What palliative care means for pediatric patients and their families

When most people hear of palliative care, they immediately think about hospice or end-of-life treatment. While those are elements of palliative care for some patients, there’s so much more to it.

November is recognized as National Hospice and Palliative Care Month and is an opportunity to educate, advocate and highlight this very specialized level of care, especially for pediatric patients.

What is palliative care?

“Palliative care is specialized, interdisciplinary medical care for patients with extended, complex, chronic or life-limiting illnesses,” said Michele Hagerstrom, BSN, RN, nurse coordinator for Mary Bridge Children’s Palliative Care and Complex Primary Care. “Our goal is to help patients and those close to them to live their best lives — whatever that looks like for them.”

Palliative care adds an extra layer of support focusing on psychological, social and emotional needs of patients and their families. Providers work closely with patients and their families to offer strategies for symptom management, guidance to optimize communication with multiple providers, and assistance in making complicated decisions.

Because it’s commonly misunderstood as cancer care or end-of-life care, hearing providers mention palliative care can be scary for parents. For Kato Wade and Heidi Harris, though, it was a relief to be offered palliative care for their 10-year-old daughter, Ainsley.

“Like most people, we knew about hospice, but not about palliative care,” Harris said. Most children with the progressive disease that Ainsley has do not live beyond childhood. “Since her diagnosis at one month old, we knew there would be a time when we might need hospice care, but nobody every introduced us to palliative care.”

Ainsley has a leukodystrophy, a type of neurodegenerative disease that leads to the deterioration of the brain’s white matter. Her disease began to progress when she turned five. Over the course of a few months, Ainsley lost her ability to walk, eat, and eventually even to hold up her own head. Soon, she began to have uncontrollable seizures.

“Ainsley’s whole life — and ours — changed almost overnight,” Harris said. “As a mom, I felt like I should know how to parent through any challenges my child might have, but nothing could ever prepare a parent for this. We needed help.”

Ainsley started receiving palliative care services at Mary Bridge Children’s. It’s become a very positive and necessary part of her care. While they weren’t sad about the referral to palliative care, Harris remembers how their friends and family reacted—  many offered sympathy, assuming that it meant Ainsley was nearing the end of her life.

“The reality is that palliative care is about living! Ainsley has a lot of life to live, even as her medical needs increase,” Harris said.

Complex, chronic, extended or life-limiting diagnoses that can benefit from palliative care include, but aren’t limited to, cancer and tumors, genetic conditions, and neurological disorders.

For Ainsley and her family, palliative care has given them the ability to:

• Choose the right care team of physicians and specialists who know, both individually and as a team, the best ways to approach Ainsley’s treatment.
• Calibrate goals and adjust when those goals are no longer realistic.
• Coordinate with Ainsley’s care team when her family is interested in trying something new.
• Weigh the risks and benefits of medical decisions and treatment options.
• Discuss their wishes for emergencies, advanced planning and end-of-life care directives for Ainsley.
• Have a team that advocates for Ainsley and understands the difficulties families face in making medical decisions.
• Trust that their palliative care team will be honest in their experiences and recommendations for what might come next.
• Have confidence that Ainsley’s care team sees her as a whole and complete person.

“The most important thing one of our palliative care doctors told me was, ‘If I think you’re wrong, I’ll tell you,’” Harris said. “Hearing that lightened the guilt and fear of parenting a child with such extraordinary health needs. We have to absorb so much medical information, understand side effects, weigh the risks of acting or not acting on something — all in addition to just being parents who want our child to be happy, free from pain and thriving in whatever ways she can.”

From offering strategies for symptom management, to following patients from various units and specialty clinics, Hagerstrom said palliative care teams exist to provide support and assistance for families as they make complicated decisions.

“The level of support varies based on each patient but includes everything from coordinating care to helping patients cluster appointments so there are minimal visits to the hospital,” Hagerstrom said.

Using a palliative care approach doesn’t just apply to medical appointments or life in the hospital. Ainsley’s family also used the palliative care team to help figure out how to keep her in school, despite her changing health needs. “Returning to school hadn’t even entered my mind as her health was deteriorating,” Harris said. “Ainsley has always loved school, and having her palliative care team help figure out a way to make it safe and possible for her to return meant she could go on being a kid in that one crucial way, even as so many other things in her world were changing.”

Caring for a child with a life-limiting diagnosis is difficult work, but it’s also rewarding. Mary Bridge Children’s Palliative Care program’s goal is to give families a voice and the opportunity to enjoy every moment as best as they can.

“Even as we find ourselves constantly adjusting to Ainsley’s deteriorating health, palliative care helps us keep the focus on the fact that she’s a kid first,” Harris said.

Mary Bridge Children’s Palliative Care program is currently on hold as we actively recruit for this extremely small sub-specialty in pediatric medicine. We eagerly anticipate bringing back our full scope of services to help more kids like Ainsley. If you have a child with complex, chronic, extended or life-limiting illnesses and are interested in learning more about care coordination and services available, please contact Michele Hagerstrom, BSN, RN, nurse coordinator for Mary Bridge Children’s Palliative Care and Complex Primary Care services.

Many of the comfort therapies associated with palliative care at Mary Bridge Children’s are made possible by generous community donations. Make a difference today by giving to Mary Bridge Children’s Foundation.