I’ve taught
a lot about chronic conditions to medical students and rehab students over the
past 15 years, partially because that is what I research – mainly spinal cord
diseases, and partially because I am one who has a spinal cord disease. We talk
in our sessions about what does it mean to provide health care to patients with
ongoing conditions and the term patient centred care is thrown around. Is the
patient the driver of their health care? In most ways, yes. We should encourage
patients to take initiative in their health care. They should ask questions,
learn more about their conditions through trustworthy sources and include
family and friends into their circle of care where they can. Patient centred
care shouldn’t just happen in a health care setting but begin in the home with
making healthy choices in food, exercise and people. We hope that by doing
these things, their lives will be made optimal under the circumstances. We know
that the more one feels a sense of control and have autonomy, the better the
quality of life there is.
This all
sounds so well and good but what happens when a chronic condition becomes more
serious or a life-threatening illness creeps in. Where does patient centred
care go then? Is the patient always in charge? Interestingly, my old me may
have said yes, but now I may say, no. I was diagnosed with cancer that has
spread to the lymph nodes and suddenly my world changed quite quickly. Prior to
this, I felt I was in charge of my health care. I mainly chose the doctors I
wanted to see. I was well connected because of my profession. Although life
wasn’t easy, my health care for most part felt like under my control.
After the
cancer diagnosis, appointments were made for me. I was constantly being
notified about this test or that scan or another doctor to see. Even I, who
works and teaches in the system plus decades of personal experience, felt
overwhelmed. I was suddenly swept on to a train that just went steamrolling
down the track and I couldn’t stop it or get off. I had no idea how to manage
it. I just had to go along for the ride. The very first doctor I saw said, “this
will take about a year to go through.” It’s like he said, “welcome aboard, you
are going for a year long journey and we’ll take you there. Just sit back and
let us take care of you.” Unfortunately, I’m only ½ way there. Or I could say,
hey, I am ½ way there!
As I have
waited in clinics, laid in a scanner or received radiation I have had more
time to think and I have been wondering a bit more about this patient centred
care concept. What we talk about with students may be suitable for stable-ish
chronic conditions but may not work so well for conditions like cancer. This is
a scary condition and the treatments still seem barbaric (blasting the body
with horrible chemicals or radiation). However, the people that take care of people
with cancer do know what they are doing. Yes, it feels completely out of my
control but so is the disease. I cannot do it and I cannot be in charge. I must
let the folks at the cancer agency take over my care. They do it well and they
do it sensitively. The system is so well run with everything orchestrated
behind my back. The surgeon and oncologists are on the same database. They have
team meetings where my care has been discussed with genuine thought and
consideration to my pre-existing issues. Sometimes I get frustrated with the
little notices that come in the mail, thinking it is so last century, but it
works. Am I really mad at these notices, or am I mad at the cancer that has put
me on this train ride for a while? Am I mad losing control over my own care?
Probably yes. However I do think I am actually getting patient centred care. I
could never have organized the kind of care that I received on my own. I needed
the system to just take charge. Is it perfect? No, but I am impressed with how it
has gone. The way the different departments and clinicians communicate, overall
have been great. The regular health care system could learn a lot from the BC
Cancer Agency.
It will be
interesting how this experience will inform how I lead my small medical school
groups again starting in June. I’m curious too what they will tell me as they
shift from doing Family Medicine experiences to their acute ward experiences. How will they figure out when their patient needs to take more autonomy and encourage that and when should docs take more initiative and control over a patient's situation? As a medical educator I love it that I am encouraged to be a life long
learner, just as we tell our students to be life long learners.
