Jared Rubenstein, MD is a pediatric palliative care doctor and medical educator at Baylor College of Medicine and Texas Children’s Hospital in Houston, TX, USA. He is passionate about helping people talk about difficult things and believes that the use of satire, animation, and humor can facilitate these conversations. Check out his wonderful videos here!
I hope the growing public sentiment about the importance of these conversations will filter into the medical community at large, that people will demand this of their doctors, and that these ideas and teachings will make their way into medical education of all healthcare disciplines.
EW: Death is often considered taboo. Was there a defining moment in your life that ignited your passion to discuss and address end-of-life experiences openly?
JR: Several! My first was childhood dinner table conversations. My dad is a critical care doctor and my mom is a social worker and my dad would often share stories of the tender conversations and compassionate end-of-life care he provided his patients and their families. It always just felt normal, important, and worthwhile.
Then when I began my career in medicine I was horrified to see how rarely those conversations I had heard my dad talk about actually happen. Seeing all the downstream effects that occur in healthcare when these topics aren’t discussed openly and compassionately is what led me to a career in pediatric palliative care.
EW: Given your unique background, how does your work intersect with the end-of-life and grief conversation — and please give us a preview of what you’re talking about on the End Well stage.
JR: If our culture is bad at talking about these things in general, medical culture is even worse (and pediatrics even moreso!) The unwillingness to have open, compassionate conversations about end-of-life causes needless suffering for the patients and families we care for and causes moral distress for those of us in this space in healthcare. I’m determined to bring education and myth-busting about end-of-life into the foundation of medical education and have lapses in this care be considered as we consider other deviations from the standard of care.
EW: Cultures around the world have different practices and beliefs surrounding death. How has your cultural background influenced your perspective on the end of life and grief?
Growing up with my critical care doctor dad and social worker mom, our dinner table conversations would often be about my dad’s end of life care patients: allowing natural deaths, hard conversations, and attending funerals of his patients. This had the effect of both normalizing these conversations and also making them seem important and worthwhile
With some experience in global health and practicing medicine in other countries during my training, I was always struck by how culturally specific and varied serious illness and end of life care is around the world. We can’t practice palliative care in other countries and cultures exactly the same way we do here and I think that makes our field unique among other medical specialties: we are inherently culturally grounded. We must always be mindful of this, especially as our field reckons with its white Eurocentric origins, to ensure we are always providing culturally curious and inclusive end-of-life care and ensure we aren’t projecting our own or our culture’s values onto others.
EW: In your experience, what is the most significant societal norm or belief about death and dying that needs to be challenged or redefined?
JR: That children need to be sheltered and protected from confronting death. In my work, children and young adults almost always want to have a voice and active role in planning their serious illness and end of life care. The exception is the adolescent that chooses not to. Much more common is well-intentioned collusion of a child’s parents and healthcare team members trying to shield the person from their own lived experience leaving the child scared and isolated.
EW: How do you hope various professions and disciplines can come together to create a more human-centered approach to end-of-life care and experiences?
JR: At a conference like End Well! Death is one of the most fundamentally human experiences, both unique to the individual and completely universal. We need to be talking about it all the time, reflecting, creating space for everyone’s voice so all can represented in our practices.
EW: Is there a book, movie, piece of art, or another form of media that profoundly impacted your views on mortality?
JR: It hasn’t necessarily impacted my views, but this music video created by Ainslie Henderson is one of my favorite representations and medications on mortality. The fact that something so poignant and achingly beautiful can be created with yarn is mind-blowing to me.
EW: Fast forward a decade. If the objectives of the End Well Project are realized, how do you envision society’s attitude and practices surrounding the end of life experience?
JR: I hope we can return to a culture that considers death a normal part of life. Rather than something that happens only to other people, we can reflect on death as something that will happen to all of us, and allow that reflection to give more meaning and purpose to our lives.
EW: What are the challenges facing clinicians and how might we better support them?
JR: Clinicians working in these spaces are up against a medical system that considers death the worst possible and only relevant outcome. Rife with war metaphors and increasing aggressive treatments, modern medical care creates barrier after barrier for those of us that want to address the elephants in the room, talk about the hard things, and speak about death in order to improve the quality of life. I hope the growing public sentiment about the importance of these conversations will filter into the medical community at large, that people will demand this of their doctors, and that these ideas and teachings will make their way into medical education of all healthcare disciplines.
Jared Rubenstein, MD will speak at End Well 2024 on November 22, 2024. Join live or virtually!