A Special Q&A on Caring For Children Facing Serious Illness

Michelle Hug is a certified Child Life Specialist with over 15 years of experience helping children and families cope with serious illness and the end of life. She is the child development expert on the medical team and finds ways to translate medical information to children and families. Michelle helps grown-ups with questions like, “How do we explain leukemia to our four year old? How do I tell my children I have cancer? Do I have to tell them? Why?” She helps children with questions like, “Is it my fault I got sick? Is it my fault my mom/dad/brother got sick? Am I dying? Why is this happening?” Michelle believes that when children have the information they need to understand what is happening they can make choices that will best serve them. They can choose whether or not to visit, what to say or write or draw and perhaps, most importantly, know they are included and respected by their family.

Michelle regularly wears a unicorn headband to work and incorporates as much play into her work as possible. After graduating from UC Davis, she received her Master’s degree in Child Development and Child Life in Hospitals from Mills College. Michelle has helped families at Lucile Packard Children’s Hospital at Stanford and Kaiser Permanente Hospital in Santa Clara where she currently works and has started a program for children of adult patients and in private practice.

How are you innovating in the field of serious illness care and the end-of-life experience?

The adult palliative care team and I are helping families include children, even young children, in conversations about and experiences during end of life care. When necessary, we welcome them into the ICU setting. I talk about appropriate language, why children need to be included, and help families say the words when asked.

What are your top priorities in this work?

My top priority is that children and teenagers get timely and developmentally appropriate information about what is happening to their loved one. When kids are informed, supported, and offered choices they make decisions that will serve them best in the long run.

How are you incorporating human-centered design into your work?

Regardless of age, people near the end of their lives think about their children. By helping them find the words to talk about what is happening and offering legacy making activities the people close to the end of their lives can help their loved ones. The person being cared for can provide the help — it’s a critical moment and shift.

Why did you choose to transform serious illness and the end-of-life as a priority in your work?

Children of seriously-ill, adult patients can be a forgotten group. They are a group that society and many professionals feel so distraught about that they are often excluded from the information and moments that will help them the most. Children and teens can cope incredibly well when given appropriate information and choices. They deserve the chance to cope on their own terms and I work to help families in crisis give kids and teens that chance.

If you could wave a magic wand, what would appear?

In the context of this work, safe, pain free, quiet and calm spaces for children to be with their loved ones who are very ill. The wand would also take care of all the well-meaning but difficult to understand and confusing language around death i.e. “your mommy was so good that god wanted her.” That is so confusing and scary to a child!

In your organization’s long-range planning — say 10 years out, what does caregiving, serious illness care, and the end-of-life experience look and feel like?

I work in the hospital and know that in 5+ years many people will still have their end-of-life experience in the hospital. I want palliative care to actually be at diagnosis meetings and a part of the team from the beginning. I want the team to be robust and supportive and the family of the patient involved at the start as much as possible. Continuity of providers and choice of providers and type of care is critical for patients. We can make the experience less fragmented and more seamless for the patient and their family and friends as a whole.

What advice would you give to other leaders interested in changing serious illness care and the end-of-life experience?

Be clear about your why and what the change looks like in practice. Be persistent and patient at the same time.

What is inspiring you today?

First and foremost, I am inspired by children. Especially children under age 10 who are given the space and time to be exactly who they are. Adults can learn so much if they close their mouths and take time to observe children’s play and communication.

Second, parents of children who are ill and who are somehow able to let their child grow and express and experience challenges so they learn they can cope with them. Watch a mom put her baby with leukemia down for a nap and let him fuss for a few minutes while he puts himself to sleep so he knows how to put himself to sleep.

And, parents who are dying and can talk to their young children about it. Most of these parents have been upfront from the beginning, addressing that death is a possibility. These parents know what their children need and are able to put that in front of the fear and pain that comes with serious illness.

What are your favorite books for families facing serious illness?

Lifetimes: The Beautiful Way to Explain Death to Children by Bryan Mellonie and Robert Ingpen

The Invisible String by Patrice Karst

Raising an Emotionally Healthy Child When a Parent is Sick by Paula Rauch and Anna C. Muriel

How to Help Children Through a Parent’s Serious Illness by Kathleen McCue

The Whole Brain Child by Daniel J. Siegel and Tina Payne Bryson