We’re using our knowledge and connections to focus agencies, healthcare providers and policy makers on better end of life care for this neglected, stigmatised group.
By Sarah Galvani
As academics, we’re familiar with the latest research and we are well-connected to agencies, healthcare providers and policy makers with responsibilities for care. So we’re well placed to host discussion, share learning and work together towards better approaches at all levels.We’re working with GPs, hospitals, hospices and substance use services to rethink end of life care for people with drug and alcohol problems. This growing group of people faces discrimination and misunderstanding that can lead to late diagnosis, poor treatment, inadequate palliative care and general neglect. Too often, providers see only the substance use. In doing so, they may miss both the person and life-threatening conditions such as cancer, lung disease, cirrhosis and heart disease.
My Chancellor’s Fellowship this autumn aims to unite research, practice and policy towards achieving improved care for this marginalised group of patients during the end of their lives. It’s an increasingly pressing issue for an ageing population, which includes people with long histories of problematic substance use.
Experiencing late diagnosis
Take Debbie (not her real name) for example. She was an IV drug user who had been treated for breast cancer. But 12 months later, when she returned to her GP complaining of pains in her legs and hips, alarm bells failed to ring. Instead, Debbie was presumed to be seeking pain killers to satisfy her drug use. She was sent away without adequate medical attention. It was only months later, when further symptoms became apparent, that the doctors took notice. Debbie had a brain tumour, was riddled with cancer and died soon afterwards.
Services may provide neglectful care
Hospital services can also be problematic. Derek (not his real name), a heavy user of alcohol in his late 30s, was admitted to a large city hospital with liver failure. Three bereaved family members – his mother, father and nephew – later described the neglect he experienced on a ward that was notorious for its unsympathetic attitudes to people with substance problems. In a great deal of pain and suffering from organ failure, Derek was left without adequate personal care and in pain in his hospital bed. At the inquest, the coroner said that there was a significant excess of fluid in Derek’s body which should have been drained.
Health services make assumptions about people with problematic substance use
Our research suggests that some GPs and hospitals assume that patients with drug and alcohol problems are non-compliant, unpleasant and undeserving. This was a regular complaint about the healthcare of this group from substance use and hospice professionals. But it extends even into their end of life care, when the reform of damaging lifestyles is neither possible nor a priority.
Hospices lack referrals
Our research suggests that hospices are less conflicted by moral judgments in their care for drug and alcohol users. They are rarely concerned if a dying patient wants a smoke or needs alcohol/ drugs to get through their final days. The difficulty for hospices is that these patients are not generally referred to them by GPs and hospitals, so they are missing out on patients whom they would like to help.
The need for a healthcare rethink does not exclude those who are most familiar with this group of vulnerable people – dedicated services for substance users. Unlike other health practitioners, these agencies are not handicapped by judgmental attitudes towards patients and their lifestyles. However, the emphasis in these services on ‘recovery’ can be a problem for delivering good end of life care, when recovery is neither the issue nor the goal.
People may not ask for help, fearing judgment
Finally, of course, there is the question of when and how people with problematic substance use, themselves, ask for help. Fearful of the judgmental attitudes and stigma provoked by their substance use, people with drug and alcohol problems sometimes present their end of life conditions to services at a very late stage. That also needs to change.
How can we, in the research world, make a difference to this complex and fragmented picture of practice and policy? Having scoped the international evidence of good practice and talked to families, friends and carers, we’ve focussed on several levels. First, we are working with key professionals at a local level in Merseyside who are already trying to engineer improvements. They can really help to propel change – when practitioners and policy makers see colleagues making a difference, they will hopefully want to roll out the change themselves.
Focus on champions for change
Such champions of innovation include, for example, a nurse who realised that an agitated man in the last few days of his life needed a drink, rather than the drugs that were being administered. “If I had written that in a nursing exam, I would have been failed,” the nurse told me. Another example is a haematologist who describes patients who are dying from alcohol-related disease but who do not want to stop their substance use. The haematologist has explained how he begins conversations with these patients about end of life care. We have also interviewed a project for homeless people that is also, unusually, providing end of life care for people with substance problems.
Likewise, organisationally, we focus in those areas where we are pushing on open doors, rather than doing blue skies thinking. We’re working regionally with Mersey Care NHS Foundation Trust. Its Clinical Director for Addiction Services has started a group that brings together statutory and non-statutory agencies dealing with end of life care and links them with GPs, psychology services and healthcare commissioners. We are working together at this level to develop policy guidelines.
Developing local, regional and national solutions
Out of all this activity, my goal, with my research team, is to create a suite of policy documents. The first will develop policy for organisations on the ground to provide end of life care for people who use substances. The second will inform the creation of regional policy in this field. Finally, we want to produce guidelines and principles to inform development of national policies in this area. So, for example, we have met Sir Ed Davey who is promoting a Commons bill to improve end of life care for homeless people.
Of course, these stages are just a means to an end. The ultimate goal is to ensure that someone needing end of life care, who has a history of substance use, is listened to and treated with respect when they access healthcare, be it through their GP or a hospital. We want to ensure that their health conditions are explored as thoroughly as they would be for someone who is not using substances.
If appropriate, they should be referred onto a pathway to good end of life care specialists and support services. The current emphasis on ‘recovery’ should be relaxed for those people with problematic substance use who are dying. All of these services should also support people’s families who might be providing vital care – keeping them well informed and involved is vital because people with substance problems may have problems with understanding and memory. They need advocates and family support where possible.
Unique role for Chancellor’s Fellowship
The Chancellor’s Fellowship brings the prestige and resources of Manchester Metropolitan University to bear on this complex issue. It is an important catalyst that hopefully can lead to transformation at many levels. We’ll keep you posted on how things go this autumn.
Sarah Galvani is Professor of Adult Social Care at Manchester Metropolitan University. Her Chancellor’s Fellowship takes place during autumn 2018.