Palliative Care
How Palliative Care Can Help
A diagnosis of pediatric cancer is life-changing for your family. Palliative care can assist in managing physical and emotional side effects for your child and your family while integrating your family’s personal beliefs. Early collaboration with the palliative care team is most beneficial for improving the quality of life for your child throughout their cancer care. Here, we will define palliative care, which is not the same as hospice care, review the key components of palliative care, and help you understand how palliative care can help.
What is Palliative Care?
Palliative care is supportive care to manage symptoms and decrease mental stress for children and families experiencing a serious illness. The goal is to improve the overall quality of life. Quality of life is defined as one’s ability to perform everyday activities and satisfaction with the level of functioning and control of their cancer. Palliative care is not based on a medical diagnosis. It is available for children of all ages, from neonates to young adults. People often believe that palliative care and hospice care are the same. This is not true. Both palliative and hospice care are supportive therapies for managing a serious illness; however, hospice care focuses on end-of-life care, defined as a life expectancy of 6 months or less.
Patients in hospice care are no longer actively seeking curative treatments. Palliative care is focused on making your child’s cancer journey a bit easier by focusing on quality of life and communication.
How does it Support the Family?
Palliative care is about supporting you and your child throughout your child’s cancer. Conversations with a palliative care provider include establishing treatment goals, clarifying expectations, and understanding your family’s values and priorities. These providers ensure you understand the medical jargon you hear. They can also talk with you and your child about things your child may experience during your child’s cancer journey and to ensure you understand the diagnosis, recommended treatment, and options in treating cancer. They may ask questions such as, “What information did the medical team share with you today?” to ensure you/your child has a solid understanding of the information provided by the medical team. Sometimes, medical information is presented quickly without time to let you/your child process the information.
Who among us has not had questions after speaking with a doctor? Many people experience this. A provider can address outstanding questions or contact your medical team for clarification. They also ensure you have a correct understanding of all the medical terms involved in your child’s cancer journey.
Core areas of Palliative care
Palliative care is made up of three areas:
Symptom management
Emotional support
Spiritual support
Symptom management
Your child’s physical response to cancer treatments is unique to your child’s body. No two children respond the same. Common physical symptoms experienced during cancer treatments are pain, fatigue, fever, and infections. Other common symptoms are anxiety, restlessness, shortness of breath, nausea, constipation, weight loss, skin itching, and skin wounds. 1
The most common symptom is pain. Playing with friends, reading a book, or learning when experiencing pain is difficult. Pain management goals are to be comfortable and allow your child to participate in daily activities. The management of pain is often accomplished by using medications and non-medical interventions. The first step in medication management is using non-opioid drugs, such as over-the-counter NSAIDs, like acetaminophen and naproxen, or a prescription NSAID medication. The second step in managing moderate to severe pain is the use of opioids.
The benefits vs the side effects must be considered when using opioids in children. Research studies on the use of opioids in children are limited 2. Non-medication pain management is the use of nontraditional therapies such as music therapy, massage, and acupuncture to help pain. Symptom Management providers often recommend a combination of medication and nontraditional therapies to minimize the use of drugs, particularly the use of opioids.
Emotional support
Cancer treatments affect the whole family emotionally. Emotional support for your child, you, and your family is very beneficial through the cancer journey. Two widespread feelings are fear and loss. The fear can be of the diagnosis, unknown treatments, and how your child and family will cope. There is also often the feeling of loss. Loss of “normalcy” to your days as daily routines are disrupted. Family members may be separated as one parent stays with the cancer warrior. The other parent may need to return to work or care for siblings at home. Other concerns you may experience that add mental stress are fundamental issues like food/meal support, transportation, childcare for siblings at home, and financial strain.
Symptom Management will encourage you to speak with them regarding any of your fears or concerns so they can help you find resources. Your palliative care team is made up of doctors, nurses, social workers, pharmacists, counselors, chaplains, child life specialists, nutritionists, and art and music therapists. A mental health therapist can speak with your child and you about building coping mechanisms for stress or helping you find a support group. Social workers can help you connect with resources for financial assistance, transportation, and community resources. You are not in this alone. Pediatric support organizations, like Sassy Carmen, offer support for many of these concerns.
Spiritual Support
In general, spiritual support examines the meaning and purpose of life. Think of spiritual support as mind-body support. It seeks our inner peace and can provide comfort and hope. Religious support is a type of faith-based spiritual support. Palliative care providers will discuss any specific religious practices that may be important to you and your child during this difficult time. They will also help you connect with the clergy.
Conclusion
Palliative care providers are available to assist you and your child in focusing on quality of life while undergoing cancer treatments. Collaborating with a palliative care team results in better management of symptoms, a decrease in hospital admissions, and feeling better prepared for future events. They are also focused on assisting with communication and decision-making. Don’t wait for Palliative care to be involved with your child’s care. If your medical team does not offer this for your child, please ask for palliative care involvement! Early involvement can improve treatment outcomes.
References
1. Providing Palliative and Hospice Care to Children, Adolescents, and Young Adults with Cancer https://doi.org/10.1016/j.soncn.2021.151166
2. Opioid Prescribing for Acute Pain Management in Children and Adolescents in Outpatient Settings: Clinical Practice Guideline https://doi.org/10.1542/peds.2024-068752
Spirituality in Childhood Cancer Care https://doi.org/10.2147/NDT.S42404
St. Jude Children’s Research Hospital https://together.stjude.org/en-us/medical-care/palliative-care.html
Multidisciplinary Pain Management for Pediatric Patients with Acute and Chronic Pain: A Foundational Treatment Approach When Prescribing Opioids https://doi.org/10.3390/children6020033
