Friday, January 29, 2010

OFF OUR KNEES


When I asked a friend, “How are you?” she answered, “I don’t know. I don’t see the doctor till Tuesday.”

She happens to be from a generation older than mine. In her day, the word “assertive” hadn’t yet been coined. Your doctor told you what was what and you didn’t ask questions. The relationship was unquestionably vertical, but thankfully it didn’t stay that way. I mentioned in an earlier blog entry pediatrician Robert S. Mendelsohn’s comment his 1991 book Confessions of a Medical Heretic, “We physicians will come down off our pedestals as soon as patients get up off their knees.” 

Sure enough, that has come to pass. Patients gradually stood their full height and insisted on partnering in their healthcare. But to do so required a little work, mainly in becoming knowledgeable. It’s normal these days for patients to Google their way through their diseases and treatments. They learn how to interpret their blood tests and which further ones make sense. They know the value of a second opinion and don’t feel awkward about getting one. Many can actually speak fluent medicalese.

The best cure I know for helplessness is finding some control. Control, in addition, affects survival duration and life quality. If I’ve seen any correlation between patients’ choices and their outcomes, it is this: people seem to do best when they’ve consciously selected their treatment. (By the way, this includes those who consciously select alternative treatment and even no treatment.) 

To be assertive doesn’t mean contravening physicians’ medical judgment, only researching and then expressing preferences. I call it “smart shopping.”

Hanging out with assertive cancer patients has benefited my own healthcare. I have something called “Dupuytren’s contractures,” in which tendons in the palm tighten, slowly bending the hand into a claw. When I showed this to my physical therapist—a truly gifted healer—she said, “Oh oh. You’re going to need surgery.” 

Some years ago I probably would have passively acceded, and headed to a surgeon. Instead, I said, “Only if we can’t fix this ourselves.”

She was game. Ten visits plus procedures at home, and voila! No claw hand.

Wednesday, January 27, 2010

TREATING SUFFERING ISN'T ROCKET SCIENCE, BUT PROBABLY MORE USEFUL


We humans are huge beings. On the outside, physically, we’re organs and tissues, a community of superbly coordinated cells. This is no small thing in itself. But inside, we’re limitless. In our imagination we can experience anything: other times, other places, even occupy other bodies. We undoubtedly have capabilities we’ve never even thought of.

When I look at myself in a mirror, I see a guy, a lump of flesh. That lump is also the infinitesimal tip of a boundless existential cone. I’m a world of history, relationships, and meaning.

That world is what suffers when we’re sick. Anyone who’s ever been sick knows it’s always a double event. Your body, your outside, doesn’t work right, and it hurts. As for your inner world, it’s completely trashed. You’re anxious. You feel unmoored. You’re angry at this unfair universe. You imagine the most dire future for yourself, and then feel guilty for behaving so neurotically. And so on. These normal internal, emotional responses constitute most of sickness’ suffering.

Since everyone’s personally experienced this, not just one time but with every instance of sickness, why have we evolved a healthcare system in which addressing suffering is the exception rather than the rule?

We’re not constrained to treat either physical disease or suffering. There’s no reason why we can’t do both, and doing both doesn’t mean doubling our effort. Treating physical disease is a verb and treating suffering, an adverb. How we enact with sick people is how we treat their suffering.

That means first envisioning them as entire worlds out of whack and then simply listening to them. How, my friend, has your unique world been affected?

Monday, January 18, 2010

I KNOW WHAT YOU NEED



Last week, blogger Lori Hope posed the question on her website (http://www.carepages.com//blogs/helpshurtsheals/posts), “When is it okay to offer unsolicited advice?”

When we’re ill, others offer suggestions for practitioners, second opinions, clinics, diets, books, and so on. We can’t follow all the tips we’re given, and besides, some tips contradict others.


It’s worth perusing the responses to Lori’s post. One reader said unsolicited advice can be appropriate when the person's behavior impacts someone else. Another wrote that in her case it’s a moot point, since her family ignores her advice anyway. A nurse wrote, “I try to just listen and give as many options out there if they ask. Sometimes there is no answer. Patients need to make their own decisions but I am big on making sure they have informed ones.” Another reader said she’d rather hurt someone's feelings [by offering unsolicited advice] than take a chance on them not having truly valuable information; as she poignantly put it, “I would rather risk losing a friendship than losing a friend.”



