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As addiction is a chronic disease and medicine has been treating chronic diseases for years, we actually have something to look at in this case. We can look at how the rest of the medical world measures their chronic diseases and compare that to what we’re measuring in Addiction.

The first thing measured in any chronic disease is adherence to the care plan. For Diabetics it’s taking medicine, a good diet, and moderate exercise, etc. For addiction it’s don’t use, don’t use anything else, and participate in a recovery program. That’s actually as far as we’ve gotten. What we’ve been measuring isn’t relapse, though we call it that. Relapse is the return of previously suppressed symptoms and we’ll get to that in a minute, but what we’ve been measuring is only the patients adherence to the plan of care. At least we were doing that much.

But adherence isn’t very good in any chronic disease, something like 30-40% is about as good as it gets. People get tired of being sick. They long for a vacation from abnormality. They want to behave and feel like a normal person. They want to forget they’re ill, and to do that, they have to forget the care plan. Are addicts any different? Not in the least. Addicts get tired of having to know they’re different. They just want to feel normal and so, like diabetics, they forget they’re ill and try to live without the care plan from time to time. And it’s important to adhere to the care plan, because, hopefully, it’s what’s keeping those symptoms suppressed.

Has it been a minute yet? We’re ready for the symptoms. For a diabetic the symptoms would be loss of control of blood glucose levels. In addiction the symptoms, are not drug use, but the expression that led to the use of drugs in the first place. Those are largely the low dopamine symptoms I’ve written about elsewhere so I won’t go into a big discussion here. I only want to mention that when we have measured these in our field, since the role of symptom was already being mistakenly taken by drug use, we had nothing to call these symptoms but co-morbid illnesses. We’ll get back to measuring co-morbidity in another minute.

So we have adherence to the care plan and symptom suppression. They actually exist in a kind of circle. If you don’t adhere, you get symptoms. As you suppress symptoms the urgency of adherence goes away and you tend to non-adherence. Any understanding of outcomes of a chronic disease has to take into consideration the non-linear nature of the natural history of a chronic disease. We’ve been trying to measure a donut’s circumference with a yard stick, perhaps possible, but needlessly difficult.

We need to also measure function. Treatment of symptoms doesn’t do the patient or society a whole lot of good unless we restore the patient to full function, or as close as we can get. Here we have things like relationships, work, ability to take care of the normal duties of life. Addiction outcomes have measured some of these, and it’s becoming more popular to do so. One thing we rarely do is ask the patient’s spouse how they are doing. That would be an eye-opener I’ll bet. So, how’s the relationship? How’s work? That’s an outcome of treatment for a chronic disease as well. Has it been another minute already? Time flies when you’re talking about outcomes. So now on to co-morbidities.

With co-morbidities we actually have two subjects: those illnesses that naturally travel with the chronic disease who’s outcome we’re measuring and those illnesses caused by the disease we’re measuring. Of course, we’ll look at the last one first. In diabetes we’d look for changes in vision and any sign of developing heart disease among other things. For addiction we may look for sequelae of drug use or of the use of compulsive behaviors (gaining weight, losing money, etc). Those we’re used to, but are there really illnesses that are naturally co-morbid with addiction? I personally doubt it. When you look deeply at what we’ve called commonly co-morbid illnesses, you find the primary symptoms of Addiction. Sure people have Addiction and Major Depression, but no more often than a population under stress gets Major Depression. Sure you see Bipolar Mood Disorder and Addiction, but no more often than you see Bipolar Mood Disorder in non-addicts, if you understand the bipolar nature of addiction itself. OCD? Schizophrenia? All about in the same amounts you’d see in anyone else. The closest I can come to understanding a true co-traveler with Addiction is PTSD and the only mechanism I can imagine is the consequence of the patient’s parent having Addiction so, it too, is a sequela, not a fellow traveler.

So, what should we measure? Not using? Certainly. But it can’t end there. We need to measure not only adherence but symptoms. And we need to measure them in a way that is informed by the circular nature of their relationship. We also need to measure function, both social and occupational. What Addiction outcomes lack most is the surveillance of sequelae. We can’t measure 6 month outcomes, it’s a chronic disease. We need to measure outcomes for life.

One other thought on outcomes, and here, even the rest of medicine is behind. We need to consider the patient’s goal in their recovery from a chronic disease. We may have the ethic that the patient should function as well as possible for as long as possible and die of something else. That may not be what the patient wants. If we decide to measure things that are not in the direction of the patient’s wishes, we will not likely show success. Our field needs a vigorous discussion about this, as we are particularly resistant to hearing the patient’s goal when we come up with a treatment plan.

Like underwater reefs, hidden barriers can rip the bottom out of a patient’s ship as he tries to sail into safe harbor. And like any harbor manager, treatment programs like to look down and see their port filled with busy and vigorous ships producing lots of commerce. In the case of the treatment centers, it’s lots of healthy recovering patients staying sober. And in both cases, the harder you make it to get into your harbor, the more likely it will be that only the better equipped ships with the least damage will get in.

