The Patient Experience: Reality Versus Vision

“He was born at 33 weeks?” the pediatrician asked me, reading from the paper chart I had to fill in.

“Yes.”

“What was the reason for it?”

I took a deep breath and related, for what seemed like the hundredth time, the story of why my son was delivered so early.

“There were decelerations in his heartbeat. The doctor first noticed it at my 32-week appointment, and they monitored me for the next few days. They couldn’t get a consistent enough read, so I underwent an emergency C-section,” I replied.

Dr. Joe, as I’ll call him, was nose deep in his notes, meaning he couldn’t register the despondent, exasperated expression on my face.

“I’m sure it’s in the notes somewhere,” I managed. What I wanted to say — what I was feeling, was, “Are you really making me retell this story? It was pretty traumatic. Very traumatic, actually.”

And then he hit me with a bomb.

 

“Did you fight the decision? Or try to seek a second opinion?”

WHAT?!?!

“Um, no.”

It was all I could muster. It was almost as if he was implying that I could’ve done more; that trusting an experienced neonatologist was my first poor parenting decision.

Again, he failed to see how upset I was. He also failed to realize that, in addition to dealing with two preemie newborns – one with an apnea monitor and the other who required a follow-up appointment with a pediatric cardiologist – I was battling postpartum anxiety and depression. And the fact that my children were born so early, something I now understand was not at all my fault, was a trigger. I felt tremendous guilt about it, constantly wondering what I could’ve done differently.

Not exactly the experience a new mom should have during a ‘well visit’ with her baby. I went home and cried, his words repeating in my head. Did he intentionally try to upset me? Of course not. But he sure didn’t try to assure me that I was doing okay at this parenting thing.

Now, imagine if it had gone this way:

Physician looks at the electronic chart, which includes information about the birth (makes sense, as the practice is affiliated with the hospital). He sees that the baby was born prematurely and was prescribed an apnea monitor, but otherwise seems to be doing well. Weight is steady. Some spitting up after bottles, but no major concerns.

Then he turns to the mom and asks, “How are you doing? Are you getting any sleep?” After she tells him she’s been diagnosed with a mood disorder, he asks if she is seeking treatment and has a support system. She says something like, “I am. It’s been a really rough few weeks, but I feel like I’m on the right path.”

The physician says, “That’s good to hear.” He enters the information into the chart and refers her to a care coordinator or concierge, who then asks the mom if she’d like to be referred to a parent support group. Maybe the concierge even asks if she’d like to enroll to receive text messages checking up on her.

She leaves the appointment feeling just a little better — not just because the baby, who at one point needed a feeding tube, was doing well — but because she feels supported and cared for.

Is this scenario so far-fetched? I certainly hope not. As we recognize Women’s Health Week, my hope is that we create a better experience for new mothers — especially those dealing with perinatal mood and anxiety disorders (which is about 1 in 7). My hope is that, by enabling physicians to access all of the pertinent information about patients, we’re helping them to provide more compassionate care. My hope is that one day, the experience I envisioned becomes the rule, rather than the exception.