As a GP in inner-city Glasgow in the 1990s, I looked after patients with heroin addiction. I got to know many of them well, I knew their families, I immunised their children and, distressingly, I saw some of them die. Because of the nature of general practice, I saw the dreadful impact of those deaths on their families and on their communities. Sadly, I saw few recover – in the sense of resolving their problems and moving on to achieve their goals. There was very little choice around treatment – though some wanted to attend the addiction clinic, many did not.
In the 2000s, our practice started a methadone clinic. It was called ‘shared care’ because they also attended the specialist service. Things got better for many and there was more of a sense of ‘doing something’. Apart from community detox (which was not infrequently requested), methadone was really the only choice on the menu. I am ashamed to say that my expectations were low. There was a feeling of ‘this is as good as it gets’. The idea of our patients accessing residential rehab wasn’t really in our minds and would have seemed fantastical.
Alcohol patients would sometimes be referred by us to a local inpatient unit, be detoxed and then come home with little, if any, community support. Return to drinking was the norm. Back in those days, I had never heard the term ‘mutual aid group’ and would not have rated such interventions in any case. I had two patients that I knew about who went to AA, so that did get on my radar, but back then it was generally a case of ‘doctor knows best’.
I certainly didn’t rate lived experience and while I listened to my patients and treated them with compassion, I can’t say there was any great element of us making decisions together. Looking back, I can see that there was a problem with my approach: it turned out this doctor who was making recommendations for treatment didn’t know much at all about addiction. My learning about addiction came about dramatically when addiction happened to me, but that’s a different story.
Fast forward a couple of decades and treatment is much better. The evidence base has grown, waiting times are said to be reduced and there is more choice. For those with opioid use disorder, we have methadone and buprenorphine. A newer, long-acting preparation of buprenorphine looks like, for some, it gives several advantages over tablets. We have much more widespread distribution of naloxone and a greater public awareness of addiction as a health issue. Several newspapers now support progressive policies to tackle Scotland’s appalling drug deaths in a way that would have been unimaginable in the 1990s.
The MAT (medicated assisted treatment) standards set a high standard for treatment access and for choice of medication and for how long to remain in treatment. Nowadays, the concept of partnership is embedded:
“Person centred care-planning that focuses on personal goals, with services working in genuine partnership with people, will result in more effective care and a better experience for people using services.”
MAT Standards, 2021
However, this issue of person-centred care with the patient as partner is an aspirational one that is hard to achieve. The MAT standards, not unreasonably given the evidence base, start from a position that choice is about which opioid to commence. The ability to choose something other than MAT in a way that identifies and manages risks, offers mitigations, and supports safer routes to reach one’s goals, is not outlined. While the principle is person-centred, the standards are fundamentally driven by public health concerns. Again, very reasonable given our public health crises in drug and alcohol deaths.
At a presentation on the MAT standards a couple of months back, intrigued by the notion of individual choice, I asked about exit routes from treatment, given that the standards emphasise that individuals should decide how long to stay in treatment. The answer was that individuals could ‘go back to their GP for prescribing’ when they wished to exit specialist services. I was disappointed by that answer. It wasn’t really what I had in mind and clearly wouldn’t remotely satisfy those who want to move to abstinent recovery.
In the work we’ve been doing on behalf of the Scottish Government in the Residential Rehabilitation Development Working Group it has become obvious that meaningful choice in treatment is limited in many parts of Scotland. This week a national newspaper drew attention to the plight of someone wanting to move on from MAT who was allegedly told there was no resource to do this. The Drugs Policy Minister stepped in to help.
It is certainly true from the evidence our group heard that access to residential rehab is not available to all and where it is available, the route to get there can be difficult to navigate. In terms of barriers, funding challenges and pathways are major issues, (if you are well-off, no problem) but so too are culture, attitude and the beliefs of individuals who may influence access.
It’s a fact that some people in MAT want to move onto abstinent recovery via residential treatment. However, residential treatment is mentioned only once in the MAT standards, and that’s to identify risk rather than advise on how such transitions can be managed safely as part of a comprehensive treatment system. Is there still an attitude of ‘professional knows best’ when it comes to treatment choices?
Choice and partnership in decision making are topical subjects. In JAMA this month, Yaara Zisman Llani and colleagues write in favour of Shared Decision Making (SDM). They outline the principles underpinning this approach:
- Eliminating power asymmetries between clinician and patient
- Acknowledging that there are at least 2 expert participants: a patient having lived experience expertise, a clinician having professional expertise, and sometimes a family member
- Eliciting patient preferences for their involvement in the decision making (autonomously, conjointly with clinician input, letting clinician make decisions) and eliciting the patient’s specific values that could guide the decision (eg, reducing medication adverse effects)
- Discussing at least 2 treatment options (eg, taking, tapering, or stopping antipsychotic medications)
- Making a decision that aligns with the patient’s goals, preferences, and values that also makes clear the risks involved in particular decisions
- Accepting that the patient’s choice of treatment plan may differ from the clinician’s recommendation.
The article addresses these goals as applied to psychiatry settings, but they are valid in addiction treatment and support too. How prevalent are power imbalances and how much weight is given to lived/living experience expertise? According to this research, Shared Decision Making is not happening much. The authors say this relates to clinicians’ beliefs that their patients are impaired and that this can be a form of stigmatisation, resulting in discrimination and ‘paternalistic decision-making’.
Their solutions are to introduce training on Shared Decision Making and create a level playing field with clinician and patient bringing expertise to the encounter where decisions around treatment are to be made. I think we can add to that by ensuring that clinicians are informed about all treatment options and understand them. Of course, the same should be true for our patients; we have a duty to explain the range of options.
If I examine my own practice, I think I am better at this than I used to be, though still have much to learn and relearn. I am much more aware of the authority that is afforded to me in my role and while I hold my own experience, beliefs, and biases, I am more mindful of how I need to find a shared space with the patient, while still being honest about the risks and mitigations. I do see patients who are impaired – particularly around lack of insight – creating challenges around how to navigate joint decision-making.
Decisions about treatment for opioid use disorder are not simple, but the principles around the making of those decisions ought to be. What is often missing when options are being considered is the need to make the link between what the patient and their family wants from treatment and the outcomes with which that particular treatment is associated, including those around quality of life. For instance, how often does rehab come up in discussions about treatment options? I’ve heard so many reports now about a desire to explore it being raised by individuals and their families, only for this to be dismissed by professionals. While this option may not be right for an individual at that time for a variety of reasons, it should be part of the discussion.
Another gap is almost certainly around how we introduce and effectively connect our clients to mutual aid and LEROs. (This is a real issue: the evidence base is strong and growing yet, when surveyed, less than 1% of service users in one Scottish city had ‘ever’ been to a mutual aid meeting.)
I have been, and still am, a proponent and prescriber of MAT, but I’m also a proponent of choice in treatment. If those of us who work in substance use disorder treatment keep the evidence base close (and seek to expand it beyond prescribing), understand the options, know how to mitigate the risks, and have shared decision-making at the heart of all we do, then those seeking our support and their families can only benefit from increased choice through joint decision making.
Continue the discussion: @DocDavidM
 Zisman-Ilani Y, Roth RM, Mistler LA. Time to Support Extensive Implementation of Shared Decision Making in Psychiatry. JAMA Psychiatry. 2021 Aug 18. doi: 10.1001/jamapsychiatry.2021.2247. Epub ahead of print. PMID: 34406346.