On Being Better Patients—The Follow Up

Posted on August 24, 2008 by ledwards

My last post on how to be better patients to each other stirred up some conversation—turns out (once again) that despite differences in diseases and symptoms, many things unite us, especially when it comes to waiting rooms, hospitals, and emotionally-charged situations.

As a follow-up to that conversation, I want to explore an issue one of my readers brought up in the comments section, something I touched on very briefly in the post—the idea of illness as a competition. “Illness isn’t a competitive sport” is the exact phrase that comes to my mind, and until very recently, I wondered how widespread the phenomenon was. Was it a dirty little secret of life with chronic illness, something that occurred in waiting rooms across the country? Or was it something more unique to the particular doctor’s offices I frequented? Judging from the initial response, I suspect the former is the case.

You know what I’m talking about, right? You’re sitting in your chair, perhaps leafing through a magazine or engaging in idle conversation with other patients in the room. Somehow the conversation around you turns into a bizarre sort of one-up-man-ship, with patients swapping war stories, surgery tales, and escalating degrees of complaints. The tenor has changed from surface-level camaraderie to a competition.

It’s an interesting phenomenon. I’ve never seen it get to the point where there’s almost a fight over whose symptoms are the worst, as others have mentioned, but I have seen it get pretty intense. Most times I ignore it, but sometimes it gets to me and I cannot wait to be called back just so I don’t have to hear it. It’s stressful to sit there and listen to so many things that are wrong. After all, everyone’s got something, or none of us would be there.

My reaction has always been, who would ever want to win the “sick” competition? That just doesn’t seem appealing to me, or worth it, or in any way productive. And I have to believe that no one really does want that title.

Obviously illness can be really isolating, so maybe people are just lonely and need some place to vent. Maybe they’re in a tough phase of acceptance or adjustment and their symptoms are especially overwhelming. Maybe their illness is a huge part of their identity and in the moment, someone else’s condition is somehow a threat to that identity. Who knows. But I don’t believe there’s any maliciousness or mean-spiritedness in it, and I don’t think it’s even an intentional escalation or competition.

And I think it’s just normal human nature to hear something and think, “You think that’s bad, how about X?” I know when I’m at my rheumatologist (which, for whatever reason, is where it happens the most) and listen to the back and forth I sometimes think about someone I know who’s had multiple major (invasive) surgeries and excruciating, degenerating pain and think these people are actually pretty lucky.

And clearly that’s not fair of me. Other people’s pain and illness are still very real and altering even if they don’t seem as severe as someone else’s. (And I say “seem” because really, you never know what someone else life or situation is truly like.)

At the same time, I’ve also felt funny even coughing at my lung specialist’s because I know there are some seriously sick people treated there, people waiting for transplants to save their lives, people who cannot live without constant oxygen, people I know are so much sicker than me. (They’ve never made me feel that way—most don’t even talk, it’s just a self-consciousness I feel).

And that’s not fair either, because this isn’t a competition and no one need apologize for not being as sick.

And I think the reason both those instances aren’t fair is what I will call Rule #7—No one has a market on suffering. Especially when we’re at the doctors, and we’re probably all a little anxious, and no one’s feeling all that well.

Especially when you consider the saying posted over on Hemodynamics:
“Be kind, for everyone you meet is fighting their battle too.”

Whaddya think?

The Patient-to-Patient Relationship

Posted on August 17, 2008 by ledwards

One of my long-time favorite bloggers, Dr. Rob of Musings of a Distractible Mind, has gotten a lot of press lately on Tara Parker-Pope’s Well blog in the New York Times. His posts on what six things doctors should know and how to be a better patient are insightful, practical, and, judging from the volume of comments they elicited, they touched on topics at the forefront of people’s minds.

I’ve written a lot about the doctor-patient relationship on this blog, and discuss in detail how to establish a successful partnership with doctors and become an empowered patient and advocate in Life Disrupted, and it’s wonderful to see these issues covered from the physician’s perspective.

