The Emperor of All Maladies

Throwback Sunday – I thought this old post on parallels between cancer, oncology, addiction, addiction treatment and recovery would be a good pairing with yesterday’s post on professional attitudes toward difficult to treat illnesses.

==================

I’ve been reading The Emperor of All Maladies and I’ve been very struck by the parallels between the is philosophical and practical challenges faced by cancer and addiction researchers, advocates and practitioners.

One of the pioneers of cancer research, treatment and advocacy faced difficult decisions about whether to disclose his own illness:

Proud, guarded, and secretive—reluctant to conflate his battle against cancer with the battle—Farber also pointedly refused to discuss his personal case publicly.

The rhythms of hope and despair

the clinic seemed perpetually suspended between two poles—both “wonderful and tragic . . . unspeakably depressing and indescribably hopeful.” On entering the cancer ward, Goldstein would write later, “I sense an undercurrent of excitement, a feeling (persistent despite repeated frustrations) of being on the verge of discovery, which makes me almost hopeful.

“The mood among pediatric oncologists changed virtually overnight from one of ‘compassionate fatalism’ to one of ‘aggressive optimism.’”

“ALL in children cannot be considered an incurable disease,” Pinkel wrote in a review article. “Palliation is no longer an acceptable approach to its initial treatment.”

The zeal and necessity of the advocates:

She had found her mission. “I am opposed to heart attacks and cancer,” she would later tell a reporter, “the way one is opposed to sin.” Mary Lasker chose to eradicate diseases as some might eradicate sin—through evangelism. If people did not believe in the importance of a national strategy against diseases, she would convert them, using every means at her disposal.

The tension between the patient’s welfare and the professional and intellectual needs of the doctors and researchers:

“There is an old Arabian proverb,” a group of surgeons wrote at the end of a particularly chilling discussion of stomach cancer in 1933, “that he is no physician who has not slain many patients, and the surgeon who operates for carcinoma of the stomach must remember that often.” To arrive at that sort of logic—the Hippocratic oath turned upside down—demands either a terminal desperation or a terminal optimism. In the 1930s, the pendulum of cancer surgery swung desperately between those two points.

Political feminism, in short, was birthing medical feminism—and the fact that one of the most common and most disfiguring operations performed on women’s bodies had never been formally tested in a trial stood out as even more starkly disturbing to a new generation of women. … It was as if the young woman in Halsted’s famous etching—the patient that he had been so “loathe to disfigure”—had woken up from her gurney and begun to ask why, despite his “loathing,” the cancer surgeon was so keen to disfigure her.

“We shall so poison the atmosphere of the first act,” the biologist James Watson warned about the future of cancer in 1977, “that no one of decency shall want to see the play through to the end.”

The demands of caring for patients with such an all-consuming illness:

As Carla’s doctor, I needed to be needed as well, to be acknowledged, even as a peripheral participant in her battle. But Carla had barely any emotional energy for her own recuperation—and certainly none to spare for the needs of others. For her, the struggle with leukemia had become so deeply personalized, so interiorized, that the rest of us were ghostly onlookers in the periphery: we were the zombies walking outside her head.

“To some extent,” he wrote about his patients, “no doubt, they transfer the burden [of their disease] to me.”

The tension between physicians offering palliative care and patients wanting more:

The daughter looked at me as if I were mad. “I came here to get treatment, not consolations about hospice,” she finally said, glowering with fury.

The fear and existential implications of cancer:

Will you turn me out if I can’t get better? —A cancer patient to her physician, 1960s

“I don’t know why I deserved the illness in the first place, but then I don’t know why I deserved to be cured. Leukemia is like that. It mystifies you. It changes your life.”

The pull of palliative care:

As trial after trial of chemotherapy and surgery failed to chisel down the mortality rate for advanced cancers, a generation of surgeons and chemotherapists, unable to cure patients, began to learn (or relearn) the art of caring for patients. It was a fitful and uncomfortable lesson. Palliative care, the branch of medicine that focuses on symptom relief and comfort, had been perceived as the antimatter of cancer therapy, the negative to its positive, an admission of failure to its rhetoric of success.

