Doctors, Patients and Health Care Reform

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There’s been a lot of talk about the economic stimulus plan, comparative effectiveness and health care reform lately. And with good reason—health care reform is integral for our physical as well as our fiscal health.

But in today’s Well column, Tara Parker-Pope raises an important point: in all this talk of methods and outcomes, where is the doctor-patient relationship?

The column touches on a core critique of our medical system, one that right now is better equipped for acute care then prevention and wellness. Specifically, it explores our propensity to want prescriptions that might be unnecessary, or to favor newer or more expensive treatments or procedures when older or less expensive ones might suffice:

“Whether it’s invasive back surgery, medical scans or expensive drugs, patients and doctors alike often refuse to believe that costly treatments aren’t worth it.”

What I find interesting about this column is that it doesn’t posit the blame on just the patients who ask for drugs or the doctors who write the scripts—rather, it points towards the need for both parties to work together to achieve the best outcome.

I’ve written a lot about the doctor-patient relationship, and while I have much more to say about this particular manifestation, I can’t help but feel so much remains true—in the end, mutual trust and respect is fundamental to a healthy relationship and thus a healthier outcome.

The medical education our providers have and the experiential wisdom we have about our own bodies are not at odds with each other. If we combine them and ask the right questions of each other, hopefully we can filter out the unnecessary treatments and tests.

* * *
Another great edition of Grand Rounds is up at Health Business Blog. Check it out!

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The Reality of Rare Diseases: The Official Rare Disease Day Post

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I have a rare or “orphan” disease, one that affects fewer than 200,000 patients. If you’re new, mine is a genetic respiratory condition called primary ciliary dyskinesia, or PCD. Cilia, the tiny structures that line the respiratory tract and clear out debris, do not work properly, leading to infections, decreased oxygenation, and long-term lung damage. There are only 1,000 documented cases of PCD but up to 25,00 Americans are thought to have it.

There are more than 700,000 rare diseases in the United States, and as I mentioned before, the 25 million Americans who live with them largely fly under the radar—disease-specific foundations work tirelessly to raise money and awareness, but there are few trendy wristbands, colored ribbons, or designated disease awareness months in our world.

The built-in community other conditions sometimes have is harder to come by; I’ve met exactly one patient with PCD in real life and though we said hello we could not stand too close and really speak to each other because of the communicable diseases we could spread to one another.

That’s why Rare Disease Day, sponsored here in the US by NORD, a nonprofit collaborative of voluntary health organizations that works for the prevention, treatment and cure of rare diseases through advocacy, research and education, is so important. I can vouch for how significant a role research has in the diagnostic trajectory of a rare disease patient—only with advanced technology could my new specialist hazard a look at the cilia causing so many problems and start treating me appropriately.

So the goal of this global day of recognition is just that—to raise awareness of rare diseases as a public health issue. For so many reasons it is a public health issue—we need to prevent disease progression, find more effective treatments, and keep rare disease patients as productive and healthy as possible.

But awareness goes much deeper than that.

For many patients, the first hurdle is awareness within the medical community itself. Like many PCD patients, it took years (or, um, my entire lifetime) for me to get a correct diagnosis, years where irreversible damage to my lungs occurred while I labored under treatments for the wrong condition. My father, who has a rare connective tissue disease, was misdiagnosed for over seven years. In the end, it caused him a kidney, multiple broken bones, and a correctly functioning pancreas.

Collateral damage, I suppose.

With more knowledge and technology at our disposal, hopefully rare disease patients across the disease spectrum will get more timely diagnoses and can start available treatment sooner.

Diagnosis isn’t the only hurdle—consider a patient with Ehlers-Danlos Syndrome I profiled in Life Disrupted, who was labeled a drug seeker by nurses in her ER because of her frequent (necessary) trips for dislocations. When I roll into the emergency room in respiratory distress and have to both spell and define PCD to the triage nurses and residents, though, I know I’m in trouble. It’s understandable; specialists are the ones who see these diseases regularly, not emergency room residents, but with communication and preparation—I bring a printout of my medical history and medications with me—it is a situation that is improving.

