Background: Homeless people using substances at the end-of-life face many challenges in accessing and receiving good care. These can relate to poor interdisciplinary working by health and social care practitioners, stigma and structural disadvantage. Objective: Using positioning theory, we explored the challenges of existing models of practice for practitioners supporting this population. Research design: This is a qualitative descriptive study in which data were collected via four interdisciplinary practitioner focus groups. Data sources and methods: The four online interdisciplinary focus groups were conducted within a region of North-West England. This included 24 participants from health and social care providers with experience of working with and/or supporting people experiencing homelessness and using substances. Results: The findings indicated three primary discourse positions related to (i) What constitutes a good death and where? (ii) The limitations of professional boundaries and (iii) Maintaining moral adequacy in the face of traumatic death. For practitioners, maintaining moral adequacy was often compromised by ineffective multi-disciplinary collaboration. Practitioners were often exposed to traumatic working experiences with limited resources to effect change. Conclusion: The findings support work examining the structural and environmental challenges of palliative care provision for hostel-users and unsheltered homeless people in providing care at the end of life for people experiencing homelessness.

Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve.

BackgroundChronic alcohol disorder hospital admissions are increasing in England and present a huge cost to England's health and social care costs. Hospital-based alcohol care teams (ACTs) aim to better meet these patients' complex needs through assessment and targeted referral. This has the potential to work effectively within England's newly established integrated care system.MethodsThe aim of this project was to identify in what ways ACTs can be effective in improving care pathways for complex care in a whole-system health and social care setting. We conducted semi-structured, tailored interviews with practitioners, managers and commissioners, across three hospital and community settings in one large urban region in England, comparing ACT working with non-ACT working.ResultsEffective pathways were enabled by the presence of an ACT, multi-agency community initiatives, assertive alcohol outreach and frequent-attender team meetings. Identified barriers were lack of systemic funding and commissioning, poor communication between agencies, lack of information-sharing and insufficient staff training.ConclusionCommunity outreach and in-reach between hospitals and community services enable effective care pathways when ACTs provide the point of contact. A well-resourced ACT with clear operational remit can create links between diverse agencies and enables improved wraparound care for alcohol dependent patients.

There are no effective intervention studies for people using substances who are at, or near, the end of their lives. The needs of this group of people have been consistently overlooked even within the literature that identifies marginalised groups of people in need of greater recognition in palliative and end-of-life care. The aims of the project were to: (i) determine what a new, co-produced, model of care should look like for people using substances needing palliative and end-of-life care, and (ii) establish whether the new model had the potential to improve people's access to, and experience of, end-of-life care. This paper presents the development of the new approach to care. It was developed using participatory action research principles over a course of online workshops during the COVID-19 pandemic lockdown period in the UK. A theory of change that aims to inform future policy and practice development is presented. While the ambition of the research was stunted by the pandemic, the process of its development and dissemination of the model and its resources has continued. Response from participants highlighted the importance of this work, however, in this new field of policy and practice, preparatory work that engages a wide range of stakeholders is crucial to its success. This relationship building and topic engagement are major parts of implementation before more substantial and sustainable development goals can be met.

Background Oesophago-gastric cancer is an aggressive disease with a high rate of recurrence and mortality across the disease trajectory. Reduced psychosocial functioning has been evidenced amongst those with advanced disease, however little is known about the contributing factors. Determining these factors is an important clinical consideration to inform assessment and intervention. This review aimed to synthesise the available evidence on the psychosocial functioning of individuals with advanced oesophago-gastric cancer and their carers. Methods A JBI mixed-methods systematic review. Four bibliographic databases, MEDLINE, Embase, PsycINFO, and CINAHL, were searched. Quantitative and qualitative studies were screened for inclusion and critically appraised for methodological quality. Both types of data were extracted using JBI tools for mixed-methods systematic reviews. A convergent segregated approach to synthesis and integration was used. The findings of the synthesis have been configured according to JBI methodology. Results A total of 12 studies were included in this review, including 6 quantitative studies and 6 qualitative studies. The quantitative results provide preliminary indication of several physical, biological, psychological and macro-level contextual factors associated with psychosocial functioning in this clinical population. The qualitative findings shed light on a range of physical, psychosocial, and existential challenges faced by advanced oesophago-gastric cancer patients. These multiple and often persistent challenges appear to cause considerable distress; however, patients describe the importance of maintaining a sense of normality and control over their illness and its effects. Patients value continuity and structure, however many report shortcomings when accessing care. No findings reporting the experiences from the perspective of carers were found, therefore all findings represent the perspective of the patient. Conclusions Further high-quality research is needed to understand how best to support and manage the palliative care needs of individuals living with advanced oesophago-gastric cancer. Implications for practice are discussed, suggesting that psychosocial interventions, complex symptom management and continuity of care could improve the psychosocial functioning of individuals in this setting. Pre-registration The systematic review was pre-registered at the International Prospective Register of Systematic Reviews (PROSPERO; CRD42020181273) and the protocol can be viewed on the OSF ( http://osf.io/exuzf ).

