More than a decade ago, Thomas McLellan and colleagues (2000) published a seminal article in the Journal of the American Medical Association comparing addiction to such chronic primary health disorders as cancer, diabetes, and hypertension. In their analysis of these conditions, they noted a similar mix of risk factors, recurrence patterns, and problems of patient adherence to recommended treatments and related lifestyle changes. The article defined addiction as a chronic health problem whose effective management should parallel proven approaches to other chronic medical disorders. The article, because of the prominence of the authors and the journal in which it was published, marked something of a “tipping point” in calls to extend addiction treatment from models of ever-briefer acute biopsychosocial stabilization to models that offered the option of sustained recovery management for those with the most severe, complex, and enduing substance use disorders.
In the years since the McLellan et al. publication, considerable progress has been made in conceptualizing this shift and defining how clinical practices would change within various approached to recovery management. I have been deeply involved in this movement, particularly in marshaling the scientific evidence to guide this redesign process (White, 2008b; Kelly & White, 2011), but in recent years, personal encounters with cancer have afforded me an unexpected source of new insights into the question, “How would we treat addiction if we really believed it was a chronic disorder?” This article draws from these personal experiences to compare the treatment of cancer and the treatment of addiction.
I have long feared that cancer was stalking me. Cancer ran in my family history, with two of my immediate family members and many extended family members experiencing cancer before my own diagnosis. I was also a very heavy smoker for more than two decades before quitting in 1988, but feared I might not have escaped its long-term consequences. In the early 1990s, I was diagnosed with a blood disorder that has been continuously monitored due to the risk that it could morph into leukemia. In, 2010, a CT scan revealed a tumor on my right kidney that, due to its location and growth pattern, was suspected of being cancer by greater than 90 percent odds, but turned out to be benign when surgically removed. In 2012, I was diagnosed and treated for prostate cancer. These experiences have afforded a platform of personal experience about cancer treatment that I wish to contrast with prevailing addiction treatment practices.
Early Communication of Risk Factors
When the PSA scores in my routine annual physical doubled within one year, I was sent to a urologist who retested my blood only to find that the PSA score had risen considerably further in a month’s time. Even before I met the urologist, I filled out forms in his office that elicited four areas of information: my family history of cancer, which was extensive and included my father’s death from prostate cancer; my history of exposure to alcohol, tobacco, and other drugs (also extensive); my exposure to environmental toxins, which was higher than normal because of my work as a young man in the construction trades; and co-occurring conditions that could influence future cancer treatment options—in my case, several conditions of potential concern. Several things happened as I filled out forms in the waiting room. Frist, my fear that I was at elevated risk for cancer was confirmed. Second, I knew a combination of family history, personal lifestyle, and environmental circumstances constituted the sources of that risk. Third, I knew that I had co-occurring medical conditions that would be factors in determining any needed treatment choices and my long-term treatment prognosis. Those conclusions were reinforced by the assessment forms, educational materials in the waiting room, and by my own Internet searches on prostate cancer. In short, I was psychologically prepared to enter this world of cancer treatment even before my cancer diagnosis was confirmed.
That state of readiness made me wonder: Are those sitting in the waiting rooms of addiction treatment programs similarly prepared?
Presentation of the Diagnosis and Stage Information
My diagnosis of cancer unfolded in series of five communications:
- The latest elevation in your PSA calls for a biopsy
- Your biopsy reveals the presence of cancer in two of twelve samples
- Your “Gleason Scores” for the positive cancer samples are six and seven, out of ten, indicating a pattern of more aggressive growth
- You will need various scans to determine whether the cancer has spread outside the prostate
- You have prostate cancer that appears to be contained within the prostate and that is at an early to intermediate stage of development that will require treatment as soon as it can be conveniently scheduled.
What was striking about this was that each step involved objective data that could be compared to norms of men with and without prostate cancer and each step was accompanied by a teaching intervention. In short, I knew exactly the data the diagnosis was based upon and was taught to understand the meaning of each piece of information. Rather than having a diagnosis thrust upon me, I was invited as a full participant into the diagnostic process. This raised for me the question of how frequently or infrequently the presentation of such objective data, companion teaching interventions, and full participation in the diagnostic process occurs in addiction treatment. I suspect that much of what is characterized as “denial” and “resistance” in addiction treatment flows from the omission of the steps I experienced in my cancer treatment.
Education on Treatment Options
At the time my cancer diagnosis was made, the specialist informed me that the next step was to educate myself on the treatment options—there was no attempt to induct me into a particular form of treatment. Instead, my urologist provided me with information that outlined multiple treatment options with the risks and benefits of each objectively outlined. He reviewed these options with me and said that I would have to decide which would be best for me. When pushed by me for his recommendation, he recommended a particular type of surgery, explained why he recommended that treatment choice, but also insisted that I talk to other specialists about alternative treatment options, which his office helped to arrange.
I cannot recall a similar process in my four decades of professional involvement in addiction treatment. It would be rare indeed in addiction treatment to ask a person seeking help to interview people offering different levels of care and different modalities before making a decision about the treatment he or she thought would be best.
