Sunday, March 28, 2010

Where's the Patient in Health Care Reform?

I’ll admit, it was a bit conspicuous. After over a year of posts comparing facts in health reform, looking at private versus public insurance plans, even meeting with President Bill Clinton to discuss health care, the week the monumental new legislation passes, I am silent.

I know, right?

Here’s the thing. I wanted to comment, to turn on the analytical part of my brain that has logged into press calls and covered health care summits.

However, I was too busy being a patient to attend to this blog. More specifically, I watched late-night cable coverage of the vote from my hospital bed, where hours of stacked medications, oxygen, and all sorts of pwerful drugs tried to stabilize me. I managed one paltry Tweet about it, but my IV beeped as soon as I moved my arm to type and the whole not-getting-enough-air thing made me foggy.

When you’re working so hard for breath, there is little room for anything else.

In a strange way, perhaps that is somewhat fitting. Over the past few weeks, it seems like the rhetoric, the scare tactics, the fighting over funding and abortion and so many other flash points have totally taken the focus away from the one group at the heart of this debate: patients.

“The only people who are happy with their health care are either rich or healthy,” I joked to a relative, one who is vehemently opposed to health care reform (or, at least this version of it). But there is truth there-most health plans are designed for healthy people who rarely need to use them, who do not have to wage appeals and write letters and make so many important life decisions based mainly on the availability of those plans. If health insurance is something you only have to think about when it’s time for open enrollment, then it is a lot easier to shove it off as someone else’s problem.

If you’re fortunate enough to have chronic illness and can afford the platinum plans where you do not worry about annual caps or having treatments denied then you do not live with the same sense of precariousness and vulnerability millions of Americans do.

Let me be clear about this: I have reasonably good insurance and have always been fortunate to have reasonably good insurance. I fight my battles regarding medical necessity (complicated by having rare diseases, for sure) and I still pay a lot of money out of pocket but I cannot complain. However, whether I’m feeling okay or lying in a hospital bed, I work seven days a week in order to get those benefits-a full-time job, part-time jobs, consulting work, and book-writing. I have made huge, career-altering decisions based primarily on health benefits. Physically, emotionally, mentally, I have made compromises and adjustments in the name of health insurance. A lapse in coverage has always been a catastrophic thought for me.

For me, simply being born tagged me with the label of “pre-existing condition” and for three decades I have lived underneath the bureaucratic burden of that title. Knowing that is one fear patients with existing chronic illness don’t have to live with anymore is huge. Knowing that down the line, I could have more flexibility in terms of choosing career options based on proclivity and preference and not benefits is equally huge.

I find so much of the drama around this bill ironic. Some frame it as a right to life issue but because I excel at being the devil’s advocate, what about the lives of millions of Americans that will end too quickly because of lack of appropriate care? Some focus solely on the economic issues around the legislation, but those of us who’ve been paying attention to chronic disease long before it became the hot-button issue for discordance and grandstanding also know that we already spend 75 cents out of every health care dollar on chronic illness and that prevention is much less expensive than the complicated interventions that are standard operating procedure right now.

But honestly? Right now I can’t even start unraveling all these threads.

Intellectually I understand the concerns of, say, small business owners or entrepreneurs worried about how the bill is funded. I understand people who fear the government may not be up to the task of administering such a broad program. I understand this legislation is far from perfect, and as we've seen here in Massachusetts, I know that when you implement a sweeping change you need to prepare for the consequences, both intended and unintended.

But all of the rhetoric, analysis, or debate in the world does not change the fact that for many, many patients out there, the debate is anything but rhetorical and the consequences extreme.

I’d done everything right to manage my conditions but still ended up in the hospital. I can only imagine the bill for the diagnostic tests, the x-rays, the IV meds, the nebulizers, the pills, etc. But what is truly unimaginable is what would happen if I had to pay for that hospital stay completely out of pocket.

My house, my health, my family, everything I’ve worked so hard to maintain, would all be threatened.

As I lay there, covered in EKG leads and medical tape and beeping from multiple monitors, the ticker tape reports of the "Baby-killer" outburst and protests flickered across the screen. I adjusted my oxygen and raised the volume a little bit louder as our leaders began to speak.

It is easy to be reactionary and inflammatory when you have the luxury of health, I thought. When you’re consumed with survival mode, suddenly things are a lot more simplified.

As much as I don’t want to be defined by this role, I am a patient. And what better place to be reminded of our vulnerability in this system than in the hospital?

I am one of the lucky ones. I know when the bill arrives or I need to schedule another follow-up appointment with a specialist that these events will be insignificant.

But shouldn’t it be that way for everyone else out there trying to survive?

Hopefully soon I’ll have something more insightful or analytic to add, but for now I am compelled to focus on the one thing that seems to get shoved to the side in all of this: the needs of the patient with existing illness.

Saturday, March 20, 2010

Doctors as Advocates?

Yikes. It’s been awhile.

How are you?

