There is this utterly sensible trend in health care where the providers of the highest acuity care seem to have the least first hand experience as patients. The first time a coworker commented “Sometimes I wish I’d been in the hospital so I’d know what having an IV placed felt like,” I was flabbergasted. Are there adult people that have avoided IV sticks? Yes, many. It makes sense that my colleagues are largely younger and healthier people, considering how tough the gig is on a body. Poor sleep habits, stress, inflexible schedules, repetitive back wrenching… it’s in the job description. But this lack of direct experience opens an even wider gap of understanding between provider and patient. They have no shared medical experiences. And medical experiences aren’t about the pain of the IV stick. It’s the subordination to your providers, a previously robust identity reduced to your name and birth date on your bracelet (plus fall risk meaning now you can’t even toilet yourself). How people cope with what we take away from them defines what kind of patient they appear to be.
So on this Valentine’s Day, Galentines for my feminist warriors, day of grumpiferous mourning for me, a tweet from Lucy Kalanithi reminded me to urge all health care people to read Paul Kalanithi’s When Breath Becomes Air. In this memoir Paul is able to recount in what feels like real time losing his identity as a promising neurosurgeon to cancer. His doctor self gives way and he becomes the patient. Being previously a young and healthy person, and falling victim to the trick all healthy people play on themselves (the way I am now is the way I will always be), his realization that his is terribly ill is heartbreaking. The chapter in which he discusses his scientific mind’s understanding of survival curves, trying to square the data with his individual, not-yet-a-statistic mortality, it rings so bitterly true.
Here is Lucy Kalanithi’s beautiful valentine to him. It speaks to living with loss. If you’re on twitter follow her post haste (@rocketgirlmd).
What Lucy says about grief and loss…blarg my heart. We have been a house in mourning for the past 14 months. My mother lost her true love and partner. I lost my father. I sometimes feel like I killed my father since it was my chest compressions that sent him out of this world, but that’s another post. If dad were here this February 14th I sure as shit would be sitting as his feet complaining about the quality of available suitors while he half listened until I wound myself down, then I’d get a “you’re fine sweetie girl”and a pat on the back and I would be fine. And he and mom would watch garbage TV and laugh at really stupid jokes and drink wine out of tumblers and genuinely enjoy one another.
In remembrance of the love between my parents I’m attaching my eulogy. All of us Crawfords were so lucky to get so very much of him.
So to bring it on back health care people of the world, depending on the statistics you go by we are somewhere between 60-80% likely to have someone’s loved one in our care as their life ends. Think about what it felt like to be Paul, what it feels like to be Lucy when someone asks to bring their baby into the ICU. Or tapes pictures all over the walls. Or changes their mind about end of life care 16 times. People often need guidance, and we can draw from training and experience to offer it. Maybe what has happened in your own life, or a book you read, is helpful. Keep that. Get rid of the rest. Like I said at the beginning: It’s a tough gig.