Supported by the Big Lottery Fund, it will be the first study of its kind in the UK and will chronicle the prevalence and frequency of substance problems in palliative and end-of-life care, as well as the experiences of individuals, family members and professionals living and working with these overlapping issues.
Sarah Galvani, Professor of Adult Social Care at Manchester Metropolitan University, is leading the research. She said: “The idea for this research came from the concerns of some charities about whether they were supporting people with substance problems in need of palliative or end-of-life care as well as they could.
“Anecdotal evidence suggests that people with substance problems who are very unwell avoid seeking the health care they need because of their concerns about how they will be treated. It also suggests that professionals need some support to know how to respond when people with both issues do access services. This research will start to explore these concerns.”
Researchers will work closely with charity partners Aquarius in Birmingham, Phoenix Futures, which is nationwide, St John’s Hospice in Lancaster, Trinity Hospice in Blackpool, St Catherine’s Hospice in Preston, and community organisation VoiceBox Inc in Manchester, as well as with carer and service user advisers. The team will use a £425,000 grant from the Big Lottery Fund to spearhead the two-year project.
There are no known figures of the extent of people with substance problems in need of palliative or end-of-life care and this forms one strand of this research. However, there is emerging evidence of older people’s substance use, alcohol in particular, leading to increased levels of mental and physical harm and increasing rates of hospital admissions. Currently, the 55-64 age group has the second highest admissions to hospital for alcohol-related conditions or injury, with the 45-54 age group the highest.
The problematic use of substances is linked to many forms of chronic and life-threatening conditions including liver cirrhosis, cardio-obstructive pulmonary disorder, various forms of cancer, heart disease and dementia. The majority of these conditions affect people in their later years of their life, although not exclusively. With a rapidly ageing population, this is predicted to increase and place escalating demands on end-of-life, palliative care, and substance use services.
While some people may reduce or stop their substance use when they get older and/or become ill, not everyone does. For some people their problematic substance use can lead directly to their chronic or terminal illness, while for others their substance use may co-exist with their illness. In addition, the impact of a loved one’s problematic substance use on family members can be considerable. If they are in a caring role this impact and stress is likely to be exacerbated, particularly when the loved one is nearing the end of their lives.
The research team, comprising social care and nursing academics at Manchester Met, also want to establish what good practice exists and to determine whether there are any inequalities in the care received by people with substance use issues at the end of their lives compared to those without. The research will also include speaking to people in receipt of end-of-life care and/or substance use services, as well as family members and carers. The team will also be talking to professionals about how they are currently responding to these overlapping issues and what additional support they might need.
Existing government policy on palliative and end-of-life care seeks to offer all people approaching end of life a needs assessment and high-quality care but it is not known if this applies to people whose use of substances is problematic, said Prof Galvani.
She said: “This will be a timely and valuable resource for policy makers and practitioners. For the first time, it will present the available evidence on the scale of the overlap between substance problems for people receiving, or in need of, end-of-life care.
“End-of-life or palliative care for people with substance problems is likely to become a major issue in the near future given our ageing population, the trends in its substance using behaviour, and the increasing chronic/terminal illness that longevity will bring. In partnership with end-of-life and substance use services, and community and public involvement, this study seeks to ensure services have practice models and policy guidance which are grounded in the experience of those receiving, and delivering, end-of-life and substance use services.
“This is a new area of research and practice development which will provide additional data and perspectives from a range of stakeholders on which practice can be developed more fully.”
When I worked on the ward where I cared for alcoholic liver disease patients many of them were there for end of life care so this is particularly close to my heart. I look forward to reading the findings of this ground-breaking research.
Plus in support of those bereaved from substance misuse:
The BEAD Project – a partnership between Adfam and Cruse Bereavement Care – is launching two new peer-led support groups for people bereaved by drug or alcohol use. The groups are being piloted in London and Birmingham from April to June 2016 and are open to any adult who has been bereaved through drug or alcohol use | Adfam, UK