The intersection of oncology and pediatric palliative care
Today is International Childhood Cancer Day—a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors, and their families.
Canuck Place treats over 190 different diseases and conditions, and in 2021/22, cancer accounted for 19% of diagnostic categories for children on our program.
At Canuck Place, we offer interdisciplinary care—care that includes pain and symptom management and intersects with comfort and compassion through the inclusion of grief and bereavement counselling, art, music and recreation therapy, family respite care, and more.
Our clinicians make it their priority to ensure each child and family has an individualized, holistic care plan, and for children suffering a life-threatening cancer diagnosis, “intensive comfort care” is at the centre of our work.
We sat down with Canuck Place physician and pediatric oncologist at BC Children’s Hospital Dr. Natasha Datoo to discuss the intersection between oncology and pediatric palliative care.
Tell us about your role at Canuck Place and BC Children’s Hospital. What do you do?
I’m one of the Pediatric Palliative Care (PCC) doctors at Canuck Place. I work with a large multi-disciplinary team of doctors, nurses, nurse practitioners, recreational therapists, music therapists, and counsellors who all specialize in caring for children and families living with serious illness. As a team, we work together to provide symptom management, counselling, care coordination, enhanced communication, and overall holistic care for these children and their families. As one of the doctors, I help take care of patients at the hospice, as well as at the hospital, and sometimes at home.
Why did you want to pursue a career in oncology and pediatrics?
I always knew I wanted to be a doctor and I always knew I wanted to work with children. Pediatrics was something I always just knew was right for me. I find I am more comfortable around children than adults! Children have always inspired me because they are always so resilient, so wise, so honest, and really just want to play and have fun even when they are sick. Pediatric oncology is a special field where we get to meet and then walk with families through one of the hardest times in their lives. I like to fix things and one of the great things about oncology is we have the possibility to cure = cancer which is such a privilege. I love that it is fast paced, with a lot of acute care medicine but we also get to form close relationships with children and families. A retiring oncologist once told me we are like surgeons with a bit more patience.
As an oncology physician, there is often a desire to find a cure. How does your training in pediatric palliative care inform your work with patients who have cancer?
This is one of the hardest things as an oncologist—to have to tell your patient that there are no more anti-cancer treatments that will help them or that we will not be able to cure their cancer. As I just said most of us who go into oncology like to fix things! However, one of the main reasons I chose to do extra training and become a PPC specialist was to truly understand how we can support the patients we cannot cure. Because I have the privilege of being able to be on both teams, I really am able to honestly say to a family, despite the cancer being back, and the chemotherapy not working to slow it down, that there is a whole group of people here to support you and help your child in different ways. I get to see the impact of the care we provide at Canuck Place for terminal patients, from creating individualized care plans with families, to grief and bereavement counselling, and lots of love and laughter through recreation therapy. All of these things allow me to feel confident in being able to communicate to families that we are there for them even when a cure is not possible.
One of the things a palliative care team is specialized in is supporting people facing uncertainty. There is so much uncertainty in a patient’s cancer journey—the uncertainty before the CT scan, the uncertainty if this round of chemotherapy will cause me to be sick, or the uncertainty of needing to be admitted to hospital for a fever. These patients and families live with uncertainty every day. My training in PPC has helped me support the uncertainty of children and families living with and going through cancer treatment.
What are the first steps you take as a physician for a child who has a life-threatening cancer diagnosis?
One of the first steps is ensuring a child is safe. That is often the first thing I tell families even when we are just starting to address the child’s symptoms and we don’t know what is going on. I go sit down with families and the child if appropriate and explain we are worried they might have cancer. I tell them I know that is so scary but we are all here with you. I often tell them there is nothing they did or did not do to cause this and that they did all the right things as parents by bringing them in and knowing something was wrong. The hardest part is always the first few days as there is so much uncertainty while we have to do tests to figure out what is wrong.
In the past, you’ve used the term “intensive comfort care”. Can you explain what this means to you and how you use this approach in your care for children?
I think this term came into my mind as in oncology we often use the words aggressive chemotherapy or aggressive /intensive treatment to describe therapies that will be hard on the body but have the intention to potentially cure a cancer. When we have a situation where these aggressive oncology treatments have stopped working, the old but often still used way to think or describe palliative care, is of doing nothing or “just treating the symptoms”. I have found words really matter and this sounds to families like we are giving up or without chemotherapy we just sit and allow the child to continue to get sicker and suffer. And this is absolutely not true.
When we know that anti-cancer treatments are no longer benefiting a child, we focus on optimizing their comfort and treating their symptoms, this is intensive medicine. It takes a huge team of people and is intensive comfort care. Most people do not know how intensive palliative care treatments can be and I mean that in the sense that we provide daily, acute symptom management with multiple medications to optimize comfort, we provide intensive counselling, and work very hard to provide recreational activities for the child and family— all of which is intensive comfort care!
At Canuck Place, we say we provide interdisciplinary care. How do you as a physician provide interdisciplinary care with children who are diagnosed with a life-threatening cancer?
As a physician, our role is first and foremost to assess and treat a child’s physical symptoms, such as pain, nausea, trouble breathing, change in sleep or eating habits. We use the extensive tools we have with pharmacologic and non-pharmacologic treatments to help a child. If the physical body is not feeling good then it is almost impossible to be able to treat and heal the mind and emotional health of the child. So for me, I think this is very important for us to be very aggressive in how we treat physical symptoms. Hopefully, once our physical symptoms are better controlled we can then focus energy on healing the emotional.
We have a wonderful large group of people on our team whose specialty is to help ease the suffering of emotional, social, and spiritual aspects of a child and their family. I think as a physician in PPC, we truly have a unique privilege to work with this group of people and learn things from them. When I was doing my PPC training I spent a lot of time with the counsellors, recreation therapists, and our nurses/nurse practitioners hoping to gain some of their skills so I could better support children as a physician. In PPC we also spend a lot of time and often intensive moments with families and children, and we need to know how to talk to children about their illness and be able to support them and their families if they has hard questions. I’ve learned so much from the Canuck Place team on how to do this alongside doing the typical “doctor” role. I also think physicians can benefit from understanding the importance of specialized nursing care. I have learned so much from observing our Canuck Place nurses assess symptoms, put medication through a pump, and tend to the bedside needs of children and families. The incredible nursing care I’ve witnessed has helped me prepare families on what to expect closer to the end or after a child passes away.
How do you hope the care for children with life-threatening cancer diagnoses evolves?
We are in a new era of cancer treatments which is exciting and we are curing more children than ever before. We are also finding ways to prolong life and change acute cancer into a more chronic condition. This means children are living with their cancer but may not be cured from it. They may have more or different symptoms based on the new immune therapies we give. The PPC field will need to adapt on how to not only treat and care for these children but also how to walk alongside the oncology team and families in this grey zone (where the non-curable cancer is not going to progress quickly but at some point will get worse).
My hope is that the oncology team and the Canuck Place team will continue to have and build a strong working relationship, where introducing the PPC team is not only done when the cancer is not curable, but earlier on in the child’s journey, so families have access to more support. As you have heard, PPC is not only about the end of a child’s journey, it’s about enhancing quality of life, easing suffering, and walking with families and children living with uncertainty. As more phase I/II trials come along, my hope is that families who are offered these trials are also offered good PPC to supplement their quality of life and help them live a better life for longer.