Joy at the End of Life
Miranda Garcia -
Interview with palliative care physician Dr. Priya Raja
When we think of joy, it’s often associated with youth — the sheer delight of a child’s bubble bath, the uproarious laughter of teens playing pranks, or the unbridled excitement of college parties and first solo adventures in early adulthood. But joy does not just belong to the young, and if we’re lucky, joy finds us across life’s various stages as we age and change. And even under the most trying of circumstances — when facing a grave diagnosis or living with a debilitating chronic condition — life is not simply illnesses, ailments, and misery. To better understand joy at the end of life, I sat down to talk with Dr. Priya Raja, a palliative care doctor in New York City who treats patients with terminal illnesses and life-limiting conditions.
The Conversation:
Miranda García: Hi Priya, thanks again for making the time to chat. Before we jump into our topic at hand—joy under difficult circumstances and at the end of life—could you briefly explain what palliative care is and what kind of patients you treat as a palliative care doctor?
Priya Raja: So palliative care is a medical specialty, like heart specialists or lung specialists, that is focused on the care of people who live with serious illness—any kind of condition that has a prognostic implication, or what we call a life limiting condition. So examples of conditions like this are advanced cancer, organ failure, neurological conditions like ALS, cognitive disorders like dementia…all conditions that have a significant impact on the quality of life of a person, and also means that time may be short or time might look different for that person.
Oftentimes we confuse palliative care and hospice care, which hospice care is really a specialized set of services and supports for people who are more imminently at end of life and for folks who have elected not to continue to pursue treatments for their condition. But palliative care is a much more holistic form of care that really thinks about what's most important to a person…so treating symptoms like pain, nausea, difficulty, breathing, anxiety, agitation, but also providing emotional and spiritual support by working together on a clinical team that has social workers and chaplains as well. So I would say palliative care, at its core, is about putting the person first, rather than the disease. So instead of treating the cancer, you're treating the person with the cancer. And while it's a subtle rhetorical difference, I think it's profoundly transformative to how palliative care thinks about supporting people and the people around them.
MG: That’s such a crucial corner of healthcare that we rarely think about. Given that your practice is so holistic and you think so much about quality of life, how do you approach it, and particularly joy in life during difficult stages?
PR: Yeah, the core of how I think about taking care of someone is first and foremost to just understand who they are. ‘How do you like to spend your time? What brings you joy? Who are the important people in your life? Do you have a spiritual or faith based community? How do you cope with hard times?’ And through those conversations, you organically begin to understand what's most important to someone and what quality of life is. And I think it's really important to understand that quality of life is very contextual. I think sometimes we have ableist concepts of what a meaningful quality of life is, but I think the important thing is to tailor interventions and care to how that person defines it on their own terms, and their own self efficacy and autonomy, and it looks different for each person. You also get a sense of what interventions or treatments might match those values, or what are the trade offs that someone is willing to make versus not willing to make. And at its core, I think it really is about preserving joy, even as it looks different or takes different forms as illness progresses.
MG: Can you give me some examples of different manifestations or embodiments of joy for your patients?
PR: A lot of my work looks at how we help people do what they want to do, and help them maintain the capacities that are most important to them. So for my patient for whom bowling was super important, a lot of that was making sure he didn't lose sensation in his fingers, so he could feel how he was holding the ball and was able to continue bowling. For my patient who was a painter, it was managing his pain so he could paint more deftly with his hands. For those whom being a caregiver or parent is super important, it's making sure they feel well enough to continue to do that physical and emotional work.
And joy also changes over time, because sometimes the way that our body and our mind changes with serious illness means that we have to adapt, or we have to reframe what that's going to look like for us. So if you can't take your child to [sports] practice, can you still be awake and watch the game through FaceTime? Is there a way that you can care for your family, experience art or go bowling, even if you're not able to do those things the way you were able to before? So I think it's also having a lot of hard but important conversations about how you continue to access joy, even as it takes different forms, and even at the end of life, where people don't have a lot of consciousness and they're really passing through that last and final stage. Joy can just look like having family at your bedside at the end of life, and for family to be able to share important words, messages, or music with their loved ones. Hearing is the last sense that goes so I always tell people who are visiting that the auditory experience at bedside can be hugely transformative and important.
MG: That’s really powerful. And I love too what you were saying about just how joy changes as your body changes and embracing flexibility in finding joy in different ways. What has surprised you in working with your patients?
PR: How deeply personal and contextual it is—how so much of it is just tied up in someone's whole life story and experiences. And then the other part that always inspires me is that when people look back on what's most important to them, it's always their relationships and memories with the people they love; they reflect on that more so than anything else. And there's so much beauty in how people courageously navigate their own mortality…the bravery in spite of that and cherishing what is still possible is always something that gives me continued inspiration.
