Tuesday, July 28, 2015

Patients as Health Experts

A few months back at one of my meetings, at the Stollery Children's Hospital, the topic of access to the patients' chart came up. This is always a thorny issue for hospital folk because it can be quite contentious.  Everyone talks this wonderful game about being in tune with the wishes of patient and being patient centred.  Discussing the "chart" is one of those issues where patient centred care is tested.

I was informed that, by policy, in order for patients to see their chart at the Stollery Children's Hospital, they must be accompanied by a staff member.  I am assuming this means a doctor or nurse.  This policy makes me chuckle.  I am curious who explains the chart to them (the doctors and nurses).  Let me explain.

When my son, Russell, was transferred from Winnipeg to Edmonton, the ER team here in Winnipeg described him as having "seized".  There term not mine.  On the front page of the chart was a description of what happened in Emerg the night he was admitted and there was the comment "query seizure."  Medical professionals are highly trained and very smart people.  This does not mean they don't use poor terminology on occasion.  The phrase "query seizure" caused us a great deal of hassle when we arrived in Edmonton.  Every time a new physician came on service they would familiarize themselves with my son's chart and get a "feel" for his medical history.  Of course, on the first page of his chart is "query seizure."  This would immediately begin a conversation and in some cases result in neurology being brought in to consult.  After a while we, the parents, clued into this silliness and explained in no uncertain terms he did not have a neurological event (seizure) in the conventional sense.  The correct terminology would have been cardiogenic shock.  We had to repeatedly interpret the chart for the doctors and nurses who would glance at the front page of his chart and draw the wrong conclusion.

There have been several other occasions when we had to interpret the chart for our attending physician.  We realized how critical it was to be there and to advocate for our son and provide our knowledge.  In our adventures in health care we have been able to prevent unnecessary testing and in some cases avoid lengthy hospital stays because we had information that was either missing from the chart of poorly recorded.

One of the biggest frustrations I have is the lack of respect we, as parents, receive about our knowledge of our health.  Doctors don't like being "shown up" by mere patients.  My wife and I have been exposed to some very specialized cardiac training.  I love getting into technical discussions with Doctors, I get so much valuable information and it helps me be a better care provider.  How specialized our knowledge was driven home on a visit to my family doctor.  I began sharing about our experiences in Edmonton, discussing transplants, LVADs, ECMO, and all of the cool stuff we were exposed to.  He had to stop me and he explained that he didn't have a clue what I was talking about.  That shocked me.  I appreciated the honesty but it opened my eyes to the fact that we were not conventional patients.  The honesty that my family Doctor displayed however is not what we always encounter.  If we go to a walk in clinic or to the emergency room we have to give a medical history.  With my son, we typically get asked what his heart condition was prior to his transplant.  First off, who cares; the old heart is gone.  Why would it matter now?  Then we explain what the condition he had...Left Ventricular Non Compaction.  A few Doctors will know what it is or at least can take an educated guess. Others will just give you a blank stare and smile because they don't have a clue what you are talking about and they aren't going to admit they don't know.  It becomes an ego thing.

As I stated before, Doctors and Nurses are smart people.  They have a lot of knowledge that can be very helpful to us but it is time that the Doctors and Nurses acknowledge we have a lot of knowledge too.  We are experts.  Not in the traditional sense and sometimes we butcher Doctor speak a little but we do know what is going on and we definitely know when things aren't right.  This is why it is appropriate to occasionally knock Doctors off their lofty perches and make them realize they don't know everything and I am totally OK with them admitting that.  After all we are all human and we are supposed to be on the same team.

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