And then, of course, there is the public misconception. Even when I am infection-free I have a consistent cough, a loud, abrasive cough, and an audible wheeze. “Are you sick?” strangers will ask, not-so-discreetly stepping away from me. “No, I’m just me being me,” is my default retort. Convincing the person standing next to me on the train that I am not contagious is not easy, but I expect the whispers and queries in public, just like I expect the blank stares of incomprehension. If I say I have a rare disease or I have PCD, I just get a bigger blank stare.

Clearly everyone living with a chronic condition has individual challenges and struggles. Having something that is really rare just adds another layer of complication—and sometimes, that complication can have serious consequences. I think we’ve all heard enough “You have what?” and “I’ve never heard of that!” to last a lifetime.

With advanced technology and better diagnostic tools, the rare disease population is growing. Patients with serious childhood illnesses are living longer into adulthood and having their own children. Others are finally getting the right diagnoses and enrolling in clinical trials or connecting with other patients via online groups and social-networking sites. There is momentum, and with momentum, there is increased understanding.

Let’s hope so, anyway.

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In Preparation: Rare Disease Day

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Those of us who have a rare disease often fly under the radar—there are few trendy wristbands, colored ribbons, or designated awareness months for our diseases. This is why I am excited that February 28, 2009 will be the second annual worldwide Rare Disease Day.

Sponsored by the National Organization for Rare Disorders (NORD) in the United States and more than 200 other partners, the purpose of Rare Disease Day is to:

“Focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.”

(In short, to raise awareness of rare diseases as a public health issue.)

I often talk about how the universals of living with chronic illness outweigh the differences in diagnoses and symptoms, and I truly believe that. Yet within that umbrella of chronic illness, many of us living with rare diseases face our own unique set of circumstances.

As I prepare an official post for Rare Disease Day later this week, please let me know if you live with a rare disease and have any thoughts or comments you’d like me to include.

A few other odds and ends:

I was captivated by the NYT Sunday magazine article “What’s Wrong With Summer Stiers?” that focused on undiagnosed illness—this isn’t too surprising given what I consider the close connection between rare diseases and undiagnosed diseases. Be sure to click on over.

Speaking of links, I couldn’t resist the stream of URLs and commentary any longer—that’s right, I’m now officially on Twitter (achronicdose) if you’d like to follow me there.

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Book Review–Everything Changes: The Insider’s Guide to Cancer In Your 20s and 30s

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Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness.

So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer In Your 20s and 30s, I was excited to see someone else focusing in on the younger adult population. And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted emerged.

“But you’re too young for this!”

How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.

One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.

Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.

On dating, one young woman said, “When I was first diagnosed, I wondered if guys would be disgusted knowing there’s a tumor inside of me. I felt tainted. Of course, I didn’t want a guy to go away when he found out I had cancer, but I felt like it would be natural if he did. Who signs up for that?” (47)

Through these patients, we see examples of people who remained despite what they did not sign up for, and relationships that could not stand the strain. Rosenthal’s own ultimate love story gives solid context—it inspires yet does not overwhelm.

On the idea of surviving, a male patient said, “Once you’ve had cancer, people like to think of you as a superhero, like Lance Armstrong, but I’m no Lance Armstrong. I don’t go for that image. Cancer recovery has become so romanticized, as if this one event suddenly made me a whole different person. I don’t think that’s the case.”

