Guinevere Gets Sober

Recovery news, reviews and stories, by Jennifer Matesa.

Tag: treatment

Could Proper Standards of Care Have Saved Robin Williams?

Cross-posted with Recovery.org.

Robin Williams fish

Why does addiction care still, too often, lag behind the care you’d receive for other illnesses? I asked three addiction doctors how we can reimagine treatment as an ongoing collaboration.

When I first heard that Robin Williams died, of course I thought, Another overdose. But when I read “suicide due to asphyxia,” I remembered a 2013 statement from his publicist, which the media is now repeating into an echo chamber: Williams last year checked into rehab to “fine-tune” his sobriety.

What does fine-tuning your sobriety mean?

That the vagueness of this statement was accepted without question in the major media illustrates not only the media’s lack of knowledge about addiction but also the vast gray area in which addiction treatment operates. As a person recovering from addiction, I have the only life-threatening illness I know of in which I’m expected essentially to diagnose myself and oversee my own treatment and recovery.

Would we expect someone with cancer to diagnose herself? Hell, no. Does anyone with cancer check into the hospital to “fine-tune” her treatment? Well, in fact, maybe—if, for example, she were experiencing new symptoms that indicated a complication in her standard system of care. The physician might then use a physical exam and tests to retool the treatment accordingly.

And this is how some physicians are beginning to imagine addiction treatment: an ongoing collaboration between patient and doctor to carefully oversee lifelong recovery.

“I imagine people in recovery regularly seeing an addiction medicine physician,” Kevin McCauleyM.D., medical director of New Roads Treatment Center in Sandy, Utah, tells me. With his background as a Marine pilot and flight surgeon, and with eight years in recovery from painkiller addiction, McCauley talks about taking newly sober people through a system of recovery, in the way soldiers returning from war with injuries are led through recovery practices.

“The team assesses the condition, assigns names to the injuries, and takes the individual stepwise through exercises and therapies to get them where they can, for example, grasp a cup, and then walk again,” he says. “We would regularly see an addiction medicine physician. As I pass through my recovery through the rest of my life, I need to be in that collaborative relationship with a professional.”

But such a collaboration requires standards of care, which are sorely inconsistent—or even nonexistent—in addiction treatment.

Robin_Williams_fork

What is the Standard of Care for Addiction Treatment?

“I don’t think there is a standard of care—I think that’s evolving,” says Michael V. GenoveseM.D.J.D., the incoming medical director of Sierra Tucson in Tucson, Arizona. “It’s just becoming apparent to people that addiction is a disease. So that’s the first step, and now there will be a medical model that surrounds it.”

I don’t think there is a standard of care—I think that’s evolving…It’s just becoming apparent to people that addiction is a disease. So that’s the first step, and now there will be a medical model that surrounds it.—MICHAEL V. GENOVESE, M.D., incoming director of Sierra Tucson treatment center

Many people, especially some in 12-step abstinence-based recovery—which emphasizes humility—think that celebrities shouldn’t be given any more attention than any other recovering person, and there’s some truth to this. But when Philip Seymour Hoffman died, I wept. He was just a couple years younger than me, and what further choked me and so many others was the abbreviation of his artistic contribution.

McCauley blames the lack of a standard of care for such deaths. “It’s a terrible idea to leave detox and go home,” he says of Hoffman’s situation. Hoffman had relapsed after 23 years of abstinent recovery; he had apparently gone into rehab, been given Suboxone and gone home.

“If the standard of care had been [to give him] naltrexone for at least a year, and in that time get [his] rather considerable and proven recovery skills back up to snuff, that man would have lived,” McCauley says. Both Genovese and Harry HaroutunianM.D., medical director of the Betty Ford Center in Rancho Mirage, California, agree. Betty Ford is now a part of the Minnesota-based network of Hazelden, through which Williams sought to “fine-tune” his recovery.

