Thursday, April 29, 2010

AN OBSERVATION ABOUT CAREGIVING


Last night I was talking with a friend whose wife died of cancer ten years ago. The tribulations of caregiving so affected him that he now devotes a big chunk of his life to establishing support programs for caregivers. Having spent more time in caregivers’ groups than I have, he offered a perspective I’d hadn’t considered before.

“The ambient mood in a patients’ group is often energetic, like a response to challenge,” he said, “but caregivers’ groups are almost always sad.”

His appraisal resonated with my limited experience. People who have cancer (and, I suggest, other serious diseases) share a particular view of their experience, and their caregivers quite another.

Discussing what the difference might be, my friend and I agreed that the person with cancer feels his or her life is threatened. A face-to-face encounter with The Reaper puts all the cards on the table: it’s time to rigorously assess priorities, a process that transcends the dilemmas of daily life. Instead of wondering which laundry detergent to buy, we look critically at our relationships with family members, our role in the community, our place in the universe. In other words, our internal life shifts from the banal toward the mythic.

Not so for caregivers. Caregiving is drudgery, banality personified. An arguably common caregiver thought is, “How long will this go on?”, followed, of course, by a pang of guilt. We give care out of love, but as the disease process erodes our loved one the connection can fray, so that ultimately all that’s left is work.

Not everyone who personally suffers cancer responds at the mythic level, and not every caregiver takes on the task as pure drudgery. An eighty-year old man in our support group cared for his wife by himself while Alzheimer’s Disease diminished her. The last couple of years she couldn’t move or recognize anyone. She was essentially gone. For twenty-fours hours daily he fed her, cleaned her, turned her to treat her bedsores, saw to her every need. And he spoke of this assignment as a privilege.

She died a month ago. Our group considers him a saint, but he demurs. “It’s nothing special,” he says. “You love someone, it’s what you do, period. She deserved the best care. So will I when the time comes.”

Tuesday, April 27, 2010

GO TO HOUSEWARES AND GET UNDRESSED; I’LL BE RIGHT THERE

If I have any medical practice at all, it’s out in the agora, the mercado, the public square.

Many years ago I was the volunteer tickettaker at a weekly community movie. This is a small, intimate town, so I knew many of the customers. It wasn’t unusual for a friend to hand me a ticket and say, “Hey, would you mind just taking a look at this rash?” As I punched their tickets, people raised their shirts, got me to look in their ear, feel their pulse. These weren’t what you’d call optimal examinations, but anthropologists might say that much of any exam is a ritual doorway into deeper connection.

There wasn’t time to do more than scratch the surface in the movie line, so these folks generally sought me out the following week, in our local supermarket. I can’t tell you how many healthcare conversations occurred in the bread section and over the oranges.

One was in the dairy aisle, with a man named Dave. He and his wife Sarah took total care of their adult son, who’d been brain-damaged several years earlier. Sarah, a retired nurse, was an excellent caregiver, but gave well past her depletion point, as many caregivers do, and felt continually guilty for not doing more. When she finally fell into a depression, she handled it the only way she knew, which was to see her doctor. The doc put her on antidepressants, but they didn’t seem to help. Dave asked me, “Is Sarah sick? Is she neurotic? What’s going on?”

Another afternoon, while I waited for my smoked salmon to be wrapped, Ray, a neighbor, brought me up to date on his predicament. A few years ago he’d developed a rash and joint symptoms consistent with Lyme disease, but blood tests were equivocal. His physician treated him as though he had the disease, though, and Ray improved. Then he flared again, and the treatment’s effectiveness waned. Ray obtained a second opinion, which was that he didn’t have Lyme at all, but more likely rheumatoid arthritis. He got dramatic relief from the oral steroids this doctor prescribed, but felt speedy during the day and insomnic at night. His first doctor said the Lyme bug must have invaded his brain; the second said the steroids were to blame. Confused, Ray had further testing done by a laboratory specializing in Lyme disease. He carried the results in his wallet. He took them out and asked what I thought. I couldn’t begin to understand what these tests even tested, let alone interpret results. He told me his doctors, for their part, offered him contradictory interpretations.

