Mindfulness for Children Facing Serious Illness

“We recognize that there are three cultures to be acknowledged in the care of any human being: the culture of the individual child and family, the culture of the clinician and team, and the culture of healthcare.”

EW: Glen, you’ve been a significant part of End Well, bringing your team and creating a whole learning journey last year. What inspired this, and how did it affect your team?

Glen Komatsu: Shoshana first inspired me when she presented the End Well program at a Providence Institute for Human Caring board meeting. I thought it sounded like an innovative and fascinating approach to the topic.

I was further inspired by the inclusion of pediatric topics and, finally, by the generosity of an End Well donor who funded admission to the event and Shoshana’s incredible offer to provide those tickets to us at Providence.

The event had a significant impact on clinicians from several of our teams. They saw the many ways end-of-life topics can be presented and considered, especially through the lens of the arts and humanities. Medical teams can become stuck viewing healthcare exclusively through a medical lens.

The response was so positive that our hospice foundation agreed to fund 35 admissions this year. The list was full within two hours of sending the email, and we now have a waiting list. This was after I explained that last year’s attendees could only return if we did not fill all the available spots.

EW: Your work at Providence Kids Care intersects with the end of life in unique ways, especially within pediatric care. How does your team approach conversations and support around the end of life and grief? What principles guide you?

Glen Komatsu: Providence Kids Care began in 2001, and I became medical director in 2005. Our approach remains a work in progress as the team and I continue to grow and evolve in our thinking.

I have benefited from wonderful mentors at Dana-Farber Cancer Institute, Boston Children’s Hospital, and Harvard Medical School. I have also received extraordinary support from my organization, allowing me to think beyond traditional models as we seek to help children and their families.

Philanthropic support has enabled us to build programs outside our operating budget that support caregivers and teams, including attending End Well.

Our goal is to create a psychologically safe space where we can reflect on how we, both as individuals and as a team, can serve children and their families. We support disagreement, encourage vulnerability, and explicitly recognize the love and joy inherent in this work. Then we muster the courage to do it with kindness and compassion.

EW: Cultures around the world have different practices and beliefs surrounding death. How have your cultural background and personal experiences influenced your approach to end-of-life care and grief in pediatric settings?

Glen Komatsu: We recognize that there are three cultures to be acknowledged in the care of any human being: the culture of the individual child and family, the culture of the clinician and team, and the culture of healthcare.

We adopt a stance of cultural humility and try to learn as much as we can about the culture of each child and family. As a team, we have also done work sharing our individual cultural stories.

We then spend considerable time helping families understand the culture of healthcare, including what is and is not possible within the constraints of our system.

EW: What societal norms or beliefs about death and dying, particularly within pediatric care, need to be challenged or redefined?

Glen Komatsu: Children are never supposed to die. The reality is that children do die and will continue to die, and our society struggles to accept that.

As a young neonatologist, I became deeply upset whenever a baby died. Eventually, I realized that some babies will die despite our best efforts. We cannot take all the credit when children live, and we cannot take all the blame when they die.

Other beliefs must also be challenged: that a child’s death must be someone’s fault; that the parents and doctors did not “fight” hard enough; that the healthcare team was defeated, missed something, or simply was not good enough.

I am regularly reminded of the humbling nature of our work. There is still so much we do not understand or know.

EW: You’ve witnessed the power of mindfulness and resilience in your work. What practices have helped you and your team maintain well-being while handling difficult situations?

Glen Komatsu: First, I try to embody, practice, and model mindfulness in my work and in my interactions with children, families, and colleagues. That means bringing my full presence to every encounter, visit, and phone call as much as possible.

We begin every interdisciplinary team meeting with a thoughtful reflection. It gives us a safe environment in which to consider our emotions, our feelings, and how the work affects us.

I might read articles from the press, show videos or TED Talks, reflect on current events, share stories, play music, or invite the team to journal. Anything is fair game.

During the meeting, we also debrief difficult deaths and challenging experiences with children and families. I try to offer small educational insights throughout the conversation, helping the entire team, especially nonmedical members, better understand what is happening.

I provide encouragement, support, and gratitude to team members who call or text me with questions. I try to reassure them that they are not bothering me.

Finally, we acknowledge the whole team after we have done our best for a child and family.

EW: How can other medical directors and team leaders use insights from End Well to strengthen their practices and better support their teams and patients?

Glen Komatsu: End Well can serve as a catalyst, stimulating the creativity and imagination required to enhance our practices.

Every team and program has its own needs and culture. End Well does not provide all the answers. It is up to those of us who attend to carry the spark it lights back to our teams and programs, then use it to make ourselves better.

EW: Is there a book, film, or other piece of media that has profoundly shaped your views on mortality, particularly within pediatric care and your role as a medical director?

Glen Komatsu: There are many books, but my short list includes Frank Ostaseski’s The Five Invitations, Michael Kearney’s A Place of Healing, and Tom Hutchinson’s Whole Person Care.

None are specifically focused on pediatrics, but all apply to children and families. They are particularly valuable books for clinicians.

I am also interested in leadership and mindfulness. That list includes Chade-Meng Tan’s Search Inside Yourself, which inspired a course I now teach, as well as Marc Lesser’s Know Yourself, Forget Yourself and Seven Practices of a Mindful Leader.