“Hey Jared, I really like you, but I don’t like to see 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’d rather avoid.
But I assure you, I’m not the stuff of nightmares or some terrifying boogeyman. I’m just a 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 at 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 would someone want to do this work? Well, 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 work but it wouldn’t be about the heroics or lifesaving moments in ICUs. Instead, it was about patients who didn’t survive, tough conversations in family meetings, and supporting a person and their family as he compassionately took them off the ventilator to have a peaceful death.
My mom would talk about accompanying him to patient funerals and the gratitude their families would show him. You know, family dinner stuff.
Years later, when I decided to pursue medicine, it was these conversations that 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, in stark contrast to how it’s 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’ve got doctors, nurses, social workers, chaplains, psychologists, and more, that all work 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, ensuring that no matter how long a person has to live, they’re able to live life to the fullest, through the end of their lives.
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 cell phones and show me pictures or videos of their child at home. I love taking this opportunity to get a sense of who they are as a person when they’re at their best.
Once, when I asked, the 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 to see 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 not just as patients, but as people. 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 work to impact a person’s life at these most challenging times. But it’s also emotionally taxing. Witnessing this much suffering every day can take a toll.
This is why I’m so grateful for my incredible team. We talk with each other throughout the day to support, debrief, and process the emotional challenges we’re seeing. It helps provide an element of self-care at work so I don’t bring it all home to my life and family.
Still, something does linger, and it often keeps me up at night. I think about all the people I don’t get to meet, or the ones I meet too late, because nobody calls us.
Two of the most common questions I hear when my team and I 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 having excess suffering that could be mitigated by receiving palliative care? Sadly, it’s a lot.
Let’s look at some data. The World Health Organization estimates that worldwide, only 14% of people who need palliative care actually receive it. The causes are varied and many. But here in the United States, one specific cause stands out: misconceptions of and biases against palliative care held by healthcare workers.
Nationally, 71% of people surveyed don’t know what palliative care is. And when they learn, most think it sounds great and they’re right, it’s so good. In a study examining where patients’ negative perceptions of palliative care came from, some did come from lived 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.”
The experience of routinely encountering healthcare workers who misunderstand and misconstrue 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 if you go in there, it might send the wrong message.”
“Wait, what? I’m with the fire department.”
“Yes, I know. 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 you could talk to them, but not use the word ‘fire’?”
“What?”
“I just think 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 but I’m just not sure this family is in the right place where they are ready to meet the fire department right now. Can you call yourself the water support team?”
It turns out this experience is so prevalent, this 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 the biases out there that healthcare workers have about our field. I want to be clear, I’m not villainizing other healthcare workers. These are good people trying to do a good job. But in some cases, they provide bad care because of misconceptions and biases about how to deliver person-centered serious illness care.
Like many biases, it’s one grounded in lack of education. There’s so little formal education about communication around death and dying in medical school. Honestly, it’s not that big of an exaggeration to say that by the end of today, you all will have received more education around this than most healthcare workers receive in typical training programs.
In med school, I learned that eating a polar bear 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 not how to have a sensitive, appropriate code status conversation, or how to help a patient and their family as they navigate impossibly complex life decisions.
We spend months dissecting cadavers, learning about internal organs, and then we spend months more looking in microscopes to learn the different types of cells. But we often forget that the collection of organs and cells is a person standing in front of us, needing our help. A human being asking to be seen and heard and spoken with, person to person.
I didn’t learn these crucial skills until my fellowship in hospice and palliative medicine. I’m so glad I know them now, but I learned them far too late. These are skills all doctors need, regardless of what field they practice in.
Most of us will never eat polar bear liver, but every single one of us will one day come to the end of our lives. When doctors don’t know how to talk about this, it affects all of us. Don’t we all want and deserve a healthcare team that can 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 that works in palliative care what the hardest part of our job is, almost all of us will say it’s the struggles that come from working in a system that doesn’t understand or value our work—a system where biases and misconceptions prevent a crucial medical specialty from being involved early enough, or at all.
I think the reason the fire department video went viral is because this is what it’s about. We all work in a system that sees us as the fire, and not the fire department.
So, where do we go from here? I think we need nothing less than a fundamental culture shift in the way that palliative care is viewed in medicine.
And look, I know this has been the work of decades and that so many giants in our field have done this work before me. Organizations like End Well continue to significantly impact culture and education around care at the end of life. I’m profoundly grateful for this, 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 didn’t come about because everyone stopped being racist. California didn’t raise the minimum wage because billionaires suddenly decided all 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 these policies to be put in place, but culture change can only go so far without the policy to support it. And I believe this is where we now are, in our field.
On a state and national level, we need a continued focus on policy 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 all levels of training.
On a local and institutional level, we need to take these guidelines and enshrine them as the standard of care and use already existing mechanisms to ensure adherence to these standards. We need to overhaul our educational curricula to ensure that this crucial education exists in all programs.
Increasing education in palliative care is empowering. It gives clinicians the tools and the permission to be brave—and muster the courage to have these tender conversations, the courage to truly know someone and still know that they could die.
We need to use all the levers we can pull to ensure this crucial 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, from the hospital hallways, and from the movie sets.
We also need to bring these principles into our everyday practice.
Remember that pediatric oncologist I mentioned who said he didn’t like to see 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.”
I think that brought him a reflective pause.
When a colleague says to me, “You know, 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.
“You know, data show that most people just don’t know what palliative care is. And when they do have negative misconceptions, they 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 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 path to culture change, a culture change we so sorely need.
Because how many more people need to suffer needlessly because of a lack of palliative care?
Lastly, we need to do this work together, as our combined perspectives and expertise make us exponentially stronger.
If you work in healthcare, I hope you advocate to include the palliative perspective and expertise for all your patients who need it.
If you work in policy, I hope you partner with experts in our field to create thoughtful and meaningful legislation for people living with serious illness.
If you’re a content creator, I hope you strive to create something that doesn’t only show the heroic surgeries and life-saving measures that happen in medicine, but does justice to the equally heroic work of being with people facing the end of their lives.
And if you or a loved one are 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.
