CAN WE TALK?

The Disease Model, Evidence-Based Treatment, Individualized Treatment, and How We Do Our Job.

Barry Lehman MARRCH Fall Conference October 31, 2017

• Barry A. Lehman, D. Min.; LADC; LPC (retired) • Chair, MARRCH Ethics Committee • Co-author: MARRCH Synthetic Ethics Decision-Making

Process Manual • Counselor at Mayo Clinic Addiction Services • Retired Moravian pastor • No monetary or other interests or involvement

Summary • There are many implications to the “disease model” of addiction, positive and negative.

• These include • Choice vs. disease, i.e. acceptance of disease model

• A cluster of different diseases with different etiologies?

• A “syndrome” of diseases? • What might be the impact of these on the future of treatment?

Objectives • One:

• A brief history and the controversies surrounding the disease model of addiction.

• Two: • Explore differing understandings of the disease model and the implications in practice.

• Three: • Discover ways to apply (or expand) best practices to address these implications and the ethics involved in making these choices.

How I Got to This Point • Pulitzer Prize-winning book: The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee (2010)

• Cancer “relapsed” • The disease relapsed… not the patient!

• What if we looked at addictions that way?

A Thought Experiment- Challenging Assumptions

• Assumptions and doubt keep us from moving forward. (Deviate, by Beau Lotto)

• We are all “stuck” in (and with) our assumptions and biases.

• They define “reality” for us. • They control how we see the world. • We work from confirmation bias

A Thought Experiment- The Leading Questions

•  If addiction is a relapsing-remitting disease, how does that impact our treatment planning?

• What if we are not dealing with one disease but with different diseases, or at the very least significantly different forms of a disease?

•  If addiction is a disease, how can or should that impact the language we use to describe it and the behavior of individuals with it?

Definitions • The Disease Model

• Keep it simple for our purposes

• Relapse • A return of symptoms

• Relapsing-Remitting Diseases • Symptoms are at times worse (relapse) and other times

are improved or gone (remitting).

The Disease Model- History • Short History-

(from a series by William White in Counselor Magazine, 2000.)

•  Late 18th Early 19th Century • Struggle to distinguish drunkenness as a vice vs.

caused by a disease • Disease

• Cluster of physical and social problems produced by chronic drunkenness

•  “Ungovernable appetite” that overwhelms willful choice

The Disease Model- History •  1784: Dr. Benjamin Rush

•  Catalogued signs of acute and chronic drunkenness •  Medicalized language- “Odious disease”; Disease induced by vice” •  Progressiveness of disease •  Recommended treatments based on disease concept- Sober House

•  1820s Dr. William Sweetser •  A “morbid alteration” in nearly all structures and functions of body

•  1830s Dr. Samuel Woodward •  Intemperance a “physical disease preys on… health and spirits •  Heredity a possible causative factor

•  1849 Dr. Magnus Huss in Sweden •  Study of the effects of alcohol •  Named it: Alcoholismus chronicus

The Disease Model- History • Second half of 19th Century- shifting times and critics •  1864- Dr. Joseph Turner

• New York State Inebriate Asylum •  1870- American Association for the Cure of Inebriety

•  It’s a disease • Curable in same sense as other diseases • Primary cause- a constitutional susceptibility •  Tendency may be either inherited or acquired

The Disease Model- History •  1874- Franklin Reformatory for Inebriates in

Philadelphia •  Drunkenness is not the effect of a disease. It is a “habit, sin, and

crime… we do not speak of cases being cured in a hospital but ‘reformed.’ “

•  Disease concept is a “weak apology for the sin of drunkenness” and “a blasphemy against God.”

• Evangelical Christian views came to the front •  Three views:

•  Source of the problem in the person as “vice” or “sin. •  Source not in the person but the substance •  Caused by the aggressive marketing and promotion of alcohol

• Disease concept as a medical concept fell out of favor

The Disease Model- History •  1900-1942: Dormancy

•  Some individual physicians maintained the disease concept •  Overall definition shifted from a vulnerable minority of users to a

focus on the inherent “badness” of the substances, the persons, and the institutions profiting from their sale.

•  Courts and law enforcement inadvertently shifted responsibility for care of addicts from physicians to criminal syndicates.

•  Physicians silenced by cultural redefinition of addict as a psychopath deserving isolation and punishment.

•  1928- Winifred Black best seller, Dope: The Story of the Living Dead •  Addict carrier of a disease “worse than smallpox and more terrible

than leprosy.” Should be in penitentiaries.

