Taking Control of Your Health, a Q&A

Leslie Michelson’s terrific book on navigating the healthcare system, The Patient’s Playbook, is coming out in paperback later this month.

Navigating the realities of the system due to a family medical emergency at the time when the book was released, I found the advice and guidance Michelson offered so helpful that I requested a copy for everyone in my office. At that time, I wrote:

“Within every conversation about healthcare is also a conversation about our mortality. While none of us want to go through chemotherapy or surgery or chronic disease maintenance, one thing is true: if you don’t act as a defender of your health, who will? And with The Patient’s Playbook on your bookshelf, you will have a game plan for turning defense into offense in order to take control of your own healthcare.”

Handing a book on healthcare to someone, and saying “you’ll need this someday” is what you might call a tough sell. People don’t want to think about. But the conversation is important, and with the paperback coming out this month, we thought we’d revisit it.

I sent Leslie some questions, and he was kind enough to answer. This interview was originally posted on 800-CEO-READ’s In the Books site. Below is an abbreviated version of our conversation; please click over to read more of my Q&A with Leslie Michelson.

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Sally Haldorson: It seems as though in writing this book you’ve a strong commitment to insuring that people realize doctors are human, with as many presuppositions and influences and biases as any professional. In your introduction, you write in regards to the demands on primary care physicians: “No matter how charismatic, empathetic, and effective a doctor is, he or she cannot care for a human being in fifteen minutes.” Yikes! I think most of us can think back to our last doctor’s visit, whether 15 minutes or longer, and wonder just what was missed. How does planting this seed of doubt in the process (dictated by insurance companies) help empower patients? And do you think it is key that you aren’t an MD, so you can raise such questions?

Leslie Michelson: Physicians work very hard to do the best that they can in a world of constraints. They’re under enormous pressures to see more patients, more efficiently, while meeting enormous regulatory and reporting responsibilities. They’re very aware of their constraints, and part of my goal is to make sure that the patients who are the beneficiaries of their services have the same kind of knowledge of the constraints in which the doctors work, so they can better partner with the doctors.

My view is that our system doesn’t have the resources to provide everybody the quality of care that they aspire toward, so we should tap into this tremendous reservoir of 320 million Americans who have the energy and the ability to act as effective consumers, just as they do across the rest of the economy. So, it’s not so much sowing a seed of doubt. It’s informing patients so that they can use their intellect, their energy, their experience, and their intuition to team with their doctors to get better outcomes.

And you see that happening in other spheres. For example, at virtually every school in the country, parents are helping teachers by providing additional resources so they can spend more time teaching students. A lot of people are now do-it-yourself folks for home repairs, so they go to centers around the country, they get online videos, and they figure out how to do home repairs. In the medical profession, patients will get better outcomes if they become more engaged consumers.

SH: You advise that “[f]orging a strong partnership with a caring and committed primary care physician is one of the most important first steps you can take in protecting your health.” Isn’t that easier said, than done? Many of us are forced to see nurse practitioners or physician’s assistants instead of ever getting to see a doctor. I know that my son hasn’t seen his primary neurologist for years now, and while we very much like his physician’s assistant, it certainly has done nothing to strengthen our relationship with his neurologist, and if something traumatic were to happen, that doctor wouldn’t know, hands on, much about my son’s past few years. How do we go about asserting our need for an attention-giving PCP when the system seems to be moving further and further away from enabling such a relationship?

LM: I am an enormous believer in the value of advanced practice clinicians. Nurses, physician assistants, nurse practitioners—they all have high levels of clinical training. They are under-utilized and can be extremely important participants in a properly configured healthcare delivery system in the future. If you’re generally well, and you’re regularly seeing a capable advanced practice clinician, you can get excellent care, because those professionals are trained to identify significant clinical issues and refer them to physicians and specialists.

Our experience has actually been very positive with them. My experience with other similar professionals is also very also positive. Every major law firm in the country has a cadre of talented paralegals. There is no dentist’s office that functions without effective dental hygienists. I’m a big fan of it because I’ve seen it really work. For example, in my personal experience, as I related in The Patient’s Playbook, I had a surgery by the Chairman of Surgery at Yale New Haven, Dr. Rob Udelsman, who had, at every step of the way, Patricia Donovan, RN, who has been his right hand in doing these things for 15 or 20 years. They are a team working together; that enables them together to provide people with the highest quality care. I had a very complex surgery, and although the surgery was done by Dr. Udelsman, the entire experience could not have been as good without Patricia Donovan being at his side. I don’t think that moves us away from having an enduring relationship with a clinician; I think it moves us forward.

