Evidence of things not seen

For my co-residents and for little O

I am on retreat with my residency class. We are in an otherwise empty hotel on the Jersey Shore whose just-an-average-hotel-ness is intensified by the lonely quiet of the off season. I can imagine the bustle of summer filling up the space — trails of sand from little feet tracked in from the beach, brightly colored umbrellas stacked up on the deck, all the various sounds that people can make from within hotel rooms — but in the emptiness of winter the rooms seem tired. Why are hotels decorated in brown and beige? Are there people who are offended by color? Or is it just to mask wear and dust and dirt? Is the bored eye less likely to see?

There are few opportunities in my life to sleep in but today I could have slept until 8:30am, which as all parents of toddlers can attest, is the new noon. I went to bed early last night, in fact, because I wanted to experience the sensation of restedness this morning, the feeling of waking up out of readiness instead of necessity. But because the universe has both good wisdom and a good sense of humor, my eyes opened at 5:45am — the very time that my alarm will ring tomorrow morning — and I couldn’t go back to sleep. At first I was filled with a familiar sense of cynical irritation, the “why me” and “well isn’t that always the way” that residency has brought to my life despite the comforts and advantages that I enjoy. But then I thought to myself, how often do I get a chance to walk on the beach as the sun rises? According to weather.com the sun would be rising at 7:01AM. I put on several layers and slipped out of my shared room, through the muzak in the lobby, and out towards the ocean.

There was no one else in sight. I walked toward the ribbon of pink spreading up from the horizon. The hard, frozen sand up near the beach grasses gave way to the satisfying sink of each step into the wet shore. Several gulls circled and dipped. I looked for shells to bring home to E — not too small, not too sharp — and came across some of the odd hints that the ocean delivers up to us about itself. Cracked orange crab shells and dismembered legs half buried in the sand. Plant fronds of various colors and textures and widths. A foot-long brown spear that widened up to what looked like the end of a bone with some white and yellow flesh still attached — tooth? spine? tail? Breaking the smooth contour of the shoreline, a sudden small pile of sea sponge. I walked for an unknown distance. The sky became lighter and lighter beneath and around the layers of cloud. I wondered to myself when the sun would rise and what would mark the sun’s rising. I looked at my watch and it was 7:13, already past the appointed time. The part of my legs between the top of my boots and the bottom of my coat began to tingle and sting with cold and I turned to walk back to the hotel as the daylight continued to bleed into being around the edges of the sky.

*         *          *          *          *

How should I say this? I am worried about the state of health care. I am worried about the state of my own heart. I am worried about the way doctors are trained. I am worried about the way health is defined. I have been in and around hospitals for almost a decade at this point and I feel like I know less and less about how to help people achieve well-being. I feel like I’m getting better and better at keeping people alive and less and less good at helping them live well. I am maybe a little depressed or to use the somewhat more socially acceptable term, burned out.

I went into medicine with a desire to be with people in life’s most terrifying and difficult and potentially ecstatic moments. I wanted to understand the body, to understand more about life and illness and death. It’s a cliche but a deeply felt one: I wanted to be of service. I also wanted financial stability and the ability to provide for my children. I wanted a job that would be meaningful even on the worst days. But mainly I wanted to form deeply satisfying therapeutic relationships — it’s what I wrote my residency application essay about and it is still what I aspire to accomplish, somehow.

Now, almost ten years later, I spend more than 90% of my day in front of a computer. Sometimes the computer is actually physically located in between me and my patients and I have to crane my neck around its unsleeping eye to see them. I type through the majority of my clinical encounters. During a typical day on the wards, I see my patients for — at most — 5-10 minutes per day each. My day is filled with entering and reentering orders on the computer, writing endless admission notes and progress notes which recapitulate information that is already recorded elsewhere in the medical record, waiting on hold to talk to primary care doctors’ answering services, calling pharmacies and insurance companies for prior authorization, calling subspecialists to address each of the body’s organ systems, and coordinating the complex behemoth of a large tertiary care center to get tests and studies done for my patients. I work up to 28 (actually more like 30 but shhhh don’t tell) hours in a row every fourth night which wouldn’t bother me except that of those hours I spend at most 2-3 in total with patients. Patients turn over so quickly in the hospital that I might be responsible for the care of over 100 patients during a given week. During clinic hours I am perpetually beset with anxiety at how far behind I am, unable to get through a well child visit meaningfully in the 20 minute time frame allotted for this purpose and because of the fragmentary nature of residency scheduling, I often do not see these patients again. I want to form relationships with my patients, but at times it feels like talking to patients just takes time away from the tasks that need to be done for them. It’s crazy, but it’s true.

Some of these issues are unique to residency, which is time-limited (though formative), but surveys of post-residency physicians suggest that as a group, we are in trouble. In a much quoted and discussed survey of 24,000 physicians by Medscape in 2013, only 54% reported that they would choose medicine if they had it to do over again. Fourty-nine percent of physicians surveyed reported at least one symptom of burnout and 40% reported that they were burned out.

