It’s that time of year for New Year’s resolutions. People everywhere will make commitments to better their lives in some way. Perhaps you are working on improving some aspect of your life. Maybe it’s your health, your home, or your relationships. Improvement is all about making things better. Courageous Parents Network (CPN) is designed to improve the experience for parents and medical providers caring for children with serious medical conditions. We have seen, both personally and professionally, the deep impact children’s palliative care (CPC) can have on the patient and family experience and thus promoting its value is core to our work. We want to educate and empower parents to request palliative care and inform clinicians about the power palliative care makes in our children’s health journey.
In our experiences as a parent of a child with cancer (AG), paediatric palliative care physician (EF), and paediatric psychologist (CS), we have witnessed how palliative care services can benefit children with cancer and their families. We also observe how often palliative care is offered, or received, too little or too late. Barriers may include resources, reluctance from clinicians to make the referral, or reluctance from families to accept the referral. However, whether by relieving symptoms, providing psychosocial support or by facilitating discussions about treatment goals, expectations and priorities, PPC teams see patients and families beyond their cancer diagnosis. PPC teams are invaluable allies throughout a child’s cancer treatment as they strive to help patients and families live more fully at every step in the path towards a cancer free future.
CPN recently launched a new guide for parents and clinicians called Improving the Pediatric Cancer Care Experience with Palliative support. The guide provides an overview of the benefits of palliative care, and how it can make a meaningful difference when treating a child. It walks parents and caregivers through the benefits of CPC; including addressing physical symptoms, alleviating anxiety, improving family and clinician communications, supporting siblings, and distinguishing PPC from hospice care.
We hope the guide empowers parents to advocate for palliative care during their child’s diagnosis, and explains the rich benefits involvement from a palliative care professional can bring to their world. It gives clinicians an outline to help explain the benefits palliative care can bring to patients and their families.
We welcome you to explore CPN’s vast library of other materials including pathways, guides, blogs, and videos from parents and caregivers alike. Our site has clinician and parent resources. Our passion is palliative care. Let’s work together to make every day as good as it can be.
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