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.

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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.

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They don’t expect to see [blank] patients doing well

blank signThis post quotes extensively from a Health Affairs article on how acute care training influences physician views of chronic disease patients.

The author starts out with the stories of two patients and the stories physicians bring to the helping relationship.

Martin is one of the few patients I remember who could make a three-hour treatment session at our hemodialysis unit last all day. With his advanced kidney failure, Martin—and the rest of my patients in the dialysis unit—couldn’t survive without the thrice-weekly sessions of hemodialysis that filter out harmful wastes and extra fluids from the bloodstream. Most people would try to get in and out as quickly as possible, but after years of the treatment, Martin was still coming early and staying late. He would let his fellow patients get started on their dialysis machines first while he went around greeting them. At the end of his own treatment, he’d welcome the next set of patients before heading downstairs to go home to his family. Slim and athletic, he was in generally good health other than his kidney disease.

Another patient, James, also arrived early to his hemodialysis appointment, but that was because he arrived via ambulance, on a stretcher. James had been a talented athlete when he was younger, but heart and kidney problems and advancing age had sapped his strength. The burly young ambulance drivers who lifted him in and out of their vehicle barely had to work at all, as James was skeletally thin, his limbs too frail to support him. The clinic staff greeted him and checked his logs from the nursing home where he’d been living since his last fall. When they asked him to confirm whether his name was James, he would say “yes,” and then fall silent again. He curled onto his side in the dialysis chair, trying to shift his weight off of his sore hip bones, unable to move without help. In that fetal position, James endured the three-hour treatment quietly and, at the end, was rolled away again.

I had admitted James to the hospital many times. Each time, the medical residents took care of him. Later, I would read over their notes and discharge summaries from his hospital stays. At least half of the medical trainees in our hospital had, at one time or another, taken care of James for his pressure ulcers, his failing heart, his pneumonias and infections, or his repeated strokes.

The residents knew James very well. But they had never met Martin. As one of my healthiest patients, Martin had never been admitted to the hospital. To the residents at the hospital, and indeed to most physicians, a dialysis patient looks like James, not Martin. But in my work as a nephrologist, dialysis patients look like Martin, not James. The gulf between the residents’ understanding of chronic disease and mine has, I believe, profound implications for the care of such patients and the policies we craft around them. I saw that clearly when my healthiest dialysis patient suddenly fell very ill.

meet them where they are atThe author goes on to illuminate how acute care practitioners tend to encounter chronically ill patients and how it fosters pessimism, despair and frustration. When she got to work in a chronic care setting, it completely changed her narrative.

As a new nephrologist, I didn’t expect my work at the dialysis unit to be especially interesting or fulfilling. During my own general medical training, I preferred the urgent, fixable problems of the hospital. Kidney failure wasn’t one of those fixable problems, and, as an intern and resident, I admitted many sickly patients like James to the hospital with a growing sense of futility.

Much to my surprise, the dialysis unit soon became my favorite place to work, in part because of people like Martin. I saw men and women who had adapted to chronic illness, whose lives were changed by illness but not subsumed by it. I got to know them better than I had ever had an opportunity to know my patients before. I learned their life stories, celebrated birthdays with them, and watched them do more than just survive.

Before I started working at the dialysis unit, I had never met a dialysis patient who spent most of his life outside the hospital rather than in it. Now I was responsible for many patients who rarely saw the inside of a hospital, and I began to recognize a completely different side of this disease.

beware of pity by shawnzrossi

beware of pity by shawnzrossi

Martin passed away suddenly and the author saw a stark contrast in her reaction (informed by her chronic care experience) and the reactions of her peers who operated from an acute care model.

The medical team did talk about him, afterward. We reviewed the symptoms, the workup, the tests. The heart specialist discussing the case was philosophical, explaining to the residents that there was nothing more we could have done. After all, he explained, dialysis patients don’t have strong hearts. They don’t do well with cardiac issues. They don’t survive as long as people with normal kidney function after a heart attack. They have recurrent heart disease. I myself was all too well aware of the statistics for dialysis patients with heart disease. Everything he said was entirely true.