Opinions differ on the kind of practitioner that might best oversee the process of recovery. “An addiction medicine physician also needs to be thought of as an addiction recovery physician,” says Haroutunian, who is himself a recovering alcoholic. “Certainly addiction physicians who are themselves in recovery and have good recovery may be best suited to help observe and guide someone who’s on that path from the dangers—everything from identifying other addictions such as workaholism, to relationship problems such as codependency, to excessive exercise or eating habits and nutritional deficiencies.”

“I understand [Haroutunian’s] point,” says Genovese, a board-certified addiction psychiatrist who is not in recovery, “but I think some of the best oncologists may never have had cancer. The best cardiologists don’t necessarily have cardiovascular disease.” He doesn’t think that the practitioner overseeing care needs to be a psychiatrist: “It could be an internist, an addictionologist, any practitioner with additional training in addiction.”

Many are saying that it was depression that killed Williams. People said the same thing about the author David Foster Wallace, who hanged himself at 48 after a lifetime of struggling with both addiction and mental illness. But you only have to look at the clips of Williams’ performances on YouTube to know that he had been a hard-core alcoholic and addict and that he negotiated sobriety on a daily basis. (Likewise, you only have to read Wallace’s writings—Infinite Jest, for example, or his essay, “This Is Water”—to find his struggle with addiction and his understanding of recovery.)

Robin-Williams-robin-williams-23183287-1600-1200

Williams’ cocaine clip has 2.5 million views, and his bit about alcohol and weed has almost 6 million. Some of my favorite bits—inexplicably, because I never copped on the street—are of Williams “doing” drug dealers. In a Thanksgiving appearance on Craig Ferguson’s show he does a “turkey-dealer” selling tryptophan; he and Ferguson (another recovering alcoholic) riff about knocking back heroin and Jack Daniels to get through the holidays and take turns making each other laugh their asses off.

Williams had been sober 20-odd years before he started drinking again in 2006. Nobody seems to know whether he carried on and that’s what necessitated the “fine-tuning” trip to Hazelden, or whether he’d climbed back on the wagon. But whatever happened, addiction was a major part of the mix, and like most of us in recovery who wake up and want to either bang our favorite drug or suck on our exhaust pipes, he wasn’t getting enough help.

Eventually, that help might look like the kind of support patients get when they have cancer, diabetes, cardiovascular disease, even near-sightedness—any chronic health problem that requires regular follow-up visits with medical specialists who operate according to scientifically backed protocols, measurable outcomes and standards of care. According to McCauley, “That’s what recovery oversight ought to look like.”

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Addiction and Art.

Book cover of Addiction and Art.

Addiction and Art has been sitting prominently on my coffee table. I’ve designed books, and it’s a beautiful book: a big flat hardcover bound in cherry-red cloth, with a reproduction of a painting in red and acid-green on the cover… a tightrope walker clad in the stars and stripes, balancing above a jagged forest of needles and bottles, reaching for an illuminated heart.

The reproductions inside are done equally well. The paper is thick and white and holds the ink nicely; the separations are clean. This is an art book.

It’s also a science book. The authors—Patricia B. Santora, Ph.D., assistant professor of psychiatry at Johns Hopkins University School of Medicine, and Jack E. Henningfield, Ph.D., professor of behavioral biology at Hopkins—directed Innovators Combating Substance Abuse, a $7 million program of the Robert Wood Johnson Foundation whose program office was at Hopkins from 2002-08.

Santora and Henningfield got involved with Margaret Dowell, a suburban-Baltimore artist, after she just happened to have an addiction-themed piece that she sent to them for their annual meeting. These little hotel-lobby shows went over so well among the addiction scientists that they decided to try community-level exhibitions. And the response was a landslide. The show they put on at the Carroll Community College in Westminster, Md., became the most popular art show in the college’s history.