Usually when I have gaps it means a few things: I don’t have too much I want to say and don’t want to post minutiae (I still want to be useful); I am acutely sick; or I have too many ideas and can’t get out of my own way.

In this case, a combination of a flooded house (hello, epic rain and no electricity!), an infection, and a lot of thoughts that needed time to marinate lest they come out as an unproductive rant equaled silence.

It’s been awhile since I’ve written about the doctor-patient relationship, an important subject in Life Disrupted.

For the most part, that’s because I’ve had such good experiences the past couple years with doctors who don’t just manage my diseases with me but work towards helping me meet my specific life goals. When things don’t work, we change them up. When we’re up against a wall, we find a new way to try to improve my quality of life. When the conversations are difficult and the risks overwhelming, we talk things through. A lot.

This is what has me stewing. A loved one underwent major surgery recently, the third major surgery in two years. It was a complicated, grueling surgery that necessitated significant nerve, disc, and hardware involvement in the spine. The doctor, whom we’ll call Dr. Brilliant Surgeon (or, Dr. BS, which is supremely fitting) is just that- a brilliant surgeon. But in my opinion, he’s not a very good doctor.

For example, it took three weeks to follow up with the results of a CT scan that showed tremendous problems, even though his office knew the patient was in incapacitating, wheel chair-inducing pain and needed some answers on what to do. The excuse? The office was undergoing new training and couldn’t respond to phone calls.

My response? When you have a patient who cannot walk and whose life has grounded to a halt until you report back, you find the time to make a phone call. You make the time, as it were.

For example, literally minutes before the patient was wheeled into the OR, the doctor announced that the surgery he was about to perform would be much more complicated and its success would be much more limited than the patient had been told would be the case for weeks. I understand he was doing what he felt he had to do while he was in there and I agree it needed to be done. However, three minutes is not a fair amount of time to process a huge change and a completely different set of expectations, especially when the test results that dictated the change had been available for a long time. Having a scared, anxious patient who now feels everything has changed and there is no control over the situation is not the optimal way to start a surgery, and since this was not an emergency, there was no need for things to unfold that way.

For example, after the almost six-hour surgery the patient spent several days in the hospital before going to a rehab. Not once did Dr. Brilliant Surgeon check in on the patient to see how she was doing physically (never mind emotionally.) Apparently, it is “not his policy” to follow up, and those quotes are direct.

Does that rub anyone else the wrong way? The way I see it, a patient is still a doctor’s patient before and after the OR.

Or perhaps my expectations for Dr. BS are out of whack?

I am not one to indiscriminately doctor-bash. That is not helpful for productive. But watching this person suffer, and knowing even a tiny portion of that suffering would have been less if this doctor had taken the time to communicate or care, leaves me feeling angry and frustrated.

Contrast these examples to a conversation I had with a new doctor of mine the other day. I was discussing my lung doctor with him, since I knew they would be communicating with each other at some point in the near future.

“He’s the best. He’s such an advocate for me,” I said, without even realizing how much I was summing up in those few words.

For as much as I’ve written about the need for communication, for good rapport, for someone willing to think outside the box, this quality is just as important in a doctor. An advocate is someone who invests his or her time in your particular battles and helps you fight them, who invests in your success and recognizes the importance of your goals and priorities.

An advocate is someone who is willing to make an extra phone call, or write an extra letter, or set aside time to consult if it means that ultimately, you will receive the care you need.

An advocate is someone who realizes there is a lot more to a successful outcome (surgical or otherwise) than simply what data reveals.

We all deserve advocates.

Sunday, March 07, 2010

Who Would I Be Without Illness?

For this week’s Patients For a Moment, founder Duncan Cross asks the question,

Who would you be without your illness?

He goes on to write, There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?

Duncan Cross is one of the best patient bloggers on the Internet, in my humble opinion, and I’m glad he’s probing all of us like this because I too am bothered by the tendency to sugarcoat realities of illness among silver linings or attach maudlin sentiments to what can be demanding, painful circumstances.

I’ve mulled this question over several times the past few days. Indirectly, like in this post on illness and personality, I’ve touched on this question before.

Who would I be without illness?

When you’ve been sick your entire life, that becomes a much harder question to answer. I can’t mourn the “before” I never had, and I don’t spend much time speculating on the person I could have been otherwise because I am busy being and surviving. Illness has always been there, one of the few constants that remained predictable only in its unpredictability despite the many other changes in my life: high school, college, graduate school, career, marriage.

While I am at a point where illness is not the defining characteristic of my life, (and I know this because pushing back against or despite illness is no longer the main motivating force behind most of my decisions) clearly it is still present in nearly all of my choices and compromises.

It is impossible to pull illness out of the many threads that combine to make up the past thirty years, to take it away and see what would remain.

Certainly I can look at the accumulated losses over the years and see what could have been in those moments: all the birthdays, showers, holidays, vacations, weekend plans, family gatherings, and months of school I’ve missed over the years, all the disappointments that had me crying into my pillow as teenager and keep me awake at night as an adult.

