The #1 Thing Practitioners Can Do for Palliative Care

“Hey, Jared, I really like you, but I don’t like seeing you here because it means someone’s having a really bad day.”

That’s how one of the pediatric oncologists greets me when I enter his clinic at the children’s hospital where I work.

Believe it or not, that’s how I get greeted a lot. My presence tends to evoke sadness in people, prompting them to confront thoughts they would rather avoid.

But I assure you, I’m not the stuff of nightmares or some terrifying boogeyman.

I’m just the pediatric palliative care doctor.

For those who don’t know, palliative care is a medical specialty that helps anyone living with a serious illness. When I meet a child and their family, it’s often during one of the most challenging times of their lives.

We help manage symptoms. We help plan for the future. And we work to ensure that the child’s humanity is infused into the healthcare they receive.

Palliative care is the gold standard of person-centered care for anyone living with a serious illness. Ultimately, our goal is to make each day just a little bit better than it might otherwise be.

You might be wondering why somebody would want to do this work.

For me, it started at my childhood dinner table.

My dad was an ICU doctor, and my mom was a social worker. It was like a little interdisciplinary team meeting.

It wasn’t uncommon for conversations to be about my dad’s patients. But they weren’t about the heroics and lifesaving that happened in the ICU. They were about the patients who didn’t survive.

They were about the difficult conversations and family meetings. About supporting a person and their family as he compassionately took them off a ventilator so they could have a peaceful death.

My mom would talk about accompanying him to patients’ funerals and the gratitude their families showed him.

You know, family dinner stuff.

Years later, when I decided to pursue medicine, those conversations came rushing back to me.

I realized that my dad had been providing remarkable palliative care, even if he didn’t have a name for it at the time.

Those dinner-table conversations made dying seem like a normal, natural part of life. That was in stark contrast to the way it is typically viewed in modern medicine: as an unspeakable outcome to be avoided at all costs.

Palliative care physicians work as part of amazing interprofessional teams. We have doctors, nurses, social workers, chaplains, psychologists, and others all working together to provide wraparound support for a person and their family.

We help manage physical, emotional, psychological, and spiritual forms of suffering.

We work to maximize quality of life so that, no matter how long a person has to live, they are able to live as fully as possible through the end of their life.

In a healthcare system that too often sees patients as their disease, we work to see the whole person and provide truly personalized medicine.

No fancy gene sequencing required.

When I meet a child and their family for the first time in the hospital, I often ask the parents to take out their phones and show me pictures and videos of their child at home.

I love taking that opportunity to get a sense of who they are as a person when they’re at their best.

Once, when I asked, a patient’s mother started crying.

“We’ve been coming to this hospital for 10 years,” she said, “and this is the first time a doctor has ever asked what he’s like at home.”

It’s such a simple thing to do. And it’s such a heartbreaking snapshot of how our system routinely fails to see people in their full humanity.

That’s how we want to see people: beyond hospital walls and medical charts. Seeing them as a person, rather than only as a patient.

This approach is at the heart of what we aim to do in palliative care.

The work is beautiful and incredibly fulfilling. It’s profoundly satisfying to be able to affect a person’s life during one of its most challenging times.

But it’s also emotionally taxing.

Witnessing this much suffering every day can take a toll. And here, again, I’m grateful for my incredible team.

We talk with one another throughout the day. We support each other, debrief, and process the emotional challenges we’re seeing.

It provides an element of self-care at work so I don’t have to bring all of it home to my own life and family.

But there is something that lingers and often keeps me up at night.

I think about all the people I don’t get to meet, or the people I meet too late, because nobody calls us.

Two of the most common questions my team and I hear when we meet a child and their family for the first time are:

“Where have you been?”

And, “Why didn’t we meet you sooner?”

How many people are experiencing unnecessary suffering that could be mitigated by receiving palliative care?

Sadly, it’s a lot.

Let’s talk about some data.

The World Health Organization estimates that, worldwide, only 14 percent of the people who need palliative care actually receive it.

There are many reasons for that. But here in the United States, there’s a specific cause I want to talk about: the misconceptions and biases about palliative care held by healthcare workers.

Nationally, 70 percent of people surveyed simply don’t know what palliative care is.

And when they learn what it is, most people think it sounds great.

And they’re right. It’s so good.

One study looked at where patients’ negative perceptions of palliative care came from. Some came from previous experiences or preconceived notions, but a significant portion came from healthcare workers.

Like in so many horror movies, the call is coming from inside the house.

Repeatedly encountering healthcare workers who misunderstood and misconstrued our field frustrated me.

So one day, I made a video about it.

“Hi, we got a call that this house is on fire. How can we be helpful?”

“Well, the house is on fire, but I’m worried that if you go in there, it might send the wrong message.”

“Wait, what? I’m with the fire department.”

“Yes, I know. And I think you could be really helpful. But I think the family might be worried something is wrong if the fire department shows up at their house.”

“But something is wrong. Their house is on fire.”

“Do you think there’s any way you could talk to them without using the word ‘fire’?”

“What?”

“I just think that if the family hears the word ‘fire,’ they might lose hope.”

“But I am with the fire department, and I am here to help this family with their fire.”

“Right, right. Totally. I think you could be really helpful. I’m just not sure this family is in a place where they’re ready to meet the fire department right now. Can we call you the Water Support Team?”