The Disease Model- History •  1919- Prohibition - a way of curbing drunkenness •  Care shifted to penal institutions and “foul wards” of large public

hospitals and to fledgling field of psychiatry.

• Drunkenness also became a symptom of underlying psychological disturbance. Had two outcomes: •  Theoretical foundation for some humane efforts to find treatment. •  Alcoholics and addicts subjected to whatever treatments were

currently in vogue and to policies and attitudes toward the mentally ill.

•  Often subjected to the worst abuses of mental health institutions of the day.

The Disease Model- History •  Alcoholics Anonymous and the Disease Model •  Bill W.: We have never called it a disease.

•  Like with heart disease with different heart ailments •  AA’s use of medical terms reflects …its belief about the solution.

•  Dr. Bob: •  “Have to use disease – sick – only way to get across hopelessness.”

•  Experience of A.A. Members •  alcoholism had a physical, as well as a mental and a spiritual,

component •  helpfulness of medical metaphors in making sense of drinking

experiences •  portrayal of alcoholism as an accelerating process •  importance of concentrating on drinking behavior rather than

searching for underlying causes •  loss of control over alcohol contained only by complete

abstinence from alcohol.

The Disease Model- History • 1942-1970: Modern Movement

• Research Council on Problems of Alcohol (1937) • Yale Center of Alcohol Studies (1943) • National Committee for Education on Alcoholism

(1944) • driving force behind the “modern alcoholism movement” •  convey a focus on alcoholism, rather than on alcohol or

the broad spectrum of alcohol-related problems. • met the cultural need to escape a century of polarized

wet-dry debates •  the unique vulnerability of a small subpopulation of

drinkers.

The Disease Model- History • Marty Mann 1944

• Alcoholism is a disease.

• Minnesota Model 1948-1950 •  The model of alcoholism treatment that most

exemplified the disease concept • Pioneer House (1948), Hazelden (1949), and Willmar

State Hospital (1950). •  alcoholism as a primary, progressive disorder •  required sustained abstinence •  active, continuing program of recovery. • E.M. Jellinek – More on him later

The Disease Model- History • By mid-20th Century- Beyond Alcohol

•  Therapeutic community as treatment modality •  Most rejected the disease concept, isolated themselves from AA

and Narcotics Anonymous, and instead based their treatment on the process of character reconstruction.

• Methadone maintenance •  Became major approach to treatment of narcotic addiction. •  Viewed opiate addiction as a metabolic disease.

The Disease Model- History •  1970-2000: Concept Extension and Backlash • Extended influence and cultural acceptance • National awareness through famous people’s openness • Concept applied to wider range of drug use and

behaviors • Explosive growth of treatment programs • Minnesota Model the most widely used • Backlash by end of Century

•  Financial •  Ideological and philosophical •  No consensus

Four Recent Discussions •  Inside Rehab: The Surprising Truth About Addiction

Treatment--and How to Get Help That Works, Anne Fletcher, 2013.

• Unbroken Brain: A Revolutionary New Way of Understanding Addiction, Maia Szalavitz, 2016

•  “The Irrationality of Alcoholics Anonymous”, Gabrielle Glaser, Atlantic, April 2015.

•  “How Science Is Unlocking the Secrets of Addiction”, Fran Smith, National Geographic, September 2017.

What Can We Learn?

•  Impact of greater cultural and religious issues

•  Impact of language utilized

• Our individual experiences

• Our assumptions and related confirmation bias

What Can We Learn? •  If all we have is a hammer, everything will look like a nail.

•  If all we have: •  the 12-Steps, it will always look “spiritual”. •  sin and a choice model, it will always look like bad

choices and bad behavior. •  laws and rules, it will always look criminal. •  cognitive therapy it will always look like brain

dysfunction • motivational interviewing, it will always look like a

motivational problem.

The Blind and the Elephant

The Blind and the Elephant

The Law

MAT Spiritual

Motivation

Sin

Cognitive

????

The Blind and the Elephant

Assuming that the Disease Model is Broadly Correct •  Two ways of seeing it keeping the elephant in mind • As a Relapsing-Remitting Disease

•  Examples: •  Relapsing-Remitting Multiple Sclerosis (RRMS) •  Rheumatoid Arthritis (RA) •  Systemic Lupus Erythematosus (SLE) •  Diabetes? •  Pain? •  Some cancers after treatment? •  Addiction?

