BY BOB MACAULEY, MD

 I intersect with patients and families at really important moments in their lives.

I always thought I’d become a primary care pediatrician. I imagined myself caring for my patients from the moment they were born until they “graduated” to an adult doc, navigating the ups and downs of toddler tantrums and adolescent crises, and maybe even taking care of their children one day.

I quickly realized that I didn’t love being a primary care doc, which probably meant I wasn’t a very good one. For every deep conversation about profound life events, there were a whole lot of sore throats and ear infections. But my longest days were on the “well-baby side” of the office—since it’s safer to keep babies coming in for routine check-ups separated from sneezing/sniffling kids there for sick visits—where I would see 4 almost-surely-healthy babies per hour, for a solid eight hours. That adds up to 32 routine check-ups a day, with little time for meaningful conversation. And woe be to you if you got caught up (as I frequently did) with a first-time parent who had lots of questions about baby formulas and sleep hygiene, because then you’d running late and have to play catch up with some (understandably) frustrated parents for the rest of the day.

I eventually traded that in for pediatric palliative care, where most of our conversations are about really important things. (Maybe the most important things.) Not every one, mind you, because our team places a priority on checking in with patients and families even when things are going smoothly and there aren’t any major decisions to be made. Especially then, actually, because if I were a parent, and the only thing the palliative care team did was have super-intense conversations about often heart-breaking things, I’d probably run in the opposite direction if I saw them coming. Palliative care needs to celebrate the successes with the same intensity that we mourn the losses.

The irony of this is that, fifteen years after trading in clinic days where every child was well for hospital days where none completely are—or else our team wouldn’t be involved—I find myself yearning for the sort of well-child check-ups that used to drive me crazy. I’d gladly go on for hours about the difference between cow-milk and soy-based infant formulas, or how to get your baby to sleep at night. I wouldn’t even charge for the visit, because the reminder that there are kids and families out there who don’t even know what palliative care is—let alone ever need it—would be payment enough.

Just one routine check-up, though. Then it would be time to return to palliative care, which I love more than anything I’ve ever done.

I do something really important that, if it weren’t for my teammates and colleagues, wouldn’t get done.

I’ll always remember a lecture from a visiting professor I heard when I was a senior in college. (It must have been really memorable, since that was over 35 years ago.) The professor told the story of one of his favorite students, who on the eve of graduation had knocked on his office door with great news.

“I got the job!” the student had said. “And there were over 200 applicants for it!”

The professor had paused before raining on the student’s parade.

“That’s impressive,” he began. “But why would you want to do a job that 200 other people are dying to do? Why not do something that, if you didn’t do it, it wouldn’t get done?”

I think of that story often, especially when people (often other physicians) say to me—which happens not infrequently—“I could never do what you do.”

I get why they say that, which explains why doctors aren’t exactly beating down the doors to get into the field of pediatric palliative care.  Most people understandably prefer to not think about children dying, let alone take care of them as they do. I have some really, really dark days, and I hope the pillows in my house know that I’m not blaming them when I mash one of them in my face and scream F*&#!!!!

My patients’ parents—who are the most amazing people on Earth (see #5 below)—notice, too. One of them said to me last week, “You have such a hard job.”

After glancing into the ICU room where her son—who’s in the same class at school as my son—was approaching the end of his life, I turned back to her and said, “I know of one other job that’s way harder.”

I don’t want parents like her to walk that path alone. So on my hardest days, I take some solace in the belief that my team here—and my colleagues at other institutions, and the incredible hospice workers out there doing God’s work every day—are doing work that, if it weren’t for them, might not get done.

I get to talk to patients and their families. Like, really talk.

While many of my physician-colleagues might think, “I’m so glad I don’t have your job,” others almost seem jealous of what we get to do. At least in terms of spending time with patients.

