BY KERRI PADGETT

In March, I attended a workshop hosted by the National Cancer Policy Forum and the American Cancer Society—Comprehensive Cancer Care for Children and their Families. Cancer is the leading cause of childhood death by disease, only second to accidental death. The conference began with the recognition that “A cancer diagnosis places an enormous burden on families and caregivers, who must manage the stress, anticipatory grief, disruption in family activities and school, and financial burden associated with caring for a seriously ill child. Parents must make difficult decisions about therapeutic treatment options with known toxicities, balancing survival and quality of life priorities often with limited or no support to guide their choices while navigating a complex and often unfamiliar medical system.” Of course, the same can be said for many many many pediatric diagnoses, not just cancer.

For me, this conference was both professional—I’m a parent advocate for pediatric palliative care—and personal—my son Kai was diagnosed with a brain tumor at eight-months old. He struggled through 16 months of chemotherapy and the treatments carried many physical and emotional side affects.  As I saw his quality of life diminishing—in part due to treatment and in part due to tumor growth—weighing the risk vs. benefit became a constant struggle for me.  After Kai quickly “failed “off of his third chemotherapy protocol, I chose not to pursue the fourth trial that was offered and focused instead solely on his quality of life.  Three months later he died, just after his second birthday.

This conference presented current trends in comprehensive cancer care and as well as goals, with the focus on improving quality of life along the continuum –from diagnosis through treatment, relapse, end-of-life and bereavement.  Each session included expert presentations highlighting current research and trends, followed by a patient/family story and open discussion panel.  The audience was a mix of clinicians, patients and parents, which made for rich conversation that brought to light the areas of greatest need: increased psychosocial support for families, communication training for providers, and embedded patient reported outcomes and quality of life studies. The end goal is to increase education about complex decision making for families and to decrease the traumatic stress that cancer patients and their families often experience.

Presentations covered a lot of ground, including the lasting effects of toxicity on pediatric cancer survivors, socioeconomic factors linked to varied outcomes, and long term resiliency for bereaved families. . The facts and figures discussed throughout the workshop were both empowering and devastating, as conversations surrounding childhood illness often are.  Here is what really stuck out for me, based on the research presented and the conversations that followed during the Q&A (my personal observations are italicized):

• • — The medical profession is still behind on paying adequate attention to the patient experience. Few clinical trials currently capture and track patient-reported outcomes, exposing a lack of organized focus on quality of living for patients and their families.   This is true across the care continuum from diagnosis through bereavement. Why does this matter exactly? Because without this information, clinicians don’t know what is and isn’t working, what does and doesn’t help families, and the end result is that they are ill equipped to help families make fully informed care decisions.

Providers admit they don’t focus on capturing patient-reported outcomes and explain that it is out of a concern of adding additional stress and paper work for families that are already burdened by so much else.  Providers also report that they often avoid initiating difficult conversations in general—including those surrounding poor prognosis or end-of-life decisions—for the same reason: not wanting to distress the patient or family, hoping, instead, that the patient or family will bring it up when they are ready. This is unfortunate for many reasons and is the opposite of what research has shown that parents want: even when the news is bad, parents report less distress when offered more information and ongoing conversation about prognosis and choices. Increased awareness and conversation also leads to more clear directives and goal-oriented decision making.  “Talking and listening is one of our most important interventions”, said Jennifer Mack, MD in her presentation Integrating Pediatric Palliative  Care: strategies for improving communication.  Dr. Mack encouraged providers to build strong trusting relationships with families over time by remaining open and being willing to have difficult conversations: “Communication about difficult subjects affirms that the clinician will be with the parent through tough times.  Parents who know what is ahead feel more prepared to be there for their children.”

