Tuesday, March 29, 2011

"NO ONE SHOULD BE ALLOWED TO TREAT A DISEASE THEY HAVEN'T HAD"

No one should be allowed to treat a disease they haven't had.

That phrase has arisen more than once in cancer support groups I've facilitated. People get annoyed, frustrated, and even injured by the insensitive behaviors of some healthcare practitioners. It's not that anyone's uncaring; the fact is that unless you've been there, you don't know what it's like.

In a series appearing in the NY Times Well Blog, cancer researcher Dr. Peter Bach relates accompanying his wife Ruth through Cancerland. Each installment reveals another aspect of living with cancer, especially what people actually suffer from--cancer's emotional consequences.

Dr. Bach tells of going with Ruth to her first radiation appointment. They were first seen by a young medical resident who recited every point of her history. This was painful for them, and, when you think about it, unnecessary. He writes, "[the resident] was oblivious to the agony he was causing us as he perfunctorily rattled off the events…" But that's what doctors do, right? That's part of the medical ritual. The problem is that many who perform it are unaware of the suffering it can cause.

A half-dozen medical doctors have been members of cancer patient support groups I've facilitated. Finding themselves on the less familiar end of the stethoscope, every one of them said, at some time and in some way, "I had no idea…"

The only popular representation of this issue that I've seen is the film, now twenty years old, "The Doctor." William Hurt plays a rather cold, aloof surgeon. After learning he has cancer, his attitude begins to shift. He gradually develops compassion such that he'll never return to his previous style of practice.

Fortunately, the development of compassion doesn't require a life-threatening illness. We can contact and appreciate cancer, say, without physically having it, for it's emotionally contagious. Peter Bach suffers from his version of Ruth's cancer. That is, he's now touching the semipermeable membrane that separates the experience of patient and doctor.

I'd predict that as fine a physician as he's been, this good man will now find even more compassion in his dealings with patients. I hope, as a couple of commenters suggested, that he gently educate the medical resident who dragged him and Ruth through the pain of their history.

Thursday, March 24, 2011

YOU CAN'T GET ENOUGH OF WHAT YOU DON'T REALLY NEED


According to author Fran Lebowitz, "Food is an important part of a balanced diet."

Come again? Many of her readers think of Lebowitz as a cynic. But to us cynics, she's the kid who points out the Emperor's nakedness.  

Health requires a balanced life diet, some of which is nourishing food. The rest includes feelings of worth, adequate exercise and rest, the joys of learning, intimate relationships, and other factors.

Of a healthy life diet's ingredients, few are physical. Feelings of worth and intimate relationships, for example, aren't things, but ways of living, so they can't be sold as "health" products. The physical ones, though--food, vitamins, supplements, exercise machines, surgical procedures, you-name-it--can be and are sold, to the tune of more than $25 billion annually.

"Health" product advertising is so successful that folks line supermarket aisles trying to divine from labels whether this pill, this gel, this patch, this fruit, this soymilk will awake the happiness that's languished within them. If only I had the proper supplements, the right omega oil, the ideal balance of carbs to fat…

Evidence is accumulating, though, that the greatest determinants of disease incidence are our past experiences and the life choices we make, not our daily intake of zinc. For example, if you were traumatized in childhood, you'll likely be exquisitely vulnerable in adult life to a range of serious diseases. See the effect of these "Adverse Childhood Events" in a 2009 Scientific American review,
http://www.scientificamerican.com/article.cfm?id=childhood-adverse-event-life-expectancy-abuse-mortality . My blog entry "Contact As Treatment" (http://healthcareasthoughpeoplematter.blogspot.com/2011/02/contact-as-treatment.html) related recent findings demonstrating social contact as a cheap and effective way of treating chronic illness.

Absence of disease is the notion of "health" that most of us grew up with. If we had a course in health, it no doubt emphasized the four basic food groups, regular checkups, and avoidance of drugs. That's fine as far as it goes, but fairly desiccate: what about the juice that makes us want to hang around? Isn't being loved as important as a well-balanced meal? Aren't humor and creativity and sex vitamins at least as essential as riboflavin?

The idea that health is an enjoyable life is gaining ground in our culture. Meanwhile, many of us will continue to graze product shelves in a futile search for fulfillment. Eating disorder guru Geneen Roth (author of When Food Is Love and many other sharp books) advises, "You can't get enough of what you don't really need."

