The greatest foible I have seen from the medical community
is to set forth the expectation that our patients will follow our advice based primarily on our authority and expertise while we disregard their values and
expectations. We attempt to define health on behalf of our patients instead of
allowing them to find and define it for themselves. Unless there is an overt
threat to public health, our culture honors a laissez faire
approach to honoring personal health choices and their consequences so it’s up to the patient to ultimately set their
goals.
The healthiest person I have ever taken care of is a 92 year
old lady who presented to me mid-summer for a follow-up visit. She had been in
the hospital for a worsening episode of congestive heart failure (CHF) and her regular
primary care provider was not available to see her post-discharge. I was the proxy
doc for the day which happens in a busy practice with multiple partners and schedules. I didn’t have rapport with her nor did I know what her normal looked
like but she needed to be seen. These visits can be some of the most challenging because each physician
still has their own style and approach. In addition, a patient that looks
terrible to the patient-naive physician actually looks better according to their more
familiar provider.
Although I had never met her before, it was clear that
something else was transpiring inside her frail body. She didn’t have any
swelling in her legs and was breathing comfortably, but she was yellow. Her paper-thin
skin had a tinge of the extruded hepatic substance called bilirubin, a byproduct
from the breakdown of red blood cells. Her eyes looked similar, otherwise known
as scleral icterus. She denied pain. The presentation of “painless jaundice”
means only one thing until proven otherwise: pancreatic cancer. We talked for a
bit with both her son and daughter, concluding that her CHF had dramatically
improved but that her jaundice was of significant concern.
I ordered the laboratory tests, confirming that she had an obstructive
process inside her biliary tract. She was readmitted into the hospital. The CT
scan demonstrated the mass deep inside her belly. When posed with the question
about what to do next, she and her family bravely opted for what I was hoping
they would do: nothing. She did undergo a stenting procedure where a small
plastic tube is inserted retrograde into the bile duct via an upper GI scope,
allowing for better drainage of the liver, but she otherwise was at peace to go
home on hospice.
I saw her one more time before she died. She had developed
swelling in one of her legs. It was painful and her family wanted to know what
could be done without too much intervention or trouble. It was a deep venous
thrombosis (DVT), otherwise known as a blood clot, in her left leg. The
preferred treatment is an injectable blood thinner which she used over the next 10
days to make her more comfortable as the body slowly resorbed the clot.
She eventually switched to aspirin and, as far as I know, did not experience a recurrence.
This last visit was the inspiring visit that led me to
believe that patients define health, not physicians. When I saw her that day, she was glowing, not from her skin color but from her pure essence. She portrayed a feeling of contentment I rarely see during a
visit with anyone, let alone a terminal patient. Yes, the cancer was eating her from the inside out and causing her blood
factors to inappropriately form clots in her legs but she told me how she was
doing. Every Friday, her grandchildren still came over to play Euchre. She was visited
once a week by her priest. She continued to read her Bible and do devotions. She
was happy… and healthy.
Just two days before Christmas, my patient reached her final moment and died in the arms of her beloved son surrounded by loved ones. Her family brought over one of the traditional Catholic obituaries on a small bookmark-like card. I cherish these small but meaningful trinkets and reflect upon them in times of concern or self-questioning of why I went into medicine. You see, patients are ready to share their goals of health with us. We just need to be ready and open to listen to them and help define it.