On the receiving end of medical care both as a patient and as a loved one advocating for sick family members, I know what it’s like to receive care from a system of overwhelmed and/or burned out providers. Test results are not communicated. Small details are missed. You wait 7 hours to speak with the doctor, then that person does not know some of the basic details of your case. The care you receive addresses a symptom or a part of the problem, but rarely the whole problem, and rarer still, you as a whole person. I fear being that kind of provider yet I have been that kind of provider despite my fervent desire to avoid it. There are just too many patients, too many data points, too many notes to read and write. There is so little time for relationships to form. There is no magic there.

Doctors are a hard group to sympathize with. Once we finish training (it’s long, but let’s face it, life is longer) most of us land in the top 10% if not the top 5% or 1%. Training is hard and the hours are long but we choose this life with full knowledge (as much as you can have full knowledge) of what we are getting into. We hold a lot of societal and political power and on an individual level,  in hundreds of thousands of exam rooms across the world, we have the power to examine, to question, to diagnose, to prescribe, to get it right and heal or get it wrong and harm. But if we as a society want to get the kind of health care that not only cures but heals, we are going to have to look at how doctors feel, how they are trained, how their work-life is organized, what we ask of them, and how we support them in their work.

*          *          *          *          *

If you work around sick children long enough, there will be a death that crushes you, that doesn’t let go, that you can’t let go of. Little O came into my care last month and a few hours later passed away under the most difficult of circumstances. Oddly enough, I don’t remember her name — perhaps because the intensity of our efforts to keep her alive and the adrenaline coursing through my body erased it from my data banks, perhaps because I have been afraid to reopen her chart. I think of her as little O, the little O of her mouth, the round moon of her little face which I saw for weeks every time I closed my eyes. If I will it, I can hear her mother’s screams in my mind’s ear as vivid as the sounds of my household humming around me as I write: “No es justo! No es justo!”

I want to make contact with her family, to tell them that I feel for them, that I think of her, that even though our lives touched for only a few short hours, I feel the weight of their loss. I have never done such a thing before and I’m not sure if it is even appropriate. Who should I ask? Do I need to get permission from my program director? Do I need to run it by risk management? In the end, the question comes down to one of the nature of my relationship to that baby and her family. Was there one? And if so, what was it? I have been training for many years but have received no apprenticeship in this most important aspect of my profession.

So many hundreds of children pass through my life and I through theirs and we are like ghosts to each other. There are so many layers between me and my patients, layers of bureaucracy, legality, scheduling, vulnerability and power traded back and forth in a complicated dance. Was this always so? Sometimes I fantasize about becoming a small-town doctor, about being part of the community I serve, of knowing my patients and allowing them to know me.

I will likely never send a card or see little O’s family again, but this is what I would want to tell them: I will hold your daughter in my heart forever.

*          *          *           *          *

Meanwhile, back at retreat, I am surrounded by the loveliest people. My co-residents are intelligent, accomplished, funny, and kind. To a person they are motivated by the desire to be of service. They are scientists and humanitarians who hold as sacred the trust placed in them by children and their families. They are also spouses and parents and children and friends who struggle to balance the commitments they have made in so many domains in their lives. I feel lucky to know them and I think children are lucky to have them as their doctors.

What I wish for them and for myself as doctors, what I wish for myself as a patient, for my patients, and for my loved ones who are someone else’s patients, is a system that allows us to be healers, that helps us to heal. I want a system that allows me to express my compassion, that gives me the space and time to care for people in a meaningful way. Unrealistic? Selfish? Possible? I plan to find out.

beachmorning

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6 thoughts on “Evidence of things not seen

  1. This is spectacular. I just left the hospital and am sitting here, trying to read something and blinking blurry tears out of my eyes. Thank you for expressing so poignantly what so many of my colleagues have stared at me, confused, when I have said: that THESE stories matter, that these STORIES matter, that these stories MATTER. Praying that you would be encountered by joy, and that we all would.

  2. Wow. This post made me cry. Finished peds residency in 2010 (at your program, I’m pretty sure) and thought of all of the “Little Os” from training. I still wake from sleep and mourn them. I had my first baby in fellowship and really admire you and others who have and raise children in residency–I’ve never had to leave my own little E for in-house call, and the very thought of it makes me question my ability to have done it with the strength and grace of my co-residents who did. Every post of yours that I have read really resonates with me–thank you for telling our stories.

    • Thanks for reading, Jessica! I’m glad that this piece resonated with you. I know what you mean about waking from sleep and mourning them. To me it feels like a privilege in an odd way, an honor to hold them sacred in my heart, though of course I would have wanted so much for their lives to continue in health. As far as parenthood in residency goes, I think it’s like parenthood in general — you do the impossible for your children. Thanks again for reading and taking the time to write back!

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