Randi Redmond Oster questions protocol

Back in April, Randi Redmond Oster sent me a copy of her book Questioning Protocol with the following inscription:

My mission is to help make this book obsolete in 10 years!  In the meantime, I hope it helps others navigate the system.

Well, I've finally had a chance to read the book, and it is excellent. The story told is much more than her son's experience with Crohn's disease.  It is a narrative about the the types of things that regularly happen in hospitals.  I'm not so much talking about medical errors, although those occur. No, this is more about a pervasive tendency of participants in the health care system, as noted by Helen Haskell:

“This was a system that was operating for its own benefit.” 

What she meant was that each person in the hospital was unthinkingly engaged in a series of tasks that had become disconnected from the underlying purpose of the hospital. They were driven by their inclinations and imperatives rather than by the patient’s needs. 

Doctors and nurses face an abundance of tasks every day, and they apply their energy, creativity, and experience to those tasks. But, they often neglect to connect with the patients and families whom they are treating. This is a not a case of bad intentions. Indeed, these folks are among the most well-intentioned people in the world.

Randi relates the story of a doctor's failure to contact her before giving the boy a drug, even though there was no emergent reason for doing so and even though the mother had clearly requested to be consulted on such matters:

"No, I did not contact you. I'm sorry. I did what we always do. Dr. Simmon told me you had an issue with steroids but he saw the pros and cons of administering them. Dr. Hughes and I agreed it was the best course of action."

A follow-up with Dr. Simmon occurs a few hours later:

"I spoke with Dr. Stark today and I understand your concern about steroids. I know you never met her before but she is my partner and I support her medical decision." He blurts this out, stating his position so clearly, that even with a bad [telephone] connection I hear him sharp. The tone in his voice seems like he is concerned about keeping a unified medical front, not about my son.

 "Doctor, Gary is not to have steroids until I understand the justification for taking them. Stop them immediately." I say it strong and clear.

The next day, Dr. Stark says:

"I spoke with Dr. Hughes and Dr. Simmon and since Gary is going to have surgery in three days and he can withstand the pain, he doesn't need steroids. We will not be giving them to him.

I don't think we can expect this kind of scenario to change.  Many in the profession are not ready to change, and they've not been trained to do so. Also, they face innumerable new pressures and obstacles to providing patient-driven care.

Randi learned this during her son's experiences in hospitals.  She therefore developed a series of approaches and techniques to help insert herself into the care regime.  She calls the book Questioning Protocol, and by trial and error, she learned how to do so in a manner that was less likely to cause clinicians to be defensive and upset.  She taught them how to become partners with the patient and his family.

After the episode above, she reports:

Things seem to change in the hospital from this point.  Clearly, they must have written in Gary's records that we are to be made aware of everything and given the opportunity to ask questions.

Now these strangers understand how we operate as a family. I understand they have a well-oiled machine they work in every day.  They move through the machine gears ducking and turning in synchronization with each other, sometimes forgetting that a newcomer might be terrified.  I think they believe that trust in the machine is essential. After all, they know they are the experts.

I feel as if the machine slows down for them when I try to get up to speed.  I see their frustration creep up.  They have other people to process.

The doctors are the first to say they do not have all the answers.  I realize maybe that's why they don't like the questions. But this experience reinforces my resolve: Unless it's life-threatening, I must STOP the machine and understand exactly what is happening.  I'm incorporating these new people into OUR team.

Each chapter of the book contains a portion of her family's narrative, but then ends with two or three or four concrete pieces of advice for people who finds themselves in the clutches of the health care system.  The advice is cogent and clear and helpful.

I highly recommend this book.  I don't think it will be obsolete, as Randi hopes, in ten years.  Buy it now for when you'll need it.  You will.