It's Hard To Teach Empathy

Everything is changing in medicine, more now than ever, and change is hard. New technology is not always welcomed by people who have to use it, new research comes out so fast it is impossible to keep up, methods of payment are tedious to say the least in some countries, and now patients are changing too. These new patients want to be involved in their own care and are trying to equip themselves to do it. 

Change can be good

It's hard for all of us to do this. To help us I like this unofficial slogan of the Marines  "Adapt. Improvise. Overcome." We can use it for ePatient Boot Camp.

ePatient

The "E" s I propose for health care professionals are these:

Encourage, Empathize, Educate, Engage

Some examples of situations where the above qualities were not evident follow below. These situations are hopefully few and far between but always hard to forget.

My wonderful friend has a health problem that takes a lot of self care, doctor visits and treatment. 

She has found a great medical team which works with her and often her doctors have Fellows training with them. If she is feeling good enough the doctor will direct the Fellow to examine her as a learning experience for him or her.

Recently a Fellow, after examining her and looking at the chart, described her condition as stable.  Her response: "Don't you be saying that about me," and she proceeded to lecture him about the profound changes that her illness has had on her life and how much she has had to adapt, even to the extent of moving from a two-story house to a bungalow.  

She said "It's hard to have your life upended. I've had six esophageal spasms since I was here last not to even mention other symptoms. This is not stable"  Her doctor came in at the tail end and said, "Aah, I see he described you as stable."

Here's a snapshot of a moment with a specialist who I see. He was teaching a group of students and talking about the effects of wrist fusion. He said to the students "Don't worry about personal care. They'll figure it out." 

I told my "unstable" friend the story and she said "That's obscene" How little effort it would take to tell these future surgeons this instead: "Some patients may worry about personal care. You could suggest they talk to an occupational therapist if it continues to be a problem."

Her friend Terri who lives in a small town went to see her rheumatologist. He was sitting in a very relaxed way at his desk, with his hands behind his head. She offered him some pamphlets about Sjogren's Syndrome. He stood up, said "Wait a minute" and walked over to his diploma on the wall. He tapped it and then said "Who's the doctor here?"

My favourite doctor says the hardest thing to teach is empathy. Perhaps more patient involvement in medical education would be helpful. Maybe learning first hand through narrative medicine about the Burden of Treatment (by Dr Victor Montori) for patients would help some professionals to take this step.

Burden of Treatment

Article: Clinical Empathy as Emotional Labor in the Physician-Patient Relationship

The Tremendous Effort To Look Normal

At the MedCity ENGAGE Conference recently Dr. Victor Montori made this statement about chronically ill patients. "They look normal because of their tremendous effort to look normal."

@AfternoonNapper alerted me to the closing speech of this conference given by Dr. Montori, whose name is strongly associated with the concept of the  "burden of care" that is shouldered by chronically ill patients.  I am sure that all of you with one or more complicated conditions said at this point "I know exactly what you mean by that."  @AfternoonNapper also says "Montori has emerged as a general in the Spoonie army"

                                             General of the Spoonie Army            AMcKinnon

Another term that I had never heard until I started to read medical papers and articles was CCC which stands for Complex Chronic Conditions.  There are few organizations that acknowledge this reality and the efforts necessary for patients who are trying to do less and still maintain good health.  I found one example in BridgePoint Health, as an organization that is trying to use a new strategy to deal with these issues by using "nimble and flexible" strategies through collaborations that put the patient at the center of care.

We need to try to advance to minimally disruptive care with patient centered strategies and it is possible to do it.  As an example: I went to a hospital once for pre-op appointments and instead of being sent all over the hospital there was a central core area with patients in little rooms all around the room.  The various blood tests and info gathering that had to occur were done by a team that circulated around the perimeter with great efficiency as the patients waited in one place.  That's a pretty basic example yet it made the afternoon of appointments so much less stressful.

                                         Patient centered care (me in the middle)

The issues of compliance and concordance in my last blog post could be improved by making the care process easier and more coordinated.

I was working on this post for a few days and I went back to twitter to see what Afternoon Napper had been saying, only to see this link at the top of my Tweet stream. Re-imagining Healthcare: The Northwest Territories Transitions to an Integrated Chronic Disease Management Strategy. Since chronic disease accounts for 70% of deaths and 50% of hospital stays in that area, a new strategy for dealing with chronic disease is seen as necessary and this paper details efforts in the Northwest Territories.

Unsurprisingly Afternoon Napper had a lot to say and pointed the way to another blog about Minimally Disruptive Medicine. I liked the Goldilocks synonym best of course. 

                                                         This porridge is too hot

In this interesting blog by Carolyn Thomas of Heart Sisters you can read more about burden of treatment and also on Marianna Paulson's Rheumful of Tips blog.  I did not expect to find so much information on this topic - clearly I am behind the curve.

The whole paper is here: Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice.