Most of us know someone with a chronic disease. I think of my friend who has type 1 diabetes. He’s doing OK now, but he has been hospitalized on two occasions in the 25 years I’ve known him. After being discharged from the hospital, he had numerous outpatient appointments with his endocrinologist. The appointments became less frequent as his blood sugar stabilized. To this day, he monitors his blood sugar daily. My friend knows that he has to follow a daily plan to treat his disease. If he doesn’t, he could wind up in a hospital again or have to see his endocrinologist more often. In fact, this has happened on a few occasions.
My friend used to live in New York, and moved to Florida a few years ago. When he moved, he searched for and found another endocrinologist. He has regular checkups with his new physician. All seems to be going well. He has a good chance of maintaining wellness as long as his disease is monitored regularly.
The course of treatment described above is similar for all chronic diseases except for one: addiction.
I have a chronic addictive disease. However, the course of my treatment has been much different. In 1983 I was treated for 28 days , which was followed by 15 weekly group counseling sessions. I have not seen a physician since, nor has seeing a specialist of any kind been recommended to me. My disease was treated as an acute occurrence.
As long as treatment for addictive diseases is heavily loaded on the front end, using language and practices consistent with acute care, we will be talking about a chronic disease but treating acute occurrences.
To evolve toward a chronic-care model, we need to change how we think, what we say, and what we do.
We can start by:
Not giving patients the impression that they have completed treatment once they have completed the objectives of residential care. Patients do not “complete” treatment. Remaining abstinent from substance use while in a safe, secure environment is hardly completing treatment for a chronic disease. Yet, we have given that impression.
Stopping “coin out” ceremonies or graduations. Perhaps something like a “commitment to recovery” celebration would work better. It would recognize that hard work has been done, but that it is hardly complete. It is only the beginning of a lifetime of recovery, during which there will be many celebrations.
Ceasing use of the term “alumni.” If patients do not graduate, there cannot be alumni. Changing the term to something like “friends in recovery” should not be difficult.
Acknowledging that there is no such thing as “aftercare.” There is no “before care” either. There is just “care.”
Dropping use of “primary care” as well. Let’s say that a patient begins recovery in an intensive outpatient program. Several weeks into treatment, the patient becomes unstable in his/her recovery. A referral is made to a residential level of care. The patient does so well in residential care that he/she is discharged to outpatient care. Which was primary?
Dropping the word “outcome.” We measure progress along a continuum. When we measure the quality of a patient’s recovery 365 days after completing the objectives of residential care, we are measuring progress at a point in time.
Dropping “relapse” as well. I can’t think of another chronic disease that uses “relapse.” Diabetic patients' blood sugar level is either “stable” or “unstable.” They haven’t relapsed. What constitutes stable or unstable recovery needs to be defined, but I doubt that it’s based solely on picking up one drink. I imagine that it has something to do with the consistent pursuit of abstinence.1
The language of acute care is the language of shame. Feelings of shame keep people away from treatment and recovery. Let's stop asking patients, “How many times have you been in treatment?” This is asking them, “How many acute episodes have you had?” It also conveys, “How many times have you failed?” No one has ever asked my diabetic friend, “How many times have you been in treatment?” No one asks because diabetes is recognized as a chronic disease. My friend wouldn’t even understand the question.
Also, we treat patients who need to be readmitted to residential care as though they have absolutely no experience with recovery. People began recovery when they were first diagnosed. That’s when they first start battling this chronic disease. It’s likely that coming back to a higher level of care was preceded by a period of not treating their chronic disease. Many patients go through a period during which they attempt moderate drinking. Those patients have learned that it doesn’t work. The beginner hasn’t learned that.
When we have patients who return to residential care do a first Step and tell their stories over and over, it shames them. It may not be Step 1 that they’re tripping over. The person coming back into care needs a full assessment.
Maybe we should stop asking patients to introduce themselves with, “My name is …, I’m an alcoholic.” A disease doesn’t define the entirety of a person. I’m also a teacher, a husband and a person in recovery. Maybe all I need to say is, “My name is Michael, I'm in recovery.”
Discharge planning has not received the attention it deserves. A close friend remarked, “The single most important thing that we do in treatment (residential or inpatient) is discharge planning and we give it the least amount of attention.” There's being in treatment, and then there’s the rest of your life. Which is more important?