This morning we had a wonderful retreat for our palliative care section with a lot of thoughtful reflection and stimulating discussion. One of the prompts was this: imagine if you could own any building you wanted, what would you pick and why?

I was shocked by how quickly something came to mind.

When I was a kid, we lived in Tokyo for 3 1/2 years. It was a confusing, yet transformative, period of my life. It sparked in me a lifelong love of travel and foreign culture and adventure and new foods that I’ve never lost.

I remember visiting a toy store on a busy street after a long train ride. It was a small store, with several stories and lights that didn’t flicker but warmed. And it was packed, floor to ceiling, with toys – strange and unusual Japanese toys, wonderfully mysterious creations, robots and figurines and puzzles and games like I’d never seen before. It was a magical experience. I remember passing by other kids in there, eyes wide mouths open, like we were caught in a communal dream.

Whenever I think about it, I see it wrapped in fog, and there are times when I wonder if it ever existed, or if I made the whole thing up in my mind. Either way, it fills me with warmth.

When I was younger, I wanted to own that building for the toys – for that mountain of treasure – because even though I couldn’t speak the language, I knew how to play. Now that I’m older, I don’t really care about the toys, though I’d still want to own that shop.

I’d sit there behind the counter, pretending to read a book, secretly watching the joy and wonder and awe and mystery and magic sweep over the kids. I’d sit there and watch that memory form, let it heal the parts of me that ached.

To flip the lights on every day and give that to the world, I think, would be worth it. To know that I had a hand in such happiness, in such a beautiful reminder that the world can be a safe and spectacular place and not so terrifying.

To be a part of that, I think, is what this whole thing is all about.

As many of my friends are now in Montreal for the annual AAHPM conference, the first in-person event for many, I thought it might be a good time to think about the connections we hope to build and the walls and barriers we face in medicine.

Take a moment to read Robert Frost’s poem “Mending Wall.” You can find a link to the poem here. This poem is a favorite of mine, and I use it all the time with my medical students, residents, and fellows in our narrative medicine reflective reading sessions.

Something there is that doesn’t love a wall,

That sends the frozen-ground-swell under it,

And spills the upper boulders in the sun;

And makes gaps even two can pass abreast.

What are are some of the walls or barriers we face in medicine? In palliative care? What are some of the barriers our patients and families face?

What are some of the walls we should build up and fortify, what are some we should tear down?

Why is this poem called Mending Wall? Can walls bring us together, rather than force us apart?

Would love to hear some of your thoughts!

After taking some time off to study for my Internal Medicine board recertification exam, and some additional time off to recover from studying for my board recertification exam, we’re back with a new Moments Matter.

Today’s topic comes straight from the mind of my amazing 5 year old daughter. One day she asked such a simple, yet deeply curious, question that I at first didn’t know how to respond.

“Why is it important to be kind?”

I thought about it for a moment. My first instinct was to say “because it’s the right thing to do!” or “because Mr. Rogers!” but those weren’t really answers.

Instead, I did what any palliative care doctor might do, and replied with “what do you mean? Tell me more.”

She told me how her teachers always say it’s important to be nice and kind, and how I always talk about being considerate and respectful. And that sometimes it’s hard to be kind, especially when other kids are being mean.

I gave her a hug and went into dad mode for a minute (why, did something happen at school?) which then turned into talking about tough feelings, and imaging a world where everyone was kind and respectful and knew how to talk about and sit with the differences that make us so unique and amazing.

We talked about how there’s so much meanness in the world. So much darkness, and how do you get rid of darkness? We talked about how only light can do that. I shared with her that I firmly believe there’s kindness in all of us. Sometimes it’s buried, or hidden, or hasn’t seen the light in ages. But I think it’s still there. Sometimes all it takes is a simple act of kindness for it to come out in others.

I could tell she didn’t know what I meant, or that I wasn’t doing a great job of explaining. So I decided to show her.

The outer perimeter of Mercy Hospital is buffered on one side by Boulevard of the Allies, a fast moving access point to 579 and the Liberty Bridge. There’s so much construction by Mercy, and the cars on the Boulevard are going so fast, that it’s nearly impossible to leave Mercy and make the sharp right needed to merge.

I’ve seen cars stuck there for five minutes, waiting to turn. It’s terrifying at times, and so insanely stressful.

I drove my kids by one day in heavy traffic. I saw the long line of cars leaving Mercy, waiting to merge. I saw the driver of the first car craning his neck out, inching forward nervously, trying to time it just right.