Tuesday, March 15, 2011

MENTAL ILLNESS AND GUNS: A PUBLIC HEALTH ISSUE


Since January, when Jared Loughner shot six people to death and wounded thirteen others in Tucson, more two thousand (yes, two thousand!) Americans have lost their lives to firearms.

These scandalous numbers finally motivated President Obama to address gun violence last weekend. Politically cautious as always, he recommended enforcing laws that are already on the books. For example, the FBI's National Instant Criminal Background Check System (NICS), a database of names prohibited from obtaining guns, is far from fully implemented. Mr. Obama said, "We must do better."

True, if the NICS system had been strictly administered, it would probably have kept Seung Hui Cho from killing thirty-two people on the Virginia Tech campus.

But even perfect NICS operation wouldn't have affected Jared Loughner or the many others who haven't been legally designated as mentally ill. In Arizona, a person must be at least eighteen years old and have a qualifying psychiatric diagnosis and a resulting functional impairment to earn that designation. Though considered weird in his every circle, Loughner was never diagnosed--largely because he never sought treatment--so he was perfectly free to buy guns.

In California and most other states, a court order is required for designation as mentally ill, but the process can't reach that level until a mental health professional certifies one as a danger to self or others, or gravely disabled. A mentally ill man in our town shot three people to death ten years ago. Long a patient in our county's public mental health system, he should have reached the court, but no attempt was made to bring him there. His shoddy and negligent treatment was due in part to gross mismanagement and in part to gross underfunding.

In his talk on gun violence, the President failed to mention mental health treatment, a more effective approach to this conundrum. Instead of improving treatment, we're decimating it. Over the last three years, the states have reduced mental health budgets by $2.1 billion, and more slashing is on the way. In a stroke of perverse genius following the Tucson shootings, Arizona's Governor Jan Brewer announced her intention to cut $35.9 million in mental health services.

Maybe the President feels that embroiling himself in the states' choice of budget cuts will generate political blowback he doesn't need now. But I suspect he avoids the subject because he's aware of something more subtle: the bulk of people who are dangerously mentally ill will simply not come to professional attention. A this point in our history, we have no social or legal mechanism for keeping weapons from the hands of people whose minds are perilously aberrant, but still hold down jobs, attend school, and function more or less within boundaries we call normal. As weirdly as Jared Loughner behaved, he never triggered a serious mental health alarm until the shootings.

Many years ago, I worked in a federal facility. An employee was sent to me for a mental health evaluation because he was frightening his coworkers. A coiled spring of anger, he frightened me, too, especially when he revealed that he kept his car trunk filled with guns. I phoned his brother, a local deputy sheriff, to relate my worries that this man was a time bomb. His brother told me he was equally concerned, but there was nothing he could do, as the man had broken no laws and wasn't crazy enough to generate a court appearance. As far as I know, the man never exploded.

I believe this is no rare situation, and it's as ridiculous to allow it as it is dangerous. Do I have a solution? No, but I do suggest a course of action: we need to conduct a national dialog about the actual issue, which is mental health. Discussing gun violence as though it's solely about guns is a waste of time…and lives.

Wednesday, March 9, 2011

PLAYING IT SAFE


I was chatting with a friend in line in the post office. She told me that a couple of weeks ago, hiking with friends, she'd gotten dehydrated and fainted. She recovered in a few minutes. The group continued its hike and returned home uneventfully. When she told her husband, a nurse, what had happened, he insisted on bringing her to the local emergency room to check her out thoroughly.

She was examined, had an MRI, blood tests, and, "…just to play it safe…," was observed in the hospital overnight. A physician she'd never seen before visited her there. He said, "If you fainted, you shouldn't be driving. I've asked the Department of Motor Vehicles to suspend your license." The medical workup turned up no findings, and she went home the following morning.

She was in the post office to send off forms requesting restoration of her driver's license. She wasn't pleased by her hospital experience, especially its expense since they were uninsured. She asked me, "What do you think that whole thing cost?"

Knowing how insanely expensive American healthcare is, I facetiously guessed fifteen thousand dollars.

She said, "How did you know?"

