Is treatment offering what patients and their families want?

What do patients want when they come to treatment? My own experience suggests simple things: relief of emotional pain; a healed life; to be a better mum, dad, partner, human being; to let go of shame; to have a job and to be free from the Groundhog Day experience of addiction. Modest goals.

Some people set specific goals in terms of their substance use. Wanting to control use is common. In my practice, most have set the goal of abstinence. How common is this?

DORIS

A large-scale Scottish study DORIS (Drug Outcome Research in Scotland) undertaken by academics at Glasgow University was published in 2004. Researchers 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 from detractors. It all became a bit political. Some felt that, for opiate use disorder in particular, such a goal was both unrealistic and dangerous.

For these people, DORIS seemed like an attack on harm reduction and on MAT (medication assisted treatment), the prevailing treatment mode. I remember thinking that even if the proportion seeking abstinence is not as great as 57%, it’s still true that some do want to be free from illicit and prescribed opioids. And, of course, there is the fact that there already are many people in the UK and elsewhere in long term recovery from opiate addiction – so it’s clearly been achievable for them. Why can’t our systems accommodate many needs and goals?

Independent Expert Review on ORT

There’s been an unhelpful stigma about methadone programmes which has largely failed to bend to the weight of evidence on the harm reduction benefits of being in MAT. It’s not all about stigma though. I remember taking evidence from families for the Independent Expert Review on Opioid Replacement Therapies in Scotland a few years ago. It was a bruising experience. 

The venue was a Scottish Families Affected by Alcohol and Drugs (SFAD) conference. Here’s the thing: families did not like methadone. I listened to dozens of frustrated and angry delegates on the subject. As a prescriber, I came away feeling responsible for the perceived sins of all clinicians. 

But these views had little to do with stigma – what I heard behind the anger was family members’ views that the sort of treatment we were delivering did not go far enough. Back then, what was on offer was not doing enough to help our patients and their families reach their goals, something confirmed when the review was published.

To be honest, as both a harm reductionist and a supporter of recovery, I was less interested in getting involved in the polarising debates that came out of the DORIS study, than in finding answers to the questions: how have recovering people done it and how can we help to make the process safe and more successful? 

What do service users and their families want?

Ten years after DORIS, a small qualitative study by Sarah Thurgood and colleagues from Leeds took a nuanced look at what service users and their families wanted from treatment and found that they placed weight on abstinence and ways of maintaining abstinence. That’s what ‘being better’ was about for them it seems. It chimed with my experience with the SFAD conference delegates – they had higher ambitions for those in treatment than they felt treatment was delivering.

Thurgood and colleagues found that 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 such as “physical, biomarker, psychological, psychiatric, chemical dependence and family, social and spiritual”, so it can also be difficult to pin down.

In this study, 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. 

Although an attempt was made to recruit those currently on MAT, there were difficulties with engagement. However, a significant number who did participate in other groups had been on opiate replacement in the past.

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 were 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.”

Other domains

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.”

Perhaps mindful of the reaction to the DORIS study, the researchers reinforced 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.”

Given the differing goals patients set for themselves and the sometimes aligning and sometimes opposing public health imperatives, we need a range of options laid out to service users coming for help. This should stretch from outreach and needle exchange to rehab. This does happen to some extent, but is patchy and not very joined up. It’s not just about having the options though; it’s about having a vision that people can and do move on into abstinent recovery.

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. 

Great or low expectations?

There are earnest and caring practitioners who believe that MAT is best when entered into for life. There are some convincing public health reasons why this view is held, but could it also be limiting for individuals who don’t want this? It is undoubtedly true that some of the time our expectation of what people can achieve is set too low. I’m thinking of the David Best study of the UK drug workers who estimated only 7% of their clients would ever recover. (Long term remission rates are much, much higher).

As I write I’m remembering a medical colleague (from a different city) who told me at a MAT clinic that to stay sane and prevent burnout, it would be better for me to accept that nobody was ever going to recover. This advice was too late in coming; by the time she told me, I’d already met hundreds of people who were in abstinent recovery from opiate addiction. 

It is also clearly possible to be in recovery through MAT. People can and do reach their goals on opiate replacement therapy. New options like Buvidal (long-acting injectable buprenorphine) have changed the landscape for the better. If someone reaches their goals on MAT, then there is much to celebrate and little more to be said. But I’m thinking of those who have different goals or who are not able to achieve what they want from what we have on offer – where the system is not flexible enough.

The voice of lived experience

In this regard, service users and recovering people have found a voice. They have found it in lived-experience recovery organisations (LEROs), service user groups, national organisations, and in the recovery advocacy movement.

Recovery advocates are not shy about speaking up and there is evidence that they are being heard. In addition, it seems to me what we now have activists who call for improvements in harm reduction services, but also for access to treatment options focused on recovery, like rehab. 

We need to be aware that one of the reasons we have a recovery movement at all is the very thing I’m writing about: service users and their families were not getting what they wanted from our services. Some voices may sound angry and baying. There is a reason for this. It’s easy to get defensive when we feel we are going the extra mile for our patients, but we really need to listen and open up conversations. 

Equal partners or ‘clinician knows best’?

Quoted in the Telegraph a while back, Professor David Haslam, then chair 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,” he said.

Ironically Professor Haslam was talking about accessing evidence-based medication, but the points could equally apply to accessing Recovery-Oriented Systems of Care (ROSC) which sets the bar high with regard to recovery– that’s what the evidence tells us some people want after all – and uses evidenced interventions to help patients get there. 

I wonder how many of us working in the field could list the elements of ROSCs if asked. We do need to support the service user’s expectation of what is achievable, let them be equal partners, and we need to deliver the sort of active interventions to make it happen. Enacting ROSCs would help – the intention is laid down in policy but getting it to work has proved difficult.

What did the Leeds researchers find?

I’ve digressed – back to the Leeds study. Broadly speaking they found that the desired goal in their sample of service users was abstinence from psychoactive substances. A second tranche of outcomes was 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.”

Although some of the participants had experience of MAT, this paper would have been strengthened by having input from those currently on MAT. There’s a risk of bias and of hearing only one part of a story, but, on reflection, I think the emerging themes are still relevant for debate in 2021. Who can say, particularly in light of our drug and alcohol related deaths, that we could not do better in treatment? 

Here’s the essence of this paper in a sentence.

In general, it is fair to say that SUs [service users] look for tough criteria to define ‘being better’ – perhaps tougher than their practitioners.

Thurgood & colleagues

It’s time to raise the bar.

Neil McKeganey, Zoë Morris, Joanne Neale & Michele Robertson (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

Sarah Thurgood, Helen Crosby, Duncan Raistrick & Gillian Tober (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,21:4, 324-332, DOI: 10.3109/09687637.2014.899987