I saw the students and residents nodding in acceptance and agreement. They had seen this before, over and over again, even in their short exposure to internal medicine. Dialysis patients don’t do well, the group silently concluded. Everyone shuffled away, to continue their day.

I sat in the conference room, feeling utterly alone in my sense of sorrow. Why did it seem I was the only one who found Martin’s death so difficult to accept? Why did the residents accept the facts so easily?

I thought about a few revealing interactions I had with physicians-in-training regarding my dialysis patients over the years. The ophthalmologist who saw one of my favorite older patients, an avid reader and the patriarch of a warm and loving family, when cataracts were impairing his vision, said in an off-hand comment, “What a terrible way to live. Does he really want to go through a surgery?” The emergency department (ED) resident who recognized my phone number when I called the ED asked, in a bored voice, “Which of your hopeless cases is it today?” The medical intern who, after knowing one of my patients for less than twenty-four hours during an acute hospitalization for a treatable pneumonia, suggested that we should consider less aggressive care and perhaps withdrawal of life support—after all, the patient had kidney failure. These physicians had worked at many different hospitals and clinics but had never been to the outpatient dialysis unit. They only knew the apparent futility of caring for the sickest, repeatedly hospitalized dialysis patients they saw during their inpatient medical training. Patients like James. They had little hope or expectation of making these patients better.

It’s not their fault: Medical training is heavily skewed toward acute, inpatient hospital experiences rather than chronic care. When the average resident goes on to become a primary care physician, a cardiologist, a hospital administrator, or a policy maker, their impressions of the dialysis patients I care for persist from their in-hospital training days. They don’t expect to see a dialysis patient doing well.

How does this play out in addiction care?

How often do helpers just expect death? How often do they frame death as an end to suffering?

Does this imply pity and, if so, what does that do to the relationship? To the patient’s hope and motivation?

How often does that lead to premature palliative care for patients who have plenty of life–high quality life–left in them?

To me, a bigger question is, how they would treat a loved one with that chronic condition?

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Recovering executive function

red-pencilI was listening to the podcast of this On Being episode this morning and get to wondering about its application to addiction treatment and recovery. (The first 15 minutes or so cover the really relevant concepts.)

The interviewee is Adele Diamond,  an educator, researcher and scientist who focuses on early childhood and the role of executive function in academic and life success.

She broke executive function down into three areas:

  1. inhibitory control
  2. working memory-the ability to hold on to a concept and explore. examine or play with it
  3. cognitive flexibility

She has an early childhood curriculum that is focused on fostering/supporting the development of executive function. In the interview, she discussed some activities and tricks designed to develop or engage executive function. For example, her curriculum uses particular kinds of play and drama. She also gave an example of helping kids who mirror write by asking them to write problem characters in red pencil. (Just stopping writing and picking up the red pencil was enough of an intervention for most kids.)

This got me thinking about addiction as, in part, a disorder of the brain’s executive function. If one of the tasks of early recovery is to restore or re-develop executive function, what strategies and activities could help accomplish that? What strategies do we already use, or do mutual aid groups use, to achieve this?

What are our red pencils and how can we find more of them?

 

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Life after AA

by Tony Millionaire

by Tony Millionaire

I’ve shared a couple of posts about AfterPartyChat’s series on a newly sober person. They’ve also shared an interview with a guy who left AA and how he’s doing. (Part one is here. Part two is here.)

AA haters will probably dismiss this as an AA horror story or as proof of their arguments against AA. One-wayers will probably see this as evidence that it will work for everyone if they just work it.

I have no interest in this argument. The truth is that there are plenty of people who have left AA and are doing fine, and there are plenty of people who left AA and are doing terribly. I just found this to be an interesting peek inside the experience of a guy who left AA.

He’s quit drinking for a month to take a break.

Danielle: How has the month been for you?