Of course, these are just snippets of the many conversations about family, marriage, death, health care, and many other topics that fill the book. Each story is as compelling as it is unique, yet Rosenthal’s voice carries the book. Upon receiving her diagnosis of thyroid cancer she writes,

“My first thought was the opposite of ‘Why me?’ Why not me? Why a fifty-five-year-old truck driver, a nine-year-old in a pediatric unit, or my seventy-seven-year-old grandmother? Of course, me. Why the hell not me? This life is breakable, and I’m no more immune to pain and suffering than the next person.” (3)

Perhaps it is this attitude that I appreciate the most, one that is devoid of self-pity, one that seeks to bring truth to the reality of so many patients for whom the word “survivor” is a loaded term, who do not couch suffering or pain or fear in palatable ways when sometimes they aren’t meant to be palatable.

That isn’t to say the stories aren’t encouraging, insightful, or ultimately inspiring—they are, because they are real. They are gritty, honest, often funny, and more than anything else, they represent the individuality of the patient experience. This is something Rosenthal is keenly aware of, and her awareness—respect, really—of this individuality allows the diverse reactions and adaptations to living with cancer to co-exist so well.

Despite the differences in diseases and outcomes, I found so many interesting parallels between these patients the ones I know from writing about and living with chronic illness. Of course, I’ll say the obvious: if you’re a young adult cancer patient or know someone who is, you will benefit from this book. But if you or someone you know is trying to hang on to the identity you had before life-changing illness entered the picture, you too will find much of this material resonates.

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Book Review–Everything Changes: The Insider’s Guide to Cancer In Your 20’s and 30’s

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Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness.

So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer In Your 20’s and 30’s, I was excited to see someone else focusing in on the younger adult population…And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted emerged.

“But you’re too young for this!”

How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.

One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.

Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.

On dating, one young woman said, “When I was first diagnosed, I wondered if guys would be disgusted knowing there’s a tumor inside of me. I felt tainted. Of course, I didn’t want a guy to go away when he found out I had cancer, but I felt like it would be natural if he did. Who signs up for that?” (47)

Through these patients, we see examples of people who remained despite what they did not sign up for, and relationships that could not stand the strain. Rosenthal’s own ultimate love story gives solid context—it inspires yet does not overwhelm.

On the idea of surviving, a male patient said, “Once you’ve had cancer, people like to think of you as a superhero, like Lance Armstrong, but I’m no Lance Armstrong. I don’t go for that image. Cancer recovery has become so romanticized, as if this one event suddenly made me a whole different person. I don’t think that’s the case.” (94)

Of course, these are just snippets of the many conversations about family, marriage, death, health care, and other topics that fill the book. Each story is as compelling as it is unique, yet Rosenthal’s voice carries the book. Upon receiving her diagnosis of thyroid cancer she writes,

“My first thought was the opposite of ‘Why me?’ Why not me? Why a fifty-five-year-old truck driver, a nine-year-old in a pediatric unit, or my seventy-seven-year-old grandmother? Of course, me. Why the hell not me? This life is breakable, and I’m no more immune to pain and suffering than the next person.” (3)

Perhaps it is this attitude that I appreciate the most, one that is devoid of self-pity, one that seeks to bring truth to the reality of so many patients for whom the word “survivor” is a loaded term, who do not couch suffering or pain or fear in palatable ways when sometimes they aren’t meant to be palatable.

That isn’t to say the stories aren’t encouraging, insightful, or ultimately inspiring—they are, because they are real. They are gritty, honest, often funny, and more than anything else, they represent the individuality of the patient experience. This is something Rosenthal is keenly aware of, and her awareness—respect, really—of this individuality allows the diverse reactions and adaptations to living with cancer to co-exist so well.

Despite the differences in diseases and outcomes, I found so many interesting parallels between these patients the ones I know from writing about and living with chronic illness. If you’re a young adult cancer patient or know someone who is, you will really benefit from this book and all its resources. More than that, though, the book puts out there a central truth that not enough people know:

There’s no such thing as “too young” for cancer.

Among the many universals in this book, I think many of my readers can relate to that sentiment all too well.