Open Acknowledgement of Professional Bias/Second and Third Opinions
In discussing treatment options with the urologist, he explained what his role would be if I chose various surgical options and if I chose various radiation therapies, but he was very clear in stating his bias towards surgery in my particular case and insisted because of that bias that I see others who specialized in non-surgical alternatives. When I chose to compare reports and recommendations from the surgical and radiation specialists with the oncologist who had been monitoring my blood disorder for the past seven years, the urologist was delighted that I had this independent consultant who would not be directly involved in delivering any treatment that I chose. That attitude of acceptance of second and third opinions on treatment options, and linkage for such objective consultation, are quite rare in the world of addiction treatment as I have observed it.
Objective Comparison of Recurrence and Survival Rates
There is a precision and candidness in discussing cancer treatments that I found quite refreshing. Probabilities were given for the outcomes of no treatment and the respective treatment choices available to me in exact percentages, such as five-year rates of cancer recurrence and five- and ten-year survival rates. Not only was I made aware of such rates for each treatment I was considering, but I was also given rates matched to my particular circumstances which, in comparison to the general rates, quickly eliminated some treatment options and made my best choices clearer. This was a type of “treatment matching” I had not encountered in the addictions field. For example, what data is provided to persons seeking treatment for opioid addiction to help guide their decision of multiple treatment options? In my tenure working in addiction treatment, I have never seen such comparative information routinely provided to persons/families seeking assistance. Why are such rates not available and provided for various addiction treatment options?
Candid Communication of Iatrogenic Risks
All of the providers—surgeons, radiologists, general oncologists—involved in my cancer treatment reviewed the potentially harmful effects of each treatment option I was considering. These spanned potential adverse effects during surgery (e.g., stroke, heart failure), risks resulting from hospitalization (e.g., blood clots, infection) and more prolonged postsurgical risks (e.g., incontinence, impotence). What was more remarkable was that they communicated the exact numerical probabilities of each of these risks and outlined the specific procedures that would be used to reduce these risks.
There is a long tradition of iatrogenic, harm in the name of help effects within the history of addiction treatment (White, 1998; White & Kleber, 2008), but patients entering addiction treatment are not routinely apprised of such risks nor of their frequency of occurrence, even though some data related to such risks are available in the scientific literature (Ilgen & Moos, 2005; Moos, 2005).
Access to Experiential Knowledge
The sometimes clinical precision of information about the course of cancer, treatment options and the outcomes of various cancer treatments was balanced by access to a very different type of knowledge—the experiential knowledge of patients in various stages of recovery who had experienced the exact treatment options I was considering. This was made available through face-to-face and Internet-based patient support groups and innumerable web sites at which questions could be posed and answered by the broad experience of patients—both locally and from across the world. Imagine what it would mean to individuals and families considering addiction treatment to have access to that kind of experiential knowledge before, during, and after the treatment process.
Patient Choice, Partnership, and Family Involvement
Cancer is such a terrifying diagnosis that one might well image the value of a medical superhero riding in on a white horse to take control and save the day, but cancer treatment is often quite different than that image. I had a specialist who insisted that the choice of treatments was mine, not his, and that his role was to educate me about those choices and to execute as best he could the decisions that I made. In fact, after reviewing all of my choices, I had to practically pry out of him what he thought would be the best choice for me. It was clear that what we were entering into was an extended partnership rather than my being the passive recipient of his knowledge and expertise.
One fears the “If you only have a hammer, everything looks like a nail” phenomenon when facing such a life-threatening crisis—the fear that all surgeons want to cut, all radiologist want to radiate, etc., but I had the novel experience of a surgeon talking positively about radiology treatment and a radiologist affirming that I was a good surgery candidate. What was most striking was that each specialist I saw treated me as an intelligent person who was capable of evaluating choices and making a good decision. Also striking was their comfort in including my wife in every step of the decision-making process. They listened to both of us and responded fully to all of our concerns. For example, I did not want my treatment to interfere with the forthcoming “robing ceremony” related to my daughter’s PhD completion. Information was provided on risks related to the timing of treatment initiation, and treatment was scheduled to begin right after this important event in my life. I suspect few addiction treatment programs would have been so accommodating (White, 2008a).
Education on Treatment Procedures
Once a decision had been made on the type of cancer treatment that would be best for me, the urologist provided my wife and I further information on the procedure, including a DVD illustrating exactly how the procedure would be performed. He again went over the risks and side effects, as well as their prevalence both nationally, in his practice, and at the local hospital where my surgery would be conducted. Again, I understood why this procedure was one of the best choices for me, how it was to be done, the sequence of my care, and what I could realistically expect as an outcome. It isn’t that in addiction treatment we don’t do that kind of patient education; we do. It is that the depth of patient education in the cancer arena far exceeds anything I have ever witnessed in the addiction treatment field.
I am sure there were arbitrary insurance-influenced limits on the length of my hospitalization following surgery, but the timing of my discharge was linked to very clear clinical benchmarks. These benchmarks included both factors that were not present—fever and other signs of infections—and measurable makers of post-surgical recovery, such as kidney functioning, reductions in pain, and mobility. In other words, my treatment was shaped by my personal response to treatment and not be an artificial length of stay. That made we wonder how that clinical benchmarking process could be more widely applied to the treatment of addiction.
