Myth-busting About End-of-Life

Jared Rubenstein, MD, is a pediatric palliative care physician and medical educator at Baylor College of Medicine and Texas Children’s Hospital in Houston.

He is passionate about helping people talk about difficult subjects and believes satire, animation, and humor can make those conversations easier to begin. Check out his wonderful videos here.

“I hope the growing public sentiment about the importance of these conversations will filter into the medical community, that people will demand this of their doctors, and that these ideas will make their way into the education of every healthcare discipline.”

EW: Death is often considered taboo. Was there a defining moment in your life that ignited your passion for discussing end-of-life experiences openly?

Jared Rubenstein: There were several.

The first came through childhood conversations around the dinner table. My father is a critical care physician, and my mother is a social worker. My father often shared stories about the tender conversations and compassionate end-of-life care he provided to patients and their families.

Those conversations always felt normal, important, and worthwhile.

When I began my own career in medicine, I was horrified by how rarely those conversations actually happened. Witnessing the consequences of avoiding these subjects, for patients, families, and healthcare professionals, led me to a career in pediatric palliative care.

EW: How does your work intersect with conversations about the end of life and grief? What will you discuss on the End Well stage?

Jared: Our broader culture struggles to talk about death and dying. Medical culture is even worse, and pediatrics can be especially resistant.

The unwillingness to have open and compassionate conversations about the end of life causes needless suffering for patients and families. It also creates moral distress for healthcare professionals.

I am determined to make education and myth-busting about the end of life foundational parts of medical training. Failures in this area should be treated as seriously as other departures from the accepted 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?

Jared: Growing up with a critical care physician for a father and a social worker for a mother, our dinner conversations often included stories about end-of-life care.

We talked about allowing natural deaths, having difficult conversations, and attending patients’ funerals. These discussions normalized death while also showing me that caring for people at the end of life was important and worthwhile.

During my medical training, I practiced in other countries and gained experience in global health. I was struck by how culturally specific serious illness and end-of-life care can be.

We cannot practice palliative care in every country and culture exactly as we do in the United States. That makes our field distinct from many other medical specialties. Palliative care is inherently grounded in culture.

We must remain mindful of that as the field reckons with its white, Eurocentric origins. Our care should be culturally curious and inclusive, without projecting our personal or cultural values onto others.

EW: What societal belief about death and dying most needs to be challenged?

Jared: The belief that children must be sheltered from confronting death.

In my work, children and young adults almost always want a voice and an active role in planning their care during serious illness and near the end of life. Some adolescents may choose not to participate, and that choice should also be respected.

Far more common is a well-intentioned collusion between parents and healthcare professionals who try to shield a child from their own lived experience.

That can leave the child feeling frightened and isolated.

EW: How can different professions and disciplines work together to create more human-centered end-of-life care?

Jared: Through gatherings like End Well.

Death is one of the most fundamentally human experiences. It is entirely individual and completely universal.

We need to talk about it regularly, reflect on it, and create space for every person’s voice so that our practices represent the full range of human experience.

EW: Is there a book, film, artwork, or other piece of media that profoundly influenced your views on mortality?

Jared: It did not necessarily change my views, but this music video created by Ainslie Henderson is one of my favorite representations and meditations on mortality.

The fact that something so poignant and achingly beautiful can be created with yarn is mind-blowing to me.

EW: Imagine the End Well Project’s goals have been realized a decade from now. How would society approach the end of life differently?

Jared: I hope we can return to a culture that understands death as a normal part of life.

Death would no longer be treated as something that happens only to other people. We could reflect on it as something that will happen to every one of us and allow that awareness to bring greater meaning and purpose to our lives.

EW: What challenges are clinicians facing, and how can we better support them?

Jared: Clinicians working in this space are confronting a medical system that treats death as the worst possible outcome and often the only outcome that matters.

Modern medicine is filled with war metaphors and increasingly aggressive treatments. The system creates barrier after barrier for clinicians who want to address the elephants in the room, talk honestly about difficult subjects, and discuss death in ways that can improve quality of life.

I hope the growing public recognition of the importance of these conversations reaches the medical community.

People should demand this care from their doctors, and these ideas should become foundational parts of education across every healthcare discipline.