What do patients want when they come to treatment? A large scale study in Scotland published in 2004 (DORIS) suggested that the majority (57%) of those coming to treatment wanted to achieve a goal of abstinence. The finding was both welcomed and condemned depending on perspective. “Of course that’s what people are going to say,” was a commonly heard response.
For some DORIS seemed like an attack on harm reduction and on ORT (opioid replacement therapy), the prevailing treatment option.
I remember thinking that even if it’s not 57%, some service users clearly do want abstinence and, more impressively, some have actually achieved it. I was more interested in answers to the questions: how have recovering people done it and how can we help those who want to move to abstinence make the process safe and successful? When DORIS was published, The Road to Recovery, the Scottish Government’s drug policy, was still four years away.
A good outcome:” being better”
Ten years later, a new study takes a nuanced look at what service users and their families want from treatment and finds they ‘place weight’ on abstinence and ways of maintaining abstinence. That’s what ‘being better’ is about for them it seems.
The Francis Report (2013) reminds us to put service users at the heart of health care and researchers from the respected Leeds Addiction Unit were mindful of this when they set out to find out what service users and family members thought of as ‘a good outcome’ from treatment.
The challenges around defining what constitutes a ‘good outcome’ are considerable. Abstinence can seem like an absolute term (though there are various views on what it actually means) and in any case it gives little indication of life quality. Recovery, on the other hand, may encompass more complex domains like “physical, biomarker, psychological, psychiatric, chemical dependence and family, social and spiritual.”
What was done
Six focus groups involving 24 service users and 12 family and friend members were recruited from a broad range of treatment modalities and recovery journeys. Interestingly, while SMART members were surveyed, it’s not clear that 12-step members are represented. Despite setting a focus group up for them, nobody attended from the methadone programme. However a significant number who did participate in other groups had been on ORT.
Twenty ‘outcome elements’ were identified and categorised into sub-themes. The numbers mean we have to be careful about generalisation, but the purpose of this type of research is to look at themes and detail, which is valuable in a different way. The numbers are good for a qualitative study.
What did they find?
On abstinence: “Many felt that stopping substance use was a prerequisite of effective treatment and created a virtuous circle of feeling better, which in turn helped to motivate more effort to make change.”
On ORT: “The use of medication, such as methadone, was discussed and especially so in the court mandated rehabilitation group. It was felt that substitute prescriptions masked the problem and were simply a parallel addiction…The use of methadone can support an individual in a controlled and managed way. It can also reduce the risk of injecting behaviour. However, SUs felt that even with these benefits, their end goal was to be free of heroin and any substitute drugs.”
The researchers found dramatic improvements in health and that these “naturally happened with abstinence.” Service users found structure and activity important when recovering from addiction, relationships improved, but at the same time they had to let go of using and drinking friends. Participants also developed coping skills to deal with cravings.
What does it mean?
Perhaps mindful of the reaction to the DORIS study, the researchers reinforce the value of other outcomes that recovering people may achieve earlier on.
The weight given to abstinence, strongly supported by family and friends, may be controversial. Of course, this does not mean that other outcomes, which some may consider less ideal, are not worthy achievements.
In an ideal world there would be a range of options laid out to service users coming for help. This would stretch from needle exchange to rehab and while this happens in some places, it is patchier in others. It’s not just about having the option though, it’s about having a vision that people can and do move on into abstinent recovery. If recovery were embedded in every service at every part of the journey, then outcomes are likely to be better.
Service users don’t always get what they want from services and that can be because expectations are unrealistic or that it is going to take time to get where they want to go. Sometimes though it is because what the service user wants and what the addiction worker thinks the service user wants are mismatched. There are still practitioners around who believe that methadone is for life. A lot of the time it is because the bar is set low – think of the UK workers who estimated only 7% of their clients would ever recover.
Recovery has a voice
Service users and recovering people have found a voice though. They have found it in service user groups and in the recovery movement. Recovery advocates are not shy about speaking up. We need to be aware that one of the reasons we have a recovery movement at all is because people wanting to recover were not getting what they wanted from our services. We need to listen. We also need to encourage service users to find a way to get what they are not being offered.
Quoted in the Telegraph recently, Professor David Haslam, chairman of the National Institute of Health and Care Excellence (NICE), said British patients should become more assertive and see themselves as “equal partners” with their doctors, with legal rights.
I think it is essential for the future of the health service and for the future health of the nation that patients understand their conditions, their treatments and work with their health advisors so they can have the best care.
Ironically Professor Haslam was talking about accessing evidence-based medication but the points could equally apply to accessing Recovery-Oriented Systems of Care (ROSC). These set the bar high with an aim of abstinent recovery – that’s what the evidence tells us clients want after all – and use evidenced interventions to help service users get there. I wonder how many of us working in the field could list the key elements of ROSC at the moment. We do need to support the service user’s expectation of what is achievable, but let them be equal partners and we need to deliver the sort of active interventions that make it happen.
I sometimes ask colleagues a question I already know the answer to. If your child were to become dependent on heroin and came to ask for help, what sort of goal would you want them to set for themselves and what kind of treatment would you expect for them? I don’t need to spell out the answers I get back. Should our clients get any less?
Summary message: the goal is abstinence
Here’s the bottom line from the research:
Broadly speaking, the desired goal is abstinence from psychoactive substances. A second tranche of outcomes are about achieving changes that maintain the abstinence goal. A third tranche, and seen rather as a bonus, were the positive benefits of abstinence, for example, improved health. We believe that practitioners will find it helpful to be mindful of the ‘being better’ goals while recognising that the day to day business of therapy often means negotiating small steps along the way to the desired goal.
The DORIS study reported shockingly low levels of abstinence in treatment services in Scotland. I think we are doing better now than ten years ago, but we need to do better still. Here’s the main sentence in the paper that stands out for me; the one that captures the essence of the study in a nutshell.
In general, it is fair to say that SUs [Service Users] look for tough criteria to define ‘being better’ – perhaps tougher than their practitioners.
So how are we going to respond?
Thurgood, S., Crosby, H., Raistrick, D., & Tober, G. (2014). Service user, family and friends’ views on the meaning of a ‘good outcome’ of treatment for an addiction problem Drugs: Education, Prevention, and Policy, 1-9 DOI: 10.3109/09687637.2014.899987
McKeganey, N., Morris, Z., Neale, J., & Robertson, M. (2004). What are drug users looking for when they contact drug services: abstinence or harm reduction? Drugs: Education, Prevention, and Policy, 11 (5), 423-435 DOI: 10.1080/09687630410001723229
This review and other research analysis appear on Research Blogging.