• Different Diseases with Similar Symptoms

or Variation of One Disease

Assuming that the Disease Model is Broadly Correct

• What’s the same? What’s different?

• Symptoms: What’s the same, what’s different •  Treatment: What’s the same, what’s different • What happens if we treat them all the same way? • What happens if we get it wrong? •  Is one “deadlier” than the other? • Why? What’s the difference?

Relapsing Diseases- Diabetes •  Type 1: a total lack of insulin - 5-10% of diabetics

•  Usually juvenile onset •  Immune system destroys cells that release insulin •  Sudden illness from high blood sugar •  Low blood sugar episodes common •  Cannot be prevented, only treated •  Life expectancy: -11 – 20%

•  Type 2: too little insulin or cannot use insulin effectively •  Usually adult onset although it is now showing up in children •  90-95% of diabetics •  Usually symptom free •  Can be prevented or delayed by lifestyle changes •  Life expectancy: - 10 – 15%

Relapsing Diseases- Diabetes

•  Type 1 vs. Type 2: What’s the same, what’s different • Symptoms: What’s the same, what’s different •  Treatment: What’s the same, what’s different • What happens if we get it wrong? •  Is one “deadlier” than the other? • Why? What’s the difference?

Relapsing Diseases- Cancers •  Location: Lung, skin, colon, etc.

•  Obviously different •  But are they different diseases or variations of a single

process? •  Does it matter if we treat each in an appropriately different

way? •  Breast Cancer

•  A number of different diseases or variations •  Dependent on:

•  Location •  Genetics •  Molecular structure

Relapsing Diseases- Cancers • Cancers: What’s the same, what’s different • Symptoms: What’s the same, what’s different •  Treatment: What’s the same, what’s different • What happens if we treat them all the same way? • What happens if we get it wrong? •  Is one “deadlier” than the other? • Why? What’s the difference?

Relapsing Diseases- Addiction(s) •  Is alcohol use disorder the same disease as opioid use disorder, amphetamine use disorder, or marijuana use disorder?

•  I.e do the different substances cause different processes to work?

•  If they are all the same would it be a stretch to say that therefore Campral or naltrexone would work on all of them?

•  If they are all the same why do many people not respond to 12-Step treatment?

•  What if we are seeing the disease relapse, NOT the person?

Relapsing Diseases- Addiction(s) •  Is alcohol use disorder the same disease as opioid use disorder, amphetamine use disorder, or marijuana use disorder? • This is not a new idea

• E. M. Jellinek: • a variety of “alcoholisms,” • criticized the tendency to as a single disorder. • Scientists feared a future day of reckoning for this simplistic portrayal of alcoholism.

•  History of the Disease Concept, William White

Relapsing Diseases- Addiction(s) • What might cause and/or exacerbate different diseases? • Genetics

• Brain chemistry •  The substance used •  Genetics

• Physical issues •  TBI •  Other trauma •  Pain •  Gastric bypass

Relapsing Diseases- Addiction(s) • What might cause and/or exacerbate different diseases? • Environment (Epigenetics?)

• Poverty • Peer groups • Retirement

• Co-morbidity Mental Health issues • Depression • Anxiety • PTSD • Cluster B traits

Relapsing Diseases- Addiction(s) • At this point in time we use the same general symptoms to diagnose any addiction- regardless of the substances or causes.

• Different diseases can, of course, show the same or similar symptoms.

• Are we at a place similar to cancer diagnosis 50 - 60 years ago?

• We generally use the same treatment regardless of the substance or substances involved.

• Medication-assisted treatments being the basic difference.

Relapsing Diseases- Addiction(s)

• Problems we face in this discussion • Relapse and recovery data are often highly suspect and difficult to gather and verify.

• Definitions and vocabulary • Social stigma and related issues • Commitment to (or against) certain treatment methods and/or combining them

• Opposition to “disease” model

Relapsing Diseases- Addiction(s) • Different addictions: What’s the same, what’s different • Symptoms: What’s the same, what’s different •  Treatment: What’s the same, what’s different • What happens if we get it wrong? •  Is one “deadlier” than the other? • Why? What’s the difference?

•  Let’s do a thought experiment and compare good old alcohol use disorder and opioid use disorder.

Relapsing Diseases- Addiction(s) Alcohol Use Disorder, Severe

Opioid Use Disorder, Severe

Symptoms

Treatment Protocol

Mortality

Same or different?

