Wednesday, December 5, 2012

Revealing What You Think: Medicine and Compassion

In a recent Rheumatology News article "Kiss My...," Dr. Larry Greenbaum writes of his frustration with an older RA patient.  There are no editorial comments or comments from other rheumatologists indicating support or criticism of what he writes about this patient or that he bills him more. (Update: Apparently Rheumatology News is deleting responses from patients.)

Author of the blog RA Warrior and patient advocate Kelly Young calls Greenbaum out on his attitude in her post "Don't Kiss Me," but indicates that she feels torn about writing about the article.  I appreciate that she doesn't want to create conflict between patients and doctors, but like her, I think that some not-so-uncommon attitudes need to be revealed because they affect our lives far beyond that medical appointment.  We can receive help and compassion that we can carry with us in our lives, or we receive dismissal in the place of reassurance, continued pain instead of concrete medical help, loss of hope rather than empowerment.

We can't close a door on our physical pain and walk away from it, and the words people speak have a power to them.  A student once said to me that other instructors don't realize the power they have, how they can make someone feel absolute despair with their words, or the opposite.  Doctors have this same power, and it is insolent if you're a doctor to pretend you don't.  (Edit: I mean ALL doctors here.) With someone's health, with an illness that carries itself into every part of daily life, you cannot be cavalier.  There are few inflammatory arthritis patients who don't have to give up something, who don't experience loss and grief.

As I wrote in a comment on Kelly's post, part of me is glad Greenbaum reveals what he thinks because it shows how far we have to go.  Unspoken attitudes are more difficult to address, even if common. I too am dismayed by the writer's attitude and tone.  It's also unethical to bill patients (and thereby often insurance or taxpayers as well as the patient) more because you don't like them.  That's the doctor's personal issue to deal with.  It's sad when doctors are so burned out that the extra time some patients require cause them to lose patience and compassion.

It's up to the doctor to listen empathetically but to redirect if time is running short and to set a couple of concrete goals that are most important to the patient before the end of the appointment, whether that's evaluation of new symptoms, pain control, investigation of DMARDs, etc.  It sounds to me like one of the patient's primary goals for the appointment was finding an empathetic rheumatologist, and that's important for a first appointment.  That the patient joked and that the doctor did not get the joke, even if they don't share the same sense of humor, indicates a fundamental lack of connection.

For those doctors want to practice more compassion, it seems like it should come more easily.  Connect with us and never allow yourself to objectify us, to reduce us only to a case study.  Let go of the disdain you show as we describe our symptoms or pain and try to attribute the causes for them.  We're all the same--we're people first, both doctors and patients. Degrees and status don't make one person better than another, than the patient or the person who bags your groceries or mows your lawn.  (And just because I use a wheelchair doesn't mean I lack a context, a life, an education, friends, even if you can't imagine it.)  Of course, a certain percent of people will never have compassion; they don't want to have it.  We probably have to write them off.  But I think and hope that most people do want to increase theirs.

After reading Greenbaum's article, I feel that I better understand the lack of compassion in the rheumatology department of our children's hospital and the attitudes expressed to us first by the staff and then by the doctor.  They don't understand his pain; they don't believe his pain. That's all there is to it.  This is the general climate of rheumatology as well as other specialties.

Wednesday, October 31, 2012

Assistance Dog Blog Carnival: Moments of Epiphany

This post is written for the Assistance Dog Blog Carnival (  Pain dictates how I physically write and constrains my thoughts, making me far more parsimonious.  I have not blogged in several years and have lost my writing voice.  

Moments of Epiphany: My First Eighteen Months with a Service Dog

Epiphany 1.  I was attacked in my home, more than once.  One of my attackers, asking me, “Where is your God now?” Short on oxygen, skeptic that I am, I said, “He is here, can’t you see him?”  The angel Gabriel, so bright, to my left.  Epiphany.

Epiphany 2.  I needed my service dog now; I could no longer wait.  At least I would not be alone.  At least I would have help.  No more missed lunches because of limited reach or days spent in bed because I picked up a dropped item, my urine backing into my kidneys and causing painful infections because I could not get enough leverage to get myself up.  Now my dog would also be needed for PTSD.

Epiphany 3.  The breeder placed him in my lap.  His golden eyes met mine, he turning to see me.  Flirtatious and playful.  He was mine, and I knew.  I considered the other potential match carefully, but clearly this one wanted to go home with us.  He snoozed in my arms.  Gabriel.

Epiphany 4.  On the long drive to the trainer that night, my dog licked my arm.  I offered him a sip of water from a cup.  Later, he licked my arm again, clearly using this signal to indicate thirst.  I again offered the water.  We were communicating.  Few know this power.  No one knows how intensely and nonverbally a service dog team communicates except the team themselves.  I know when he recognizes someone, when he’s afraid, when he does not like something someone says about him.  I know his longings.  To others, he is merely standing or looking, his nose twitching.  But I read him like a book.

Epiphany 5.  The trainer, someone who had become a close friend, had grabbed him up so that he slid back and slammed his head into a cabinet because he sniffed a crumb on the floor.  The next day she attacked him in my bedroom because he did not stay as instructed and ran away in fear.  He screamed and did not stop screaming.  She left with him.  My heart, like a heart attack, like I was rent in two.  My husband traveled a day to get him.  With my dog returned to my arms, at first afraid even of me, I dreamed.  A golden angel, as from an illuminated manuscript, and a song of comfort: “Feel the rush of an angel.”  Epiphany.  I could do this myself, with help from my family.  I did not have to have someone else train him.

Epiphany 6.  Lessons in intelligent disobedience. Sometimes he crosses his body in front of my wheelchair, forcing me to stop so rapidly that sometimes I bump him.  Sometimes he stands in front of me in public and refuses to lie down, or does not leave enough clearance for others to get around, despite my commands otherwise.  I am embarrassed but cannot figure out this behavior until one day it hits me with a force.  Ever since someone grabbed my damaged shoulder, ever since someone knocked into me in the movie theater, hard, every time I am at risk from others, every time I am afraid of a man, he positions himself so that I cannot get injured.  He knows when there’s very little room and others will not be careful, injuring me.  He will also block if I do not see a stranger approaching.  I thought I would have to teach him these very difficult tasks somehow, eventually.  I didn’t. 

Epiphany 7.  He has been with me every day for over a year.  I don’t get severe kidney infections anymore. I am not incapacitated for days because I drop my car keys or the phone and have to retrieve them (even with PT and reachers, I can never master bending over without a major pain flare). People don’t bump into me in the wheelchair, causing me further injury.  We’ve done it.  We’re not a perfect team.  He doesn’t like to come back inside when the weather’s good.  I give him the wrong commands by mistake when I get tired.  But yes, he’s an angel.