Children need specialized palliative care
Children with life-threatening illness and their families require unique approaches to care at the end of life to relieve physical and emotional suffering and promote the best quality of life for the child and family. Life-limiting illnesses in children are quite different than those seen in adults. Children – and their siblings – continue to develop physically, cognitively, emotionally and spiritually throughout their illness. Their concept of death goes through similar changes in understanding. Play is paramount. The child may be ill, but the entire family is the primary patient.
Typically, adult hospices are not well equipped to provide care for children.
While most hospice professionals are very competent and comfortable caring for adults, few have that same level of expertise and confidence in caring for children. As hospice clinicians we aspire to enable a better death experience for the child and family who are faced with the likely inevitability of dying – to help them navigate the unthinkable. At the same time, caring for a child with a life threatening illness has deep rewards in the nature of the relationships that develop.
“If we listen closely, children who are dying and their families will tell us everything we need to know to care for them: they want to be loved, cared for and about, to know that their lives have meaning and purpose, to be remembered. Most of all, they want the people caring for them to appreciate and celebrate their lives.”
~ Cindy Stutzer, RN, MS, CPON
ORION can provide training for you
To respond to these needs, ORION Pediatric End of Life Training and Consultation offers training and support to help adult hospice clinicians close that gap for children and their families. ORION assists adult hospice professionals in acquiring effective tools to help parents care for their child as they endure some of the most arduous times of their lives. ORION assists hospice professionals in:
- Understanding children and teens’ cognitive, physical, emotional, and spiritual development, and how their understanding of serious illness and death changes as they grow and develop;
- Understanding pediatric life-limiting illnesses;
- Communicating difficult topics with skill and compassion, helping families to communicate effectively, including understanding the role of play in children’s communication;
- Becoming proficient in pediatric pain and symptom control;
- Providing care at the time of dying;
- Helping the child’s family and community begin to navigate loss, grief and bereavement; and
- Providing emotional support and presence to families during this time, while simultaneously developing sustainable ways to care for oneself and one’s colleagues while doing this work.
In short, ORION strives to help professionals demonstrate increased specialized knowledge, skill, confidence and sensitivity in the care they provide to children and families at end of life.
Why is this so important? The urgent need for skillful, compassionate confident pediatric caregivers is perhaps best captured in a mother’s own words:
…I realize now that there is a difference between pain and suffering. Pain must be managed in order for suffering to be nonexistent; unmanaged pain decreases the quality of her life and creates memories that will haunt us for a long time.
…Tell me about how other families are caring for their children at home, share their tricks and hard won wisdom with me. I want to know that I can keep my child safe. Let me know that sometimes hope can change. Give me friendly care, not a clinician who wants to be a friend. You must have the courage to step in and say what needs to be said, even if it’s upsetting. It’s such a gift when a clinician can be comfortable within the uncomfortable.
…Make your mental and physical health a priority; tell me how you manage your stress, so it can give me permission to do the same. I want to look at the insurmountable hill of caring for my seriously ill child, see the dirt in your shoes and the flag in your hand. Show me your humanity and make room in your heart for mine, because we are in this together.
…Please know how thankful and grateful we are to you for sharing your gifts with us, even if we don’t say it out loud. Often words can’t possibly convey the kind of gratitude we hold in our hearts and sometimes we don’t realize how we really feel until years later when the dust has settled. We thank you for your courage, for your hearts, and for running into the fire instead of away from it.
By Lisa Buell
In A Mother’s Wish: Meaningful Interventions for Pain Management; published in the CHIPPS (Children’s Project on Palliative/Hospice Services) Newsletter of NHPCO, February 2009.
ORION does not provide direct hospice services. If you need a referral to a hospice that serves children, or want to explore whether palliative care or hospice would be a good fit for your child or a child you are working with, please contact the Georgia Hospice and Palliative Care Organization (GHPCO) at (Toll Free) 877.924.6073 or admin@GHPCO.org. Please go to www.GHPCO.org for more information. Outside Georgia, please visit www.NHPCO.org.
In Greek mythology, Orion was a great hunter who was turned into a starry constellation upon his death. The name, ORION, comes from this well-known composition of seven bright stars. Orion is also a compelling and passionate character in Homer’s Odyssey. So his name makes a fitting ‘badge’ for the healthcare workers who care for children and their families.
The Greek meaning of the name Orion is: rising in the sky. This concept was interpreted in the ORION graphics that include a representation of ascending orange stars on a teal background that evokes not darkness but a peaceful sky. The logo uses an embracing shade of blue while the spirited stars radiate light – symbolizing the light that children bring.