SH: My husband, who was diagnosed with leukemia mid-summer last year, was mis-diagnosed with three different issues over 3 months, before taking himself to the ER where he was admitted to the ICU and it was immediately apparent that he had an astronomical white blood cell count. A friend, upon hearing this, said that it’s not unusual for that to happen because doctors don’t look for cancer in an otherwise healthy, moderately young person. But in some cases, it seems, that the new “Google-fication” of self-diagnosing is bringing about a public of paranoids, so if my husband had gone into the doctor asking them to check for cancer because he was feeling rundown, would they have done so? He certainly felt like he was taking charge of his illness by making appointments with his neighborhood clinic, but he never thought it was cancer, so he didn’t push for that diagnosis. Shouldn’t we be able to trust in the expertise of our medical providers to see what we can’t see?

LM: First I have to say, I’m so sorry that your husband had to deal with a misdiagnosis. Sadly, we know that misdiagnoses, delayed diagnoses, incomplete diagnoses—these are major challenges across the healthcare delivery system. The studies that have looked at this problem find that between 40,000 and 80,000 people a year lose their lives because of diagnostic errors. So, I have to say, I’m really so sorry that this happened to your husband. As we discuss this though, what I’m concerned about is the appointments at the neighborhood clinic.

There are two ways to reduce the probability of getting a misdiagnosis. One is to trust your instincts. We all are in touch with our bodies, and we know when something seems to be more significantly wrong than it’s ever been before. Maybe it’s a level of fatigue that you haven’t experienced before, an abdominal pain that maybe you’ve experienced before but is stronger now and has been going on longer. Or headaches that are happening more frequently, and have greater pain, in ways you haven’t felt before. If you have those things, what you need to do is trust your instincts, listen to your body, and take action on it. If the physicians you’re seeing are telling you, “It’s all between your ears, there’s nothing to worry about,” or “Your gut is wrong,”—then go to additional physicians in a timely fashion until you get a diagnosis that sounds right to you.

The second thing to be discussed here is the notion of a neighborhood clinic. Particularly when it comes to primary care, I believe very deeply that you need to have a strong and enduring relationship with an individual physician. That person can see you over time and have the benefit of observing changes in who you are and how you’re functioning. They’ll be looking at you, and they’ll say, “You were here 12 months ago, and it looks to me like you’ve put on some weight,” or “you look particularly pale right now,” or “you’re generally energetic, and you’re looking down and depressed, what’s going on? Talk to me.” Those kinds of observations about who you are holistically can make a difference. They can enable a primary care physician to exercise his or her clinical intuition and identify potentially serious issues earlier.

If in fact your husband had such highly elevated white blood cell counts, he probably had some symptoms. If he had a strong and enduring relationship with a primary care physician, that physician likely would have recognized those symptoms and/or those lab results as being aberrant, and she or he would have perhaps ordered additional blood work, and made the referral to a hematologist, which is what the first person who saw your husband should have done.

You should believe in the capability and the competence of your physicians, but if you don’t—if you have reservations about them—you need to change physicians. But, even if you believe in your physicians, you need to respect your perceptions of your health and your intuition. So, if you’re feeling off, even in a vague way, and the physicians that you’re seeing are incapable of giving you a diagnosis or developing a treatment that addresses it, I suggest you take yourself to a higher level of expertise. Get in touch with an academic medical center, figure out which therapeutic area might be most appropriate, and make an appointment. Bring your medical records and have someone with fresh eyes look at what’s going on.

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ABOUT THE AUTHOR

Leslie D. Michelson is the founder, chairman and CEO of Private Health Management, a unique patient-focused company dedicated to helping individuals and corporate clients obtain exceptional medical care. You can learn more about Leslie, The Patient’s Playbook, and “The No-Mistake Zone with Leslie Michelson” podcast at www.patientsplaybook.com.

Last Night

 

The Mother Bed

Last night I put my arms around him as he lay in bed, eyes on his tablet, knees pulled up to his chest. Such long legs, getting thicker by the day, but I can still see his baby self in his skin. I’ve given him his seizure medications; I’ve washed his GTube insertion, applied Desitin, a square of gauze. I know I should tend it twice a day, but once is all the time I’ve got. I’ve dosed him with Melatonin in hopes he sleeps the night away, no tossing and turning, no cries in the night, no hours of wakefulness that have come in swaths since he was an infant.

We still share a bed even though he is eleven. You may find that inappropriate. Certainly some people do. Sure, he hasn’t had a seizure in a year and a half, thanks to the nutrition via his GTube we assume, so maybe he’d be safe on his own, but how can I know? Always our bedsharing was a necessity born out of fear. His seizures most often happened as he moved between levels of sleep. They were silent and too long, not violent and quick as most people imagine, as is often shown on TV. Instead, he just grew stiff, unresponsive. While I’d have loved to believe some kind of inner instinct would rouse me to some unusual silence across a hall, real life doesn’t often work that way. Otherwise there would be no death by middle-of-the-night fire, or while-they-slept burglaries, or children who go missing as though taken in the rapture.

