Maybe Later We’ll See

I could go on and on about the ways that becoming a mother made me a better doctor. It’s much easier to build rapport with families when you can throw a genuine, understanding “yup, my kids do that, too!” into the conversation. It helps me to give much better, more realistic, advice, especially to parents of very young children. (How I wish I could apologize to every new mother whom I advised to just “sleep when the baby sleeps.”) Not to mention the fact that I didn’t need to study developmental milestones for my General Pediatrics boards.

But until recently, I felt hard-pressed to list any ways in which being a doctor has made me a better mother. It has made me a more tired mother, a more guilt-laden mother, a mother who excels at multi-tasking, though I’m not entirely certain that that’s a good thing. Because of my specialty, my kids are growing up with an exorbitant emphasis on safety (Safe sleep habits! Rear-facing car seats past age 2! No riding down slides on grown-ups’ laps!). This will likely make their lives slightly less exciting than they would be otherwise, and might even be a detriment to their social skills; at two and a half, Bean regularly points to people biking through our neighborhood and shouts, “Ridin’ bike not wearin’ helmet! Need get helmet!”

The other day, however, I witnessed an interaction that shook me and has already changed, in no small way, an aspect of my parenting. As a fellow in Hospice & Palliative Medicine, I frequently participate in family meetings and discussions surrounding goals of care. I’m there when people learn that their health or that of their loved one is declining, that the remaining time is likely measured in weeks to months; when they hear for the first time that their end-stage organ failure isn’t simply a chronic condition but one that will drastically shorten their life. When they learn that they are no longer a candidate for cure-directed treatment. Oftentimes I am the one to deliver these emotional blows. Regardless, whenever I am involved, my job is to help patients and families understand their clinical conditions and the options that remain – the pros and cons, best- and worst-case scenarios. Their decisions and goals don’t have to make sense to me or coincide with my own values and beliefs, but my job is to try to ensure that the choices they make are well-informed.

I recently met a man and his family who quickly became one of my favorites that I have worked with. The couple were in their seventies, with several grown children and young grandchildren living nearby. His diagnosis was one that most in the medical community would consider devastating, though he and his wife maintained an upbeat attitude and an intention to pursue any form of treatment offered, no matter how severe the side effects or how slim the likelihood of benefit.

The first steps in his treatment knocked him down hard. He suffered debilitating side effects. He began to recover bit by bit, but then, still miles away from his pre-treatment baseline, he landed in the hospital with another complication.

I began to explore with him and his wife the potential paths that lay ahead. There was always the possibility of declining aggressive treatment and focusing on comfort, though he insisted over and over again that he would keep fighting his disease. But after yet another complication, it became clear that he might not, in fact, even be a candidate for any further treatment.

They had many appropriate questions, and I tried for days to get the primary team to sit down with this couple and give them some answers about what might lay in the patient’s future. When they finally did, the meeting began before I could arrive, and I entered the room to hear them discussing a plan to wait one more week and then meet to assess whether or not he might be able to tolerate further treatment. The patient and his wife pressed the physician further. “How likely do you think it is that he will be strong enough to get more treatment?” the wife asked.

“Well, we’ll have to wait and see,” replied the physician.

And there it was. The line that I had been using as of late to side-step Bean’s requests, to put them off in the hopes that he would forget, to deny without officially saying no. As he rounds the bend from two and a half to three years old, he has become quite a skilled negotiator; a frequent refrain is, “Later, nappy time over, do good listening, watch Cars [his current favorite movie]?” He’ll ask even if he’s just seen it the day before. And because I feel bad denying his request – and also because I would prefer to avoid a meltdown – I use a variety of stock Mom-phrases that I hadn’t even realized I relied on until he began repeating them back to me in response to requests of my own: “We’ll see.” “Maybe later.” “Wait and see.”

When I heard it from a fellow physician in such a loaded setting, I grew angry. Of course nothing is certain in medicine and our prediction skills are often poor. But when I looked at the patient before me, knowing his course and his current condition, I knew that I would be utterly shocked if he recovered to the point of being able to press onward with treatment. And the other physician – as he admitted later when we spoke outside of the room – knew it, too.

It made me think hard about the responses that I present to my own child. Yes, it’s easier to give some hand-wavy answer in an attempt to move on, change the subject, dodge the thing staring you in the face. And yes, a toddler’s request for more screen time is exponentially less serious than a family’s request for a clinical prediction. But in both cases, I think that we as humans should show one another the respect that comes with an honest answer, no matter how uncertain, no matter how difficult to deliver and to hear.

So I have started explaining to Bean what we are waiting to see. “It depends on how much time we have after we shop for groceries and take baths,” I’ll say. Or, “Well, let’s see if it’s nice outside; if it’s sunny, we should go to the park instead.” He doesn’t always love my answer, but he knows where things stand and what it is that we are waiting to see.

*Cross-posted at Mothers in Medicine (www.mothersinmedicine.com)*

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