An example: At my institution, fellows (i.e., doctors who’ve finished their pediatric residency who are doing additional subspecialty training) in neonatal and pediatric critical care spend a few weeks with our palliative care team. Recently, at the conclusion of her palliative care rotation, one of them said to me, “Everything in the neonatal ICU moves so fast, and there’s always more that has to be done. At first I couldn’t believe how much time you were able to spend with families, just listening to them, letting them say what they needed to say. But once I started to slow down, I started to wonder, ‘How can we do more of that in the ICU’?”

She was totally right: modern medicine moves fast. There’s always another patient waiting to be seen, another clinical need that needs to be met. Physicians in almost every specialty are judged by how many “relative value units” (RVUs) they generate, based on the quantity and complexity of the patients they see.

Fortunately, RVUs play very little role in palliative care, which is so time- and personnel-intensive that most programs long ago gave up hope of breaking even financially (let alone generating a profit). Getting to know what patients and their parents most hope for—and also fear the most—takes time. Life-and-death decisions aren’t made quickly, and the human heart often doesn’t function in a linear or predictable fashion.

All of that takes time, which in palliative care we usually have. (And if we don’t have it, we make it.) In that respect, palliative care gives me what I was really looking for long ago, when I thought I’d end up as a primary care doc: the chance to really get to know my patients, to listen to their concerns and offer comfort (if not cure). To do what a lot of doctors went into medicine to do, except that the expectations and demands many of my colleagues now face often stand in their way.

Appreciating what we have.

I don’t claim to be a Buddhist, which could be awkward, seeing as I’m also an Episcopal priest (which is another story). I did live for a while in a Buddhist monastery in Nepal, though—which is yet another story—and I often find myself sharing with my own kids a basic Buddhist principle: Unhappiness is the result of wanting more than you have.

Logically speaking, there are two ways of solving that problem: either (1) get more or (2) want less. Option #1 might be called “the American way,” but Option #2 is the palliative care way. Palliative care docs never stop hoping for cure—we are human, after all—but we also realize that it’s often not going to happen, no matter how much we hope and pray and work for it. So we spend a lot of our time “regoaling,”[1] which is a fancy term for helping patients and families acknowledge that if what they most hope for (i.e., cure) doesn’t come true, there may still be other things worth hoping for. Like spending time with the people you love the most. Or experiencing less pain.

I don’t think it’s possible to totally separate your professional and personal life. You can’t say stuff all day at work and then completely forget about it when you get home. So the lessons that I try to share at work necessarily—and helpfully—impact the rest of my life. And the part about “wanting less” permeates my whole life.

I don’t take things like health and life for granted, because I recognize that not everybody has them. Hugs mean a lot to me, because I’ve seen my fair share of “last hugs.” And I often take a moment to just breathe, after having seen the look of joy and relief on patients’ faces when—after a long time in the ICU—they’re wheeled out into the hospital courtyard and finally get to take a deep breath of fresh air.

So rather than spending my whole life striving for more/more/more, I work on wanting less, because the future is uncertain and the present moment—whether a hug from someone I love, or the breath of fresh air—might be pretty darn sweet.

I come home from work every day, inspired.

I come home from work often gratified, frequently exhausted, occasionally enraged (at the injustice of the world), but always inspired. My patients’ parents say things that don’t make any sense to people who want to believe that children never die, like This is the best hardest thing I’ve ever done, and We’re the luckiest unlucky people in the world. Heck, while their child is dying in the room next door, they have so much love in their heart, that there’s enough left over for them to ask me how I’m doing.

When I was a child, some people did things that nobody ever should. (But’s yet another story.) So it shouldn’t be surprising that I would gravitate to a place where parents do amazing things I never dreamed a human being even could.

I might be my patients’ doctor, but they and their parents are my inspiration.

[1] Hill DL, Miller V, Walter JK, Carroll KW, Morrison WE, Munson DA, Kang TI, Hinds PS, Feudtner C. Regoaling: a conceptual model of how parents of children with serious illness change medical care goals. BMC Palliat Care. 2014 Mar 13;13(1):9.