by Marjorie McGibbon, RN BScN, Paediatric Oncology Patient Navigator
There are many tears in the heart that never reach the eyes. Author Unknown
Four years ago this November 1st, I lost my Dad to cancer. Mercifully, it was relatively quick (6 weeks from diagnosis to death) and his pain was very well managed. Losing a parent in no way compares to the death of a child, my children are the light of my life, and without them my world would be dark. The shadows of darkness can block the world’s light for all of us at different stages of our journeys, but it is sometimes deep within the darkness of grief that we learn most about ourselves and the world around us. Losing my Dad taught me many things, but it wasn’t until a close friend said to me: “But just think about how comfortable he is now, and, he is cancer free again” that I had my “lightbulb” moment in my grieving. Dad no longer had cancer, and even better, he no longer felt pain.
When I think of how I feel as a parent when one of our children experiences pain, my heart aches. Pain in children can be difficult to assess, and as death approaches, becomes even more complex. There is a protective phenomenon that washes over us as parents and although we may desire with every ounce of our being to take away or relieve our child’s pain, sometimes we are fearful of the tools and practices required. However, it is with these tools, medications, and practices that we see the beauty of being able to provide peace and comfort to both the child and family as end of life nears.
Pain is a common symptom for children throughout their experience with cancer. However, it tends to become more severe as end of life nears.
With end of life comes an increase in symptoms, with one of the most frequently reported ones being pain. We have many forms and types of medications to choose from in managing end of life cancer pain but opioids continue to be widely used because of the efficacy in pain relief. Fear of opioid use exists across parents of all stages, with parents being fearful that death may happen sooner, or that the child may be in a sedated state until their death. The goal is not sedation (although sedation can be a side effect), but to provide excellent symptom control, so that the child and family can enjoy peaceful, quality time together. Typically doses are slowly increased to reach a controlled state of comfort, with preventative medications given to manage any potential side effects. If distress continues, the pain management team or local support staff will continue to explore the best combination of medications and practices to achieve comfort for the child.
Proactive measures can be taken like the administration of medications to prevent nausea and constipation alongside the opioids.
Recent advancements in the palliative care approach of pediatric patients are leading clinicians to work early on in the disease with the child and family to discuss the challenges ahead. If the goals and wishes of the family are explored when the child is relatively well, the family can be better prepared for the impact that end of life challenges may present.
Conversations with healthcare providers help parents and children feel in control and well prepared to manage symptoms such as pain, that happen at end of life.
Although we have not solved the mystery of pain entirely, we have learned many lessons in the years of helping children on this journey. Ultimately, open communication, self-awareness of patients/families, as well as staff, and recognizing that just as it takes an entire village to raise a well child, that same village approach must be taken to support the challenges of pain during life and death of the child.
Pain relief is one of the top priorities of pediatric palliative care. The goal of pediatric palliative care is to provide comfort care and symptom management, which can be done alongside cancer-directed treatments.
Snaman, J. M., Baker, J. N., Ehrentraut, J. H., & Anghelescu, D. L. (2016). Pediatric Oncology: Managing Pain at the End of Life. Pediatric Drugs, 18(3), 161–180. https://doi.org/10.1007/s40272-016-0168-2
Marjorie McGibbon obtained her Bachelor of Science in Nursing with Advanced Major from STFX University in 2004. Having always had a passion for working with pediatric populations, she began her career in the pediatric specialty of Oncology/Hematology & Nephrology at the IWK in Halifax. After also spending time in the Neonatal Intensive Care Unit at IWK, she moved with her husband to northern BC where her practice involved community pediatrics, public health, general medical surgical, as well as prenatal educator & breastfeeding support roles. Marjorie is passionate about supporting both families and staff caring for children of all ages with life limiting and life threatening conditions, and has recently become a certified trainer in Education in Palliative and End-Of Life Pediatrics (EPEC-P). Marjorie is the Pediatric Oncology Patient Navigator for Horizon Health Network NB and resides in Petitcodiac, New Brunswick with her husband & two children. A true Maritimer at heart, she is happiest playing in the waves of the Atlantic with her family in the summer months, and enjoys hitting the slopes with them when the snow flies!