinical psychologists working in palliative care, all worked with adults with cancer, to gain an understanding of the impact this work has on their self and how they manage this. Methods A qualitative approach was taken, using semi‐structured interviews and interpretative phenomenological analysis. Results Three superordinate themes were identified: commitment, existential impact on the self and the oracle. The participants' experiences were characterised by the relationship between themselves and their patients, the influence of working in palliative services on their world view and the impact of organisational changes. Differences between working as a clinical psychologist in palliative care versus non‐palliative settings were considered. Conclusions Professionals working in palliative care should be supported to reflect on their experiences of compassion and resilience, and services should provide resources that facilitate staff to practice positive self‐care to maintain their well‐being

Rural disparities in end‐of‐life care for patients with heart failure: Are they due to geography or socioeconomic disparity?

PURPOSE: The impact of rurality and socioeconomic deprivation on end-of-life (EOL) care for patients with heart failure (HF) is unknown. We analyzed claims to describe the prevalence and predictors of EOL health care utilization for patients dying with HF in a predominantly rural state. METHODS: We used the MaineHealth Data Organization\u27s All-Payer Claims Data to identify 15,168 patients ≥35 who died with HF between 2012 and 2017. The primary outcome was health care utilization during the last 180 days of life (EOL definition for this analysis), including emergency department (ED) visits, hospitalizations, intensive care unit (ICU) admissions, and hospice utilization. Patient characteristics analyzed included age, gender, comorbidities, area deprivation index (ADI), and rurality. FINDINGS: Among 15,168 patients ≥35 who died with HF, 48% had ≥2 hospitalizations, 72% had ≥2 ED visit, 29% had an ICU stay, 2% initiated dialysis during EOL, and 64% received hospice. Rural patients were more likely to have an ICU admission and have ≥2 hospitalizations. Patients residing in areas with higher ADI were more likely to be hospitalized, admitted to the ICU, and started on dialysis. Both rural patients and those living in higher ADI areas were less likely to receive hospice. After multivariable adjustment, rurality and ADI were independently associated with a decreased likelihood of receiving hospice (OR 0.62 [95% CI: 0.53-0.72] for the most rural patients and OR 0.64 [95% CI: 0.57-0.72] for the highest ADI). CONCLUSION: Both rurality and local area deprivation drive disparities in EOL care for patients dying with heart failure