These two scientists and one artist have four audiences in mind for this book:

  • in friends and family, they want to develop compassion;
  • in addicts, they want to foster not just hope but “knowledge that recovery is attainable and that they are not alone”;
  • in policymakers they want to develop the will to fund treatment and prevention from community to federal levels;
  • and in scientists they want to foster a better comprehension of the “human dimension of this treatable medical illness.”

I’m in the first two groups, and I spent 12 years interviewing policymakers and scientists. I’m also an artist. This book makes a vivid and multidimensional contribution toward shifting public perceptions of addiction away from morality-based notions and into the public-health sphere.

One of its best approaches: it lets everyone tell their own stories. It lets the scientists tell their part of the story; it lets the artists tell their part; they combine to create such an interesting cumulative picture.

The artists come from all over the map: recovering addicts; people who love recovering addicts; survivors of addicts who died; therapists and other providers; even a funeral director. Nearly 1,000 images were submitted for consideration; 62 were accepted—that’s how many artists are working on addiction as subject matter. Who would have thought?

But why not? As the authors note, when AIDS struck the nation’s consciousness in the early 1980s, community organizers enlisted the help of artists to tell the story of AIDS through novels, plays and memoirs. And then there was the AIDS Memorial Quilt, which defined art-in-action and forever changed the public’s ideas about AIDS from a moral problem (“the gay disease”) to a public-health issue that deserved scientific research and treatment.

So, these authors say: why not with addiction? As Joseph Califano recently said, addiction is the new AIDS. And there’s a lot of work to do:

Current research shows that addiction treatment

  • is not readily available for those who need it
  • is not integrated into mainstream medicine but remains segregated in programs offering treatments that are not science-driven; and
  • is forever vulnerable to pendulum shifts in funding priorities from one health risk to another (e.g., treating nicotine addiction versus childhood obesity)

Nicotine addiction and childhood obesity are both “funding priorities” of the Robert Wood Johnson Foundation. What they’re saying is, we need the public to fund this work.

I’ve featured art from this book elsewhere, and you can see Hopkins’s excerpts on the press’s Flickr page. But the work of two artists stayed with me.

The artist, addiction counselor and psychotherapist Deborah Feller of New York City has two pieces inspired by clients: one, Toy Soldier, shows a curly-headed seven-year-old boy playing with those green plastic soldiers our brothers all played with when we were kids, while his mother lies passed out nearby on the floor—the boy later became an alcoholic. The second, The Annunciation, shows a girl of maybe 15 sitting at a kitchen table with, in the artist’s words, “her sexual predator—her mother’s boyfriend.” Feller goes on:

The girl began shooting heroin and speed in her teens but now has a Ph.D. and an important role in helping children. This teen and the boy in Toy Soldier continue to exist unseen in the adults they have become. My drawings reveal what is rendered invisible by these inspiring recoveries.

I have a question in to Feller about these comments: have these traumas healed, or do they continue to live on “unseen” in the adults? I hope she gets back to me.

Oil-on-linen versions of Toy Soldier and The Annunciation can be seen on Feller’s website.

Julia Carpenter's painting of her sister Amy

"Goodbye" | © Julia Carpenter

Julia Carpenter's painting, Autopsy

"Autopsy" | © Julia Carpenter

And then there were Julia Carpenter’s portraits of her sister, Amy, which blew me away. I’d seen her painting, Autopsy, featured on Hopkins’s Flickr page… Somehow, alone on Flickr, this painting’s ghastliness didn’t touch me the same way it did when placed next to Goodbye, the portrait of Amy two months before her heroin overdose. (I hope she’ll forgive my reproducing it here. It’s copyrighted to her.) Accompanied by Carpenter’s thoughtful statements about her artistic process, as well as the documentation of the results of both treated and untreated addiction in work after work in this book, the effect was extraordinary in its understanding and feeling:

Amy died of a heroin overdose at the age of 24. After her death, I read her journal entries, went through her belongings, and made discoveries about her life I never could have imagined. . . .  The portraits reflect my ensuing anger over her death, my confusion about her life, and my questions about the physical death of the human body. Using the template of the human face, I discovered within the genre of portraiture the ability to go beyond the traditional to express the unspeakable.