“Remember how we talked about kindness bringing out kindness? Let’s try something.”

I slowed down and waved at the driver, and watched as he turned comfortably into our lane. As he drove away, we saw his hand shoot up and wave back.

“That was nice of him,” my daughter said, finally realizing what I meant.

“Now look behind us,” I said.

My kids turned around and looked behind us.

As we drove away, we saw the driver behind us slow down to let the next car in. And the next driver did the same, and the next the same.

And pretty soon, all the cars had turned.

Just keep swimming.

My daughter loves the movie Finding Nemo. In fast, she loves it almost as much as she loves the sequel, Finding Dory. I love them, too, even though watching them as a parent triggers a certain amount of anxiety.

Whenever I watch it with her, I always linger for a moment or two on “just keep swimming.” It’s a beautiful mantra, one I revisit often in my own life. Just keep swimming is the reason I write and draw. In fact, it’s the reason I started this blog in the first place.

Not to get overly personal, but the truth is: I write because I must. I write because it’s therapy, because it’s release. I write because I don’t feel like the person I want to be if I keep it all inside. And I’ve written SO many things over the years: poems and short stories, plays and entire books. Most of these will never see the light of day (and probably for good reason). In the past, I’ve thought of each unpublished story or book as a failure, wrapped it around my legs and let it drag me to the bottom. It’s such an easy thing to do, such a weightless place to go.

But over the years I’ve changed, I’ve forced myself to view them as currents, each one flowing into the other, the lines I’ve written in the past merging with the lines of my present, propelling me forward to the next story or poem or book.

And all I have to do is just keep swimming.

If we view every mistake or misstep or stumble as failure, then success fades quickly and everything after it drags you down to greater depths. But if we view every mistake or misstep as an opportunity to learn and grow, then we keep moving forward until finally we get to where we’re going.

Bite-size pieces.

Have you ever presented a lot of information to your patient at once – really important information, information you just had to get out right then and there all in one blow so they could soak it all in and get the full picture? Chances are your patient started shifting in place, or looking around the room. Maybe the eyes glazed over, or they started looking beyond you and into the hallway.

Turns out people are really bad at processing a lot of information at one time, especially when emotions are thrown into the mix. The solution? Give information in bite-size pieces. Cut it all up into smaller pieces that they can cognitively and emotionally digest. And after each bite (or a few bites, depending on the information), check in to see how they’re doing. “Any questions so far?” or “I just shared a lot of information, what’s going through your mind right now?” are good places to start.

If you present information in bite-size pieces, then you’ll find the conversation flows more smoothly and there will be a lot less confusion at the end.

When lightning strikes.

We returned from a wonderful, relaxing, stress-free vacation to a crazy storm. Rain poured down in buckets, the wind howled, the thunder clapped like it was inches from our ears. As water started seeping into our basement, a bolt of lightning struck the giant oak tree just a few feet from our front door. The sound was terrifying. Suddenly smoke filled our driveway and the front of the house and we ran for cover in the basement.

We are just fine, thankfully. But for a moment we weren’t so sure. Our giant oak has seen better days, and the house will need some work, but we are just fine. It was a moment we’ll never forget, and a scary but important reminder of what matters most.

It’s all about perspective.

The other day my son, who has a peanut allergy, was thinking about a life without peanuts, and worried that he was missing out. I started to say “well, it could be worse. You could be allergic to dairy, or gluten, or eggs. Imagine that!”

I feel like it’s a pretty common thing to do, comparing two different scenarios to try and make someone “feel better.” But as he started nodding his head, I wondered if there might be a different approach. Maybe we shouldn’t compare our lives to people who “have it worse.” Does the “it’s all about perspective” or “it could be worse” approach help us become more empathetic and understanding, or isolate us more and downplay our own feelings? Does it train us to look for comfort in other peoples’ misfortune? Is it a variant of schadenfreude?

I worry it may be. I certainly think it’s important to empathize with others and try to imagine what it must be like in someone else’s shoes, but perhaps not in response to our own feelings. Maybe we should sit with our feelings, explore them more rather than dilute them in comparison.

Maybe we should figure out how our feelings impact our perspective, instead of how perspective impacts our feelings…

What do you think?

Avoid jargon.