Same or different?

Same or different?

What if we get it wrong?

Then There’s Language • How can you tell when an addict is lying?

• Drunkard, lush, alkie, boozer, souse

• Junkie, druggy, dopehead, stoner, fiend

• Clean or dirty drug screens

• Replacement or substitution therapy

Then There’s Language • Mathew is manipulative

• Mathew is trying really hard to get his needs met. Mathew may need to work on more effective ways of getting his needs met

• Kyle is non-compliant

• Kyle is choosing not to... Kyle would rather... Kyle is looking for other options

Then There’s Language •  Jennifer is in denial

• Jennifer is ambivalent about...... Jennifer hasn’t internalized the seriousness of.... Jennifer doesn’t understand............

• Mary is resistant to treatment

• Mary chooses not to... Mary prefers not to... Mary is unsure about...

Then There’s Language •  John relapsed…

• John’s disease relapsed…

•  Judy needs relapse prevention…

• Judy needs recovery planning… Judy is working on immunotherapy…

•  Fred is an addict… • Fred is a person with addiction

The Leading Questions

•  If addiction is a relapsing-remitting disease, how does that impact our treatment planning?

• What if we are not dealing with one disease but with different diseases, or at the very least significantly different forms of a disease?

•  If addiction is a disease, how can or should that impact the language we use to describe it and the behavior of individuals with it?

The Leading Questions and Their Implications • Treatment planning

•  Individualized •  Do no harm •  Do what’s right

• The needs of the patient come first. • How and what we teach to our patients • How we see our patients • Our language • Chronic Disease Management

The Leading Questions and Their Implications

•  The thin, fine line we have to walk

• History of treatment models • Our own experiences and training • The different “models” • The politics of health care and our field as a part of it.

The Leading Questions and Their Implications •  Some of the ethical questions:

• How can we only recommend what WE each think is right ignoring other possibilities?

• Place of evidence-based modalities • Role of patient in decision making

• When the patient believes differently than what we think?

•  Informed consent

The Leading Questions and Their Implications •  Some of the ethical questions:

•  Individualized treatment • What will be the role of LADCs in diagnosis? • Do the right thing

• Who decides “The Right Thing?”

Into the 2st Century •  Conclusions from William White

• The new disease concept will •  forge consensus on a language that can be used to differentiate types and intensities of alcohol- and other drug-related problems.

• shift from an alcoholism model to a more encompassing addiction model.

• carefully map its conceptual boundaries, defining the conditions and circumstances to which it should and should not be applied.

Into the 2st Century •  Conclusions from William White

• The new disease concept will • place alcoholism/addiction within a larger umbrella of alcohol- and other drug-related problems.

• portray addiction as a cluster of disorders that spring from multiple, interacting etiological influences and that vary considerably in their onset, course, and outcome.

• define the complex inter-relationships between addiction and other acute and chronic disorders and champion integrated models of care for the multiple problem client/family.

Into the 2st Century •  Conclusions from William White

• The new disease concept will •  define the role human will and personal responsibility play in the onset, course, and outcome of AOD problems and of alcoholism/addiction.

• celebrate the variety of styles and pathways of long term recovery management.

• view addiction as a chronic rather than acute disorder and incorporate the principles of chronic disease management.

Into the 2st Century • Conclusions from William White

•  it is unlikely to survive as the dominant “governing image” for AOD problems unless it is able to continuously incorporate the following: 1) the new findings of addiction science, 2) major elements of the emerging public health model, and 3) the ever-accumulating lessons of clinical and recovery experience.

The Leading Questions and Their Implications • Let’s Talk

• And Let’s Keep Talking

Sources •  “Addiction as a Disease: The Birth of a Concept” by William L.

White, Counselor (2000). Online: www.williamwhitepapers.com •  The Emperor of All Maladies: A Biography of Cancer by

Siddhartha Mukherjee (2010) •  Deviate, by Beau Lotto •  Inside Rehab: The Surprising Truth About Addiction Treatment--

and How to Get Help That Works, Anne Fletcher (2013) •  Unbroken Brain: A Revolutionary New Way of Understanding

Addiction, Maia Szalavitz (2016) •  “The Irrationality of Alcoholics Anonymous”, Gabrielle Glaser,

Atlantic (April 2015) •  “How Science Is Unlocking the Secrets of Addiction”, Fran

Smith, National Geographic (September 2017)