“What should I do?” he asked me. “One doctor says I have Lyme, the other one says I have something else, and no one’s treatments do much. And I’ve seen three other doctors in clinics and emergency rooms who tell me it’s all in my head.”

The following week, my friend Ann found me in front of the freezers. I asked why I hadn’t seen her in weeks. “Don’t leave home much now,” she said. “I’ve got chronic fatigue syndrome.”

She told me she’d stopped seeing medical doctors because as soon as they heard her history, they wanted to refer her to someone else. Some told her CFS isn’t a valid entity, and others didn’t say so but made it obvious that’s what they believed. No one has done anything to help her feel better.

I’m glad I saw these people in the supermarket. If I’d seen them in a medical setting, I’d probably have been as frustrated as their doctors. It's that phenomenon, medical frustration, that these patients all have in common. Their docs are disturbed that they don’t fit into mainstream medicine’s categories, so there’s no way they can fix them. Sarah’s depression isn’t a medical problem; it’s a tribulation of real life. Ray suffers more now from confusion than from his physical symptoms. Ann is angry about not being taken seriously.

In these cases, where it was unsure what the disease was, or whether there even was a disease, it was clear enough that the people were suffering. No kidding: every instance of sickness involves emotions. The disease can resist treatment, but we can always treat the emotions.

Friday, April 23, 2010

…AND FOR DESSERT, PERHAPS, CRÊPES SUZETTE?


Let’s say you’re a doctor and you get a note from your local hospital inviting you to a continuing medical education seminar. It’s to be held at a swank restaurant, doctor, and by the way, which entrée do you prefer, poulet a la Montrachet or medaillons de veau en croute? You’d probably go for it, right? Especially if it’s on the house, paid for by Avarice Pharmaceuticals, which also sponsors the evening’s lecturer, the acclaimed chair of the internal medicine department of Majestic University.

While you sip your well-aged Chateau neuf du pape, the professor unrolls an encyclopedic discussion of von Rootpooten’s syndrome, including its treatment with the drug Expensivol, which happens to be manufactured by Avarice Pharmaceuticals. Avarice hasn’t explicitly directed the professor to tout Expensivol, but he hasn’t climbed to the top of the success ladder without constant awareness of which side his bread is buttered on.

A standard style of “continuing medical education,” then, amounts to well-financed, delectable commercials. Matter of fact, this sounds like today’s politics, doesn’t it? Politicians claim not to be influenced by donated campaign contributions, meals, sports tickets, and golf junkets, and in the same way physicians maintain that these meals and other percs don’t influence their prescribing habits. “After all,” one told me, “all the pharmaceutical companies do it, so why would I favor one’s drug over another?”  

The point that’s missed here is the relentless message, no matter who’s paying for dinner: drugs are the answer. For low-tech interventions like healthier diet, higher quality relationships, and, all-in-all, a review of one’s entire life management, there are no sponsors. As a cancer support group facilitator, I’m jealous. I’d love to be wined and dined, but who’s going to do it, competing chair manufacturers?

Fortunately, physicians’ organizations are beginning to recognize third parties' wholesale domination of healthcare. This occurs in many ways in addition to gourmet dinners. When physicians are paid to conduct research and to test drugs, for example, their subsequent medical advice and treatment are often tethered to their patron companies. 

This week the Council of Medical Specialty Societies, which includes the American Academy of Pediatrics, the American College of Cardiology, and eleven other groups, adopted a wide-ranging ethical code. “The public relies on us,” the code states, “to minimize actual and perceived conflicts of interest.” Besides issues involving conflicts of interest, the code covers financial disclosure, independent program development and independent leadership. It prohibits society presidents, CEOs and editors-in-chief of journals from having “direct financial relationships with relevant for-profit companies in the health care sector.”  

The code isn’t law, only voluntary guidelines. But at least it’s the medical profession’s official recognition, at last, that its dominance by industries exclusively tuned to profit, not patient care, is in its twilight days…one hopes.

Thursday, April 22, 2010

A COMMENT...