I’ve spent a lot of time having appointments and tests lately (this recent health static also explains the slight delay in postings this week), and I can’t help but think there’s another angle to this larger discussion on relationships in health care—the patient-to-patient relationship. After all, from crowded waiting rooms and emergency departments to double-occupancy hospital rooms and rehab groups, we don’t just spend time with practitioners when we’re living with chronic illness. We spend a lot of time in close proximity to each other, and since we’re all in this together, there are definitely things we should remember to be better patients to each other:

1. Be punctual, and if not, proactive—Show up on time; one late arrival can often cause an ugly domino effect on subsequent appointments. I usually have an uncanny knack for getting on the road just when a lane has been closed, an accident has just happened, or some other traffic-inducing calamity occurs. As we all know, despite our best efforts and best intentions, life happens, and we can’t always control our arrival time. But if you realize you’re not going to make it in time, make a reasonable attempt to let the office know, and estimate when you think you’ll show up. This way, they don’t give away your appointment entirely, and might be able to make up the time other ways if they have advance notice. It’s the fair thing to do for all the other patients who do show up on time.

2. Cell phones are great in an emergency, but totally annoying in other settings—Loud ring tones and even louder telephone conversations have no place in a waiting room, ER bay, or hospital room. Besides the fact they might interfere with medical equipment, they are disruptive and distracting to other patients, who may already be anxious enough. Keep your ringer silenced and if you do need to take a call, step out into the corridor, the front entrance, or any other place where your personal business doesn’t infringe on someone else’s. I’m always attached to my cell phone, so reminding myself that I don’t have to answer every call or that I can call the number back from outside takes practice.

3. Triage exists for a reason–I can’t count how many occasions I’ve watched people become irate and even antagonistic when they’re waiting to be seen in the ER and others are called first, anything from sniping in their seats when other names are called to repeatedly (and loudly) badgering the front desk. Such behavior makes it harder for the rest of us, who are also impatient to receive medical attention and who are in pain, too. When we’re uncomfortable, scared, and anxious to be seen, it’s certainly understandable that we may get impatient, but the ER is not first come, first serve. That doesn’t make waiting for an X-ray of a broken bone or a CT scan for a painful abdomen any easier, but there’s a reason patients with more severe injuries or complaints jump to the head of the line—their lives may depend on it. As a related item, in a regular office waiting room, remember that many practices have patients in the same waiting room visiting different doctors—just because you’ve been waiting longer than someone else doesn’t mean you’re getting skipped, it just means that person is probably seeing another provider.

4. Remember there’s another side to the story–I’ve totally been that irritated patient in the doctor’s waiting room, annoyed that my appointment time has come and gone and worried about the work I’m missing. But I’ve also been that extremely sick patient who got worked in at the last minute because I couldn’t afford to wait, and my doctors couldn’t afford to delay diagnostic tests and evaluation, the patient who backlogs the schedule and takes up a lot of time. While I’m not always successful at it, when I start to get antsy and annoyed I try to remember the times the tables have been turned and other people have had to wait on account of me. I try to dial it back a bit, and be glad that I am there for non-emergent reasons.

5. Pay attention to social cues–Sometimes, there’s nothing better than some conversation in a waiting room. Whether it’s commenting on a headline, discussing patient education materials, or comparing notes on a similar condition or medication, polite chit chat or commiseration can pass the time and even forge temporary bonds. But you never know what’s going on in someone else’s life, what their health status is, what they’re worried about in their impending doctor visit, what other life problems are on their minds. Some days are just bad days, when people don’t feel like idle chitchat and don’t want to engage in conversation, and may not want to hear about the particulars of your condition. Be sensitive to those cues, and don’t take it personally if someone doesn’t reciprocate your friendly gestures.