I find myself asking why we offer advice in the first place.



Well, duh, we want to help. But why do we want to help? To end suffering, of course. That includes our own suffering, for when our friend feels better, so will we.


Sometimes we really can end suffering. My friend complains to me his foot hurts; I notice it’s lolling in the campfire, in flames; I encourage him to pull it out; he does, the pain stops, he’s grateful, and I feel better.


But that situation’s the exception rather than the rule. Chronic and life-threatening disease isn’t as simple as a foot in the fire. First, the foot will remain in the fire; that is, the disease will likely not get cured. And second, most of sickness’ suffering results not from the disease, but from the person’s emotional response to it.


When well-meant suggestions aren’t taken, that’s why. They simply don’t touch the source of suffering. Touching the source requires deeper probing, a more extensive conversation, and sometimes, I’m sorry to say, the summary offer of advice serves to end the conversation rather than deepen it.


Before I offer advice, then, I ask myself what my motive is. Will my suggestion be taken and effectively applied, or am I making the offer because it gets me off the hook, absolves me from going more deeply into my friend’s suffering? This is a hard question for all of us. As a human being, I sometimes err on the side of my own comfort—but at least I’m working on it.


Please note that I’ll be fallow the rest of this week, so don’t expect new material here until January 25 or so. Meanwhile, I encourage you to enrich the conversation by adding your comments to these postings.

Thursday, January 14, 2010

ENGAGE HEART BEFORE OPENING MOUTH

A friend of mine, successfully treated for primary brain cancer ten years ago, has been closely monitored since. The medication she was taking to lower her cholesterol can affect the liver, so she received regular liver enzyme tests. A couple of times the tests were abnormal. When her doc took her off the med, the tests came down. Now she hasn't taken that medication for two months, she’s in fine health, but her liver tests mysteriously rose again.

A likely cause is a plain old error. An appreciable number of blood tests—some studies show one out of six—are flat-out wrong, for a variety of reasons: the machine wasn’t correctly calibrated that day, the technician didn’t prepare the sample properly or mistakenly tested the wrong blood sample, that sort of thing. My friend’s test, then, needs to be repeated.

Her doctor was occupied, so she saw the physician’s assistant about the report. She asked, “What do these abnormal tests mean?”

“Well, we don’t think you have hepatitis, so it might be liver cancer or maybe cirrhosis, something like that.”

My friend, stunned and at the same time furious at the P.A.’s insensitivity, responded with an obscene curse. Maybe she truly does have a serious liver ailment (which I doubt) and maybe she doesn’t, but as a vulnerable, emotional being, she deserved to be informed of the possibilities more gently.

I applauded her for her appropriate response, but it was only a first draft. What she needs to do is to expand it from the F-bomb to a complete, comprehensible, educational message. The P.A. might have come away from the encounter erroneously thinking, “Wow, she’s really angry. I guess I’d be angry, too, learning I have liver cancer.”

Keep in mind that there’s nothing within medical practice that offers practitioners feedback about their communication quality. Malpractice lawyers teach till they’re blue in the face that most litigation comes not from outright mayhem, but from a suboptimal relationship, meaning poor communication. To this P.A., better communication could mean telling the patient she might have liver cancer. Obviously, this is inadequate.

I perennially suggest that we give regular feedback to our practitioners. Unless they receive a praising card or a detailed critical letter, they have no idea whether the quality of their presence is helping or injuring patients.

Monday, January 11, 2010

TOUCH



I wrote in an earlier blog that a woman in a cancer patient support group complained, “When I was in the hospital I was poked and probed and ultraviolated, but I was never touched.”

In authentic, effective healthcare, touch is more than physical contact. As physician-author Abraham Verghese recently explained (http://content.healthaffairs.org/cgi/content/full/28/4/1177),

“I recall one patient who was, at that point, no more than a skeleton encased in shrinking skin, unable to speak, his mouth crusted with candida that was resistant to the usual medications. When he saw me on what turned out to be his last hours on earth, his hands moved as in slow motion, and as I wondered what he was up to, his stick fingers made theirway up to his pajama shirt, fumbling with his buttons. I realized that he was wanting to expose his wicker-basket chest to me: it was an offering, an invitation.