Below is a comment on yesterday's posting here, by fellow blogger Lori Hope. Because readers of this blog experience continual problems posting comments here, I'm considering moving the blog to another platform. "Help" from blogspot.com hasn't been useful. If you know a foolproof way to get your comments here published, please e-mail me at jeffkane@theunion.net.
Thank you,
Jeff

From Lori:
Brilliant post, Jeff. You made me reconsider some preconceived notions I had - and you made me laugh out loud. (You also delighted me with your command of the language and lovely turns of phrase.)

I can't wait to send this to my son's best friend, who's in pre-med at Columbia.

Respectfully yours,

Lori Hope
http://www.LoriHope.com
http://LoriHope.com/Blog

Wednesday, April 21, 2010

SYMPATHY FOR THE DEVIL


If you’re not a medical doctor, please reflect on what it’d be like to become one. After college, you endure four years of medical school and then a varying period of postgraduate training—three years for internal medicine, seven or more for some surgical specialties.

In an earlier post I described how medical training consists of heads and tails: you learn medical science and you simultaneously learn how to be a doctor. Though the latter curriculum, being implicit, isn’t often discussed, its influence is profound and indelible. To be a doctor you need to play the doctor role, which means appearing competent, confident, in control, and to a great degree, clinically detached: in other words, you learn to imitate the popular concept of a scientist. This curriculum isn’t taught in courses, only by example. As a student you learn to behave like your resident, who behaves like the senior resident, who behaves like the department chair. Immerse yourself long enough in this subculture of detachment, and eventually you’ll fit right in.

Keep in mind that this period of training spans from one’s early twenties, when non-medical peers are learning adult social navigation. While my friends from high school and college were marrying, having babies, going on picnics, and getting in trouble and finding their way out, I and my fellow med students were monastically laboring, year after year, within hospital hierarchies, socializing only with one another. It dawned on me in my mid-thirties: blimey, I’m socially stunted!

That’s not just an impediment at parties. It means we docs go into practice never having developed the skill of hanging out informally, without any agenda, long enough to know others deeply. Failing that, many of us aren’t even aware we can deeply know others—or ourselves, for that matter. This can eventuate in a rather desiccate life.

Yesterday I received the quarterly Medical Board of California newsletter. I routinely read it mainly for perverse amusement, as it lists the physicians who’ve had their licenses pulled for having sex with their patients or sewing someone’s elbows together. The lead article in this issue, about physician well-being, was worth reading. It reiterated the common knowledge that “…medical students, residents, faculty physicians, and physicians in practice suffer from burnout, depression, and suicide at rates equal to or higher than the general population.”

That our most highly trained healthcare professionals suffer such dire statistics themselves is astounding, but offers no clue to the sad situation’s source. Interviewed on a recent call-in radio show, I tried to explain how medical training leaves practitioners devoid of the tools they need to cope with the suffering in and around them. A caller screamed that I had a lot of nerve defending the medical miscreants who had abused and damaged him. Having been abused by a couple of docs myself, I could sympathize with him, yet I had to point out that we’re not going to rectify things simply by castigating doctors. Because of their histories, they have little or no idea how they come across to patients. Sure, dissatisfied patients fire docs all the time by voting with their feet. When I asked a colleague, “What do you make of it when a patient who’s been coming to you suddenly vanishes?” he answered, “Well, I guess that patient’s been cured.” To be sure, he had his tongue in his cheek, as though he knew the right answer but wished he didn’t.

There are glimmers of hope. The medical school at the University of California San Diego, for example, conducts a “Healthy Student Program,” offering elective courses in stress management, time management, yoga, meditation, peer counseling training, active listening, and prevention of depression, anxiety and burnout. Students are encouraged to exercise and to participate in social and cultural events.

In other words, the school is aware of the problem and is taking sensible measures. This program and its cousins around the country will have a positive effect, but limited, and here’s why: it contradicts the implicit “how to act like a doctor” curriculum. You can’t teach someone to remain  emotionally detached and at the same time to be introspective, personable and compassionate. And for now, the former is in the driver’s seat.