Plan for Long-Term Monitoring
My diagnosis of cancer was accompanied by two communications consistently reinforced over the course of my treatment:
- There is a risk of cancer recurrence even under the best of circumstances (e.g., risk of recurrence even with 100 percent compliance with all treatment protocol and follow-up recommendations for preventive care).
- The morbidity and mortality associated with cancer recurrence can be significantly lowered by sustained monitoring of at least five years, and, if and when needed, early reintervention.
Part of the partnership involved not just getting through acute treatment but participating in scheduled checkups, identifying at the earliest possible time any return of cancer and, in the face of any recurrence, assertively reintervening with renewed and potentially different treatment. So I voluntarily entered and committed myself to a partnership that I knew at a minimum would last five years and probably all of my life. That did not mean that I would be undergoing active treatment forever, but it did mean that the most important risk predictors would be monitored on a set and sustained schedule. Like many cancer patients, I also received information that if I achieved five years of sustained remission, the risk of future recurrence would significantly decline after that critical milestone.
At the time I was given this information, I had been researching an interesting question: When is present recovery from addiction predictive of lifetime recovery? What I had found consistently in my review of long-term treatment outcomes studies (White, 2008b) was that the stability point of addiction recovery—the point at which risk of future relapse in one’s life dropped below 15 percent—was on average four to five years of sustained remission; precisely the range I was being given for stability of my long-term recovery from cancer. In the world of cancer treatment, patients are assertively monitored for the five years following treatment, but patients in addiction treatment receive no such sustained system of monitoring, support, and early reintervention. Why?
Absence of Contempt or Condescension
One could easily build a case that prostate cancer was for me simply a bad roll of the genetic dice, but when one looks at the larger risks of cancer in my lifetime there are clear areas of potential culpability. I was aware of my family history and yet chose heavy involvement in nicotine, alcohol, and other drug use. My overall health management (e.g., diet, exercise, stress, etc.) was not one that could be expected to lower my cancer risks, and yet my cancer treatment unfolded within service relationships completely free from judgment, contempt or condescension. In addition, I did not face any threats of punishment for the sin of noncompliance with treatment protocol. In short, I was treated like a patient who could fully and responsibly participate in my own treatment. I was not treated like a morally culpable criminal or recalcitrant child who needed to be aggressively controlled by my moral superiors—attitudes that too often still permeate the milieus of addiction treatment.
If we really believed addiction was a chronic disorder on par with cancer and other chronic primary health disorders, we would provide every person seeking assistance:
- Clear and consistent communications regarding the intrapersonal, interpersonal and environmental factors that contribute to the development of a substance use disorder
- An assessment process that is comprehensive, transparent, and continual
- Objective data upon which a substance use disorder (SUD) diagnosis is based, with normative data for comparison to the general population and to other patients being treated for SUDs.
- Objective information on the severity (stage) of the SUD
- Objective information on treatment options matched to the type and severity of the SUD
- A declaration of potential professional/institutional biases related to diagnosis and treatment recommendations
- A menu of treatment options before making a final decision on the course of treatment
- Access to the experiential knowledge of former patients who have experienced a variety of SUD treatments and who represent diverse pathways and styles of long-term recovery management
- Personalized refinements in treatment based assessment data and individual responses to initial treatment
- At least five years of monitoring and support following completion of primary treatment
- Assertive reintervention and recovery restabilization in response to any signs of clinical deterioration
- A long-term, person- and family-centered recovery support relationship based on mutual respect, and free of contempt or condescension
It really is that simple. If we believe that addiction in its most severe forms is a chronic disorder, then let’s treat it like we really believed it.
Ilgen, M., & Moos, R. (2005). Deterioration following alcohol-use disorder treatment in Project MATCH. Journal of Studies on Alcohol, 66, 517–25.
Kelly, J. F., & White, W. L. (Eds.) (2011). Addiction recovery management: Theory, science, and practice. New York, NY: Springer Science.
McLellan, A. T., Lewis, D. C., O’Brien, C. P., & Kleber, H. D. (2000). Drug dependence, a chronic medical illness: Implications for treatment, insurance, and outcomes evaluation. Journal of the American Medical Association, 284(13), 1689–95.
Moos, R. H. (2005). Iatrogenic effects of psychosocial interventions for substance use disorders: Prevalence, predictors, prevention. Addiction, 100(5), 595–604.
White, W. L. (1998). Slaying the dragon: The history of addiction treatment and recovery in America. Bloomington, IL: Chestnut Health Systems.
White, W. L. (2008a). Toward a philosophy of choice: A new era of addiction treatment. Counselor, 9(1), 38–43.
White, W. L. (2008b). Recovery management and recovery-oriented systems of care: Scientific rationale and promising practices. Pittsburgh, PA: Northeast Addiction Technology Transfer Center, Great Lakes Addiction Technology Transfer Center, Philadelphia Department of Behavioral Health & Mental Retardation Services
White, W. L. & Kleber, H. D. (2008) Preventing harm in the name of help: A guide for addiction professionals. Counselor, 9(6), 10–7.