Dr. Brock is currently the Vice-Chair (incoming chair (2020-2021)) of the Palliative Care Special Interest Group for the American Society of Pediatric Hematology Oncology, the Co-Chair of the Palliative Care Working Group for the Georgia Cancer Control Consortium, and was a American Academy of Hospice & Palliative Medicine (AAHPM) planning committee member for the American Society of Clinical Oncology (ASCO) Supportive Care in Oncology meeting.
One of Dr. Brock’s primary loves is teaching and mentoring. She is currently the co-director of the Pediatric Communication Series where she and the other members of PACT train residents, ICU and oncology fellows in best-practice communication techniques using simulation. Along with Meghan Tracewski, CPNP, they have developed over 40 simulation-based communication scenarios for fellows. For this work, she has received teaching awards and distinction from the Division of Pediatric Hematology/Oncology and the Emory University School of Medicine. She continues to actively mentor multiple medical students and residents, multiple of whom are/will be Chief Residents, and three of whom recently matched to palliative care and pediatric oncology! Rising stars in their own right.
Q and A with Katherine Brock
What is Pediatric Palliative Oncology?
Pediatric palliative oncology is a field that combines pediatric oncology (pediatric cancer care) and pediatric palliative care. Pediatric palliative care is specialized medical care for children living with a serious illness. The goal is to provide whole-person centered relief from the symptoms and stress of a serious illness and improve quality of life for the patient and family throughout their entire journey with illness, or in this case, cancer. We provide palliative care or supportive care based on the needs of the patient, regardless of prognosis, and often start early in the disease course to help manage symptoms, side effects and emotional distress that comes from the cancer or the treatments.
There are only a small number of doctors who work in this area but we have all completed 7 years of training to support children, adolescents, young adults and families who are dealing with cancer.
How did you decide to pursue this area of medicine?
I worked in a pediatric oncology clinic when I was in college, and started working with the team there to develop a bereavement program. I met with families whose children had died from cancer and heard about their experience and needs. From age 20 on, I was hooked into this world.
Once I became an oncology fellow, I found myself often wishing I had more training to deal with the suffering we caused from the treatments, therapies, and surgeries. I wanted more time to sit with families and really understand their experience. I felt like I was missing some of what I went into medicine for – a deep connection with patients and families and the time in my schedule to support that. I was drawn to the part of oncology that involved supporting and guiding families through difficult experiences. So after fellowship in oncology ended, I pursued additional training in palliative medicine (to palliative = to relieve suffering) and hospice care. Now, I combine these two worlds by running a Supportive Care Clinic for children, adolescents, and young adults with cancer. We focus on their hopes, goals, quality of life, and managing their symptoms so that they can live as well as possible for as long as possible. We also attend to parents, caregivers and siblings needs for support and coping throughout illness.
In your opinion, what is most misunderstood when it comes to Palliative Care for children and adults?
People often think that palliative care is hospice care or end-of-life care. Hospice is a service designated for people who have less than six months to live and where the main goal is to help keep you as comfortable as possible and live as well as possible. Palliative care is supportive care focused on quality of life that can and should be provided throughout the entire disease course. Hospice care and end-of-life care is just one aspect of palliative care. In pediatrics, many of our patients will live years or even decades after we meet them, so it is much more about supporting families throughout the illness journey.
Some people also wonder whether their doctor is giving up on them. Actually, this means your doctor wants the very best care for you! Because we know that early integrated palliative care improves quality of life for patients and families, leads to better symptom management, and in adult palliative care, has even been shown to help patients live longer.
What is important for you to communicate to a parent of a terminally ill child as it relates to Palliative Care?
If your child unfortunately has a disease that is life-threatening or life-limiting, palliative care (which may be called different names at different hospitals) can be an added layer of support to you during this part of your journey. Palliative care can find out what is important to you, focus on achieving your hopes, making each day as good as possible, answer questions about your worries, manage symptoms associated with worsening disease, and help prepare for the uncertain future ahead. While it can be scary, most families actually say “I wish we had met you earlier.”
Why is it important to have a plan before we need one?
If your child is getting sicker, it is important to plan for the future. This could include topics such as where you or your child wants to be (home, hospital), how they want to spend their time, how they like to be comforted, what makes them have less pain, and how they want to be remembered.
One of the most impossible questions is — If it must be that your child will die, what does a “good death” look like for them? If you hope to be at home, in your own bed, surrounded by loved ones, we can very likely make that happen, but it takes planning and putting the right supports in place. Families can think about these questions and prepare using this guide from the Courageous Parents Network.
You are known for your skillful mentorship of multiple medical students. Are they more open to palliative care and are there more opportunities opening in the field?
Interestingly, in medical school, we had years of education about how to help people live longer, but very little education about how to help people live well. And less even about how to help people when we cannot cure or fix the problem. I think about this as “doing for the patient, rather than to the patient.”
Medical education has been steadily changing over the last decade with medical students and residents now getting more exposure to palliative care. I work with multiple medical students on palliative oncology projects and we have many students thinking about this field as a career choice, which is great! We are always looking for empathic, kind-hearted, smart, driven people to help grow our field.
If you could have one conversation with someone making end-of-life decisions what would be most important for you to convey?
There isn’t something that is most important to me to convey. It’s the reverse! Most of my job is to listen – to listen to what the family’s values are, what the patient wants, to listen to what a child or teen is worried about, to hear stories about the people who support them through these times, to listen to what they want their legacy to be. Then, based on what I hear while actively listening, I can support a family, and guide them to a medical plan that matches their values.
There is no one-size-fits-all here. There can be many right plans because it’s only about what’s right for you and your family at this time.
If people would like to reach you directly for additional information or assistance, how would they do so?
Our Supportive Care Clinic can be reached at AflacSupportiveCare@choa.org.
If you are interested in finding out more about palliative and supportive care for children, you can also see our webinar titled “Palliative Care: Caring for the Whole Child” on the CURE Childhood Cancer website.