The movement to restore sanity and sanctity to the end-of-life care of cancer patients emerged, predictably, not from cure-obsessed America but from Europe.

she encountered terminally ill patients denied dignity, pain relief, and often even basic medical care—their lives confined, sometimes literally, to rooms without windows. These “hopeless” cases, Saunders found, had become the pariahs of oncology, unable to find any place in its rhetoric of battle and victory, and thus pushed, like useless, wounded soldiers, out of sight and mind.

Saunders responded to this by inventing, or rather resurrecting, a counterdiscipline—palliative medicine. (She avoided the phrase palliative care because care, she wrote, “is a soft word” that would never win respectability in the medical world.) … she created a hospice in London to care specifically for the terminally ill and dying, evocatively naming it St. Christopher’s—not after the patron saint of death, but after the patron saint of travelers.

“The resistance to providing palliative care to patients,” a ward nurse recalls, “was so deep that doctors would not even look us in the eye when we recommended that they stop their efforts to save lives and start saving dignity instead . . . doctors were allergic to the smell of death. Death meant failure, defeat—their death, the death of medicine, the death of oncology.” Providing end-of-life care required a colossal act of reimagination and reinvention.

Saunders refused to recognize this enterprise as pitted “against” cancer. “The provision of . . . terminal care,” she wrote, “should not be thought of as a separate and essentially negative part of the attack on cancer. This is not merely the phase of defeat, hard to contemplate and unrewarding to carry out. In many ways its principles are fundamentally the same as those which underlie all other stages of care and treatment, although its rewards are different.”

A hint of recovery-oriented palliative care?: [emphasis mine]

Opiates, used liberally and compassionately on cancer patients, did not cause addiction, deterioration, and suicide; instead, they relieved the punishing cycle of anxiety, pain, and despair.

cures backed with commercials

snake-oil

NPR shares one recovering woman’s story:

Doctors sent me to specialists, whose cures were backed with commercials, free pens and a 30-day supply free from the sample drawer.

The doctor at the chronic pain clinic assured my mom that I’d be closely monitored and that pharmaceutical use was documented and safe. “Methadone is for heroin addicts,” she said. I left with a month’s worth of pills that day.

Soon, I was under the care of a psychiatrist, pain specialists and family practice doctors. I was getting up to 14 different meds. I couldn’t tell where my pain came from anymore. Side effects led to new drugs, and more side effects.

My husband — once friend and partner — was now my jailer, controlling access to my pills he kept locked in a safe. A single Xanax turned into five if I could sneak them. And the methadone went from one, to two, to four until I drifted off into a drooling heap at Quiznos.

I became too medicated to parent my son, so he moved in with my parents. Motherhood became a burden I despised. My husband and I spent our time quarreling, drinking and sleeping. Friends disappeared. Finances were obliterated by medical bills and time off work.

How is she doing now?

Today, I am a 33-year-old mother of two. My husband and I divorced. I got remarried to a man I met in recovery. We have a son as well as my first son who has no memory of me as an addict. If you passed me on the street, you’d never suspect my junkie past.

I feel no shame when I say I’m a recovering addict. The battle has made me a warrior. As someone lucky to have survived, I want to tell others not to give up. Life can be pain and suffering, but numbing that pain also numbs the love that heals it.

My addiction owned me. Once a girl obsessed with my appearance, I was now a greasy, slovenly woman who could no longer perform even the most basic hygiene. Although a die-hard atheist, I begged God to make me die. Of all things, Carrie Underwood’s “Jesus Take the Wheel” came on one day, and I broke down sobbing.

Recovery Checkups

blog-post-05-21

Bill White on efforts to develop and implement recovery check-up protocols:

There is one sentence in the Standards that deserves particular acknowledgement:  “Recovery check-ups by addiction specialist physicians, just as those by primary care physicians or other providers, may promote sustained recovery and prevent relapse” (p. 13).

. . . The “recovery check-up” language marks an important milestone in the history of addiction medicine and the history of ASAM.  Projects are underway in Philadelphia, Pennsylvania and Ann Arbor, Michigan [That’s us at Dawn Farm!] to develop recovery checkup protocol for primary care physicians.  Those projects mark the next step in integrating addiction treatment and primary medicine and the next step in extending acute care models of addiction treatment to models of sustained recovery management.