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On Work and Chronic Illness

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It’s been a tough blogging spell lately. Not for lack of topics—I have a running Stickie note of links and ideas on my desktop—but more a lack of focus or creativity. Sometimes being pulled in many different directions and having many different things to talk about can have the exact opposite effect of what I’d like as a writer.

In fact, I’ve started and stopped at least three different posts since Tuesday. And then a link to this article in February’s More magazine appeared in my inbox, and suddenly I knew what I needed to write about.

The article is called “Ill in Day’s Work” and, as you might expect, it explores the challenges of chronic illness in the workplace. (It’s written by Donna Jackson Nakazawa, author of the excellent book The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance–and the Cutting-Edge Science that Promises Hope).

The article itself is informative and encouraging, and covers many of the “macro” issues of employment and chronic illness—disclosure, financial compromises, discrimination, etc. Many of these issues are ones I discussed with my colleague Rosalind Joffe for Life Disrupted, and though this article focuses on women a bit older, the universals resonate compellingly.

But those big-picture items are not what I want to discuss today. I’ve done a lot of compromising and negotiating and finagling already, and for now I think I’ve patched together a career path that works for my skill set, my long-term goals, and my health.

However.

It’s the everyday, smaller stuff that resonates with me these days. For some context, I’ve been really quite sick since before Christmas, with the exception of a few days in the middle of January. Sicker than usual, sicker than I have the patience or tolerance for, sick enough that I was on nebs hourly for awhile. (I haven’t written about it because there really isn’t a point; this is winter for me and there’s not much interesting to say about it.)

This winter’s malaise has made staying engaged in my work difficult. The issue of physically being able to get to work is one thing. Luckily some of this happened over winter break; luckily no one minded when I had to cancel class(which I never do); luckily my students are patient with my weeks-long constant coughing and my lack of voice; luckily I work from home a couple of days a week; luckily my husband meets me to help me get home when I cannot make it back on my own.

Because I am finally starting to feel better, I can see the toll this semester has taken. I have not seen my friends in almost two months. I’ve missed all holidays and most family events.

More than that, it’s like I’ve been working in a tunnel, where I am so focused on getting through the day and making it home that I don’t have the mental or physical energy to be as productive as I’d like. I worry I’m not as “on” as I’d like to be in class, I worry I’m not as clear-headed when I get home and try to finish articles on deadline or finish research for a big project. The article mentions lost networking opportunities after work as a result of chronic illness, and I found myself nodding. Lately I haven’t even wanted to talk on the phone at night, never mind make it to functions.

However. (Again.)

I’m beginning to emerge from the hibernation, and so I’m beginning to see beyond the tunnel vision of merely getting through the day. This mish-mash of several different jobs, seven-day work weeks, and unconventional hours has been carefully thought out and planned with the future in mind, and while some winter days are darker than others, most of the time it works for me.

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Nurses and Patients

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I’ve written about the doctor-patient relationship often. Whether it’s the need for communication and mutual respect or why primary care is important for patients with chronic illness, there’s much to say about this incredibly important relationship.

But when I read “Can Nurses Care Too Much?” in yesterday’s NYT, it occurred to me that I haven’t written as much about this other incredibly important relationship: nurse-patient.

In my personal life, I know a lot of nurses, and know how invested they are in their jobs and their patients. In my professional life, I often have nursing students in class and am always impressed with how engaged they are in what they do and how animated they become when patient care is discussed.

But it is in my patient life where I really see these qualities firsthand. For long stretches in my life I’ve spent several weeks a year as an inpatient, and from all those trips I can say this:

Nurses are the ones who can make (or break) a hospital stay. They are the ones who make sure my nebulizer medicines arrive on time, who jump in to give me chest physiotherapy if the physical therapist on the floor is tied up with someone else.

They are the ones whose conversations keep me distracted or encouraged, depending on what I need, and the ones who know that sometimes, visiting hours just don’t apply. In college, they calmed down my worried parents when I was an inpatient several states away, and they know that for someone who types all day long, getting an IV on the top of my hand is less than ideal.

