End of life care for people using substances: research challenges in lockdown

Professor Sarah Galvani | February 2021 | 10 minutes

In this blog, Professor Sarah Galvani explains some of the research challenges posed by lockdown for research into end-of-life care for people using substances.

For the second time in the past 12 months, we have ‘paused’ our research on palliative and end of life care for people using substances due to the impact of Covid-19. The irony is that this work is probably needed now more than ever, given the harrowing death toll in the UK.

The focus of the research, funded through the NIHR Social Care Grant, is building a model of care to improve services for people using substances at, or near, the end of their lives. The aim is to develop a new co-produced model of care that will be rolled out across our social care and healthcare partners in Liverpool and Sefton, including hospital- and community-based alcohol and drug services. Both qualitative and quantitative data are being collected before and after the new model is rolled out to see what impact it has on people’s access to, and provision of, care.

However, it is easy to see the challenges for our partner services at
present and the reason we are ‘on pause’ once again. These include:

  • a focus on end-of-life care when community-based palliative care services are already stretched because of the pandemic,
  • specialist substance use services pared back to essential services delivered virtually or at arm’s length,
  • social care services challenged to deliver care, including safeguarding processes, within minimal to no face-to-face contact,
  • hospital services thrown into disarray as wards, theatres and personnel are transferred to alternative, extended or additional duties,
  • hospices trying to provide the best end-of-life care with depleted staff numbers and a lack of family and friend involvement,
  • hostel and housing support attempting to care for increased numbers of people from the streets or whose loss of employment is threatening them with homelessness.

These system-level pressures combined with staff sickness, isolation rules, home working and home schooling, has resulted in a workforce that is stretched beyond belief. It is, therefore, not surprising that our research is not a priority and that staff cannot afford us the time and attention we need to progress the research.

Of equal import is our access to people with lived experience – be it
their own substance use and palliative care needs, or those of a family
member or close friend. In both cases, ethical research that asks deeply
personal and sensitive questions requires face-to-face contact and,
done properly, a period of relationship building ahead of data
collection. The human connection of face-to-face research data
collection communicates so much more than the words that are spoken,
before, during and after the formal data collection takes place. Our
community voices partner, Voicebox Inc., has worked hard to consider
alternatives with our lead researcher and to reach out to people in
different ways but, after considered discussion, we agreed that this too
must stop.

"We developed our new model of care before the introduction of the third national lockdown... that is both practical and aspirational."

On the ‘up’ side, we developed our new model of care before the introduction of the third national lockdown. A series of online workshops with partner agency representatives and members of our PEAT (People with Experience Advisory Team) resulted in a model of care that is both practical and aspirational. Chief among the concerns are supporting social care and healthcare staff to identify and assess people who are using substances and who have ‘serious and advancing ill health’*. For example, how does a substance use specialist use the ‘teachable moment’ of a hospital admission to raise the topic of someone’s wishes for the end of their lives? Should palliative and end-of-life care specialists talk to someone who is dying about changing their substance use in the last weeks of their life, and if so, how do they go about it? Should social care staff be talking to people about both these issues, or should it be a joint assessment process?

Second, there is a need for better information for everyone, be they carers (paid or unpaid), family members, and individuals themselves; what services are available, who refers to them, are they direct access, what will it mean for someone’s substance use, will their medication be stopped or changed, can they take a friend to appointments? Information in various formats needs appropriate dissemination for all those concerned with caring for someone using substances who has serious and advancing ill-health as well as for the person themselves.

Third, professionals in all services require a pool of collaborators and advisers across specialist areas who can answer questions and offer support and guidance or links to helpful resources. Both in the model-of-care workshops for this project and in the previous exploratory research project, professionals from substance use, hospice, and community services and hospital staff saw great value in cross-sector support and having someone to talk to for advice at an operational day-to-day level. The model of care seeks to facilitate and embed both peer and professional support forums within the systemic response in Liverpool and Sefton.

"All our research to date has identified an absence of support for family members, friends and informal carers, before, during and after the end-of-life care for their relative."

Last, and certainly not least, all our research to date has identified an absence of support for family members, friends and informal carers, before, during and after the end-of-life care for their relative. The shame and guilt that accompanies the substance-related illness and death of a relative results in ongoing hurt and harm to families, friends and carers. Establishing a support network of some kind for this group of people will fill a massive gap in service provision and support.

So, development of our resources for our model continues, but time and the coronavirus in its various mutations will determine whether the research will recommence and whether the model will be rolled out. To do so requires the involvement of our partners and they are very busy right now. What is clear, however, is whether or not the research continues as planned, the care of people using substances at or near the end of their lives remains a pressing need and a void in services that needs filling beyond the committed agencies in Liverpool and Sefton.

*The change in terminology for the model signals an understanding that not everyone has a diagnosis and, even if they do, there are unpredictable health trajectories for the complex health conditions people using substances can have. In addition, many people do not understand concepts such as ‘palliative care’.