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Cancer Pain at the End of Life


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.




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!





Post-Operative Pain: Phoebe’s Story



Many children with cancer require frequent surgical interventions – to diagnose, stage, or treat their disease. Other common surgeries for children with cancer include collecting a biopsy, placing a central line, or removing all or some of a tumour. This, combined with the move to day surgery to minimize the time a child spends in the hospital, means that parents are often responsible for managing pain and administering pain medications at home, and advocating for and learning about optimal pain management for their child while in the hospital.  

This can be a very daunting task as even the most routine surgical procedures can become painful and cause feelings of anxiety for children.  For many parents, it can be difficult to accept that your child needs pain medication. Adding to this, the media’s portrayal of abuse of opiate pain medications can make it feel overwhelming or even impossible to consent to give these to your child. Parents often worry that their child may develop an addiction, or have uncomfortable side effects from these medications.  These thoughts can lead to parents choosing to withhold medications for pain, or not giving these medications consistently and as prescribed.

However, poorly managed post-operative pain can delay healing, cause chronic pain, and lead to distress and anxiety with subsequent procedures.



by Jenny Doull, mother of Phoebe

Hearing that your child has cancer turns your world upside down. Our daughter Phoebe’s diagnosis of leukemia was our first experience in the medical world and we found ourselves suddenly and frantically trying to learn all that we could about this new place, so that we could adequately care for her. We learned that caring for a child with cancer is complex and often requires around the clock monitoring and creative solutions to manage pain. It’s an ongoing learning process and managing post-operative pain is one of the many aspects that parents and caregivers must become familiar with.  

Phoebe was diagnosed with cancer when she was just 9 weeks old. At the time of her diagnosis, due to her age, it was incredibly difficult to determine if she was in pain. She couldn’t speak and we were just getting to know her. She was also very small and the thought of giving her pain medications in addition to chemotherapy was very difficult for us as parents.

Phoebe was just 9 months when she went through a bone marrow transplant, a procedure which included multiple surgeries. By this time, we began to recognize behaviors that Phoebe would exhibit when she was in pain, but we were reluctant to give pain medication stronger than Tylenol because we were unfamiliar with and fearful of possible side effects of other pain medications. I remember nights when her pain was so severe, she would hold her breath, grunt and cry out. Her heart rate soared and we realized that if we couldn’t get ahead of the pain, she would experience even more complications. Her doctor at the time was very firm with us, explaining that she should not be in this much pain, that we have the tools to control it and doing so will help her heal. We agreed to a constant infusion of morphine – and as a mom, I remember not wanting to talk about this to anyone. Seeing my daughter in so much pain caused me to feel ashamed and scared.

But I quickly realized, when I saw Phoebe’s breathing relax, her heart rate come down, and as I watched her sleep peacefully and without pain, that we did the right thing.

As she grew older, we worked with Phoebe to come up with pain management techniques that she could do herself; simple things like deep breathing, distraction, and talking when she felt scared before a surgical procedure, helped immensely.  When we expected pain to be severe as a result of a more extensive surgery, we relied on stronger medications used in combination with psychological approaches to pain management. Our past experiences taught us the importance of remaining ahead of Phoebe’s pain.

To properly heal and to have optimal quality of life, pain needs to be managed and controlled.  

Some of our hardest memories of Phoebe’s cancer treatment are pain related. However, looking back, we realize that the most important thing we did for Phoebe, other than love her and care for her with everything we had, was help her to be comfortable. Cancer treatment is hard enough for a child, it shouldn’t be painful.




Fortier, M. A., Wahi, A., Maurer, E. L., Tan, E. T., Sender, L. S., & Kain, Z. N. (2012). Attitudes regarding analgesic use and pain expression in parents of children with cancer.Journal of Pediatric Hematology/Oncology, 34(4), 257–262.



Jenny is a parent and passionate childhood cancer advocate, the latter role beginning in 2010 when her 9 week old daughter, Phoebe, was diagnosed with infant leukemia. Since this diagnosis, Jenny has worked to raise awareness of childhood cancers and advocate for change. She has co-organized national childhood cancer awareness events on Parliament Hill which have included lighting the Peace Tower gold to highlight the needs of children with cancer. She is co-founder of the Phoebe Rose Rocks Foundation – an organization founded in memory of her daughter Phoebe to raise funds for childhood cancer research, a founding member of Ac2orn (Advocacy for Canadian Childhood Oncology Research Network), and a parent representative for C17’s Research Network. Jenny enjoys writing and shares her family’s experience with childhood cancer and grief in a blog titled, Phoebe Rose Rocks.