Sure, I’ve had some negative experiences, just like I’ve had some doctor’s appointments I’d rather not repeat again. But the vivid memories, the faces and names and actions that stay fresh in mind, belong to the many nurses who have made serious medical situations a lot more tolerable.

Can nurses care too much?

That’s a pretty difficult question to answer because giving care can be such an emotional experience. (Be sure to read the NYT article, because the nurse-writer covers this poignantly.)

But what I do know is that when I’m wheeled onto a floor and my nurse comes in to greet me, or when I’m visiting a loved one and I see how compassionately and confidently their nurses speak with them, I am really glad that they do care.

***
In unrelated news, I just found out this week that Library Journal named Life Disrupted one of 2008’s Best Consumer Health Books. Check out the full list for some great titles.

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Nurses and Patients

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I’ve written about the doctor-patient relationship often. Whether it’s the need for communication and mutual respect or why primary care is important for patients with chronic illness, there’s much to say about this incredibly important relationship.

But when I read “Can Nurses Care Too Much?” in yesterday’s NYT, it occurred to me that I haven’t written as much about this other incredibly important relationship: nurse-patient.

In my personal life, I know a lot of nurses, and know how invested they are in their jobs and their patients. In my professional life, I often have nursing students in class and am always impressed with how engaged they are in what they do and how animated they become when patient care is discussed.

But it is in my patient life where I really see these qualities firsthand. For long stretches in my life I’ve spent several weeks a year as an inpatient, and from all those trips I can say this:

Nurses are the ones who can make (or break) a hospital stay. They are the ones who make sure my nebulizer medicines arrive on time, who jump in to give me chest physiotherapy if the physical therapist on the floor is tied up with someone else.

They are the ones whose conversations keep me distracted or encouraged, depending on what I need, and the ones who know that sometimes, visiting hours just don’t apply. In college, they calmed down my worried parents when I was an inpatient several states away, and they know that for someone who types all day long, getting an IV on the top of my hand is less than ideal.

Sure, I’ve had some negative experiences, just like I’ve had some doctor’s appointments I’d rather not repeat again. But the vivid memories, the faces and names and actions that stay fresh in mind, belong to the many nurses who have made serious medical situations a lot more tolerable.

Can nurses care too much?

That’s a pretty difficult question to answer because giving care can be such an emotional experience. (Be sure to read the NYT article, because the nurse-writer covers this poignantly.)

But what I do know is that when I’m wheeled onto a floor and my nurse comes in to greet me, or when I’m visiting a loved one and I see how compassionately and confidently their nurses speak with them, I am really glad that they do care.

***
In unrelated news, I just found out this week that Library Journal named Life Disrupted one of 2008’s Best Consumer Health Books. Check out the full list for some great titles.

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Health Care Reform: Is the Timing Right?

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A few months ago, I wrote about the economic impact of a health care system run amok, calling it the “other crisis.” When we’re too sick to participate in the workforce, when our employers can’t keep up with skyrocketing costs, when preventable diseases go unchecked and result in costly complications, we all pay the price.

Now, with the recession dominating headlines and the widely circulated fear that health care reform will take a backseat to the economy, it’s easy to dismiss the urgency for significant reform.

Yet I’d argue the stakes are greater than ever, and that now is the time—economic health is inextricably linked to our ability to access and maintain appropriate medical care. I believe this in terms of existing chronic illness, of course, but that’s just one part of it.

Why do I write this today? Because today was the first in a year-long series of “Summit Conversations” sponsored by the America’s Agenda Health Care Education Fund. These consensus-building talks bring together a diverse group of entities—politicians, policy-makers, labor unions, big Pharma. Very rarely do we see these groups united under a common goal.