I didn’t decline. I percussed, palpated, and auscultated. I think he surely must have known by then that it was vital for me, just as it seemed necessary for him. Neither of us could skip this ritual, which had nothing to do with detecting rales in his lungs, or finding the gallop rhythm of heart failure.

No, this ritual was about the one message that physicians have needed to convey to their patients, although God knows, of late, in our hubris we seem to have forgotten, we seem to have drifted away, as if with the explosion of knowledge, the whole human genome mapped out at our feet, we are lulled into forgetting that the ritual is cathartic to the physician and necessary for the patient, forgetting that the ritual has meaning and a singular message to convey to the patient. And the message,which I didn’t fully understand then, even as I delivered it, and which I understand better now, is this: I will always, always be there, I will see you through this, I will never abandon you, I will be with you through the end.”

Wish I’d written that. Thanks, Abe, and thanks to my two doc friends who simultaneously forwarded the essay to me.

Wednesday, January 6, 2010

A HUNDRED YEARS OF FLEXNER, PART TWO


After John D. Rockefeller, Andrew Carnegie, and Abraham Flexner made science the basis of medical training, healthcare achieved mind-boggling advances. Would these men have imagined in their wildest dreams that today, a century after Flexner’s report, smallpox would be eradicated, hearts would be almost routinely transplantable, and most joints would be artificially replaceable?

Biomedicine’s impressive success, though, is ironically its obstinate ceiling: we’ve benefited by living longer, so are now old enough to develop the intractable diseases of aging. In other words, the entire picture of disease has qualitatively changed. Flexner’s scientific approach, wonderful though it once was, is decidedly less effective now.

Since the mid-twentieth century, disease changed in a couple of ways. First, increased life span favored the emergence of incurable disorders. The child whose life was saved by penicillin in 1945 is now seventy years old, and noticing that he or she—sorry to put it so bluntly—is beginning to fall apart.

Aging, along with its natural deterioration, is a permanent given. We’ll never, ever be able to abolish it. Any attempt reminds me of the apocryphal story about the Long Island Railroad, which, having determined that most fatalities in rail accidents occur in the last car of the train, removed the last car of every train. Doesn’t quite compute, does it? And neither does the myth that we can remain robust until we’re a hundred, have one last night of wild sex and then die peacefully in our sleep. No matter how long we live, we’ll age. As a matter of fact, most of life extension amounts to prolongation of oldness.

The complaints of the elderly aren’t due to disease as much as to plain old wearing out. Nothing—reflexes, memory, sphincter tone, the immune system, you name it—functions as well as it once did. There’s nothing to “cure” here. We can and should ameliorate symptoms as we can, but that’s the best we can do with our medicines.

The other major change in disease is that so much of it currently results from unhealthy living. I mentioned in an earlier blog that when I ask my colleagues what fraction of their patient clientele suffers from diseases brought about by noxious diet, inadequate exercise, toxin exposure, unskillful management of stress and relationships and the like, they all tell me “the majority.” Most of these disorders, including hypertension, atherosclerosis, emphysema, and type two diabetes, are as chronic as the disorders of aging—in other words, incurable.

We docs wind up, then, trying to address today’s incurable diseases with the cure attempts of the 1930s. It’s like trying to drive in a nail with a screwdriver. We apply increasingly complex, expensive, invasive and hazardous technologies with predictable futility.

Instead of pretending we’re exclusively scientists, we’d do better to temper science with therapeutic communication. That means helping those with pathogenic lifestyles understand the consequence of their choices and make healthy alterations.

It also means helping older patients to live with their diseases and become comfortable with the admittedly difficult notion that deterioration and death are a normal part of life.

That’s a spiritual, not scientific, challenge. Many years ago, I was sick with something that threatened imminent quadriplegia. Mighty scary. Friends supplied me with well-meant suggestions. My bedside table got piled high with books, healers’ business cards, diets, affirmations, and crystals. None of it meant much to me. But at last someone sent me a two-thousand-year-old Taoist poem. The aging poet bewailed organs failing, one after the other, a long lament, and concluded, “But on the other hand, what does that have to do with me?”