Literally exclusive objectivity is so firmly incorporated into current medical school faculties that every humane opportunity UCSD offers its medical students is considered touchy-feely frill compared to the traditional solids—anatomy, physiology, biochemistry and pharmacology—and there are only so many hours in the day. A few years ago I was asked to teach an afternoon of doctor-patient relationship to a group of med students. Not four minutes into my presentation, a professor of surgery entered the room, walked right by me, handed quizzes to the students, told them he wanted them done by five o’clock, and walked out. The ambient mood changed radically. I might as well have continued on in Japanese. At least, I thought, there couldn’t have been a more graphic demonstration of current priorities.

Several years ago I dropped in on Eric Cassell, MD, Emeritus Professor of Public Health at the Weill Medical College of Cornell University in New York and the author of The Nature of Suffering. Dr. Cassell is arguably the grandfather of the movement to restore humanity in healthcare. I asked him when he thought the tipping point might occur, when humane contact would outweigh detached scientism.

“Not in my lifetime,” he snapped. “How old are you?”  

I told him. 

"Probably not in your lifetime, either," he said. "But it will happen."

Saturday, April 17, 2010

YOU CAN’T FIX SUFFERING

I’ve been seeking to explain why medical doctors so widely undervalue patient and caregiver support programs. Support treats not the physical disease, but the emotional suffering of patients and caregivers. One explanation is that disease, as a resident of the physical, measurable world, is fair game for physicians trained exclusively in objective science. But suffering, being subjective, lies outside scientific jurisdiction, so while physicians might recognize it, most don’t feel adequate to address it.

Yesterday a doctor friend offered me another plausible explanation. He pointed out that physicians are excellent problem solvers. They gather the parts of a disease puzzle and put it together. Suffering, though, isn’t a puzzle. It’s a mystery. Puzzles can be solved, but mysteries cannot. Showing a mystery to someone dedicated to solving puzzles only generates distress.

What do we do with mysteries, then?

We need first to admit that there’s much in this life that’s not only unknown, but permanently unknowable. To the questions everyone asks—why we fall in love so erratically, why there’s evil in the world, where lie the sources of good and bad luck—poet Gertrude Stein replied, “There isn’t an answer. There has never been an answer. There is never going to be an answer. That's the answer.” Amazing: no answer, yet somehow we get through our days.

When sick, we can feel trapped, alone, in our particular mystery. Why me? Why now? Why in this way? What’s next? What’s death like? The challenge for physicians is to recognize that every patient and caregiver bears a dimension of discomfort that cannot possibly be fixed. No physician in the world can cure anyone’s suffering, but honestly witnessing it, openly, compassionately appreciating it, will help the sufferer to navigate through it.

Sunday, April 11, 2010

WHAT IF THEY CRY?


I’ll let you in on a little secret. When I first began to facilitate cancer support groups thirty years ago, I didn’t feel quite competent. Part of my shakiness was due to the fact that I wasn’t a psychotherapist. I had no psychiatric training beyond what all medical students get, and believe me, my ration remains unhelpful. But even had I been a qualified psychotherapist, I might still have asked myself, “What can I say that’ll help people?” “What if they break down and cry?” “What if someone absolutely flips out?”

Fortunately, I pressed on, and sure enough, my most worrisome predictions came to pass. I often didn’t know what to say; but that’s exactly what I wound up telling people. They broke down all the time; I found myself holding them and just letting them do it. A handful of people actually did flip out; I had private heart-to-hearts and learned how to recruit help.

My fears, I’ve come to understand, concerned issues native to plain old human contact. Emotional turmoil is a normal feature of living with cancer. Just hearing the diagnosis blows fuses. If you get a life-threatening illness and you don’t get anxious or fearful or angry or confused, then I’d doubt you’re normal. (I should add that a small number of people with cancer are mentally ill in addition, and they do indeed need to be specially addressed.)

Too many of us, especially physicians, consider emotions a psychiatric mine field. That's a shame, because relegating emotions to so-called specialists voids one’s opportunity to be a compassionate companion. Emotions aren’t foreign territory; they’re what life is about. So while my work doesn’t require psychotherapy training, it does require education in human intimacy.