Imagine a day when everyone entering recovery will have an addiction-trained primary care physician and an addiction medicine specialist as sustained resources through the long-term recovery process.

via Recovery Checkups | Blog & New Postings | William L. White.

Hope, empowerment, capability, connection and purpose

Hopeworks Community recently listed his core beliefs related to his recovery from mental illness:

The idea was simple. There are a few core beliefs about recovery that make a difference. To the extent you are able to live them your recovery will be positively impacted.

My list of core beliefs was simple:

Life can get better.
I can help make it better.
I can learn the things I need to do to make it better.
I have support. People care about me and what I am doing.
What I do matters. It has meaning and purpose.

Or HOPE….EMPOWERMENT…CAPABILITY….CONNECTION…PURPOSE…

This rings very true for addiction recovery as well. Any practitioner or program that ignores these dimensions is inadequate. Some people will need no assistance with this kind of recovery–if we reduce their symptoms they can take care of all of this on their own without mutual aid or extended professional help. (I’m thinking of people with major depression or a problem drinker.) Others will more severe and chronic mental illness or substance use disorder will need lifelong professional and/or peer support. (Here, I’m thinking of an addict or chronic, debilitating mental illness.)

There’s a lot of pushback on this for addiction. Just this weekend, Anne Fletcher tweeted a dismissive reaction to a Bill White post about developing geographic communities of recovery.

Would she have the same reaction to a post about building communities of recovery for people with chronic and severe mental illness? Would she tweet a response that implies it’s overkill and these people (Who, together, are re-engaging in full family, occupational and community life.) need discover that there’s more to life and they need to get out of some growth-limiting bubble?

There’s been a whole new wave of these kinds of reactions recently. To me, they suggest a couple of beliefs:

  • The failure to acknowledge the different needs of people who have less severe or time-limited problems with alcohol and other drugs versus those with severe, chronic and debilitating addictions. Their reactions often focus on the experiences of the former, framing substance use disorders as a lifestyle choice.
  • The perception that recovery advocates (12 step recovery in particular) can’t tell the difference between these two groups and are bent on evangelizing every problem user into their one and only path to recovery while obstructing access to any treatment or recovery support that isn’t perfectly compatible.
  • That this perceived pattern of behavior undermines the legitimacy of mutual aid groups and the empirical evidence for the their effectiveness and their mechanisms of change.

Hopeworks Community closed with a thought that sums up recovery as a way of life.

But I know recovery is never a thing to have, but a way of doing.

Interesting that there is so much resistance to lifestyle change as an approach to managing addiction while there’s no dispute that lifestyle change is critical to successful management of other chronic illnesses and that peer support is important for successfully initiating and sustaining lifestyle change.

I don’t hear any of these reactions regarding people who join a gym, spend an hour there 5 days a week, start eating healthier, integrate being physically healthy into their identity and develop new social networks around these changes, like, say, a tennis league or a biking group. Why is that? We don’t hear that push back, and we’re not even talking about people who were occupationally, socially, emotionally and familially impaired. And, if some faction of these people exhibited evangelical zeal and insisted this was the only way to be healthy and that everyone needed to do this, would we be so dismissive of scholarly work describing the development of some communities organized around this kind of wellness for really sick people?

The Doctor’s Opinion – Dawn Farm Ed Series

silkworthResearch continues to shed light on the neurobiology of alcohol/other drug addiction. Modern research supports much of what was intuitively and experientially believed by the medical specialists who supported the Alcoholics Anonymous program in its earliest days.  This program will describe a physician’s view of alcoholism, as presented in the literature of Alcoholics Anonymous and updated with the modern neurobiology of addictive illness. It will include a discussion of Dr. Silkworth’s explanation of alcoholism as a twofold disease affecting mind and body, how Dr. Silkworth’s opinion relates to the modern neurobiology of addictive illness, identification of therapy for alcoholism as promoted by Alcoholics Anonymous, and the relationship of this therapy to Dr. Silkworth’s opinion.