What's to be learned from this debacle? When we want to "play it safe," how safe is safe? At what point do we accept risk and, ultimately, mortality?

We tend toward applying full-bore medical technology in every case for a couple of reasons. First, it's available, so what the hey, especially in those instances when someone else pays for it. Second, it seems to be the responsible thing to do. What if, God forbid, we miss the…(fill in the blank)? Third, if you really love your spouse who fainted, you'll leave no stone unturned.

Still, this approach is more often troublesome than helpful, as medical investigations can be confounding. We need to remember, for example, that all diagnostic procedures bear false positives and false negatives. CAT scans can show "tumors" that don't actually exist, and miss tumors that imitate normal structures. The same is true of the physical exam and every conceivable test. When a false positive occurs, it doesn't announce it's false, of course, so it can generate further testing. And just because a test result is "normal" doesn't necessarily mean everything's hunky-dory.

There are ways to approach this conundrum with better balance. Here are a few recommendations:

1. Become more knowledgeable medically. Do you know, for example, that dehydrated hikers can faint? Do you know how to treat a sick kid's fever?

2. Accept that it's impossible to guarantee perfect safety. You already do, to some degree: everyone draws a line they consider reasonable. E.g., hardly anyone wants a series of pulmonary function tests when they have a cough.

3. Be aware that other folks, drawing different lines, might ignite your fear. Your nurse spouse might insist you go to the E.R. Your doctor might want to run a few tests, "just to be sure."

Monday, March 7, 2011

OUR POOR PSYCHIATRISTS

Leave it to the NY Times Well Blog to come up with salient issues. On March 5 it published "Talk Doesn’t Pay, So Psychiatry Turns Instead to Drug Therapy"(http://www.nytimes.com/2011/03/06/health/policy/06doctors.html?pagewanted=2&_r=1&ref=health).

The piece describes how tough practice is for Pennsylvania psychiatrist Dr. Donald Levin. Schooled in the classical "talking cure," he's discovered his craft's devolution is perfectly parallel to that of family practitioners: insurance rewards short visits. Spend decent time with patients, and soon you'll be eating nothing but ramen.

About the time Dr. Levin began his training, I, too, looked into becoming a psychiatrist. My medical school's style of psych training was paleolithic, confined to behavioral therapy, which I found repulsive, and psychoanalysis, which was expensive, interminable, and relatively ineffectual. Peeking into psych residencies, I found it was something entirely different, a Brave New World of psychoactive drugs. Phenothiazines were revolutionizing schizophrenia treatment, and drug after designer drug was sliding down the pipeline to treat other conditions. In other words, it looked like psychiatry would soon become behavioral engineering through pharmacology. Nope, not for me.

Sure enough, that's what happened. My shrink friends' practices gradually turned toward fifteen-minute drug adjustments. New chemicals were touted as treatments for almost every kind of behavior, as though Big Pharma was outright inventing drug-treatable maladies. Indeed, that's today's state of the "art."

A friend who's a psych nurse in Massachusetts told me she took a week-long intensive refresher course in psychiatric medications. It was so replete with exceptions, variations, deviations, and qualifications that when it ended she approached the instructor and said, "Let me get this straight: it's a total crap-shoot, right?" The instructor nodded, "Right."

The psychiatrists and other docs who went into this business for its deliciously deep human contact are justified in feeling this terrible loss. I hear their complaints personally and read reams of them online. What are they to do to treat their pain, a potential source of depression? Of course, they can find some pill to take--and many do. But they can also approach their situation with genuine therapeutic intent, say, by seeing a well-trained non-MD counselor.

The essay contrasts Dr. Levin's experience with that of a former colleague, Dr. Louisa Lance, who practices personal-contact psychiatry. She courageously cut ties with insurers, so she no longer works for them, but solely for her patients. Treating fewer patients in a week than Dr. Levin treats in a day, she says, “Medication is important, but it’s the relationship that gets people better.”


Saturday, March 5, 2011

(BEEP) HOW PAINFUL THAT MUST BE FOR YOU (BEEP)


In an op-ed piece in the NY Times February 26 (http://www.nytimes.com/2011/02/27/opinion/27verghese.html?_r=1&scp=1&sq=treat%20the%20patient,%20not%20the%20ct%20scan&st=cse), Stanford physician and author Abraham Verghese critiques the use of computers in healthcare.

