Giving compassionate end-of-life care to people who use alcohol and other drugs

No matter what path we take in life, we all have the right to compassionate end-of-life care and a dignified death. Sadly, many people who use alcohol and other drugs have multiple and life-limiting conditions and don’t get the care and support they need. 

We have an ageing population of people using alcohol and other drugs, with gaps in needs-led services across all age groups. But thanks to a team of researchers from Manchester Met, a new model of care is improving social and health care for people using substances, their families and friends, and the practitioners who support them. 

Sarah Galvani, Professor of Social Research and Substance Use, Dr Gemma Yarwood, Dr Sam Wright, Dr Lucy Webb and Dr Gary Witham developed the model. The researchers are part of Manchester Met’s Substance Use and Associated Behaviours research group.

Systemic failures 

People who use alcohol and other drugs have multiple and complex needs, especially if they are seriously ill. They develop the same health conditions as the wider population as they age and often have additional social and health issues, for example liver failure from drinking alcohol heavily, or hepatitis B or C from sharing equipment for injecting drugs.  

There are many reasons why people using alcohol and other drugs fail to get the help they need. Many don’t go to their GPs for fear of being judged. Others don’t realise how poorly they are and wait until they are in a crisis. When they do get help, their substance use can divert attention from their social and health needs, resulting in them receiving a lower standard of care. They may even experience rude or judgmental attitudes from health and social care practitioners, who often struggle to talk about the joint issues of substance use and end of life. 

Researcher Gemma Yarwood said: “Everyone – absolutely everyone – deserves good social and health care. Substance use should not be a red flag causing barriers to much-needed services at the end of life.”

It’s not just people with current or historic substance use problems who need support and compassionate care at the end of life. Friends and relatives also need help, as they are often the primary carers. And even for the most experienced practitioners, treating and caring for these patients and their families can be stressful and emotional.  

“Our research was inspired by practitioners’ concerns about improving end-of-life care for people using substances and their families, friends and carers,” Sarah Galvani said. “It was the first study of its kind to impact the joint issues of substance use and end-of-life care through frontline care improvements.” 

Working together 

The new model of care was developed during a three-year research project, which Manchester Met ran in partnership with Mersey Care NHS Foundation Trust from 2019 to 2022. The project received funding from the National Institute for Health Research, and it built on the team’s previous research in this area. 

The research team conducted several stages of qualitative and quantitative research, working with stakeholders from the health and social care sectors across Merseyside. Stakeholders included healthcare professionals, social work teams, hospices, housing charities, substance use specialists, community end-of-life care teams and specialist GP services.  

Working alongside people with lived experience was also crucial, particularly those with life-limiting conditions because of substance use, and their friends and family. Project partner Amanda Clayson, Creative Director and Founder, VoiceBox Inc, created an advisory team of people with lived experience who informed and supported the research – and the information it produced.

The team heard heart-wrenching insights into people’s experiences, with loved ones describing substance-related deaths tainted with stigma and labelling. “How practitioners manage dying wishes that include substance use had previously been swept under the carpet,” researcher Sam Wright said. “However, our research encourages practitioners to talk honestly and openly about these challenges, so they can find a way to provide compassionate care in someone’s final days of life.”

A new model of care 

After each stage of research, the team analysed the findings and incorporated the learnings into the new model of care. It brings palliative care and substance use services together for the first time to build networks of multidisciplinary practitioners. The researchers found that while these practitioners have their own specialisms, they also need to learn from each other and work together. 

“Take hospices as an example. They’re experts in palliative care, death and dying. But they are uncomfortable with substance use. So, if you send somebody in who’s homeless, using heroin and needing palliative care, that’s a challenge,” Gemma said. 

“On the other hand, practitioners in substance services don’t have expertise in discussing the best end of-life-care pathways. We brought these two diverse ways of practising together for the first time.” 

The model connects these multidisciplinary practitioners with care recipients and families using forums, training and a website where they can share experiences openly. The website includes pocket guides, podcasts and videos, which aim to improve care for people affected by the joint issues of substance use and the end of life.

Gemma said: “We’re really proud of the resources we’ve developed, such as the podcasts. As the research is breaking new ground, these resources are already making an impact. The YMCA and other partner organisations are using them to support frontline service delivery.”

The model of care also recommended changes to assessment processes and routine questioning for people using substances who are approaching the end of their lives. It improved care pathways and referral processes to specialist end-of-life care at partner agencies. Staff were trained to feel more comfortable having conversations about the difficult topics of end-of-life care and substance use, and attitudes towards substance use were challenged. 

Gemma said: “Have you ever tried to start a conversation about your dying wishes? People with lived experiences told us that they need to feel heard and respected by practitioners who might judge their substance use. Our new model of care provides pocket guides for practitioners and people with lived experiences, which suggest ways to have better conversations about end-of-life care. It may seem simple, but these are some of the hardest conversations a person can ever have.”

Members of the team have also published several articles and edited a book drawing on some of the findings and the networks developed during the project. 

Rolling out the research 

Gemma is working with Alcohol Change to disseminate the findings through training, and the team hope to roll the training out nationally in collaboration with other partners. They will also explore knowledge exchange with the emergency services. 

Gemma said: “It’s about training and raising awareness with practitioners. People deserve a dignified death regardless of their life choices. It’s a public health issue and it’s about challenging stigmas.” 

Gemma believes that the new model of care will be a vital step towards managing the impending challenges of an ageing population with rising health problems linked to substance use. “This research has shown the true meaning of impact through improving care delivery with our new model.”

The team believes the model could have an even more significant impact if adopted at a national level. It remains to be seen if sufficient funding will be granted, but every step the team takes is helping to widen access to palliative care for people using substances and increase support for those caring for them.