Providing holistic end-of-life care for people with a history of problem substance use: a mixed methods cohort study of interdisciplinary service provision and integrated care.

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.

Towards a Dignified Death: A New Approach to Care for People Using Substances Who Are at, or Near, the End of Their Lives.

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.

An ethical exploration of the narratives surrounding substance use and pain management at the end of life: a discussion paper.

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.

End of life care for people with alcohol and drug problems: Findings from a Rapid Evidence Assessment.

People who use alcohol and other drugs(hereafter "substances") and who are over the age of 40 are now more likely to die of a non-drug related cause than people who use substances under the age of 40. This population will therefore potentially need greater access to palliative and end of life care services. Initially, the purpose of this rapid evidence assessment (REA), conducted August 2016-August 2017, was to explore the peer-reviewed evidence base in relation to end of life care for people with problematic substance use. The following databases were searched using date parameters of 1 January 2004-1 August 2016: Amed, Psycharticles, Ovid, Ageinfo, Medline, Ebscohost, ASSIA, Social Care Online, Web of Knowledge, Web of Science, SSCI, Samsha, NIAAA. Data were extracted using a predefined protocol incorporating inclusion and exclusion criteria. Given the dearth of evidence emerging on interventions and practice responses to problematic substance use, the inclusion criteria were broadened to include any peer-reviewed literature focussing on substance use specifically and end of life care. There were 60 papers that met the inclusion criteria. These were quality assessed. Using a textual thematic approach to categorise findings, papers fell into three broad groups (a) pain management, (b) homeless and marginalised groups, and (c) alcohol-related papers. In general, this small and diverse literature lacked depth and quality. The papers suggest there are challenges for health and social care professionals in meeting the end of life needs of people who use substances. Addressing issues like safe prescribing for pain management becomes more challenging in the presence of substance use and requires flexible service provision from both alcohol/drug services and end of life care providers. Work is needed to develop models of good practice in working with co-existing substance use and end of life conditions as well as prevalence studies to provide a wider context for policy development.

Safety in numbers? Tackling domestic abuse in couples and network therapies.

Family, network or couples-based therapies have been helping to support people with substance problems for decades. Their value in supporting a person to change their alcohol or drug use is clear. However, as links between substance use and domestic abuse are increasingly recognised, these approaches need to reflect on the potential safety risks they present to people taking part. The prevalence of domestic abuse among people receiving drug and alcohol services is considerably higher than general population estimates, yet this does not appear to have been adequately addressed in network therapies. This article suggests that this needs to change and that safety of service users needs to be at least as important as the intervention itself. It offers for debate a number of potential safety issues raised by network therapies where there is evidence of domestic abuse; it provides examples of three approaches used to marshal social and network support in substance interventions; and offers a number of suggestions for how network therapies can ensure their use remains safe and supportive where there is domestic abuse.

Alcohol and domestic violence: women's views.

Alcohol's role in men's violence to women is a controversial issue. In the United Kingdom, little research has been conducted on the link between the two, and no in-depth studies have sought the views of the women who suffer such violence. This article reports on in-depth research with 20 women that aimed to hear their views on the role of alcohol in men's violence to them. The results of the research show that women do not blame alcohol for their partner's violence; they hold the men, not their alcohol consumption, responsible for their actions.