He sees them as a two-edged sword: marvelous in their capabilities, and at the same time a hazardously distractive presence. He writes, "…the complaints I hear from patients, family and friends are never about the dearth of technology but about its excesses." Its excesses amount to relentless intrusions into the patient-practitioner relationship.

One example is reported by DreamsAmelia, a reader of this blog and author of her own powerful blog, Shelved in Cyberspace (https://dreamsamelia.wordpress.com/). She writes, "…our nurse…had  her back to us while she filled out a computer screen and asked my daughter to rate her pain--not even making eye contact, let alone holding her hand!" 

You get what she means. You've probably had a similar experience.

We might take this tendency more lightly if it weren't occurring across society. Remember the New Yorker cover around last Hallowe'en? It depicted parents accompanying their trick-or-treating kids. Each parent's face is illuminated by the bluish glow of the cell phones they're consulting. That is, we're relating more and more, day by day, to machines instead of to one another. The "friend" we have in cyberspace is hypothetical compared to the warm, fleshy one we can sit with knee-to-knee, heart-to-heart. And try though we might, we'll never develop a compassionate robot.

Patients aren't the only ones discomforted by medical technomania. I've heard healthcare practitioners complain that hi-tech intrusion is supplanting the human contact that had been the source of joy in their profession.   

If this phenomenon is distressing, we need to do something about it, since if we don't, who will? We can begin by simply saying so, and move on to behave as we feel we should. Change never occurs any other way. As Gandhi advised, "Never do the wrong thing, even if the authorities require it. Always do the right thing, even if the authorities forbid it."

Thursday, March 3, 2011

THE RIGHT TREATMENT


When Jack, a recently diagnosed member of our cancer support group, said he hadn't yet chosen a treatment, other members voiced their concern.

“Cancer cells don’t take time off, you know,” advised one.

Jack said standard oncology was too toxic for his taste, so he’d first like to try alternative approaches like dietary regimens and coffee enemas. Two weeks later, though, he hadn’t begun alternatives, either. Other members began to lean on him, even suggesting that his strategy was flat-out wrong. During a lull in the conversation I found them looking my way, presumably because as group facilitator and ostensible medical arbiter, it was up to me to convince Jack of The Truth.

That moment begged the question of “support's” nature. Would supporting Jack mean aiming to extend his survival? Maximize his life quality? Keep him from wasting his time with quacks? Help him access a miracle? What are we after, here, anyway, in a world that has no guarantees?

It's strange that while knowledge of cancer generates confusion in the newly diagnosed, everyone else knows clearly what to do. Opinions flood in, along with books, clinic ads, diets, prayer cards, crystals and affirmations. Apparently there are as many routes as ways to slice an onion. Obviously, no one can buy into all of them, especially the ones that are mutually contradictory.

This emotional maelstrom following diagnosis is one of those rare moments poets describe, the intersection of crisis and opportunity. While the stakes are high and treatment choices abundant, there's little clue as to which might prove most effective. That's why a helpful act at this point is to simply stop and contemplate the situation. When we do that, the question, “What to do?” becomes, “What are my deepest values, anyway? What do I really believe in?”

Over my forty-some years in this business, I’ve seen people choose hither and yon. Sure, most opt for standard oncology, and most of those throw in an alternative or two as well. Some go wholly for alternatives. Of those approaches, many look weird even to me, and I’m not exactly orthodox. Occasionally, when someone heads toward an intervention I believe to be harmful (one example: intravenous hydrogen peroxide), I warn them. A few people opt for no treatment at all. And you know what? An individual's success—defined sometimes as longterm survival, sometimes as contentment—correlates best with his or her faith in the chosen direction.

These are adults, after all, making mortally personal decisions. I'm not about to frog-march them down to the oncology clinic since I’m not sure which way I’d go if I were diagnosed. My own history includes treatments that range from standard medicine to visualization to pranayama. I don’t feel mandated to influence anyone toward any particular treatment.

To me, support has come to mean helping people navigate this slippery reality. It's no easy task for any of us since, as the Wise Ones say, “If you can see the path, it can’t possibly be yours.”

So what does Jack need? For him, now, support consists of unconditional love. In fact, when should it not?