It turns out that experience was so prevalent that the video went palliative-care viral.

It’s like regular viral, but for a really niche community.

This is the experience we have in healthcare. We don’t understand why people don’t call us, and it’s because healthcare workers hold these biases about our field.

I want to be clear: I don’t want to villainize other healthcare workers.

These are good people trying to do a good job.

But in some cases, they’re providing bad care because of misconceptions and biases about how to provide person-centered serious illness care.

Like many biases, this one is grounded in a lack of education.

There is so little formal education about communication, death, and dying in medical school.

Honestly, it wouldn’t be much of an exaggeration to say that by the end of today, all of you will have received more education about this than healthcare workers receive in typical training programs.

In medical school, I learned that eating a polar bear’s liver can cause vitamin A toxicity.

But I didn’t learn what normal dying looks like.

We were made to memorize the Krebs cycle, but we weren’t taught how to have a sensitive and appropriate code-status conversation, or how to help a patient and their family navigate impossibly complex life decisions.

We spend months dissecting cadavers and learning about internal organs. Then we spend more months looking through microscopes and learning about different types of cells.

And we end up forgetting that the collection of organs and cells is a person standing in front of us who needs our help.

A human being asking to be seen, heard, and spoken with person to person.

I didn’t learn most of these crucial skills until my fellowship training in hospice and palliative medicine.

I’m so glad I know them now, but I learned them far too late.

These are skills every doctor needs, regardless of the field they practice in.

Most of us will never eat a polar bear’s liver.

But every single one of us will one day come to the end of our life.

When doctors don’t know how to talk about that, it affects all of us.

Don’t we all want and deserve a healthcare team that knows how to expertly support us through the end of our lives?

This is what keeps me up at night.

It breaks my heart, and it makes me angry.

And if I’m being honest, I want it to make you angry too.

If you ask anyone who works in palliative care what the hardest part of the job is, almost all of us will say it’s the struggle of working within a system that doesn’t understand or value our work.

A system where biases and misconceptions prevent a crucial medical specialty from becoming involved early enough, or at all.

I think the fire department video went viral because that’s what this is about.

We work in a system that sees us as the fire, rather than the fire department.

So where do we go from here?

I think we need nothing less than a fundamental cultural shift in the way palliative care is viewed in medicine.

And look, I know this has been the work of decades. So many giants in our field have done this work before me. Organizations like End Well continue to have a significant impact on culture and education around care at the end of life.

I’m profoundly grateful for that.

And I know more work still needs to be done.

When we consider other significant cultural changes, history shows us that winning hearts and minds only goes so far.

The end of school segregation did not happen because everyone stopped being racist.

California didn’t raise its minimum wage because billionaires suddenly decided their employees deserved $16 an hour.

These and other beneficial societal changes came about as a result of policy change.

Of course, there were changes in culture and public sentiment that enabled those policies to be put in place. But cultural change can only go so far without policy to support it.

I believe this is where we are now in our field.

At the state and national levels, we need a continued focus on policies and guidelines describing what quality palliative care looks like and when it should be used.

We need our educational organizations to recommend significant increases in palliative care education at every level of training.

At the local and institutional levels, we need to take those guidelines, enshrine them as the standard of care, and use existing mechanisms to ensure adherence.

We need to overhaul educational curricula so this crucial education exists in every program.

Increasing education in palliative care is empowering.

It gives clinicians the tools and the permission to be brave and muster the courage to have tender conversations.

The courage to truly know someone and still know that they could die.

We need to use every lever we can pull to ensure that this training exists and that policies are created and treated with the gravity they deserve.

And we all need to use our voices to shout this from the rooftops, the hospital hallways, and movie sets.

We also need to bring these principles into our everyday practice.

Remember the pediatric oncologist who said he didn’t like seeing me because it meant someone was having a really bad day?

I said to him, “I hate to break it to you, but you work in a clinic for children with cancer. I think everyone here might be having a bad day. I’m actually here to try to help someone have a better one.”

And I think that brought him a reflective pause.

When a colleague says to me, “We have to be careful when we consult your service because people are afraid of palliative care,” I push back.

And I bring the receipts.

The data show that most people simply don’t know what palliative care is. When they do have negative misconceptions, those misconceptions often come from healthcare workers.

I don’t think these conversations need to be antagonistic.

And I also don’t think we should have to be self-effacing in order to be collaborative.

We can be both compassionate and firm.

I truly believe conversations like these can, one by one, play a role in the cultural change we so sorely need.

Because how many more people must suffer needlessly because of a lack of palliative care?

Lastly, we need to do this work together. Our combined perspectives and expertise make us exponentially stronger.

If you work in healthcare, I hope you advocate for including the palliative care perspective and expertise for every patient who needs it.

If you work in policy, I hope you partner with experts in our field to create thoughtful, meaningful legislation for people living with serious illness.

If you’re a content creator, I hope you strive to create something that doesn’t show only the heroic surgeries and lifesaving measures that happen in medicine, but also does justice to the equally heroic work of being with people facing the end of their lives.

And if you or someone you love is one day diagnosed with a serious illness, I hope you demand palliative care.

Because you, like all of us, deserve a team that will work to make each day just a little bit better.

Thank you