Pediatric palliative care has grown and expanded across the country since then. It is a newer sub-specialty than adult palliative care and still faces some hurdles. One of those can be getting families and medical practitioners to accept the benefits of palliative care for dying children and, in some cases, to even talk about it.
“Some professionals will not want to talk about it,” said Lynn Grandmaison Dumond, nurse practitioner at Roger Neilson House. “Sometimes referrals to the team are delayed.”
Physicians do what they do because of the hope of curing and healing their patients, she said. For some, there is a sense that if you can’t cure the patient you are admitting defeat, and palliative care can be seen as giving up.
“We hear a variety of things. Some think coming to Roger’s House will be doom and gloom. It is nothing like that. Children are well entertained and enjoy their days here. It is a happy and bright place to be.”
It is an issue many palliative care providers face, but for pediatric palliative care it can be more pronounced. Research, however, suggests that patients who receive palliative care earlier often do better and live longer.
Pediatric palliative care will be the focus of a one-day training seminar for health professions and community workers organized by CHEO and Roger Neilson House on Monday.
Grandmaison Dumond said her work is both rewarding and fulfilling. “Some days are more difficult than others. But for the most part we are helping families and children navigate this rough sea.”
One thing that makes palliative care for children unique is that children may be passing developmental milestones at the same time as they are receiving palliative care, which means health providers have to adapt.
“Kids are always trying to move forward. Infants might learn to feed or learn to sit or learn to smile and interact with their environment. Sometimes they learn to walk while they are palliative,” she said.
“You have to adopt your approach so you are enhancing their development.”
The key, she said, is that caring for children who are at risk of dying is not all about dying, “it is really all about living and how you make those weeks, months, years the best they can be.”
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