When most people hear the words 'palliative care,' they often only think about death and dying. However, to health-care providers, palliative care has a much broader definition. Palliative care seeks to reduce the physical, psychological, social and spiritual suffering associated with serious illness1. Support is provided not only to the patient, but the whole family – palliative care recognizes that everyone is impacted when a child has a serious illness.
Although palliative care may include caring for children nearing end of life, its focus is much more on living than dying. Palliative care focuses on optimizing quality of life and making each day the best that it can be.
Who provides palliative care?
Palliative care strategies can be provided by any health-care provider or delivered by a specialized palliative care team with specific training in palliative care. A specialized palliative care team may get involved any time along a child’s illness journey as an extra layer of support. Sometimes, palliative care teams can get involved as soon as a serious illness is diagnosed. Often, palliative care teams work together with primary care teams to optimize quality of life while children continue to receive treatment for their underlying illness. Palliative care support for families can look different depending on when palliative care providers meet a child and their family. The earlier palliative care is integrated into a child’s care, the greater the opportunity to collaborate with the primary team to understand a family’s goals and wishes.
The four main pillars of palliative care
There are four main pillars of palliative care:
- Identifying goals of care and navigating difficult decisions: A palliative care team can work with your child and family to establish goals of care by identifying what is most important to you and your child. Goals of care guide the health-care team and ensure that your child is receiving care that is consistent with what matters most to your family. Goals of care can also be used to help make challenging medical decisions.
- Symptom management: Unfortunately, pain and other unpleasant symptoms are often a consequence of serious illness or its treatments. But even when illnesses are difficult to treat there is always more that care providers can do to help children feel better. Palliative care teams work alongside primary care teams to treat challenging symptoms.
- Quality of life enhancements: Being a patient does not mean a child has to stop being a person. Palliative care teams work with other health-care providers to help your child and family live your best lives, despite the challenges.
- Psychosocial support: Everyone benefits from support when they are going through a difficult time. Palliative care teams provide an additional layer of support for patients, siblings and parents/caregivers facing a serious illness, even, if necessary, after the death of a child.
If you are interested in exploring how palliative care can support your child or family, https://caringtogether.life/ is a Canadian website created by families who have experienced serious illness in a child, and professionals with expertise in palliative care. You can also learn more about palliative care at SickKids by visiting www.sickkids.ca/en/care-services/support-services/paediatric-advance-care-team/.