I see “support,” then, as nothing more than a deep conversation between friends. Your friends are friends exactly to the extent they love you unconditionally. That means they listen to you so profoundly that their comprehension of you can surpass your own. Listening with their whole being, they have no idea what they’ll say next. They don’t interrupt, shut you up, contradict you, or shine you on. (They don't try to fix you, either, but that's a subject for another post.)

When you listen with this intensity, you encourage the speaker to transcend the mundane, go beyond daily modular conversation, the first draft, to drop ever more into the core to see what’s there. When what’s there is suffering, of course the visit hurts, but that’s where resides the map to the way out.

Sunday, April 4, 2010

PAGING DR. WOO-WOO

When we pass the talking stick around the cancer support group and people say what they need to say, a theme often emerges. Three, four or five out of twelve present raise the same issue—maybe it’s anxiety, unclear medical information, death, or spirituality. That issue then dominates the discussion.

A theme has arisen increasingly in my non-group world, so I guess it’s begging closer attention. It is this: physicians generally don’t recognize the benefit of psychosocial support. Several instructors of communication and psychosocial support recently confided to me their frustration that doctors just don’t seem to get it.

I’ve wondered about that a long time. It was only a vague abstraction to me, though, until a chief of oncology summoned me ten years ago. He said, “Dr. N.’s complained about you. He says what you’re doing is witchcraft, you know, quack stuff.”

“But I…”

“Yeah, I know. Don’t worry, I have faith in support groups. But go and do what you can to smoothe his feathers, okay?”

When I visited Dr. N., he said, “There’s no evidence that support groups work.”

“What evidence would convince you?”

“How about length of survival? I can show that chemo extends survival. Can you show anything like that for, what, conversation?”

On his desk was a framed photo of him with his family. I asked, “Do you love your wife?”

He put his palms on his desk. “Of course I love my wife!”

“Can you prove it?”

Maybe I shouldn’t have said that. He showed me the door, but at least he left me alone from then on.

He loves his wife, but he can’t prove it. Who can? We can show our feelings only by our behavior. The axiom, “Actions speak louder than words” actually underrates actions. For much of our behavior, language fails utterly. Words only beat around the bush; what we do is the fullest truth. That is, fundamental human processes—love, wisdom, humor and suffering, for example—can’t possibly be measured. The Easterners say, “The Tao that can be spoken is not the Tao.”

As a scientist myself, I can understand colleagues insisting on scientific corroboration. But good grief, not for everything. It shouldn’t be news that we scientific, objective types lead lives every bit as irrational as anyone else. We fall in love, fall out of love, hold contradictory values, entertain embarrassing fantasies; but once we put on that white coat, suddenly the objective numbers need to add up or we don’t buy it.

Remove the coat, and things look a little different. A half-dozen medical doctors have, over the years, been in cancer support groups I’ve facilitated. That is, they themselves had cancer. Every one of them marveled that their medical experience and Patientland were nations alien to one another. Most told me, “I had no idea.” I knew them all as remarkably kind physicians, personable and compassionate with their patients, yet none had ever thought to refer one to a support group.

Why don’t doctors see support as a natural, obligatory aspect of medical care?

My initial assumption was that docs might be threatened if they weren’t a full-service operation, if they couldn’t provide all the treatment their patients need. Yet they routinely refer patients to surgeons, radiation oncologists and other subspecialists.

Some will even refer to psychotherapists. A neurologist told me, “I always ask my patients how they’re doing emotionally. If they tell me they’re okay, well, fine, then, and if they tell me they’re having trouble, I send them to a psychiatrist.”

Excuse me, but who isn’t vastly upset by a serious diagnosis, whether or not they recognize their turmoil? The truth is that most patients, at least at first, suffer so amorphously as to be verbally inarticulate. (Indeed, support group newcomers often simply cry at their first meeting.)

I don’t believe this neurologist is unusual in his naïveté about emotions. In fact, it’s a deliberate result of medical training.