Personally, Dr. Mack’s theory of communication holds true for me.  I was the parent who wanted to know everything.  At diagnosis, Kai was given an 80% chance of long-term survival (5 years).  Hearing those words as I held my 8-month-old son on my lap, I could not help but consider the 20% who do not survive.  Each treatment protocol we tried required extensive research on my part and intensive weekly check in’s with Kai’s providers as I teased out each side effect or potential gain.  As the weeks went on, his care team learned that for me more information was better.  Eventually they trusted that I could handle all of the facts and I trusted that they were being honest with me.  This relationship was essential as his disease progressed and more difficult discussions and decisions were required of all of us.  Because of the strong relationship we had built over time, I live with little regret surrounding the decisions we made for Kai’s life and death.  

• — Providers recognize that there is so much they have to learn from pediatric cancer patients and their parents, and that they need to pay attention to what the families have done and continue to do to honor their children.  Each family that spoke at the podium shared the devastating consequences that occurred as a result of to the current gaps in supportive care in pediatric oncology.  They told the stories of their children—Evan, Mattie, Alexandra, Alyssa— and shared the heartbreaking realities of childhood cancer.  A mother’s heartbreak as she repeatedly watched her little boy feel hopeless, isolated and depressed from years of unmanaged pain and anxiety.   Another parent talked about how he advocates for better at-home care after his son died in the care of a hospice agency that was ill-equipped to care for a young child. Each family’s story was poignant, heartbreaking and filled with fierce determination to honor their children by working to make it better for the next.

• — We need less harmful and more affective cancer treatments, but we must focus first and foremost on the quality of the patient/family experience in the here and now, regardless of prognosis. Cure is not always an option and surviving is no longer enough. Improved standards in supportive care will help all children and families NOW.  Palliative and supportive care must be introduced early and alongside curative treatment.  Patient and family quality of life must be studied alongside drug development.  Open, honest, informed conversation is the way for both families and providers to achieve resiliency no matter the outcome.

This focus on palliative care resonated especially with me. Kai’s tumor did not respond to treatment. And ongoing research was not going to save him. I had to shift my hope from cure to comfort. It meant a lot to me personally to hear the medical community – or at least this slice of the community – acknowledge that not all children will survive their illness and that we must pay equal attention to the non-curative aspects of their care. 

Clearly there is much work to be done to improve the patient and family experience in pediatric oncology.  As a parent who lost a child to pediatric cancer I was impressed and encouraged by the immense value the doctors placed on the experience of each family.  As I listened to the many leaders and advocates in pediatric palliative care, I heard question and hesitation in their voices as they attempted to address these unimaginably complex conversations.  I understood that their hesitation and pause did not come from a place of fear or inexperience but out of the genuine respect they have for what we parents have to bring to the conversation.

 Working in palliative care I often see the voices and priorities of families misunderstood by providers.  I hear that a family is not ready or not accepting or is in denial.  I have noticed that this view from the medical specialists is especially present when there is a lack of palliative support. At lunch on the first day of the workshop, I sat with another advocate, both of us focused broadly on pediatric illness in general hoping for better care for all families facing serious illness with their children.  As we discussed palliative care through the lens of oncology, we couldn’t help but wonder who is fighting for the rest of the families whose children have other diseases.  Rebecca Kirch, Quality of Life & Survivorship Director for the American Cancer Society, stated “If palliative care becomes standard practices in pediatric oncology, the rest will have to follow.”

My son’s tumor took so much from him at an early age.  I always felt lucky to have had the cancer diagnosis, because with that we were afforded so many additional services and support.  Many families with even more rare diagnoses get much less support.  It is important to me that all families with seriously ill children get the services they need to thrive and I was relieved to know that the oncology population feels the same.   

The workshop concluded with these next steps:

–       Increased attention paid to short and long term side affects and comorbidities.

–       Increased family and child input on management of side affects and toxicities

–       Need to improve standardization of pediatric hospice care

–       Need to improve awareness and availability of pediatric palliative care, separate from hospice.

–       Shift the terminology of posttraumatic stress disorder to recognize that posttraumatic stress is a natural human response and should be validated and supported.

–       Increase education and support services for providers of pediatric oncology and palliative care.

–       Continue inviting discussion which includes provider and family perspective.

A summary report of the Joint Workshop by the Institute of Medicine and the American Cancer Society can be found here.