Chris: Challenging. First two weeks were especially tough. I was going through withdrawals—dramatic mood swings, going to sleep late, waking up late, couldn’t eat because my digestive system was all fucked up, then eating a lot of sugar. But now it’s pretty good. I started working out again, spending more time with my dog, being more productive; it feels like my brain started working since I started having creative ideas again. I stopped engaging in as much deviant behavior.

On the time since he left AA:

Well, the first year was not bad at all. Being sober had pushed my compass back towards acting again and so I was working a lot. Believe it or not, when I am doing something that I creatively want to do, I don’t really think about drinking. Acting is an addiction in itself but it’s a trap because when the work dries up, the drinking is always there. I think I drink to numb out the boredom. But in the last six months, I haven’t done any acting and a lot of that is because I have been drinking a lot. I haven’t been writing as much or pushing myself to be a better actor. It’s also because I have been working a lot at my bar job and making money, which is another addiction. Making money makes me feel good.

On relationships after leaving AA, with and without alcohol:

I feel kind of like I am warped now as far as relationships. I am so not used to meeting someone and talking with them sober, it’s just like drunk hook ups that lead right to sex. And now since I have been sober [this month], I don’t even want to talk with women in that capacity because all those new and sober feelings are coming out—all my little insecurities and problems, all the shit I drank over, are now rearing their little heads and I have to compartmentalize it.

On whether he’s an alcoholic:

I know I am an alcoholic; the question is, what do I do with it? Am I going to be dramatic and go back to AA or am I just going to fucking have to deal with it? And hopefully it doesn’t get that bad or hopefully I find something else that will push it down, like acting or anything creative. So that’s what I am doing. But I know that alcohol is always going to be there and I have resigned myself to the fact that it will always be a problem for me.

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It gets better. Believe it, because it does.

it-gets-better. . . more money, less anxiety and more self-love. –Sarah F.

AfterPartyChat continued its “what does someone with XXX days sober look like?” series.

I can tell how much I was really white knuckling those first few weeks—just focusing so hard on not picking up a drink. Reading that made me grateful that the actual act of not drinking has gotten a lot easier. I still think I’m struggling a little with the A word. I’m comfortable calling myself that in meetings and amongst really, really close friends but that’s about it. I know I can’t drink normally and I know I had to come to terms with the reality of being an alcoholic to get where I am now but it’s still hard to say, even to myself. 

Cool peek into the life of someone just starting out in recovery.

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We’re god. We might as well get good at it.

Dorothy_0011b God-Satan Desk SignsI was listening to a radiolab episode about efforts to restore ecosystems in the Galapagos islands and was struck by this line at 34:26.

We’re god. We might as well get good at it. And, we’re going to have to create these ecosystems based on our best science.

I’d wager that the speaker believes he’s just following the science in an empirical, rational and value-free manner.

I believe strongly in the value of research and evaluation. I believe in seeking truth. I believe in continuous learning.

BUT, I’m skeptical of people who insist the evidence says we should do X, OR they are only following the evidence, OR they are relying on value-neutral rational thought.

The truth is that these arguments conceal (probably unintentionally) their operational assumptions and values. It ends up making their writing and thinking less transparent.

They probably have some truth, maybe some important truths, but be skeptical of anyone who speaks or writes as though they have THE truth, whether it’s  delivered by god or science.

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e-cigarette manufacturers lobbying their way out of regulation

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Vox reports on the lack of regulation for e-cigarettes:

Electronic cigarette companies are quietly winning the war on regulation by successfully lobbying state legislatures to exclude them from tobacco control laws.

Public health officials and smoke-free advocates say industry-sponsored bills have the veneer of public health—with provisions about banning sales to minors—but avoid the more stringent rules other tobacco products must abide by.

“These are Trojan Horse bills that look good but leave gaping holes in public health regulations,” said Vince Willmore of Tobacco Free Kids. “They result in different penalties and enforcement from regular tobacco products, they exempt e-cigarettes from being included in smoke-free air laws, and some exempt manufacturers from state taxes as well.

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