You need to know that medical school features two simultaneous curricula. The official one is the Practice of Medicine. The other, How to Be a Doctor, is taught by example. We’re rewarded over our years of training for emulating our medical elders, and at last we get inducted into our profession’s exclusive subculture, a group bound by language, outlook and manner. (Believe me, it’s a profound personality changer. Author-physician Rachel Naomi Remen reports a tombstone bearing the epitaph, “Here lies George Brown, born a man, died a gastroenterologist.”) We current practitioners hold medical science in awe to the degree that if we did anything to diminish our status as scientists, we’d be shamed in front of our peers.

So it is that we’re obsessed with objectivity. If our fellow docs were to peek into our toolbag and discover subjective skills like disciplined irrationality, artistic license, spirituality and unconditional love, we’d be embarrassed. Dr. Touchy-Feely. Dr. Woo-Woo.

But here’s a professional secret: all docs are a little closet woo-woo. I routinely ask my colleagues, “Have you ever made a medical decision that contradicted the results of your objective tests?” If I ask them privately, one hundred percent answer in the affirmative. In the doctors’ lounge they’d deny it till they were blue in the face.

I believe change is in the wind, though. I know a few outliers, cultural pioneers, docs who wear their readiness for intimacy openly...and they remain scientists. They’ve just expanded their concept of science to see the world through a wider-angle lens, declining to limit their senses to the measurable. When they ask the quintessential medical question, “What’s going on here?” they get a fuller, far more useful answer. As for the docs who say, “I’m sorry, but I can’t deal with what’s not measurable,” we’ll wait patiently for them.

Friday, April 2, 2010

A COMMENT ON “SPIRITUALITY”


Occasionally a reader posts comments successfully here, but I’ve heard from several who find it impossible. Search though I may through Blogspot.com, I haven’t yet figured out how to do it. So I publish comments as blog entries. This fascinating one came to me today, written in response to the March 17 “Spirituality” entry…

"On the other hand, what does this have to do with me?"

As I read that line, I was struck with how often I've considered that question, as it relates to my thoughts and emotions. When I have been able to look at them objectively, from a place of detached awareness, they seem so disconnected from any semblance of present reality. It is as if they appear out of nowhere, at the margins of my awareness, like phantasm in some forest glade childhood dream and  beckon me to follow them on mindless adventures. In those times I have been able to remain undistracted; they vanish as mysteriously as they appear, leaving me alone momentarily in tranquility.

It's a wonderful mystery, this aspect of my mind, which can remain so unchanged be the continuous stream of thoughts and emotions that pass through it. There are moments in that place of awareness, when there is an intuitive knowing, that even when death comes, I may be able to echo that phrase, "On the other hand, what does this have to do with Me?"

THE THREE GREATEST CANCER MISPERCEPTIONS

I doubt we’ll make much progress in treating the "whole" cancer patient until we confront these three common, profound, and subtle cultural misperceptions about the disease. I say “cultural” because healthcare practitioners as well as rank-and-file citizens share these notions. They are:

1) Cancer means doom.
For the great majority of people who’ve been diagnosed with cancer, it doesn’t mean doom at all. It’s certainly no picnic (“Not for sissies,” said a support group member), but for most people it’s a chronic illness, a challenge to live with. Over ten million Americans have or have had cancer and are leading regular lives.

2) Cancer is a tumor.
Sure, part of it is a tumor (or, in the case of leukemia, circulating abnormal cells). Considering what people suffer from, though, a substantial portion of cancer is the emotional tumult it causes. Treating tumors without treating the emotionally suffering person is doing exactly half a job. It’s remarkable—stunning, astonishing!—that so many practitioners don’t recognize this. In fact, many people with cancer don’t recognize it; some deny it and others suspect that their emotional roller coaster is a sign of mental illness rather than a normal concomitant of cancer. Emotional suffering is so native to cancer that support services must eventually be considered as much a part of cancer therapy as chemo, radiation, and surgery.

3) Cancer affects individuals.
Nope. One person carries the tumor, and everyone around that person is affected with their version of that cancer. Relatives and friends can become angry, withdrawn, frantic, guilty, and overworked. It is not unusual for caregivers to suffer more than the identified patient, and to get sick themselves. Everyone around the person who has cancer needs to be considered for treatment, including children. No, especially children.