There are definitely times when I wish those basic rights of passage that we often associate with living a “normal” life didn’t have to be so hard: What would it have been like to graduate from college with the same good GPA without having to study for tests in the ICU, or graduate from high school without a full year and half of it taken away from me, a blur of missed opportunities and make-up work?

What would it be like to live a life that wasn’t always in a state of catching up?

Or, what would it have been like to marry my husband without the “in sickness and in health” part of the vows already such an obvious and omnipresent part of our relationship? What would it feel like to dream about a future family with him without having to weigh so many competing risks and priorities, to be able to speak confidently in the language of “when” and not “if”?

And yet…

I know, here’s where you’re half-expecting, half-cringing, thinking I am going to say but it’s all been worth it and I’ve learned so much and I am a stronger person for it.

Don’t worry, didn’t I say earlier I don’t like a saccharine gloss applied to illness?

I don’t. Of course it would be nice to not have to fight so hard just to get to the starting line all the time. Of course I’ve had my fair share of anger and frustration and grief over that, and of course I realize that with progressive diseases those frustrations will grow more complicated.

That’s life. That’s the only life I’ve known and it’s the same life I grew up seeing for other family members.

There are some things I do know. For example, I’ve made a lot of negotiations in my career to accommodate illness and I know I might have made different choices if I were healthy, but I also know that no matter what else I might be doing, I would still be a writer. I would still have strong relationships with wonderful people, and who knows what other life obstacles would test our relationships besides illness.

I would still be a stubborn pain in the neck.

The thing is, I do not have regrets. I am proud of what I’ve been able to do and for me, to wish for what might have been, to wish for some hypothetical, abstract notion of “healthy,” chips away at what I have done.

For thirty years I have lived my life in extremes, and in the brief periods where things are stable I catch glimpses of what it would be like to live somewhere closer to the middle. So maybe that would be me minus illness, someone less extreme? But that could also mean someone with less determination or, as my husband says about me when I am exasperating, someone less feisty.

And I don’t know that I would want to make that compromise. My biggest strengths are indeed my biggest weaknesses and while illness may amplify those, I don’t think I’d want to be me without them.

Thursday, March 04, 2010

Why I Participate in Medical Research

Um, it’s March.

How did that happen? In a blink, the late classes that used to start when it was dark now only end in the shadows of dusk, and tiny shoots of early spring flowers are poking through slushy dirt.

It’s been awhile. Actually, it’s been the longest stretch of time in between posts I think I’ve ever had. Usually, silence equals bad news in my world, but thankfully my absence is not the result of acute illness and fragmentation like it was when I made my confessions here last March.

Instead, it’s just a lot of medium-sized things piling up, leaving me standing in a pile of excuses and hating hearing the words coming out of my mouth.

You see, I meant to write a post this weekend in honor of Rare Disease Day, a cause that means so much to me. But I was out of town and then I got glutened, which totally threw me off my game. It’s a few days late, but my meek attempt at fulfilling an obligation I feel strongly about is to instead point you to my Rare Disease Day post from last year, since all the points still ring true.

(How ironic is it that on the heels of my last post on restaurants doing more to accommodate food allergies I went and got glutened for the first time in quite awhile? And this was after speaking with both an employee and a manager and being assured beyond all doubt the marinade on the chicken did not have wheat. Super. I know it wasn’t the lettuce underneath the chicken that made me wretchedly ill…)

And I meant to write and submit a post for this edition of Patients For a Moment that answered the questions: What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

But I didn’t, because each night that week I came home with the best of intentions but by the time I battled traffic and had chest PT it was already 8pm and I hadn’t started dinner and my work inbox needed me and man, my brain was tired. And as much as I wanted to elegantly dissect the ramifications of being a lifelong patient and never knowing what it was like to live without illness as my near-constant companion, I couldn’t get the words from my brain to the screen.

See? Excuses. Valid and truthful, yes, but in the end, meaningless.

But there’s something else I’ve been doing the past few weeks (months, really) that I don’t need to make excuses for, something that relates to the Rare Disease Day and to our identities as patients.

I’ve been participating in research studies. From broad public health studies launched in the ER to short, three-week surveys to long-term trials with blood work and follow-ups, I’ve jumped in whenever I’ve been approached by a research assistant. Sometimes, the studies have little value to my personal situation but are part of worthwhile projects in communicable diseases or prevention. Other times, the studies are directly related to what I live with and am going through.

I am not exaggerating when I say I wouldn’t be alive and certainly wouldn’t have the quality of life I do have were it not for medical research, for the thousands of participants or “subjects” who have volunteered for studies before me and for the researchers and scientists who launch these investigations.

From my point of view, any time I can participate in a research study it’s a tiny way of giving back, and of hopefully contributing to something that will positively impact other patients down the road.

For rare disease patients, the need for research is especially critical. So it may be a few days late and it may not be an official Rare Disease Day post, but consider this my public service announcement for the week.

And at least this is something I don’t have a lame excuse for these days!
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