When children are diagnosed with life-threatening or life-limiting conditions, everyone around them feels helpless and confused about how they can help. Fortunately for these patients at Carilion Children’s and their families, a Pediatric Hospice and Palliative Care team provides much more than medical care.
But there are many ways that loved ones and far-away friends can still support these families.
Let’s start by defining pediatric palliative care and how it relates to hospice care.
What Is Pediatric Palliative Care?
The pediatric palliative care program at Carilion Children’s provides comprehensive management of patients’ physical, psychological, social and spiritual needs while supporting their families and caregivers.
As Palliative Medicine and Supportive Care specialist Christi Stewart, M.D. explains it, "The overall goal of pediatric palliative care is to alleviate suffering and improve a child’s quality and enjoyment of life. It focuses on providing relief from the symptoms, pain and stress of serious illness.”
In addition to medical care for the patient, a pediatric palliative care team supports their parents and siblings by providing respite care, connecting them with community resources and keeping them informed throughout the course of their illness.
- Pediatric specialists
- Licensed clinical social workers
- Hospital chaplains
- Parent educators
- Child life specialists
- ELNEC-trained nurses (the End-of-Life Nursing Education Consortium from the American Association of Colleges of Nursing)
Any child living with a life-threatening or life-limiting illness can benefit from pediatric palliative specialty care. According to the American Academy of Pediatrics, these conditions may be genetic or acquired, and can include:
- Conditions for which curative treatment is possible but may fail, such as cancers
- Conditions with no cure that require intensive long-term treatment to maintain quality of life, such as cystic fibrosis
- Severe conditions like hypoxic ischemic encephalopathy related to premature birth, which cause significant disability and make children vulnerable to other health complications
- Progressive conditions in which treatment is exclusively palliative after diagnosis, such as Duchenne’s muscular dystrophy or other neurodegenerative disorders
What Is Hospice?
Hospice care typically serves patients who have a more limited life expectancy. It focuses more on promoting quality of life as defined by the patient, helping them make decisions about their end-of-life care and helping patients and families identify and grieve their losses.
"All palliative care does not mean hospice care," says Dr. Borowicz, "but all hospice care is palliative care."
How They Work Together
The Affordable Care Act now allows for “Concurrent Care” (section 2302)—allowing children with life-limiting conditions to receive curative treatment and hospice care at the same time.
The reason for that is simple: Children and families with life-limiting illness often need the same comprehensive support that hospice offers children at the end of life:
- Managing complex care plans
- Managing pain and other symptoms
- Getting psychosocial care needs met
- Offering respite to caregivers
- Providing bereavement support
Now, any child living with a life-threatening or life-limiting illness can benefit from pediatric palliative specialty care within the supportive hospice environment.
As the American Childhood Cancer Organization explains it: “Whatever the outcome, people are much more able to face illness with dignity and energy if they receive compassionate, holistic care” when it addresses their physical, emotional, psychological and spiritual needs in a compassionate and all-inclusive fashion.
How You Can Help
With a family’s care team supporting them on so many levels, how can friends and neighbors help?
Dr. Borowicz offers a general "do" and "don't":
- Do be supportive and understanding, allowing the parents, siblings or patient to talk about whatever is on their minds in their own time. Give them space but be present.
- Don't seek or offer medical advice unless the family asks. It can be overwhelming to get more advice when they are already turning over every stone they possibly can.
Some practical ways to support families include:
- Providing respite care so parents can eat, exercise or rest
- Taking care of tasks such as mowing their lawn or bringing siblings to after-school activities
- Providing a distraction through stories, community news or shared activities
- Checking in on them without expecting a response—“I’m here when you want to talk” rather than “How are you?”
- Remembering parents and siblings on holidays and birthdays
Dr. Borowicz’s advice for families can also help others who want to support them:
- Don’t go down the rabbit-hole of Googling symptoms and conditions.
- Ask questions; give them an opportunity to talk about their child’s condition and how it’s affecting them, and don’t be offended if they don’t want to answer.
- Acknowledge that it’s hard in the moment to see a light at the end of any tunnel, but that they never need to feel alone.