In recent years there’s been a lot of attention and energy devoted to reclassifying addiction from a disease to something else–a “disease” of despair, a lack of social connection, a product of injustice and hardship, a product of deprived environments, a learning disorder, etc.
The hope among public-health officials has been that such messaging decreases the moral stigma that traditionally surrounds addiction, and instead will inspire suffering people to stop blaming themselves and get professional help. But newly published research suggests this framework “may have unintended negative consequences.”
The results of a new study suggest that, for many people who need help, “I have a disease” translates to “There’s nothing I can do about it,” or “It’s out of my hands.”
So . . . should we stop talking about it as a disease?
I’d say no, for a couple reasons.
First, it is a disease.
Second, I suspect that the problem is not with addiction being categorized as a disease, it’s the context for that categorization. I’d imagine there are contexts in which it’s harmful and contexts in which it’s helpful.
Off the top of my head, these contexts might revolve around questions like:
- What treatment outcomes are possible or can be expected for this disease?
- Who’s responsible for treatment?
- If the expected outcomes are not achieved, who is responsible for that? And, how should we respond?
What treatment outcomes are possible or can be expected for this disease?
If the patient assumes the prognosis is poor, I’d imagine that diagnosis is likely to have negative consequences, like a loss of agency.
However, I imagine health professionals deal with this situation every day. Patients hear diagnoses like cancer, asthma, or heart disease and assume that the course of their physical well-being is out of their hands.
I hope that, where the prognosis is not poor and active client participation is an essential element to effective treatments, providers have approaches to mitigate the potential loss of agency that may accompany a diagnosis.
What happens if the provider is pessimistic about the prognosis? How does that influence care? How does the provider explain the poor prognosis?
Off the top of my head, I see 4 possible explanations a helper may arrive at:
First, they may conclude that they are not a very good helper. Few providers will give this serious consideration.
Second, they may conclude that we just don’t have good treatments for this disease–the disease is too difficult treat. This is much more common. Whatever the drug crisis of the moment is, that is considered to be particularly difficult to treat. (Crack, then methamphetamine, then opioids.)
Third, they may conclude that the disease is treatable, but the patient is too difficult to treat. They may believe that their clients are too complex, that they don’t want recovery, that they are too chaotic and difficult to engage or retain. This is more common yet. The belief is, “I am competent, we have the knowledge and skills, but these clients won’t/cant cooperate.”
Fourth, they may believe that the disease is treatable but the context makes it impossible to effectively treat the disease. They may believe that these clients can’t be effectively treated because they are too poor, they are homeless, their living environments are too hostile to recovery, they face legal and employment barriers, etc. This may be the most common. With this explanation, like the second and third, the professional experiences a loss of agency.
Who’s responsible for treatment?
Is treatment something that is delivered by a professional who is believe to possess the important knowledge, skills, tools and plan?
Does treatment narrowly focused on pills and procedures? And, is a “good patient” a passive, compliant patient?
Or, is treatment a partnership between the patient and professionals that is based on listening, understanding, shared decision-making, and shared responsibility? Treatment of this kind may involve pills and procedures, but may also involve much more, including behavioral strategies, and interventions to address barriers to treatment.
If the expected outcomes are not achieved, who is responsible for that? And, how should we respond?
When we don’t get the outcome we wanted, who do we ascribe responsibility to?
Is it the patient’s fault for not following the treatment plan? If we share responsibility, there may be some truth to this at times. However, shared responsibility requires that we don’t stop there. If the patient didn’t adequately participate in treatment or didn’t follow the plan, we should consider:
- Did the patient have sufficient input on the plan?
- Was the plan aligned with the patient’s goals? (Recognizing that goals often change before and during treatment.)
- Did we adequately explore and plan for barriers the patient is likely to encounter?
- Did we approach the patient in a manner that contributed to a loss of agency rather than using approaches then enhance agency?
Do we blame the illness for being too difficult to treat? In this case, we should consider the following:
- Is the illness really that difficult to treat, or are we unwilling to invest the necessary resources to achieve remission?
- If there is no silver bullet treatment, informed consent becomes more important. In this case, what combinations might make sense?
- Is seeking to reduce symptoms and harms while we wait for better treatments the best we can do? If so, do we communicate this to patients?
- Do combinations of treatments move us closer to, or increase the likelihood
Do we blame the provider?
- Are they providing treatment in an adequate dose and intensity?
- Was the treatment of adequate duration?
- Was the treatment of adequate quality?
- Is the provider attending to extra-therapeutic factors that are likely to influence outcomes?
- While some providers are sure to be poor caregivers, others may be under-resourced.
Do we blame the context?
Do we blame the environments that patients are coming from? Where applicable, do we blame criminal justice policy, homelessness, employment opportunities, anomie, health care policy, social determinants of health, etc.?
Of course, all of these things influence what we’re able to do for patients and the outcomes we achieve together. And, of course, many of these needs fall outside the narrow purview of “addiction treatment.”
We can say, “that’s not my system’s/agency’s job” and complain about other systems’ failures to meet or clients’ needs. We can confine our efforts to reimbursable services. That’s a pretty easy position to defend.
While that is an easy position to defend, it indicates the absence of a mission-based commitment to recovery and our patients.
Anecdotally, it appears to be the smaller, community-based programs that develop housing programs (before any funders would considering reimbursement for these services), employment programs, maintain pantries, and provide meaningful linkages with indigenous sources of recovery support.
I routinely encounter patients from corporate providers who received a time-limited, often high-intensity, dose of treatment followed by inadequate continuing care. The continuing care is often a passive referral to an unaffiliated low-intensity outpatient program near their home. (In the worst cases, corporate programs will complain about smaller, community-based programs that do not adapt their services to accommodate the needs of poorly served corporate patients.)
When I’ve reached out on behalf of patients, the help available to them is entirely contingent on funding.
If there are negative consequences to receiving a diagnosis of addiction, it’s worth asking whether it’s the diagnosis itself of something else.
Maybe we don’t need to nuance the language for our patients. Maybe we need to do better for our patients.