Of course there’s  a constant tension between profit and outcomes. The harder you make it to get into your treatment program, the fewer people you’ll be able to treat. A good port changes itself to fit its customers by providing berthing and services that are varied and can accommodate a wide range of ship types. That’s what we ought to do as well, let in everyone and make ourselves flexible enough to handle the diversity.

If you ask treatment providers, 90% will tell you they already do that. If you ask drivers, 90% say they are above average drivers, too. So let’s not ask treatment providers, let’s think about this from the patient’s perspective.

What if I don’t want to go to AA? What if I really don’t want to try for full abstinence? What if I don’t believe I’m ill and should stop drinking? Our traditional answer has been, “Well you’re not ready. Go back out and drink some more until you’re ready to do it my way.” How arrogant can we get?

So we only take patients when they’re ready, and we show our outcomes to the world as if they were our creation. It reminds me of a line in a poem by New Orleans poet, Brod Bagert, “Born on third-base and think they hit a triple.” That’s us, working with a selected population and thinking we did all the work. I guess we did do the work; we set up the barriers.

The one thing we most commonly ask is, “Are you ready to stop?” And what’s the one thing we measure? Staying stopped. That’s a little self-serving isn’t it? What if the patient got to pick the outcome? What would he pick? And what’s the point of our treatment?

We’ll start with the last one first. The point of treating any chronic illness is to suppress symptoms and prevent progression. If you’ve been reading this blog you know that I think addiction symptoms start before the first “drug” use and, in fact, lead to the drug use. What most people with addiction will pick as a goal is to feel better, to be able to function normally, and, if given the choice, at the beginning of treatment they would probably not pick spiritual enlightenment as a goal. Does your doctor say things like, “Alright lady, if you don’t lose 100 pounds I’m not treating your diabetes,” or, “Cut out the salt or you and your high blood pressure are out of my practice,” or, “Buddy, get rid of the dog, or I’m not giving you your asthma medicine.” What if Buddy’s goal is to do the best with his asthma that he can while still keeping the dog he loves?

Someone’s out there saying, “That Wetsman guy just wants to give people medicine and let them drink if they want to.” No he doesn’t. Let me tell you about Carlos (obviously, I’m not using his real name), a guy I saw this week. He came in for opiate dependence and has stabilized on Suboxone. He’s been in the IOP but has had trouble making it to sessions and individuals because of work and because he’s not sure he needs treatment. He’s almost finished the IOP portion of the program now and saw me this week for his medication follow up. He asked when he could get off of Suboxone. When I asked Carlos what, if anything he had used to alter his mood or his mind in the last month he said, “Nothing, just a couple of beers but that’s alright, right?” I told him that we have statistical studies showing that people who use any drug will more likely relapse onto the one they’re trying to avoid and since his goal is to not use opioids he would be wise not to use anything, including alcohol. We also talked about meetings outside of treatment which he had not been attending for the last couple of weeks. I told him that recovery changes his brain and if he stopped his medicine now without having a strong recovery program he be most likely to have the brain he had before treatment. He said, “And that’s the brain that used drugs, huh?” Sounds kind of good, like Carlos is making progress. But only if you think Carlos’s goals are important. If my goals of no drug use and working a strong recovery program are the goals, he’s taking his sweet time. Where would Carlos be if I’d said weeks ago, “If you’re not ready to work a program, you’re not ready, so get out.”

Some may fantasize that Carlos would be sitting in a 12-step room listening to a speaker, but, while I’d love to believe I’m that powerful and persuasive, it’s more likely that Carlos would be out of treatment and using again, if not in jail. As addiction treatment has been divorced from medicine for a long time, it will be a difficult reconciliation. The fields have different languages and different ethics. In medicine it would largely be considered unethical to refuse treatment if a patient didn’t follow instructions. What would be required is an intervention aimed at making sure the patient understood the instructions and was competent to make a decision to ignore the advice. So, what does all this have to do with outcomes?

We’re going to have to change how we think of outcomes. Six months of no drug use isn’t going to cut it. We’re going to have to understand that this is a chronic disease and the success of treatment is suppression of symptoms and prevention of progression, and not just for 6 months. The first outcome starts before treatment; how many people who call actually get assessed? Then how many assessed actually enter the program? While low percentages getting in may make for better six month sober rates, they mean less people with the disease get help and that’s a bad outcome. Then, once people are in the progam, do they stay in care. I’m not saying do they stay in inpatient care, or IOP; I’m saying all care. It’s not bad if the patient decides to leave inpatient care after a week. Maybe he’s right and it’s not for him. Are people who make money off of his staying in the best position to decide? But does he stay in care when he leaves? “Yes” is good, “no” is not. So another outcome that starts before treatment is how we design our program. Are we a hammer that only treats nails or are we a toolbox full of solutions for people suffering from this disease?

