There are things we (the providers) do to health care that are hurtful. We make protocols and rules that divide us from our patients. Protocols that sometimes make patients feel alone, distant, and disconnected from their doctors. I don’t mean algorithms of care (safe, standardized ways of how and why to treat pneumonia, for example), I mean clinic rules for helping patients schedule and get in to see doctors appropriately.

Triage pathways, if you will.

I hear about these protocol-type irritations from patients all the time. Because I’m a part-time practicing pediatrician, it’s often hard for families to see me when they want. Yesterday, a patient informed me about calling one time while in route to her daughter’s appointment. She had been at a trauma hospital with a family member who was receiving care for a life-threatening condition. She was trying to make it on time to the appointment, but wanted me to know she’d be a few minutes late. She called the clinic and the receptionist said, “No, Doctor Swanson won’t see you.” Of course, this is untrue on some level. In her state of stress, I would always love to make allowances. I work in clinic to help families, precisely when life is upside down. But because of a script and protocol, she was pushed away. Of course, if we saw everyone who arrived late, we’d never be on time or reliable, ultimately rendering us less useful. Protocols do make sense. But they don’t take outliers (life) or individual patients into account.

Many things clinics do in efforts to improve care for all, hurt individuals. The utilitarian-like clinic doctrines I tend to hate. I think of these protocols as walls. Tall structures built up to protect us all from the abuse that only a few people will commit. On occasion, these walls break down the relationship that exists between doctors and patients.

This hit home recently.

Around noon, I was interrupted while writing a post about Tylenol and immunizations. O was having another self-hitting-frantic-mega-tantrum. These started about 5 days ago and can last up to an hour or more.  They have become increasingly alarming to me. After a recent event, I wanted to talk with my son’s pediatrician. She’s in clinic today, but knowing that (for hundreds of reasons) it’s impossible in the year 2010 to call your doctor, I called to schedule an appointment. I’m worried about O, as is my husband. Over the last 5 days he has had a huge shift in behavior. We wonder if he’s hurting, ill, or worse. We’ve had a busy few weeks; I’ve been working late into the evenings and the boys are rising early with the sun. We’re all very tired. Hopefully I’m blowing this way out of proportion.

I call to make the appointment. The scheduler (receptionist) and I get through the name spelling, the date of birth, the doctor I want to see. She asks why I want an appointment and I say, “behavior problem.” This comes out of my mouth, I think, only because I often see patients for this exact complaint in my own clinic. She asks me to clarify, which I do. Then, I get put on hold.

The scheduler returns to ask if this is the first time O would be seen for this issue.

“Yes,” I say. Then, another hold…

She returns with the kicker, “Well, I’ll have to get a good phone number for you. I’m going to forward this to the nurse and she will call you later today to discuss.”

All I wanted to do was schedule an appointment! I wasn’t calling for advice; I wanted an appointment for my son to be examined by the pediatrician who knows him.

Some red-hot word I used (tantrum, I suspect) pushed the scheduler down a protocol. I get it. I know why this happened. But it’s not what I (as parent) and I (as doctor) feel is right. If I were a health administrator, I may feel differently. Thankfully, I’m not.

The thing is, instantly, I was more alarmed and more alone than before. Feeling pushed apart from the pediatrician, I felt more vulnerable and scared for my son. Less a part of a team that cares for him and ultimately isolated. Of course, in these moments, patients often turn to the internet. I see why. And although I have the fortune of many friends (and pediatricians) to call, I wanted to do discuss this more formally.

This may seem like a silly example. There is no imminent threat. No urgent care problem. I bring it up as yet another example of the distance we need to travel in health reform to facilitate caring for patients again. The more we centralize, standardize, and protocolize, the more space we find between doctors and patients. Really, all I wanted to do was schedule an appointment. Centralized scheduling and a protocol got in the way.

Evolving electronic medical records, “e-charts,” e-mail, and other advances will help. Yet, in health care, sometimes it really does feel like we’re trying to build businesses instead of care for patients.

As I always say to patients in clinic, when it comes to health care in America, don’t be afraid to be a squeaky wheel. Often to get what you or your children need, you may need to be loud and insistent.

I’ll calm down and I’ll get back to the Tylenol post. But I do hope to talk and see O’s pediatrician. Would like to bring the divide back together again.

Wendy Sue Swanson is a pediatrician who blogs at Seattle Mama Doc.

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