MG: I’m glad you mentioned that because I wanted to turn over the question to you—what has your experience working with these populations shaped the way that you view your own life and joy in it?
PR: I have so much gratitude for what I get to do, because it has transformed the way that I live. It's really illuminated just how ephemeral life is in itself. You never know what's going to happen… there's so much unpredictability and entropy and chaos in the world that it's really taught me to live in the present and to focus on what I have, to enjoy my mind and body as it exists today, and to make sure I honor and love the people in my life as best as I can. I try to make sure I'm an active participant in my life, because you never know when things are going to change, and I think those are all beautiful learnings that I experience every day.
And I think it has also made me understand joy as something that is really precious and rare, but also something that's expansive and can take so many forms as we grow and adapt with ourselves. Joy is going to look different at each stage of our lives. And of course, there's grief about what used to be, and then there's also possibility in what's still left or what can be.
MG: What's one thing that you wish people did differently in light of your work with those at the end of their lives or dealing with a chronic, life-limiting condition?
PR: Living in the present, I think that's the biggest takeaway that I've had. I think many people spend a lot of their lives in the past or in the future. I think it's extraordinarily hard to live in the present…I struggle with it as well, but I think it’s important to cherish the joy that comes with living and to prioritize the spaces, people, and experiences that bring you joy in life…it is the thing that has, over and over, been a recurring theme and one that is reflected back into what I think about for myself.
MG: Very carpe diem! And a good reminder, memento mori, “remember that you will die.” I want to follow up with the inverse question: is there a way you think we generally misunderstand joy?
PR: I think in our current society we need to not be scared of the other side of joy. We often stay away from hard conversations or hard emotions. And when you're talking about the question of joy at the end of life, it is a simultaneous question of other emotions, like despair, sadness, hopelessness, grief, and pain. All of those things coexist at the same time, so recognizing that joy transmutes and changes, but should also be integrated with the whole other set of emotions that people feel when your body and mind goes through this. We need to acknowledge the complex array of feelings, and to hold reverence for each one of those and to not be scared of those emotions and what they’re telling us. If we don't ask those questions, we're not curious, we don't explore, then you're missing a whole reality of how someone is experiencing themselves. I think that is the most beautiful part of this work—being able to sit with both the pain and the joy, and recognize that they will exist together and take different forms and understand that we should not be scared of that … I think American culture struggles with a lot of these emotions, and it's not even integrated into the way that we provide care for people.
MG: I'm glad you brought up American society, because I think your work is an interesting parallel to this current moment in the U.S when things are looking dark and it's stirring really difficult emotions, among them loss of hope. There's a lot we could learn from your patients who are navigating very difficult or even existential periods in their lives.
PR: Yeah I think you have to protect joy, be intentional about it. You have to find it in unexpected places…It's everywhere. It's within us, it's between people, even in casual exchanges. But I think having an attunement and orientation towards it is the most important part, and it doesn't mean neglecting that a reality is happening, but it means figuring out how you integrate that into your life, and how do you mourn it, and how do you grieve it, but continue living. And it's never linear—sometimes it's going to feel really hard and sometimes you might feel great—but I think having a commitment or orientation towards joy is the thing that keeps you steady.
MG: Can you leave us with any choice moments with your patients that really exemplified this approach towards joy in the everyday small moments, or joy when and how you can experience it?
PR: Oh my god, yes, one of my patients was the embodiment of joy. He was Irish and really took to heart the Irish custom of treating a funeral as a celebration. So during every visit with him he would share an update about a new event he had planned for his funeral celebration, including the saxophone players, the jazz quartet, the outfit that he wanted to be buried in. He had such a reverence for wanting to create this experience for his loved ones so they would have a joyful memory of him. But also for him, his first hope was to be able to go home and spend a summer sitting out on Mulberry Street, spending time with his friends and community, and to pass away at home. Then it became very clear that he was not going to be able to leave the hospital and, you know, he was able to reorient and adapt his joy around wanting to see the Fourth of July fireworks one last time, so the team in the ICU was able to turn his bed around so he could see them, and then two days later, he was ready to de-escalate all the life sustaining therapy he was on and passed away.
MG: That beautifully ties back to what you said almost at the very beginning, this kind of flexibility towards what joy might look like for you at different stages of life and different circumstances, but always having that disposition to look for it, make the space and the time for it.
PR: And even if the thing that we originally hoped for wasn't possible, there's still a number of other possibilities left. And this comes up when we talk about hope and miracles as well. Just seeing that, even if the thing that we originally hoped for isn't possible, what are other new hopes that we can have? How can our hope change? How can our understanding of what a miracle looks like can change? Yeah, just understanding that process of transformation as well.
MG: Truly speaks to the resilience of the human spirit, which is a fitting note to end on. Thanks so much again for sharing these profound insights, something I’ll continue to think about.