As we move forward to make sure that we’re comparing apples to apples in outcomes we have to recognize that programs that only take a small percentage of people who call are not better programs because they have higher 6 month sober rates. We should be judged by how many ships that approached our harbor are still safely inside, not the percentage of nice clean vessels that have carried gold to our shores. That’s enough on how barriers effect outcomes. Next time I’m going to write about how we actually need to measure different things after treatment than we’re measuring now.

The field of medicine often speaks in terms of outcomes, that is, how well did the treatment work. When dealing with acute illnesses such as Strep Throat we could measure such things as the incidence of negative strep cultures 5 days after treatment or the incidence of complications such as rheumatic fever. Acute illness is a very clear case. The person was well and got sick. They were treated and got well or not, or well with complications or some residual from the illness.

Chronic conditions are different. Since they can’t be cured and can only be controlled, the outcome of “well” is removed from the equations. Even if the person has a well controlled illness with not complications they are not “well” because they require continuing care. Let’s take the oft used example of Diabetes Mellitus (DM).

A person who has no known history of DM loses consciousness at work and is rushed to the hospital. In the Emergency Department the work up shows a blood glucose of 600 (about 6 times normal) which explains the loss of consciousness. The patient is give the correct treatment for the acute emergency and is stabilized enough to be admitted to a medical floor. Once there, a diagnostic work up is done to determine if there is a curable cause of the elevated blood sugar. If such a thing is found (some medications, infection, pregnancy, etc) then the patient doesn’t have DM, they have another type of diabetes (Diabetes of Pregnancy for instance). If the work-up can find no known cause then the patient likely has DM and the correct treatment for this CHRONIC AND INCURABLE illness is begun. The treatment in the hospital is aimed at medical stabilization of the acute symptoms and some education on how the patient should change his or her life to accommodate the illness. Further treatment on an outpatient basis, while the patient is in their actual life, is done to “fine tune” the necessary medical treatment.

One common outcome watched in DM management is Hemoglobin A1C which is the blood’s hemoglobin molecule changed by a high blood sugar, evidence that the patient had a high blood sugar recently. So as that measure is followed and found to be normal the diabetes is considered in control, but the patient is not well. Additionally, the finding of a high Hemoglobin A1C later is not evidence of failed treatment, but evidence of less controlled disease. A search is then launched to identify possible causes of the loss of control and interventions aimed at re-establishing stabilization are instituted.

Enough about DM, this is an Addiction blog. So let’s look at how our field has looked at the illness we treat and measured our success or failure. We rarely, as a field use medical stabilization. Oh yes, we do medical withdrawal, but that is a very time limited thing much like the emergency treatment for diabetic coma. The longer medical stabilization should be aimed at suppression of the primary symptoms, the things that led to the drug use in the first place. Instead we start talking to the patient about changing their life while their symptoms are still out of control.

Our treatments are quite time limited and often take the patient needlessly out of their lives, returning them after treatment with little or know follow up. People need to live with the chronic illness in their real life and so the treatment should be crafted to fit that life unless there is some compelling reason to take the person out of it for a while.

Finally we measure the success or failure of our treatments much the way physicians do with Strep Throat. We report such things as continuous abstinence at 6 months or 90 days as evidence of failure or success. We rarely mention that the abstinence if “successful and continuous” was accompanied by the use of some other compulsive behavior or drug that was not the focus of the first treatment. We also rarely take into account how engaged the patient is in his recovery even if he has had a slip with the drug or behavior that was the original focus.

One more thing I’d like to point out before I discuss outcomes more specifically. Physicians would never report outcomes of DM patients who evidenced motivation differently than those that did not. If the lack of motivation is found to effect treatment than it becomes inherent on the diagnostic process to monitor for low motivation and to include proper interventions in the treatment. Also an Emergency Department would never have someone at the door measuring motivation or building barriers to evidence motivation when they are overcome. Our field routinely does that. I recently called a treatment program that offered medically assisted “detox” that reports “success rates” of over 85% meaning that 85% complete the “detox” protocol. I told them I was an opiate dependent lawyer seeking treatment and asked how long did the treatment take. I was told it was about 18 days, and so I asked if I’d be able to work during that time. The intake person said it would be unlikely as I’d be pretty sick during the 18 days and heavily medicated. Inherent in this interaction is a barrier that requires people who can afford it and afford to not work for 18 days, have enough social support to be heavily medicated for 18 days, afford the medication, and not have a job that would penalize him or stigmatize him for missing 18 days. When the program states its outcomes it does not tell us about these inherent barriers.

So I’m going to write two articles next on outcomes. The first is going to address the nature of hidden barriers and what we can do to more accurately compare apples to apples, and the second will concern some different, and perhaps more appropriate, outcomes we could measure.