Handouts and other goodies:

Handouts and slides:

Related reading suggestions:

Video

The Doctor’s Opinion on Alcoholism from Dawn Farm on Vimeo.

Slidecast:

View more webinars from Jason Schwartz.

About the presenter

Dr. Herbert MalinoffHerbert Malinoff, MD, FACP, FASAM, is a specialist in chronic pain and addictive illness. He is the Medical Director of Pain Recovery Solutions, PC; and an attending physician at Saint Joseph Mercy Hospital in Ypsilanti, Michigan. Dr. Malinoff is a clinical faculty member of the University of Michigan Medical Center in the Department of Anesthesiology, and a consultant to Michigan Pain Specialists in Ann Arbor, Michigan. He is also a past President of the Michigan Society of Addiction Medicine. Dr. Malinoff received his M.D. degree from the University of Michigan Medical School.

Abstinence—The Only Way to Beat Addiction?

StrawmanWhat killed Philip Seymour Hoffman? According to Anne Fletcher, it wasn’t the doctor who prescribed him the pain medication that began his relapse, it wasn’t the prescribers of the combination of meds found in his body, it wasn’t his discontinuing the behaviors that maintained his recovery for 23 years, it wasn’t a drug dealer, and it wasn’t addiction itself.

According to her it was 12 step groups for promulgating an alleged myth:

This is exactly what happened when Amy Winehouse, Heath Ledger, Corey Monteith, and most recently, Phillip Seymour Hoffman were found dead and alone. Scores of people most of us never hear about suffer a similar fate every year.

Why does this keep happening? One of the answers is that many people struggling with drug and alcohol problems have been “scared straight” into believing that abstinence is the only way out of addiction and that, once you are abstinent, a short-lived or even single incident of drinking or drugging again is a relapse. “If you use again,” you’re told, “you’ll pick up right where you left off.” Once “off the wagon,” standard practice with traditional 12-step approaches is to have you start counting abstinent days all over again, and you’re left with a sense that you’ve lost your accrued sober time.

She’s describing a theory often referred to as the “abstinence violation effect”. The argument is that the “one drink away from a drunk” message in 12 step groups is harmful and makes relapses worse than they might have been.

One problem. The theory is not supported by research. (See here and here. It hasn’t even held up with other behaviors.)

Two things are important here.

  • First, many people experience problems with drugs and alcohol without ever developing an addiction. Most of these people will stop and moderate on their own. These people are not addicts and their experience does not have anything to teach us about recovery from addiction.
  • Second, loss of control is the defining characteristic of addiction. The “one drink away from a drunk” message is a colloquial way of describing this feature of addiction.

Further, she characterizes AA as opposing moderation for problem drinkers, when AA literature itself says, “If anyone who is showing inability to control his drinking can do the right- about-face and drink like a gentleman, our hats are off to him.” 12 step groups believe that real alcoholics will be incapable of moderate drinking, but they are clear that they have no problem with people moderating, if they are able. This is a straw man.

We’re left to wonder why a best selling author and NY Times reporter would attack 12 step groups with a straw man argument and a long discredited theory.

via Abstinence—The Only Way to Beat Addiction? Part 1 | Psychology Today.

Social connection as a mechanism of change

photo credit: davegray
photo credit: davegray

A new blog looks at social connection as an important mechanism for facilitating recovery:

…if having plenty of quality social connections is good for the next person in the street, is it also true for people trying to recover from addictive disorders?

Mark Litt and colleagues from the University of Connecticut conducted a randomised trial on alcoholics in treatment. These patients either had case management, contingency management AND social network, or simply social network connection interventions. The ones connected to sober social networks did better than the other groups. One mind-blowing statistic coming out of this was that ‘the addition of just abstinent person to a social network increased the probability of abstinence for the next year by 27%.’ If this were causal think of the impact this would have on treatment populations. You’d think we’d all be practising this like billy-o now in treatment settings. Sadly we are not.

What’s the best way to improve the social networks of those seeking recovery? Answer: Introduce them to other recovering people.

Read the rest here.

