What Makes an "Ideal" Healthcare Provider?

Living with a rare, chronic disease can be a frustrating balancing act between your condition and your life. Or so Laurie Edwards documents for readers at her blog, A Chronic Dose. The professional writer and writing instructor provides insightful advice for those living with chronic illness both on her blog and in her published writing. In my recent interview with her, she talked about her personal journey and her work to inform others who are dealing with chronic disease and the healthcare professionals who are treating those patients.

Colin Son: You've got a new book out about dealing with chronic disease as a young adult. What, if anything, did you learn about yourself while writing the book?

Laurie Edwards: Writing Life Disrupted was a great experience; it was exhilarating, terrifying, exciting, and difficult. It was important to me to be completely authentic, and that meant putting things out there that aren't always flattering or aren't always comfortable for me to discuss. Plus, I had collected all these stories and emotional content from other patients, and I really wanted to make sure that my interpretations portrayed them accurately and fairly.

Writing it was also incredibly humbling; I learned so much about what other patients have dealt with, and many times was blown away by their insights and wisdom. When you've spent an entire lifetime being sick and have grown up with parents with serious illnesses, there's a tendency to think you've seen it all, and that's obviously not the case. So in essence, what I learned about myself is that there is always so much more to learn and so many perspectives and ways of looking at the same issues I should consider. At the same time, I noticed so many ways in which we all respond to illness similarly, and that was incredibly powerful, too.

Colin Son: You're a creative writing teacher and you blog sometimes about education in the healthcare professions. At the same time, the incorporation of "medical humanities" into medical schools has gotten its fair share of criticism as "woo." What benefits do you see in things like the narrative and the study of art for future healthcare professionals?

Laurie Edwards: Patients need doctors to be able to diagnose them and then figure out how to cure them or, with chronic illnesses, treat them. Anything that helps medical professionals accomplish these tasks is of huge benefit to the patient, whether it's written reflection on their practice (and certainly the popularity of physician-writers speaks to the importance of reflection and self-awareness) or an art class that helps medical students be more precise, attentive observers. We're all working towards the same goal -- healthier patients -- and the medical humanities are an incredibly important part of that process. I think programs like the ones I've written about on the blog, and that you've pointed out in your question, encourage medical students and professionals to consider what's in front of them from multiple perspectives. And as a (rare disease) patient, I really appreciate that.

Colin Son: You write quite a bit about your relationship with the medical field. As a patient with several chronic diseases, describe your perfect physician (or nurse practitioner or physician assistant), if you wouldn't mind.

Laurie Edwards: Yes, I write about this a lot, and it is the topic I get the most questions about during interviews, so I think there's really a lot of frustration and angst out there among patients, especially those who've had a difficult time getting a diagnosis. I also think there's a lot of admiration and respect, too, and a genuine desire to connect in a substantive way with their doctors.

My ideal healthcare provider is someone who has an open mind, who is willing to work past the obvious or common diagnoses and consider other perspectives. He or she must be able to admit when they are not sure what is wrong; I respect that honesty, and I need it. I want someone who sees how my conditions affect my life as a whole, not just my life as a patient -- someone who understands my goals and will work with me to try to reach them. For example, teaching, writing, and public speaking don't mesh well with hospitalizations, so helping me attain my goals means creating a long-term treatment plan and "emergency" plan that keeps me out of the hospital as much as possible.

Someone who is responsive but not alarmist is essential, especially when you're like me and juggle a bunch of different problems with emerging complications. And I can't leave out the importance of chemistry, that rapport you naturally have with some people and just don't have with others. If it's a short-term medical problem, that's not as big a deal; but with chronic conditions you're going to be seeing a lot of your doctors, NPs, or PAs. You need to like them and feel comfortable being vulnerable with them.

Colin Son: You had a struggle with getting to your eventual diagnosis of primary ciliary dyskinesia (PCD), but I'm wondering what other unique challenges you face with a rare disease.

Laurie Edwards: It's hard for friends or acquaintances to understand how my conditions affect my life because they have very little context for them. I can say that it's somewhat similar to cystic fibrosis (CF) and sometimes that works, but there's no guarantee that a person has a working knowledge of CF. Plus, without the Internet, it would be nearly impossible to connect with anyone who has PCD, and hearing from other patients and learning what works for them is really important when you're a recently diagnosed patient. In fact, until a book event last month, I'd never met a single PCD patient in real life (we had to keep a small distance between us because of our germs, but it was great to actually meet someone).

So socially there is that "You have what? What is that?" component, but that can filter into the medical arena, too. More often than not, when I'm giving my medical history or am in a triage situation, the person I'm speaking with doesn't know what PCD is, or thinks I'm talking about bronchitis when I say bronchiectasis; clearly that's a huge mistake, and if they don't understand what's wrong it delays my treatment.

Overall, a challenge for so many rare disease patients is getting the research they need for better treatments. The populations are so much smaller, the recognition is not there, and fundraising is on a smaller scale than what you'd see for, say, breast cancer, heart disease, or diabetes. Luckily there are a lot of hard-working disease groups out there, and there have been some incredible biotech breakthroughs in recent years, but it's still definitely a huge challenge.

Colin Son: What does the next year look like for you and your blog? Is there another book in store somewhere down the line?

Laurie Edwards: The next year should be a busy one. I'll be teaching, doing readings and other events for the book, speaking at conferences, and writing. With A Chronic Dose, I want to continue blending personal essays with analysis of policy, research, and interviews. There are several more books I plan to write, and I'm involved in a project that I am really excited about. I hope to have more details on this next book shortly.

Colin Son: In the meantime, Laurie will be writing this week's edition of Grand Rounds. Check out what patients, physicians, nurses, students, and other bloggers submit as the week's best writing from the medical blogosphere.