In the past, pediatric palliative care has been misunderstood. In fact, although this comprehensive program seeks to improve the quality of life for children with life-threatening conditions — as well as support their families — myths still abound. This is likely due to the program’s multi-faceted approach to care.
So, what is pediatric palliative care? Whatever medical issues your child is facing, palliative care works to prevent and relieve suffering to help your child live the best life possible. The approach offers many different interventions, from advanced pain management to assistance with decision-making and goals of care. Ideally, pediatric palliative care teams address the physical, emotional, social and spiritual needs of both the child and family to form a plan of care that aligns with family values and the child’s preferences.
To dispel the misconceptions surrounding pediatric palliative care and learn more about this important program, let’s look at four of the most common myths and the facts:
MYTH: Palliative care is only for kids with cancer.
FACT: Not so! Every day, pediatric palliative care teams work with children and their families, dealing with a diverse array of medical conditions. In fact, only around 20 percent of patients receiving palliative care have a cancer diagnosis.
Whatever diagnosis a child may have, palliative care teams seek to improve their quality of life. Services typically include:
- Access to a pediatric palliative care physician 24/7
- Care for patients of all ages, ranging from prenatal to young adult
- Collaboration with the child’s current care providers
- Home visits, when appropriate
- Follow-up comprehensive bereavement care
- Medical management of pediatric hospice patients
- Interdisciplinary team meetings to formulate holistic plans of care to support patient and family goals
Palliative care works to prevent and relieve suffering to help your child live the best life possible.
MYTH: Palliative care is only performed in the hospital.
FACT: Services ideally are provided in a palliative care clinic, in conjunction with subspecialty clinics or even during home visits, when appropriate. The goal is to make sure the care fits the patient’s needs.
While care is provided in a variety of environments to best suit the patient’s diagnosis, there aren’t enough support systems of this type available. Often kids don’t have access to this type of care.
MYTH: Palliative care is for kids who are dying.
FACT: Many pediatric palliative care patients are still alive years after their initial consultation. What’s the takeaway? We find that palliative care greatly alleviates the suffering of those with serious conditions. Pediatric palliative care also improves the quality of life that a child may enjoy over their remaining lifespan, be it a few weeks or many years.
MYTH: Palliative care is depressing.
FACT: It’s understandable that many people perceive this area of specialized medical care to be depressing. The reality is much more beautiful. Palliative care supports children and families through some of the most difficult circumstances imaginable. There are amazing stories of the resiliency children and their families display in the fight to overcome huge challenges.
Overall, attending to suffering caused by a life-threatening pediatric illness is one of the most intimate spaces for healing. It allows compassion to shine in life’s dark spaces.
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