The January 28th Summit talk was held at the University of Miami and hosted by President Donna Shalala. In a recent Miami Herald op-ed, Dr. Shalala wrote,

“The Summit Conversations commence at an opportune time. Recent polls show three-quarters of Americans expect major healthcare reform legislation to be passed in President Barack Obama’s first term. Democratic leaders in Congress are reaching across the aisle for bipartisan support, and there are promising responses from business and labor.”

Let’s hope she is right, that this is the right time for the right groups of people to come together, build consensus about reform, and turn that consensus into change.

In so many ways, we can’t afford for that not to happen.

***
In other news, be sure to check out some of the medical blogosphere’s best this week: a fantastic Grand Rounds is up at ChronicBabe, and this month’s pain-blog carnival is up at How To Cope With Pain.

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Can Versus Should, Take 2

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(Second in a series of occasional posts on pregnancy, children, and chronic illness.)

It was wonderful to hear from so many of you at different stages of decision-making, pregnancy, and parenthood. The feedback from my recent post on pregnancy and chronic illness unraveled so many interesting angles, from questions of inheritability to adoption to child care, and I’m interested in pursuing all of these in more depth.

The most compelling and complicated question remains, of course, can you versus should you. However, the theme I’d like to explore is the sentiment that “it takes a village” that my friend mentioned in a comment. I’m partly drawn to this because I think it’s emblematic of living with chronic illness in general, and also because I’ve been thinking a lot about health care reform and chronic illness.

After all, anyone who lives with chronic illness already knows the juggling it requires, the multiple roles the people who love us take on for us, and the complications it adds to life decisions.

Pregnancy, infertility, adoption, and parenting are extraordinarily challenging and life-changing no matter your health status; factor in the demands of chronic illness and my immediate thought is yes, it really does take a village. If what makes effective health care is a hot political topic right now, than carving out a niche for the many women living with chronic illness who are pregnant or want to be parents is appropriate.

There are both medical and personal implications of this notion of a village. If there’s anything I’ve learned from twenty-eight years of being a patient, it’s that when different doctors and specialists work together, the patient benefits. I love that my (new!) primary care doc, my lung doc, and my other specialists know each other and confer with each other about my care.

Many chronically ill women have high-risk or medically intensive pregnancies, and just like women in high-risk situations who did not have additional existing chronic illnesses, their needs demand close monitoring and thorough, attentive care from their obstetricians. But for many women with chronic illness, the best situation is one in which all of the doctors who make up their health care team work with each other—whether it’s discussing risks of certain medications on fetal development or the best way to handle a disease exacerbation in late pregnancy, this communication is essential.

But of course this medical village is only the beginning. Issues of infertility and high-risk pregnancies aside, what I’ve heard from many of you, and what corresponds with what I discovered when talking with patients for my book, is that caring for the child once he or she is in your life is an immense challenge. (Notice I didn’t say once you’ve given birth, because no matter how you decide to become a family, you’re still trying to balance the same problems.)

“How can I care for a baby on the days when I can barely take care of myself?”

I’ve heard that question posed many women with many different types of chronic illness. Some are incapacitated by pain, other battle life-threatening exacerbations, but the universal question remains the same. And the answer, of course, is that you can’t do it alone.

So who would make up your village? Would spouses, relatives, and good friends be able to bridge the gap for you? If you needed regular help with child care, could you afford it? If you need to maintain some sort of income after maternity leave, does your job have any flexibility?

More simply, do you have a plan in place so that you can be the parent you want to be without completely sacrificing your own health?

It isn’t easy, and in an ideal world the cost of chronic illness and health insurance and child care and all those variables we have to consider would be more reasonable. In an ideal world, we could count on our bodies to be somewhat more reliable, and we wouldn’t have to choose between the immediacy of the present and the potential long-term outcome so often.

But we’re not there, we’re here. So whether it’s assembling a medical team that works for us or figuring out a back-up plan for those days when our bodies fail us before it happens, building a village that is strong and restorative is the best thing we can do.

And in the end, aren’t so many of us already living proof that yes, it does take a village to thrive?

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