It’s these authors’ dream that the science and the art will inspire readers to ask former Surgeon General C. Everett Koop’s question: “What can I do to help fight addiction instead of fighting those who have it?”

The stigma of addiction (part n): Doctors and addiction

In Addiction and Art (a book I swear to G-d I’m going to review very very soon) the authors, professors of psychiatry and behavioral biology at the Johns Hopkins University School of Medicine, write that compared to other medical illnesses, addiction receives little attention from the medical and public health communities. The reasons: the perception that it’s primarily a law enforcement problem, not a public health problem; skepticism about treatment; and “poorly funded research, weak leadership, stigma, and stereotypes.”

The authors go on to add, “Many of these obstacles to appropriate action, however, are caused more by indifference and prejudice.”

We can see this in the kind of outburst registered last week on the comments section of the New York Times story about a piece of Washington state legislation that would require physicians to refer pain patients on increasing doses of opioids to specialists if their symptoms were not improving.

Note well, reader: not cut off the patients, but refer them for further consultation if symptoms were not improving.

Listen to the uneducated voices that went ballistic:

I would much rather have some people become addicted to pain medicine than to do anything which restricts people with legitimate pain from obtaining pain medicine. … There is not one bit of evidence to suggest that if pain medicines were not available for misuse that people inclined toward addictions would not just find another drug. That is the history of drug use.

Here we have a guy who would prefer to sentence some people to a deadly disease, rather than consider implementing reasonable regulations that might allow clinicians to distinguish who might not be benefiting from these powerful drugs.

Another:

Patients who use narcotic drugs for real pain relief need them and do not become addicts.

Well, yes, honey, I’m here to tell you that some do! Get yer head out of the sand.

Moreover, patients who use opioids for real pain relief may still be addicts. They might have ruptured discs or spinal stenosis or no cartilage left in their knees. These conditions, which may require pain treatment, don’t exempt them from having addiction as a disease.

There were a very few sane voices:

As 21-year-old who has arthritis (19 years)and fibromyalgia (6 years) and experiences widespread pain every day, I don’t really have a problem with these regulations. If a medication is not working, its use should be reevaluated, especially if the medication could cause further health problems. I’ve been on a variety of different NSAIDs (different than a pain killer, I know) over the years. Whenever the medication stops working or isn’t doing enough for me, I change meds. If a powerful painkiller isn’t making any difference, why would someone keep taking it?

And another:

During my residency I only prescribed OxyContin to terminal cancer patients. … It was abundantly clear that most primary care physicians have very little to no training in managing and prescribing chronic opiates. Many of these patients encountered were physically and or psychologically dependent. Some were addicts.

Even when physicians have training in managing and prescribing opioids for chronic non-malignant (that is, non-cancer) pain, they often do not have the first clue how to recognize addiction inside their offices. And if they can recognize addiction, usually the stigma and stereotypes take over: they see their patients as having become morally corrupt rather than as having an(other) illness.

Pain physicians are trained to get patients ONTO drugs, not OFF drugs. So, largely in fear of DEA reprisals, they kick addicts roughly out of their practices, they refer them to psychiatric hospitals, and the patient is faced not only with negotiating a disruption in continuity of care for their pain problem but also with setting up treatment for their addiction—about which they may be in severe denial—and having to do it in opiate withdrawal, while also having to work, and/or take care of kids, aging parents, etc.

Total nightmare scenario. One that every chronic pain patient who-deep-down-suspects-she’s-an-addict wants to avoid, so this is why she usually stays in denial. She does not know how to get out. She doesn’t need to be kicked out of the practice, she needs help.