The social and health care professionals who work with people using substances at, or near, the end of their lives, straddle a multitude of disciplines. In this chapter, we draw on this breadth of knowledge across this range of professions. We present examples from their experiences of working with this group of people; people who are often marginalised and stigmatised due to their substance use, and who become defensive and cautious of service provision as a result.

This chapter assesses how useful the concept of long-term recovery is for people with chronic health problems (especially those approaching the end of their lives). Drawing on lessons from palliative care, the chapter argues that substance-use policy, commissioning, and practice could become more inclusive by prioritising quality of life and the physical/mental well-being of people using substances, regardless of how close to death they are. Indeed, palliative care is both a medical speciality and a social movement that aims to improve the care of people who are dying by constantly evolving to meet each individual's changing support needs and maximising their quality of life. Ultimately, the core ideas used to develop palliative care complement current thinking about substance-use recovery. The chapter then describes how the concept of recovery could be improved by integrating palliative care approaches within it, thereby achieving a more finely tuned and dynamic balance between health and social care.

This chapter examines caregiving similarities and tensions between families and friends 1 supporting someone who uses substances 2 and has palliative care 3 needs and health and social care practitioners. People who use substances and are approaching the end of life tend to present late to healthcare services, resulting in family and friends providing the caregiving role. Typically, the person’s health trajectory is unpredictable due to multiple health conditions. They may not recognise the full extent of their symptoms, partly because their substance use can mask how ill they are. They may also be reluctant to engage with services. This means that they, their family carers, and the health and social care practitioners working with them, have very little time to forge the working relationships that will help them to achieve a dignified death.

This chapter addresses a new systems level approach that takes account of the intersectional and compounded nature of the characteristics that combine to marginalise many people from palliative and end-of-life care. The delivery of care remains fragmented in spite of aspirations for integrated and shared care. Health systems are designed to be curative and social care systems are designed to safeguard and support people’s wellbeing. The new Complex case management and assertive outreach (ComCAS) service model would sit astride the other services and would seek to embed a consistency of care delivery to people with multiple needs at, or near, the end of their lives. It would not replace the other services, but it would provide an expertise in complex needs and provide a case management function for people whose access to services is currently limited and marginal.

This discussion article examines narrative positioning related to pain management for people who use substances at the end of life. We explore how dominant narrative genres associated with biomedicine, such as ‘restitution’ and narratives common within the context of drug services such as ‘recovery’ can hinder effective pain management within this population. We argue that these discourses can marginalise the ethical self-identity of patients who use substances at the end of life. It can also trouble health and social care professionals in supporting patients and generating counter-narratives that challenge those often associated with substance use. Stigma is a common experience for this population with stereotyping as ‘junkies’ and associated with criminality. They are positioned as drug-seeking, and this requires more surveillance at the end of life when opioid therapy is potentially more available and authorised. This can make it challenging to generate ‘companion’ stories that are positive and maintain moral adequacy. Dominant biomedical narrative genres often prevent the recognition of the fractured stories that people using substances can often present with. This can lead to narrative silencing and to the under treatment of pain. The person’s self-identity is invested in narratives of recovery, and opioid use symbolises their addicted past because for practitioners, this population is at clinical risk with the potential for drug seeking behaviours. Whilst not requiring formal ethical review this discussion paper was constructed in accordance with good scientific practice with the work of other researchers respected and cited appropriately.

We welcome the call to action for palliative care reform for underserved populations in a recent editorial of Collegian ( Phillips et al., 2019 Phillips J. Bloomer M. Mills J. Extending palliative care for underserved populations: time to act. Collegian. 2019; 26: 607-608https://doi.org/10.1016/j.colegn.2019.09.009 Abstract Full Text Full Text PDF Scopus (1) Google Scholar ). The authors note that the integration of a harm reduction philosophy into palliative care services is not always clear, and we believe that much more can be done to facilitate this.

This paper examines narrative positioning related to pain management for people who use substances at the end of life. We explore how dominant narrative genres associated with biomedicine, such as “restitution” and narratives common within the context of drug services such as “recovery” can hinder effective pain management within this population. We argue that these discourses can marginalise the ethical self-identity of patients who use substances at the end of life. It can also trouble health and social care professionals in supporting patients and generating counter-narratives that challenge those often associated with substance use. Stigma is a common experience for this population with stereotyping as “junkies” and associated with criminality. They are positioned as drug-seeking and this requires more surveillance at the end of life when opioid therapy is potentially more available and authorised. This can make is it challenging to generate “companion” stories that are positive and maintain moral adequacy. Dominant biomedical narrative genres often prevent the recognition of the fractured stories that people using substances can often present with. This can lead to narrative silencing and to the under treatment of pain. The person’s self-identity is invested in narratives of recovery and opioid use symbolises their addicted past or because for practitioners, this population is a clinical risk with the potential for drug seeking behaviours.