6. Don’t make assumptions–I really believe that most people are well intentioned and that comments are made out of concern or curiosity, not maliciousness or spite. With that said, however, be careful about vocalizing snap judgments. One afternoon I was sitting in an infusion room, surrounded by four or five other patients who were also receiving IV medication. We knew we’d be together there for a few hours, and started chatting. The rest were older, and had the same condition and medication. I was there for something completely different, and they wanted to know why I was receiving the medication I was. I answered briefly, and one woman replied by saying, “Really? That sounds bad! You look too young to have that!” and, turning to the person on her right, added, “Doesn’t she look too young to have all that? Makes me feel lucky!” Um, yes. I know she didn’t mean any harm by it, that she was probably just surprised because I had something different than the rest and because she had a daughter my age, but in the moment, it still made me feel like a freak. Clearly I wasn’t too young for it or I wouldn’t have it, and I didn’t feel especially “sick” or serious, so her emphasis on how “bad” it sounded was unnerving. I know I’ve been guilty of the same thing, because sometimes our gut reactions rush to the surface and our responses can have completely unintended consequences.

Really this all boils down to common sense, but in our more trying moments when we don’t feel well and we’re frustrated, it’s worthwhile to think about what we each bring to the patient experience.

Disclosing Physcians’ Gifts: Analysis, Articles, and An Interview

Posted on August 8, 2008 by ledwards

As a patient, patient blogger, and all around news junkie, I have to admit when I first heard about health care reform legislation in Massachusetts aimed at reducing costs this past March, I was more than interested. When I learned that part of this legislation involved a ban on gifts to physicians from pharmaceutical companies, I was even more interested. Reduce costs and limit potential conflicts of interest? My heart trilled just a bit. What’s not to love?

But if a recent flurry of headlines about the controversy and heated opinions are any indication, newly modified legislation that makes public any gift of $50 or more a physician receives from a pharmaceutical or other company is anything but simple or obvious—especially in a state like Massachusetts, where the life sciences sector is a huge part of the economy and academic research centers and hospitals are integral.

To wit, an editorial in the Boston Globe urges Governor Deval Patrick to stand firm on the bill, writing that “the state is right to make sure doctors make medication decisions based on merits, and not meals.” At the same time, an op-ed penned by leaders from the biotech and medical device industries outlines their case for why the legislation “will absolutely affect whether companies continue to choose our world-class hospitals for this important clinical work.” Read through them for more background; there’s a lot to digest.

It’s certainly a good time to be a health news junkie in Boston, no?

As always, what I’m interested in how these issues will affect our daily lives. As a patient with rare diseases who knows firsthand how important research and development are to patient outcomes, how could I not be curious? After all, clinical trials are where the developments we count on come from, and if this legislation will have a negative impact on clinical trials, as opponents claim, I’m certainly paying attention.

It makes plenty of sense to me why legislators who want to reform health care and contain costs would support this bill, and it makes a lot of sense to me why patients would care about what their doctors are getting from the companies that manufacture the medications and medical devices that treat them. Patients want the treatments that are best for them, and those are not necessarily the ones that have the largest marketing and promotions budget. Transparency is a hot-button issue in health care right now, and with good reason in this context.

It’s important to me I understand where the positions both sides are taking originate, and clearly it’s not enough to pit this in terms of disclosing physicians’ gifts or not, or making comments about sandwiches and pens. To that end, I chatted today with Dr. David Charles, chairman of the Alliance for Patient Access, a non-profit organization that teaches physicians how to advocate to ensure patients have access to appropriate therapies, to see why there is such opposition to this legislation.

(Since it’s all about disclosure, the AfPA receives funding from industry trade groups).

According to Dr. Charles, a fundamental problem with this portion of the legislation is that it has the potential to set up a “complete misunderstanding” of the relationship between universities, physicians, and the companies (pharmaceutical, medical devices, biologics, etc) that support these clinical trials—and he considers this partnership imperative if we’re to continue seeing progress in understanding and treating diseases like multiple sclerosis or Alzheimer’s, to name but a few.

“This is a step backwards, not forwards,” he says.

