Bioethics experts share personal perspectives on life-changing cases

BioethicsThis week medical experts from across the country will gather in Seattle to discuss “Cases That Keep Us Awake at Night,” the theme of the 2013 Pediatric Bioethics conference. It’s not uncommon for things to keep us awake at night—a disagreement with a friend or neighbor or anxiety over a big work assignment—but the issues that clinicians and bioethicists will tackle at this confab are quite different.

Most of us, for instance don’t often think about the following questions:
• Should an organ transplant be performed over a family’s objections?
• Should Child Protective Services intervene when a family fails to address the eating habits of a morbidly obese child?
• Should healthcare professionals withdraw medical interventions against the wishes of a family?

Doctors, nurses and others will also discuss the intersection of the personal and the professional, and how it affects their work. At last year’s conference, Douglas Opel, MD, MPH, of Seattle Children’s, spoke about being diagnosed with Crohn’s disease and how it altered his role as a physician. Excerpts from that talk, which was published in its entirety in The Hastings Center Report late last year, are included below.

Physician, patient, parent: Where exactly is the line?

It was only a few years ago that I was diagnosed with Crohn’s. When I was a pediatric resident, I remember one particular call night where I spent its entirety—12 hours or so—altering a child’s pain medications, dosages, and schedules, all in an effort to lessen his horrible, crampy, and unremitting abdominal pain due to Crohn’s. I remember the abdominal pain winning. I also remember admitting patients multiple times over the course of a month for flares of their Crohn’s, amazed at the relentlessness of the disease and the disappointing treatments we had at our disposal to put it into remission.

Most of the medications we used—and still use—had side-effect profiles that were almost as bad as the symptoms they were intending to treat. Partly as a result of these experiences, I had come to perceive Crohn’s as a dark disease. I saw the emptiness, despair, and misery left in the wake of those it affected. My patients couldn’t eat, couldn’t go to school, and couldn’t be kids. I considered Crohn’s to be among the worst diseases I could imagine someone enduring. And now I had it.

A game-changing diagnosis

After the anesthesia wore off from my diagnostic colonoscopy, I was shown pictures of my intestine: it was inflamed, ulcerated, and bleeding. I felt immediately vulnerable and panicked about my livelihood. “This is a game-changer,” I thought. I contemplated quitting my career—easing the stress of work that surely was contributing to my disease. I thought about colostomies, drug side effects, and enema preps for the now inevitable annual colonoscopies I was about to endure.

From my bed, I looked over at my wife, who was holding our six-month-old daughter. My wife is also a doctor, and one glance from her let me know she was thinking the same things, too. It didn’t take long for my health to go from bad to worse. I was anemic, underweight, and nutritionally deficient when I was diagnosed, but my pain symptoms were mild.

And then, the pain

The pain was like nothing I had ever felt before. It caused me to scream at its worst and whimper in anticipation of the next wave. I writhed.

This kind of pain was exactly what my own patients with Crohn’s had to deal with, and yet, they had seemed so much more graceful and tolerant than I had been. I had a lot to learn about empathy.

I decided to look things up in the medical literature, like I would for any difficult clinical scenario I was in as a physician. I searched PubMed, original research articles, ongoing clinical trials. Frankly, this might have made things worse. I found the evidence confusing and difficult to sort through. While I could understand the medical information in front of me in a generic sense, I couldn’t figure out what it meant for me.

Advice, please

I called on a few pediatric gastroenterology colleagues for their advice, hoping they’d just tell me what to do. They didn’t. They reiterated the options and left me to decide for myself. I didn’t want to make this decision. Despite looking at it from every angle, I couldn’t think it through decisively. I felt totally dependent on others. I made another appointment with my gastroenterologist to discuss the options again.

I decided I was going to disclose my illness and my own patient experience to patients of mine who were going through the same thing. I got my first chance to do this not long after starting Remicade. I was attending on the wards and admitted an adolescent who had symptoms indicating an inflammatory bowel disease. We ultimately diagnosed her with Crohn’s. “Ah, ha!” I said to myself. “Something I know a bit about and can relate to! I can tell her all about what to expect and what I’ve been through. I can say, ‘I know how you feel’ and truly mean it.” In the end, though, I balked. I entered and left my relationship with this patient like all others before her.

A change of heart

I think we too often get bogged down in trying to protect doctors and clinicians from themselves instead of nourishing a culture that promotes a healthy doctor patient relationship. To emphasize what we should avoid regarding disclosure instead of what has a positive effect seems to diminish, disregard, and downplay the incredible insight we can gain in one role from the experiences we have in another.

It also seems to hinder our ability to take advantage of those insights to improve ourselves. Many, if not all,doctors are also patients, so why not capitalize on this shared experience? It offers an opportunity to deepen our therapeuticrelationship with our patients, to build trust, to help understanding,and maybe even to improve patient outcomes.

Recently, I talked to a worried parent of a two-month old patient of mine who was considering delaying several immunizations for her child, and I told her I understood her anxiety because I was anxious, too, when my kids were due for their first shots. She was shocked that I could have been conflicted at all, but it was also very reassuring for her and helped her decision-making.

An 18-year-old patient of mine with newly diagnosed diabetes expressed to me his devastation at the thought that his disease will likely cripple his career aspirations. I told him, hey, I’ve got a chronic disease, too, and I’m not letting it stop my career.

Tailor the personal to match our patients

We can tailor our personal medical experiences to match those of our patients, extracting those tidbits that are likely to be the most applicable and supportive. I think there are positive and transformative outcomes that await us and our patients if we do.

The other day I came home from one of my Remicade infusions and my daughter, now four years old, noticed a bandage on my arm where my IV had been. Instead of explaining it away as an “owie” I got at work but that is all better now, I decided to tell her what had actually happened. “Daddy is sick,” I said, “and this is where I get medicine to help me get better.” She had a lot of clarifying questions, but then she just sat calmly on my lap and met my eyes with hers. Fully expecting her to begin with a second round of questions after having just processed the first round of answers, I instead got a big surprise. She said, “I love you, Daddy,” and she gave me a big hug.

The 2013 conference is sold out, but it will be available via a webcast on UWTV. Video clips from this year’s program will also be posted in August.

The Treuman Katz Center for Pediatric Bioethics, launched in 2005, is the first of its kind in the nation. Learn more about the center and its impact on patients, families, doctors and nurses who are dealing with challenging ethical questions.

If you’d like to arrange an interview with Dr. Opel or other bioethics experts, please contact Seattle Children’s PR team at 206-987-4500 or at [email protected]