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 Expert Patient

After a few years with a chronic illness we certainly become experienced, but that alone does not make us experts.  Achieving expert status takes work.

                                We Are Experienced

Does it really take 10,000 hours to become expert? In the case of illness endurance alone is not enough.  You've got to go out of your way to find out more. Educate yourself and you may become a knowledge expert, a support expert or maybe a connector or aggregator who puts information and people together for everyone's good.

I have found active Yahoo Groups in specialized areas. Sometimes the level of information available is due to one dedicated person.  Often it is core group which patiently covers the topics over and over as new people come along with an acute problem, use the advice and move on as their problems resolve. It's hard to keep a group going long term and many of them are gone when you go back a few years later.

I was lucky to find some real experts who saw me through two bouts of shingles.  

Illustration from Atlas of Human Anatomy, Frank Netter MD. Illustration showing how shingles spreads in bands (Dermatomes) on the body

When I went looking for a group with information about Fuchs Dystrophy I think I found the motherlode at a Yahoo group called fuchsfriends which is "a place of support and information for people with Fuchs' corneal endothelial dystrophy"

                                                 ehealthwall.com

These "patient experts" are so much help because they not only have a narrow focus on a specific disease but also they also have personal experience.  I am a member of another group where the moderator's signature is "Gina, Not an MD". Her advice is so good that the disclaimer is necessary. (Of course all such groups come with an additional disclaimer saying advice is not to be construed as medical advice)

Online support is a valuable commodity and I am lucky to be in a very long term supportive group at ra-factor.  Gilly, the group owner and "list mom", is one of the most empathic and consistent people I know.

                               Valuable commodity  dhotw.com

She said she does it because she can't imagine not doing it. Even on vacation she wonders how we all are doing.  She says "It's nice to talk to people, like a family" And after many years of conversation with these friends who "get it" because their problems have similarities to mine I would like to go visit them all in real life.

It would be quite a journey - to the UK, Australia, Canada and all over the US. Where but online would we ever have met and shared so much ?

And here we all are (approximately):

There are complaints about this map. More people wanted to be the cat than anything. Others said "Where are the dogs?" Our Texas member said we might as well just put a gun on Texas based on some current political moves.

                              A favourite "Welcome to the Group" gif