Since the information published on the state Web site would mention the physician’s name and the money he/she received that went above $50—and not how the money was used—he fears the flow of funding could be misconstrued. This also goes along with other claims (see links above) that this kind of disclosure would make physicians less likely to participate in clinical trials, meaning companies would then invest in them in other places.

For example, money that goes to the university to help support clinical trials would look like it was simply being paid to a physician, not the university and all the staff involved in the trial. Or, money allocated for a physician to teach other physicians how to use cutting edge technology and devices that improve patient care would not be identified as such. Dr. Charles worries this “disclosure without context” could make what are completely appropriate and essential practices seem inappropriate.

He also had some interesting things to say about the writing of prescriptions, which is often one of the first criticisms patients and policy experts point to when discussing conflicts of interest and gifts from pharmaceutical companies. “Writing prescriptions is not the issue at hand,” he says. Rather, helping physicians understand when to select certain medications—what the side effects are, what drugs they work the best with and which ones they shouldn’t be prescribed with, etc—is the key issue. He views educating physicians about these variables, much like training physicians on how to use new equipment and other forms of continuing medical information, as both completely appropriate and essential for the best care for patients.

So patients (and readers from all points of view), I’m interested in what you think about all of this. As you can see from the media blitz on all sides the debate wages on, but the bottom line is, what is best for the patient? Do the potential risks to the partnership so important to clinical trials outweigh the benefits of the concept of transparency so many of us hold as paramount these days? While we wait for the Governor’s response, I’m eager for yours.

UPDATE, 8/11: Here’s an update article from today’s Globe that discusses the health policy Gov. Deval Patrick signed into law. Looks like transparency wins–or at least gets a big push! Check out the article; there’s a lot of good info the primary care physician problem I’ve written about before.

Education, Disrupted: An Update

Posted on August 1, 2008 by ledwards

This past May I wrote about the challenges college students with chronic illness face in terms of achieving their goals and staying enrolled. I also wrote about the great work the Chronic Illness Initiative at DePaul University is doing to help students overcome these challenges.

As an update to that post, I’m happy to pass along this news story about Michelle’s Law, a bill passed recently that, according to the Boston Globe “would allow allow seriously ill or injured college students to take up to one year of medical leave without losing their health insurance.”

It’s sadly ironic that in cases like this, students with serious conditions who are trying to treat their illnesses or recover are often penalized by losing the very insurance they need to survive. That’s why this legislation is exciting, promising, and…logical.

Who would have guessed it?

Mid-Week Resources

Posted on July 30, 2008 by ledwards

Looking to dig into some good chronic illness resources to get you to the weekend? The July Pain-Blog carnival is now up at How To Cope With Pain, and remember, new bloggers are always welcome to contribute their best posts at the end of each month.

Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I’m thrilled to see growing attention towards this phenomenon.

On Interstate Dining, 80s Music, and Caregivers…

Posted on July 29, 2008 by ledwards

This weekend we completed our first road trip of summer 2008—twelve hours to Michigan for a family function, and twelve hours back just in time to pick up the dogs at their kennel and get to work.

Radio stations and rest stops are the only things that break up the monotony of long car rides—well, that and crossing the Canadian border each way. I know all about the tips for eating gluten-free while traveling in the car, and I dutifully pack nuts and trail mix, bottled water, and fruit.

(I’m irrationally militant about consuming greens at every meal, and after doing this route for a few years now, I can vouch for the Lee, Massachusetts service area with a Fresh City and the Pembroke, NY service area with a Fuddrucker’s as A Chronic Dose-approved salad stops.)

While we may have stocked up on gluten-free snacks, we forgot to bring our iPod adapter or CDs so it was all radio, all the time. In a freakish coincidence that defied station, state, or even country, every single different station that came in played 80s tunes—REO Speedwagon, Chicago, and lots more. Seriously. The songs totally brought me back to my childhood, to driving around in my mother’s cream station wagon, my legs sticking to the leather interior in the summer’s heat.

But we heard one song that has a particularly vivid and visceral memory: “The Power of Love” by Huey Lewis and the News. Whenever I hear it—and this past weekend was no exception—Bam! I’m five years old, a couple of weeks into my several-week stay in isolation due to a serious staph infection spreading from my ears to my brain. It’s brashly sunny in my white room overlooking the Charles River, and I am bored.

There was a playgirl on my floor named Mimi—I’m sure that wasn’t her official title, but that’s what I called her in my head—and since I couldn’t go to the playroom with the other peds patients, she brought special toys and games to me. One time, she brought a small radio and played that song. I still remember her strawberry blond curls and pale skin, still remember the effort she made to bring a little bit of fun into my life.

(As an aside, it’s no irony that the summer before college I volunteered with the Child Life department at Boston Medical Center, where I learned how to engage in therapeutic play on an in-patient floor…and it’s no coincidence that I loved it.)

Anyway, all of this road trip reminiscing is going somewhere, I swear. Clearly I had hospitals and caregiving on my mind this morning when I read this post on Running a Hospital, a note from a family member of a hospital patient who wanted to highlight the exceptional care certain nurses and physicians gave her relative.

I’ve always said it’s the nurses who make or break a hospital stay, and I firmly believe that. They are the ones who attend to our immediate needs, who spend a lot of time reassuring family members and answering questions, who are our advocates and caregivers, and whose gestures, however big or small, can make such a difference in our quality of life as inpatients.

I’ve had nurses who’ve stayed late to give me chest PT when respiratory therapy couldn’t make it, or who brought decorations and festive platters of baked goods and flowers from their own holiday celebrations to cheer up the floor. I’ve had nurses who’ve made me laugh when I desperately needed to, who’ve made me feel comfortable despite extremely uncomfortable symptoms and circumstances, who’ve treated my friends and family as warmly as I would.

I’ve also turned a sharply trained eye to the nurses in charge of the people I care about. Like the letter-writer in the post I mentioned, I’ve appreciated—and remembered—the nurses who soothed their anxiety, prioritized their worries, and responded to their concerns and fears with dignity. I’ve taught several sections of nursing students, and I am always impressed with their passion and enthusiasm for patient care, passion they bring to their classroom discussions and their research projects.

So while the weeks I spent in isolation as a little girl aren’t the best memories I have, certainly, the memory that classic 80s tune conjures up is a good one—it reminds me that for however overwhelming the hospital can be, there are doctors, nurses, physical therapists, child life specialists, and many others whose actions remind us we are people, not solely patients.

***
Speaking of nursing, interested in basic information on the nursing shortage or chronic illness nursing programs? Check out these links. Just a little bit more summer reading…

An Open Mind

Posted on July 21, 2008 by ledwards

I was asked recently what one thing I would like to tell physicians, nurses, and other health care providers. I just wrote a book about interacting with the health care system, and its content ran the gamut of emotion: gratitude, optimism, frustration, skepticism–clearly I’m not one for brevity.

In the end, though, the answer was succinct, and the more I think about it, it is something that applies to patients and practitioners equally:

Keep an open mind.

In terms of diagnosis, the flash point for so many patients with chronic conditions, keeping an open mind works in several ways. For physicians, it means remembering that the obvious, logical diagnosis may not always be the correct one, something I can attest to personally. I am forever grateful to the physicians who looked beyond what “should” have made sense for a diagnosis and found the diagnosis that actually reflected both my experiences and my symptoms—even if it was an exceedingly rare one. For patients, it means remembering that even if you’ve been dismissed before, it is possible to start fresh with a physician or nurse practitioner and work towards a correct diagnosis.

In daily life, keeping an open mind means, quite literally, being open to new or creative ways to adapt to illness. Whether it means trying techniques like yoga or meditation, incorporating new foods and recipes into meal planning, or very pragmatic things like switching your exercise schedule or working out a flex time arrangement with an employer, keeping an open mind means recognizing there are many different approaches towards accomplishing a particular wellness or lifestyle goal.