I wish this kind of legislation had been around five or six years ago. All I had to do to convince my doctor I was doing well was to go in and say I was doing well. I was taking pain medication for two real, diagnosed, legitimate neurological problems (which I still have), but it had also dimly entered my awareness that it was helping me cope with psychological problems as well. (Of course, the two can’t really be separated. The wellbeing of the body is the wellbeing of the mind.) If my physician, who is diligent, had been required to submit me to a protocol of questions and demonstrations at each visit to determine my actual functionality, it might have been determined, over time, that the opioids weren’t actually helping me improve. But again, I was afraid of being kicked out, cut off, sent to the psychiatric hospital, forced to take care of my child in the interim while enduring opioid withdrawal, etc. It was a conversation I was afraid to have with my physician, because to broach it would be to puncture that can of worms and let escape The Stigma.

In my opinion, and this is just off the top of my head here, I’d really like feedback on this: every pain clinic should have a staff of certified addiction specialists who consider addiction to be a disease and not a moral failing. They would be there to protect the patient population from the risk and to help those who have the disease and who also have chronic pain (because, as above, pain patients can also be addicts).

If you’re going to call pain a disease and you’re going to be in the business of handing out opioids, you need to get real about the disease of addiction. And not in a punitive way.

Addiction is the new AIDS

Great interview on NPR while I was overseas… Joseph Califano, founder and chairman of the National Center on Addiction and Substance Abuse at Columbia University, talked about the failure of the American medical establishment to take addiction seriously as a disease.

He said something that made me breathe easier as a parent: that research shows if you can get a child to age 21 without substance-abuse problems, they’re basically home-free “for the rest of his or her life.” My kid is almost 13.

But he said something even more pointed. He compared addiction with AIDS: in the space of three years, he said, the medical and public-health establishments educated the country about the fact that AIDS was a disease that needed to be treated, and to do that, the public had to invest in finding solutions. And it happened.

Their failure to do that with addiction and substance abuse is, to me, the greatest mistake they’ve made—the greatest failure of medicine and public health. . . . When I was secretary of HEW [the Department of Health, Education and Welfare], I went after smoking. I started the anti-smoking campaign. Everybody said, “My God, it will never happen. It’s all smoke and no fire.” Look at the country today. If we get some leadership, we’ll have a real impact. And [addiction] is the country’s biggest disease, the biggest cause of cancer, strokes, accidents, murders, violence. We’ve got to do something about it.

JAMA: Bipolar Disorder and Addiction

Update from this week’s Journal of the American Medical Association: People with addiction and bipolar disorder are more likely to have a more rapid-cycling form of bipolar, according to a study funded by three big federal agencies—the National Institute of Mental Health, the National Institute on Drug Abuse, and the National Institute on Alcohol Abuse and Alcoholism.

Listen up, those in recovery:

Based on the findings, the authors emphasize the importance of treating bipolar patients even if they have an active substance abuse disorder.

“Treatment” might include therapy, hospitalization if needed, and medication.

Ever heard people say you’re not really sober if you take antidepressants or other psychoactive medication, even under a physician’s oversight?

Over the weekend I talked with a friend of mine who’s been sober for 30-some years. She told me the story of a woman who got sober some years back, had a few years under her belt, and hit a real rough patch. Got extremely depressed, couldn’t climb out. Finally asked for what my sponsor calls “extra help” and went to a therapist, who suggested a psychiatrist, who in turn diagnosed bipolar disorder and prescribed medication. Which she threw out, because she was told by a number of people that if she took it, she’d no longer be sober. And she hung on as long as she could, and when she couldn’t endure anymore, she killed herself.

“It’s just as much self-will NOT to accept help as it is to go drink or engage in active addiction,” my friend said.

I’m reminded of that old story about the guy who’s flooded out to the top of his house, and along come a raft, a boat, and a helicopter, all of which he turns down, telling himself he’s waiting for “God” to save him. After he drowns and gets to the Pearly Gates, God chews him out: “I sent you a raft, a boat, and a helicopter—what were you bloody thinking??”

For full article: JAMA 2010;303(20):2022

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