Turn the Mirror on Yourself

I’m at a conference – a very exciting conference – on palliative care, which is the field of medicine that focuses on the quality of life for patients with life-limiting or -threatening illnesses, as well as that of their caregivers. Sitting in a huge hall of huge people with huge ideas, I can barely keep still, can barely keep my eyes, ears, brain focused on the presentations before me because each one is so exciting, so inspirational, so thought-provoking, that a thousand other thoughts spin out from it: things I want to learn, to do, to teach. There is session upon session, lectures, discussions, questions, and an entire cavernous hall filled with posters, each jam-packed with its own inventory of results, conclusions, directions for future research. It’s so much that my brain begins to fog and stall, but there is so much still to see and explore and absorb that I try to push on, try to will the tendrils of curiosity to get back out there, pick up just a little bit more. Because I’ve only been to xx sessions, only been at this for xx hours, only experienced xx percent of what is here. When you look at the quantity of my experience, it’s just not enough.

Although the quality has been superb.

 

Oh.  

 

Right.

 

Still so much to learn.

When the End is Like the Beginning

In perhaps the greatest irony of my short career, after finishing my pediatrics residency I began a fellowship through the division of geriatrics. The actual training program is in Hospice and Palliative Medicine, but at my institution this subspecialty is housed under the auspices of Geriatric Medicine. As a result, the weekly didactic sessions focus on diseases to which I have given little thought since graduating from medical school. And my patients are older than before. Decades upon decades older.

I chose an adult-based program with the goal of gaining the broadest experience possible. There is also the reality that the board certification exam is the same no matter what flavor program (adult vs. pediatric) one has completed, and less than twenty percent of the material covered relates to children. I also have the sense that the utilization of hospice and palliative medicine is more pervasive and readily accepted within adult-focused fields. Witness the reaction I frequently receive when explaining my area of focus: “End-of-life care? But that’s not something that you need for children!” All the more evidence of how far we have to travel in establishing this field.

Regardless of my commitment, apprehensions swirled as my first day approached. I resurrected what I refer to as my “big people” stethoscope, whose diaphragm and bell easily dwarf tiny chests. A pre-emptive review of the hospice certification guidelines released a flood of pathophysiology that had lain dormant for years, as well as a reminder of why I had chosen kids over grown-ups.

But when I returned home on that first evening and my husband asked how it had felt to once again examine people my own size, it took me a beat to register the fact that I had spent the day attending to a completely different patient population than I was used to. And as my experience continues to unfold and I look more closely at my lack of discomfort (in fact my familiarity) with many of the clinical experiences, a symmetry has begun to emerge that is far more striking than I could – even during application season, while waging a campaign to convince an adult-centered program to accept a pediatrician – have predicted.

The first patient I encountered at the inpatient hospice was mostly unresponsive. She had moments of wakefulness, occasionally arousing to voice or touch, but mostly laid quiet and motionless. In other words, she was not so different from the intubated teenagers over whose beds I had kept vigil in the pediatric ICU. When patients lose the ability communicate and to make decisions regarding their care, family members must begin to parse the differences between their own preferences and what the patient would want. And with multiple family members involved, it often leads to disagreements. But that’s not unfamiliar territory to someone who is used to treating patients who are unable – legally and often developmentally – to make treatment decisions for themselves.

In fact, the whole-picture mentality is part of what drew me to pediatrics. No child exists in isolation; the home situation, education level and setting, and social milieu are just a few of the factors that inform and influence care. So, too, must we consider the surroundings and support of any patient whose life is limited by disease or drawing to a close. If they reside at home, who will assist with cooking, bathing, and medications? Who will help with travel, who will coordinate and communicate with the medical community and the outside world?

When patients lose the ability to swallow, how will we control their symptoms? Although progress tends to march in the opposite direction – instead of Child Life specialists coaching youngsters into swallowing Tic Tacs and working up to pills, our patients decline from swallowing tablets to liquids to relying on a few drops of concentrated medication placed under the tongue – both cases require consideration of which medications are available in which formulations, how accessibly, and at what cost.

And then there is the GI tract. He’s barely eaten, family members protest in both situations. Shouldn’t we do something about that? What will happen if he doesn’t? And the pooping. Toddler diets and opioids both tend to back people up. It’s second nature to me to discuss frequency, quality, and ways to prevent or alleviate discomfort related to moving or not moving one’s bowels.

But most important of all is the human connection. In pediatrics and in end-of-life care, I see patients and families who are frightened. Who feel frustrated and powerless. Who are looking for a guide. It’s not all rainbows and unicorns and happy endings. In fact, there are tears. So many tears. But whether I’ve got my big people stethoscope or my little one draped around my neck, whether I’m caring for a patient who has not yet learned to speak or one whose ability to do so is fading, I get to look at the whole picture, engage with a family, and do whatever I can to make to make their journey even just a little bit easier. No matter what the patient’s age, it feels like the most natural thing in the world.