If you’ve been reading this blog regularly, then you know how important I think an open mind and a willingness to try new ways of solving existing problems are to meeting some of the universal challenges in health care: better disease outcomes, increased compliance, and, yes, of course, more accurate and efficient diagnoses.

That’s why I’ve posted about the value of expressive writing, and why I developed a creative writing program for chronically ill pediatric patients. It’s also why I think programs like Dancing with Parkinson’s or Loolwa Khazzoom’s Natural Pain Relief that use dance and other forms of the arts to relieve pain, increase strength, and otherwise address symptoms of debilitating disease are incredibly valuable.

It’s also why I was so interested in “Monet? Gauguin? Using Art to Make Better Doctors” from Sunday’s Boston Globe, which discussed a class at Harvard Medical School that encouraged medical students to use art to improve that most fundamental and most complex of interactions—the patient exam and diagnostic process.

The article quotes Dr. Joel Katz, who first proposed the class five years ago, as saying, “We’re trying to train students to not make assumptions about what they’re going to see, but to do deep looking. Our hope is that they will be able to do this when they look at patients.”

Turns out, new research in the Journal of General Internal Medicine supports this. The article goes on to say that the students’ ability to make more observations increased by 38 percent. In age where physicians rely heavily on CT scans, MRIs and other specialty diagnostic tools—some argue too heavily, and at too high a cost for the health care consumer—helping medical students learn to see the many possibilities inherent in one situation is a valuable skill indeed. More precise observations yield more precise diagnoses.

Sounds pretty good, doesn’t it? The course was a stark departure from the required core courses at Harvard Medical, but all it took was a few open minds…

Following Up on Living Proof…

Posted on July 16, 2008 by ledwards

In a nice coincidence, I did an interview with Deborah Harper of Pyschjourney today that emphasized many of the themes in my previous post–a pioneering generation of adult patients; the impact of spousal caregiving on younger marriages; transitioning into adult care as a younger adult, etc. While cystic fibrosis is by no means the only example of this type of disease whose population is truly re-shaping medicine, it is a great example nonetheless. Of course we talked about lots of other stuff, too, and you can click here to download the podcast.

Living Proof…

Posted on July 15, 2008 by ledwards

Before I jump into this post, I want to take a moment to thank each of you who showed up to my reading events last week. The show of support at Porter Square Books was truly overwhelming—it was a standing room only crowd, and we sold out of all the books and dipped into special orders. Many thanks to everyone who showed up; it was great to see familiar faces, and equally great to see and hear from so many of you I’ve never met before.

One of the questions I am asked often, and one of the things I spoke about last week, is why I wrote Life Disrupted. The short answer is that I saw a real need for it. While there are many more details and nuances to that statement, that one simple sentence really does sum it up. I saw a population of younger adults with chronic illness that was much larger than most realized. Patients with serious childhood diseases are living longer into adulthood, and many otherwise healthy patients first manifest chronic and autoimmune conditions in their twenties and thirties.

Within that diverse patient population, I saw so many important trends that weren’t being written about in a substantive, mainstream way. Two of those trends, and arguably two of the most compelling and complicated ones, include the impact of spousal caregiving on younger marriages and the “can versus should” debate in terms of people with chronic illness having children. I was fortunate to find patients whose experiences speak to these issues, including patients with cystic fibrosis (CF), among many various illnesses covered in the book, and I learned a lot from them.

So why am I telling you all of this right now? Because this week I was also fortunate to stumble across this blog, Confessions of a CF Husband. It’s an engrossing, honest look at one family’ journey through the wife’s double lung transplant and the premature birth of their very-much-hoped-for baby girl, a high-risk pregnancy situation indeed. Their struggles and triumphs are inspiring and sobering, and their realities mirror those of a generation of patients with the power to truly redefine how we perceive people with serious disease.

Laurie Edwards

Writer, Teacher, Advocate