People who are at, or near, the end of their lives deserve to die with dignity, care and compassion. But this is often not the case for people using substances, particularly if they are homeless too. Many people using substances have few, if any, options about their care towards the end of their lives. The care they receive from some professionals can be poor and their families, friends and carers are left wondering how to cope – usually without adequate information and support.
In 2019, a team of researchers from Manchester Metropolitan University (MMU) started to develop a new approach to care for people using substances – alcohol and other drugs – who were approaching the end of their lives. This was done in partnership with people with lived experience of substance use and loss, through our community partner VoiceBox Inc., and in partnership with ten social and health care providers in Liverpool and Sefton.
Liverpool is fortunate to have some dedicated professionals working together, particularly for homeless people or people living in hostels. These include the Brownlow group of GPs, Marie Curie Hospice staff, With You and Ambitions Liverpool staff, and housing agencies such as the Whitechapel Centre and YMCA. However, across the wider system and away from the hard work of these agencies there is a genuine ignorance about how to support someone who is using substances and approaching the end of their lives.
To develop a new approach, the team asked people about their experiences of living or working within the existing system. Finding out what worked and what didn’t was an important first step in developing a different way of working. What we heard were examples of shocking and prejudiced ‘care’, with only a few examples of good practice.
The research team worked alongside people with lived experience of substance use, as well as families, friends and carers, and social and health care practitioners to develop the new model of care. Through a series of online workshops, the group agreed the short-, medium- and long-term goals for a new model.
‘To provide compassion-focussed palliative and end-of-life care for people using substances, and their families and carers, which addresses current health inequalities.’
This doesn’t mean the responsibility lies just with palliative and end-of-life services; it means that no matter where the person is in the ‘system’ when they become seriously ill, the people around them should be better equipped to have conversations with them, whether that’s a substance use practitioner, family member, hostel worker, or medical staff. It also means family members (we use the term loosely – it could be a close friend or neighbour) should be better supported, both in their own right and in terms of the information and emotional support to help them in their caring role.
To reach the long-term goal there are a series of ‘stepping stones’ including short- and medium-term goals. For our short-term goals, the working group said everyone needed more knowledge and understanding of the issues people faced, information on how to talk to someone about end-of-life wishes or substance use, and that families, friends and carers – paid and unpaid – needed better support. This meant providing knowledge and resources to professionals, family caregivers and people who are unwell, including examples of good practice of how to raise the subject with someone else and information on end-of-life care and/or substance use. As a result, a range of booklets, practice pointers, leaflets and podcasts were developed and uploaded to the project’s website: https://endoflifecaresubstanceuse.com
The resources also offer suggestions on how to challenge a GP or other professional who might not be helpful, such as taking someone else to the appointment or saying, ‘I think I could be seriously unwell. I know I drink/use drugs, but it’s more than that. I need someone to take my concerns seriously.’
Of course, talking or thinking about dying is still taboo, despite the fact that it’s an experience we’re all guaranteed to share. The resources also include pointers on raising the subject with family and friends, as well as suggestions for professionals and family members about how to start conversations.
Depending on the circumstances of our ill health we may not always be able to get things the way we would want them at the end of our lives but there’s a far better chance if we’ve given it some thought ahead of time, written it down, and told some other people.
The research team heard that what was important was having someone who listened properly and didn’t judge, someone who clearly cared about them and wanted the best for them, and professionals who were direct about what was going on but kind at the same time. They also wanted care in a holistic way, where professionals considered all of their needs rather than just one. Family caregivers and practitioners wanted to know how to take care of their friend, relative or patient well and where to go if they had questions or needed support.
Perhaps the main message from the group and the wider research is that people deserve a ‘good death’ and to die with dignity, with as much control as they want, and with as much choice as possible. Making sure that happens is everyone’s responsibility.
Sarah Galvani is part of the SUAB (substance use and associated behaviours) research group at Manchester Metropolitan University.