I feel like this was the very first lesson I learned as an intern, and it’s certainly the hallmark of every communication 101 lecture. Avoid medical jargon. I once read that medical students learn close to 15,000 new words over their four years of training. I’m not sure if this is an accurate estimation, but even if it’s off by a degree or two, that’s still a staggering number of words your patient probably won’t know. It’s also important to remember that your patients will have varying levels of education from postdoctoral and medical degrees to almost no formal education at all.

Your best bet is to avoid jargon completely. Instead of “tachycardia” say “fast heart beat.” Instead of “elevated BUN/Creatinine” say “your kidneys aren’t working as well as they should” or more directly “your kidneys are failing.”

But the idea of avoiding medical jargon doesn’t stop at avoiding technical words or abbreviations like tachycardia and BUN. It extends to conceptual jargon as well. Here’s an example: often I’ll hear our residents, when trying to map values, say “so, we’d like to know… what are your goals of care?”

Patients and family members usually respond with a big question mark. What does “goals of care” even mean? I certainly have no idea. It’s conceptual jargon that often goes way over our patients’ heads, and of course is entirely subjective and individualized.

So instead, simplify your language. Avoid conceptual jargon completely. Instead of “what are your goals of care” ask “what’s most important to you” or “what are you hoping for?”

Save the big words for Scrabble.

If she were your mother.

This is another one we hear quite a bit in medicine: “what would you do if she were your mother?” It makes complete sense for someone to ask this question, it’s a very healthy and relatable thing to wonder especially if the person in question can’t answer for themselves. Patients and their families not only want advice, they want the best advice, the same advice you’d give your own family if everything was on the line.

I’ve seen some people come straight out and answer this question with a direct recommendation. “If she were my mother, I’d do the surgery.” The tricky thing about this approach is that it presumes your mother’s (or in fact your own) values and priorities are the same as your patient’s. It ignores, and downplays, all those wonderful things that make each of us different. And it risks swaying someone toward a particular decision based on your values rather than theirs.

So if you don’t take a direct approach to answering the question, how then might you respond? I’ve also seen some people answer by saying “I can’t answer that question because she’s not my mother,” which I feel gets a little closer to the underlying point. The approach that I’ve settled on over the years is one with a little more validation, and a little more redirection. I might say something like “you know, I would do exactly what you’re doing right now. I’d weight the risks and benefits, and think about what my mother would say if she could hear everything we’re talking about. And the truth is, it may be very different from what your mother would say. What do you think your mother would say if she could hear what we’ve been discussing?”

I’m sure there are other approaches that are just as, or even more, effective – but the above is what I’ve found works best in this situation.

What have you found works best when asked “what would you do if she were your mother?”

Request for nondisclosure of information.

Has a patient’s family member ever stopped you outside the room and asked you not to share a diagnosis or key piece of information with your patient? If so, how did you react? And if this has never happened to you, how might you respond to such a request?

As a full-time palliative care doctor, I can tell you that requests for nondisclosure of information happens relatively frequently. We’re ethically obligated to share information with our patients if they want to know, but if they don’t want to know then we’re not obligated to share. Of course, we can’t just assume that our patient doesn’t want information because family members are saying so – we need to verify. This can turn into a pretty tricky situation, one that risks fracturing trust and rapport while compromising patient autonomy and right to know.

I’ve found that the best approach in this situation is one of curiosity and validation. Spend some time outside the room mapping out the concerns. “What are you most worried about?” or “Tell me more about your concerns with sharing this information” are great ways to start. Then respond with empathy and acknowledge and validate the often very human, and loving, emotions behind the request. Often times the family member’s afraid of causing more distress, or “speeding things up” due to depression or anxiety or added stress.

By acknowledging the emotion behind the request, and validating humanity, you can move on to the necessary next step: protecting your patient’s autonomy while also respecting the family member’s concerns. In my experience, the best way to do this is by clearly setting the expectation that if the patient wants to know, then we must share the information. If he doesn’t want to know, then we don’t need to discuss further.

I then negotiate for information sharing. I’ll say something along the lines of “I’ll ask if he wants to know while paying particular attention to your concerns.” But I won’t stop there – I’ll take it one step further by sharing exactly what I’ll say to the patient. After this, I’ll ask for feedback from the family. “What do you think of asking in that way?”

By validating the family member’s concerns and then aligning your strategy through negotiation, you’ll come to a shared communication approach where there are (hopefully) no surprises. This technique helps you tend to potential distress in your patient and their family, as well as team distress caused by fear of withholding information.