At the
beginning of this academic year, I started taking part in a program called the
Family-Centered Experience. I noticed a
flyer about it at one of my clinic visits over the summer and applied for, and
was accepted, into the program.
The
program is “a required course in the University of Michigan Medical School
curriculum. Through FCE, first- and
second-year students engage in understanding the personal side of medicine
through firsthand encounters with patients and their families” (http://www.med.umich.edu/lrc/fce/).
The
patient taking part in the program has to have a chronic illness. And normally the program requires a two year
commitment, but I could only commit to this year as I plan to finish my
dissertation this summer and move elsewhere.
However, several students were “orphaned” (for whatever reason, like the
patient moved), and needed a new patient for one year, so I was paired up with
two students that needed to go through their second year with a new
patient.
“Families
who volunteer to participate in FCE open their lives and give our students
invaluable training that cannot be duplicated in any classroom or clinic. In the role of mentor, volunteer families
teach students how to see the patient as a whole person and how illness affects
all aspects of their daily lives, beyond just the diagnosis of their disease. Our doctors-in-training apply what they learn
from these mentors to their clinical training and beyond” (http://www.med.umich.edu/lrc/fce/).
I was
amazed that such a program existed, and at the hospital where I receive the
majority of my medical care. It seems to
me like a rather evolved sense of patient care to realize how important getting
to know patients as people really is.
These
aren’t scenarios or role plays. These
are real doctors and real patients.
And it’s
not just about the illness or the specialty.
It’s about the patient. And it’s
not just about the physical. It’s about
quality of life.
I think
it’s important for doctors to learn these things early in their careers. By the time they are actually doctors
practicing on their own, it’s too late to develop a sense of patients as human
beings. If you’ve been taught to look at
patients as their registration numbers or their illnesses, that’s how you are
going to treat them. But it shouldn’t,
and doesn’t, have to be that way.
Doctors can walk the walk and talk the talk medically, but that doesn’t
mean they’ll be able to relate to patients in any meaningful way.
There is a
very helpful guidebook that is provided to both patients and med students. We didn’t work directly off of it because of
the unique situation of meeting me in their second year. But it provided a good idea of what the
program is about.
For our
first visit, the med students came to my apartment and spoke to my boyfriend
and I. I shared my story with them, they
asked questions, and then they came to one of my rheumatologist
appointments. It felt a little strange as
I don’t normally take anyone to my appointments with me, but at the very least,
they provided good company while I waited for my appointment to start.
It’s
caused me to look at my experiences as a patient, both positive and negative,
in a critical way.
This has
been a learning experience for me, too.
My rheumatologist measured the width of my jaw opening. He’s never done that before. Mine was 20 centimeters. Then he measured one of the med
students. He was in the normal range,
which is 35 to 50 centimeters. (At least now I can’t be accused of having a big
mouth)
Then he
tested the range of motion of my elbows and hands. He had the other med student stand up and do
the same. I was shocked to see how
limited my range of motion was compared to her.
I’ve never seen myself in comparison to someone “normal” like that
before. It was really striking. There’s no denying that I have these
illnesses and that they have an impact on my daily life. It’s funny that that’s the lesson I take away
from this experience, because I guess I was already supposed to get the fact
that I’m chronically ill.
He also
asked me how long it takes me to get going in the morning. I told him that it takes about an hour before
I can be functional enough to really face the day. Then he asked both med students how long it
takes them. They both thought for a
minute and said they didn’t really have to think about that. Maybe it takes them five minutes or so. Imagine, my rheumatologist said, being so
stiff that it takes you an hour, not even just to get clothes on, but an hour
to get just enough energy to think about getting clothes on.
This has
made me look at my illnesses in a new light.
They are powerful. They affect
all facets of my life, whether I admit they do or not. But it wasn’t until I was given the
opportunity to look from an outsider’s view that I realized how much different
my life is from someone who is my age and not sick. There is so much less to think and worry
about. They can stay up until three a.m.
studying, get up at six a.m. and face a 12-hour day ahead without second
thought.
And we
wonder why doctors can seem so clueless about our illnesses, when, even we are,
as patients, sometimes clueless about our own illnesses. I guess since I have been feeling physically
okay, I was a bit in denial about the fact that these illnesses are a part of
my life. But they are and they will be
forever.
And we
talked about a lot of illness experiences.
The fact that medications are so expensive and that it is very hard for
patients to learn to self-inject. It was
really the first time that my rheumatologist validated some of these more
emotionally-laden experiences. It’s nice
to know that he’s thinking about these things.
And it encouraged me that he stressed that med students should be aware
of these issues, as well.
He said he
hoped that by learning about my experiences would make these med students more
compassionate than doctors like him. And
I told him that comparatively, whether he is willing to admit it or not, he is
pretty high on the compassion list as far as doctors go.
And I’d
like to think that he learned something too, that he sees the impact that the
way he cares for his patients will impact the way this generation of med
students, the next generation of doctors, will care for their patients.
And I
think programs like these are great.
They provide experiences that can’t be learned or taught inside the
classroom. There should be more of
them. I think something like this should
be a standard curriculum in any medical school education. And it needs more awareness within U of M, as
my rheumatologist had never heard of the program before, despite the fact that
I know he works closely with med students.
And by
requiring students to make home visits and attend doctors’ appointments with
patients, allows students to come down to the patient level, and experience
things on the ground and in the trenches, which as doctors, they may never get
to experience otherwise.
I want the
experiences I’ve had with chronic illness to count for something, and whether
I’m impacting doctors or patients, I believe that we have to have a holistic
approach when it comes to doctoring.
We’re all in this together, even though sometimes it doesn’t feel that
way. When we have to deal with cranky
nurses and stupid insurance companies, the human side gets lost. Patients are people. And doctors are people, too. We are the same species, even though it
sometimes feels like we are from different planets. The doctor-patient relationship should be a
mutually-beneficial and symbiotic relationship.
I’m
grateful that I had this opportunity to share my experiences. I hope that my students felt they learned
something from me. I know I’m not
necessarily the “typical” patient. And
it was nice to see doctors on the other side of the continuum, who are new and
eager and ready to learn, who are not totally set in their ways and are still
moldable. It gives me hope that the next
generation of doctors will see the importance of compassionate care and getting
to know their patients on a deeper level than “Patient is a 27-year-old Caucasian
female with lupus and rheumatoid arthritis.”
Every patient
has a story. And those stories deserve
to be heard.
You are a great teacher, even though you didn't ask for the lesson plans life handed you. We are so grateful to have you as part of the FCE Leslie. Thank YOU.
ReplyDeleteThis is a really great thing, and something I am glad to find out exists. Good for you for taking part, hopefully the programme will benefit many people in the future.
ReplyDeleteHayley-Eszti x
www.hayleyeszti.blogspot.com
seeing the patient as a whole person?? What a concept! Glad some medical schools are getting it.
ReplyDeleteBtw, how do you measure your jaw opening? The distance between the front upper and lower teeth with an open mouth? In which case, I have you beat: 3cm.
Still manage to have a big mouth,though. ;)
Both of my children are doctors in training and had a similar program, tho not as long as yours. Since I have lived with lupus for over 33 years, I am grateful for this as well. It is such a hopeful sign that medical training is becoming more human, both for the student doctors and for their patients.
ReplyDeleteIf the allopathic medical community wants to remain relevant in the lives of patients, they will need to recognize that there is life outside of the examining room and more complicated than swallowing a pill or taking an injection. I'm glad to hear there are programs like these to help them bridge this immense gap in health "care" delivery.
ReplyDeleteGreat post. I will be experiencing a few of these issues as well..
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