My Target Guardian Angel

I like to think of myself as someone who generally has her sh*t together. Someone who is skilled at multitasking, who keeps her cool when things get stressful. Which is how I found myself at Target last week staring at one cart full of children squirting poop and tears and another piled high with cartons of diapers and wipes. Oh, and three huge containers of animal crackers mixed in there for good measure.

My plan had seemed foolproof. (Okay, at the very least, doable.) Feeling too guilty to have a huge order of mega-packs of diapers shipped when there was a store nearby and I had a day off from work, I had placed my order online and selected in-store pickup. The next day, I loaded up my sons, two-year-old Bean and three-month-old Teeny, both freshly fed and changed, and headed out. Bean’s naptime still loomed a good two hours away and Teeny usually snoozes happily on and off throughout the day, so conditions seemed ripe for success.

All went smoothly as we circled the store to grab a few small items and made our way through the checkout line. We headed over to customer service and the guy behind the counter pulled up our record then wheeled out a shopping cart filled with large boxes. He eyed the cart I was pushing, the main section of which held Teeny in his infant carrier and the front section of which held Bean. “Do you need help?” he asked halfheartedly, as I started loading the boxes underneath. I waved him back toward the counter where other customers had begun to line up because, I figured, I’ve got this.

The tipping point was when I tried to snug two of the containers of animal crackers in the front with Bean. He didn’t want to share his space – in fact, he suddenly wanted out of the cart right now – and began to whine, which escalated quickly to a wail. Teeny, who had woken up a few aisles back but until now had remained quiet, decided that he, too, was done with this expedition and would prefer to be held and fed. It was around this time that he also let out a poop explosion that not only blasted out of his onesie but, as I would later discover, puddled into the carrier, soaking the seat cushion and dripping through the cracks to the coat the plastic base.

I tried firmness and then bribery with Bean, trying to coax him into letting me stuff several items in the seat beside him as I simultaneously tried to shove another carton of diapers onto the shelf below. I’ll just squish everything together, I thought, as the boys’ cries continued to escalate. It will be fine, I reasoned, with less and less conviction.

“Can I help you?” a new voice asked. I looked up to see a petite woman eyeing our situation with concern.

“Oh no, it’s all right,” I said, waving a hand at the general chaos before me. “We’ll be fine.”

She frowned. “There’s no way you’re going to fit all of that. Here, I’ll wheel the other cart out to your car.”

“Are you sure?” I asked. “I mean, only if there’s nothing else that you need to do.”

“Only return a pair of shoes,” she said, “and I can do that after I help you.”

I sighed. The boys’ chorus continued. I acquiesced.

“I remember having young kids,” she said as we headed out to the parking lot.

I wanted to explain that it’s not usually like this. That during residency I resuscitated babies while swollen from belly to ankles as I carried my own; that I managed the ICU with no in-house fellow or attending. That I pride myself in working full time, raising my kids, and keeping our house and lives in order. That complications and multitasking are kind of my thing. And yet as we wheeled our way down one row of cars, stopping so that I could survey the lot in search of my vehicle, realizing only after I spotted it that I driven my husband’s car and not my own (and moments after that that while I was now searching for the correct model of car, the one I was currently steering us towards wasn’t actually ours), I felt like my sh*t couldn’t be less together. I hurried along, willing this interaction to end so I could return to at least pretending to be a competent parent and adult.

We parked the carts once we reached the right car, and I hustled the boys into their seats, promising Bean that he could have some animal crackers if he would just wait a moment longer. I began loading boxes into the trunk, praying that the woman wouldn’t notice that we were also barely going to be able to fit everything in the car around the clutter already there and wondering from which of my sons the scent of stool was now wafting.

As I thanked her, perhaps too hurriedly, the woman paused and held my gaze. “This was my random act of kindness.”

I must have given her my best What, now? look because she quickly pressed on. “One of my friends just lost a baby. Her other friends and I are doing random acts of kindness this week as a tribute.”

I don’t know what I said next. I’m not even sure what I felt. I know that the woman wished us well and that, sitting in the parking lot with the air conditioning blasting, no longer in a hurry, I ate animal crackers with Bean. I stripped Teeny down, sopping up the poop as well as I could but also knowing that whatever I missed could be washed out later. I nursed him until he calmed and then buckled him back into his seat. I drove my boys home. And I hugged them hard.

*Cross-posting with Mothers in Medicine

The Hunger Games: my article for JAMA

It took two years of writing drafts, editing, setting them aside and then starting over, but I was finally able to capture the stress and guilt I experienced when I had trouble nursing my first son and the ways it affected my practice as a pediatrician. It appeared in yesterday’s issue of the Journal of the American Medical Association. You can read it here.