What about your husband, your marriage, people ask me. And maybe I can’t explain that this is not a zero-sum game: both of us benefit from our son staying alive. The fear of SUDEP, which sounds like a cold medicine, but is how people with epilepsy sometimes die, still lingers. I have always been afraid that the one time I look away, he will suddenly disappear. Not his body, but his life. Evaporation. Ether. One time he had a seizure and I was alone with him and his lips turned blue and he stopped moving entirely, and that’s a thing that happened, and reason is no match for memory.

So bedsharing became the default, but is now a necessity because I fear the exhaustion that switching him to his own bed will bring on. When he wakes up at night, he wants a comforting hand on his back. Or a change of clothes if he pees through his night-time pull-up. Or for help finding his comfort blanket. I have grown better at falling back asleep after such disruptions, but rarely do I get a full night. When we begin to train him toward some additional independence, surely I will get even less. You may think that’s selfish, but eleven years is a long time to be tired, and sanity is a commodity I’ve learned to hoard.

I told someone today that I’d never had a driving need to be a mother, and the decision to have a baby had been more strategy than longing. On the verge of thirty, in a happy marriage with a man who deserved to be a father, I asked myself this: on my death bed, what I would regret more, not having children or having them? The answer seemed clear at the time, and so we did. (Before you ask me, we stopped at one, because he has been enough work and worry for two.)

When I hear stories of women who suffer due to childlessness, I can’t find a way to put myself in their shoes. When I hear women celebrate motherhood, they are speaking a language that sounds like my own, but the meaning gets lost in the distance between their mouths and my ear. I have a friend who has prosopagnosia, the inability to recognize faces, and that seems as good a metaphor here as any. It’s like I recognize the individual features of our common experience, but I can’t put them together to form a picture that is identifiable to me.

Simply, I don’t know what it’s like to be purely glad to have had a child. I sound cold, I know. But I can’t claim joy at having brought a child into the world who will struggle as mine struggles. That would require me to go to great length of Pollyana-ish denial, and I have far too much guilt for that. Yes, I am a better person. More compassionate, more selfless, more multi-faceted. And yes, he perfect in his imperfections. And I do often wonder when thinking about belonging, about helping him find a place in the world, if our culture is more the problem than his disabilities are. Sometimes I try to challenge people in rethinking the way they think about seizures, about special needs, that euphemism I have grown to abhor. But I would trade all of those personal gains, all of my drop-in-the-bucket activism, for having given life to a child who will be able to talk, to read, to shop, to drive, to work.

You see, I am ambivalent about being a mother, and as my child grows bigger but doesn’t truly age, I expect my feelings to remain complex on the matter. But after years of chastising myself, I now know this: it is possible to hold these two truths in my heart at the same time. There is nothing I love more than this child who I would never have decided to birth had he not appeared to me and bade me love him, like a stray at the door whose scars and ferocity are a lesson, not a reason to send it back in the rain.

I love my son most when we are quiet and I hold him in my arms and my heart, and the ache of loving him burns through me like I’ve downed a tequila shot and eaten the whole lime both. That’s not very romantic, but the visceral rarely is. Motherhood rarely is. For me, it is still poop and drool and too-sharp nails and sometimes bites and lots of embarrassment over his public behavior, and always, always, tiredness. My pride cringes as I tell you we still share the same bed. But I would take a hundred more years of all of those struggles, ironically to outlive my child whom I have always feared would die, because I have never been so afraid to leave someone I have always be destined leave.

 

Big Hat Mama

Perhaps another mother, pulls out a storage box of her child’s preschool art and looks with affection at the figure-paint swirls, the hand-shaped turkey, and the foot shaped chick, the stick-figure drawings (obviously an aide helped guide his hand on that one) and tissue-paper leaf collage, and the last-remaining kidney bean or pasta shell glued to construction paper, and reminisces about the years that have flown by. But I see no difference between the art my son made in kindergarten and that which he makes now, at 10, much like there is little difference in him, his abilities.

Except that’s not true–at least back then, he made a novice’s noble effort at the figure-paint swirls, the hand-shaped turkey, and the foot-shaped chick, the stick-figure and tissue-paper leaf collage, and the last-remaining kidney bean or pasta shell glued to construction paper. Then, art was new, and not just one more thing that is hard to do. Some might say he regressed; I think he’s bored of his own limits, like I’m so often bored by them too. Now I’m lucky to get a markered line from top to bottom of a blank notesheet pad.

Though I do have a scribble drawing hung on my refrigerator, like any other mother would do. White paper with indecipherable swirls, a free-form Spyrograph. On it, my son’s teacher translated the circles. I would have never been able to tell, but she drew arrows, labeled them: Big. Hat. Mama. She says he told her what he had drawn, and who am I to argue. Though I know my son, and I know, sometimes, the words he says are not the words that are in his head. But it’s the only portrait I have from his hand, so I hung it up because it means that he was thinking of me when he was away, at school, making art, no matter his level. And maybe nothing else matters to me or to any other mother.