Cultivating Mindfulness to Support Recovery – Dawn Farm Education Series

From the Dawn Farm Education Series:

Recent research confirms the efficacy of mindfulness practices to support attaining and sustaining recovery from substance use disorders. This video includes an overview of theory and research supporting mindfulness practices for people with addiction as well as practical techniques to cultivate mindfulness and apply mindfulness practices. The presentation defines mindfulness, reviews the evidence of the positive effects of mindfulness on recovery and demonstrates some basic mindfulness techniques.

Handouts

Cultivating Mindfulness to Support Recovery from Dawn Farm on Vimeo.

More on the Dawn Farm Education Series here.

Empathy: The First Step To Improving Health Outcomes

bpd empathy

A Health Affairs post points to a study that higher levels of physician empathy predicted better outcomes for diabetes patients.

A 2012 study from Italy analyzed the health outcomes of more than 20,000 patients with diabetes, who were assigned to three different groups of physicians (pre-evaluated for their levels of empathy). The physicians who demonstrated the highest degrees of empathy achieved the best results with their patients; the patients had statistically significant lower levels of diabetic complications than the groups whose physicians had scored lower in empathy.

It makes a lot of sense that this would be especially important in chronic disease management (or, recovery management) , where the goal is long term engagement to monitor their illness/recovery, support the patient through difficult behavioral changes and re-intervene quickly when symptoms recur.

Who would want to call their helper about problems in their recovery or a relapse? This isn’t an easy call to make under the best circumstances. Even more so if you don’t believe your helper understands, cares or worse, judges you. Under these circumstances the patient is more likely to put it off and put it off as the problem grows and becomes more difficult to manage.

I continue to be convinced that addiction treatment providers have a lot to learn from chronic disease management and that we have a lot of experience to offer them. This will be important to follow as the chronic disease burden continues to get more attention.

via Empathy: The First Step To Improving Health Outcomes – Health Affairs Blog.

Medication: The smart-pill oversell

Unlock-Your-PotentialGiven the simultaneous explosion in ADHD diagnosis, prescribed use of stimulants and non-medical use of stimulants, maybe it’s time to look at the cost/benefit ratio. We’ll it’s clear that the benefits aren’t all that. What to make of it?

Researchers are beginning to address this paradox. How can medication that makes children sit still and pay attention not lead to better grades?

One possibility is that children develop tolerance to the drug. Dosage could also play a part: as children grow and put on weight, medication has to be adjusted to keep up, which does not always happen. And many children simply stop taking the drugs, especially in adolescence, when they may begin to feel that it affects their personalities. Children may also stop treatment because of side effects, which can include difficulty sleeping, loss of appetite and mood swings, as well as elevated heart rate.

Or it could be that stimulant medications mainly improve behaviour, not intellectual functioning. In the 1970s, two researchers, Russell Barkley and Charles Cunningham, noted that when children with ADHD took stimulants, parents and teachers rated their academic performance as vastly improved9. But objective measurements showed that the quality of their work hadn’t changed. What looked like achievement was actually manageability in the classroom. If medication made struggling children appear to be doing fine, they might be passed over for needed help, the authors suggested. Janet Currie, an economist at Princeton University in New Jersey, says that she might have been observing just such a phenomenon in the Quebec study that found lower achievement among medicated students1.

And it may simply be that drugs are not enough. Stimulant medications have two core effects: they help people to sustain mental effort, and they make boring, repetitive tasks seem more interesting. Those properties help with many school assignments, but not all of them. Children treated with stimulants would be able to complete a worksheet of simple maths problems faster and more accurately than usual, explains Nora Volkow. But where flexibility of thought is required — for example, if each problem on a worksheet demands a different kind of solution — stimulants do not help.

What about those non-medical users? Don’t they get a boost?

In people without ADHD, such as students who take the drugs without a prescription to help with school work, the intellectual impact of stimulants also remains unimpressive. In a 2012 study of the effects of the amphetamine Adderall on people without ADHD, psychologists at the University of Pennsylvania in Philadelphia found no consistent improvement on numerous measures of cognition, even though people taking the medication believed that their performance had been enhanced10.

via Medication: The smart-pill oversell : Nature News & Comment.