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 Prof. Susan Fowler-Kerry has become a key resource for child palliative care development in Eastern Europe, and she says Canada and Saskatchewan lack a framwork on this important health-care issue. |
A U of S Nursing professor who has become a key resource person for the development of child palliative care in Eastern Europe says the heart-wrenching issue needs a lot more attention in Canada and Saskatchewan.
Susan Fowler-Kerry, at the College of Nursing for 17 years, evolved from doing early work on the treatment of pain in children, to the larger issue of palliative care for young people facing life-limiting illness. That route has been one that has taken her through Eastern Europe and now has her wondering why more efforts aren't being undertaken to help dying children and their families here in Canada.
After co-authoring a World Health Organization monograph on relieving pain for children with cancer, Fowler-Kerry was invited to Poland to help with some program planning and evaluation. While some of her recommendations included urging practitioners there to become more politically active and press for the morphine, codeine and acetaminophen that can effectively relieve pain, she also saw that, ironically, the lack of money there actually spurred the development of palliative care programs.
"In Eastern Europe there's a real interest in this, because they're so short of resources. With so many kids with conditions that can't be treated because so many places don't have the resources, palliative care is a very effective."
Working with Dr. Thomas Dangle in Poland and the Soros Foundation, Fowler-Kerry became an organizer of the Pediatric Palliative Care Symposium held every few years in Eastern Europe to educate about 100 health care professionals there, and some who attend from around the world, about child palliative care. The first was in Budapest, Hungary six years ago, the second was held in Warsaw, Poland, and the third will be next May in Romania.
Back home in Canada, Fowler-Kerry says the state of child palliative care across the country "is a patchwork quilt".
While there are some general national guidelines, she says "we haven't developed a national framework for children who require palliative care - and some could be in that situation for 15 years."
"There's no national framework for pediatric palliative care, and there's no provincial framework or action plan."
She adds that most medical and nursing colleges don't have courses in palliative care. The U of S College of Nursing has an optional clinical course in cancer nursing and palliative care.
Fowler-Kerry says one of the most pressing needs in child palliative care in Canada is to address the problem of rural and northern families who because of distance from facilities face the choice of either taking on non-stop total care of their child or putting the child totally in a facility in a far-off city.
"For children, the most-preferred program is home-care," she says - but it's not insured by medicare, and also there is a need for palliative care to provide programming for both the child and the family.
"When children need palliative care, the family does too," and that goes one through the grieving process after the child dies, she says. And much of what families need is just the occasional break, help with getting the groceries, and someone to talk to about the situation.
Fowler-Kerry says some of the problem is political, because children don't vote and caring families are in no position to apply political pressure for action.
But she wouldn't trade her work in this field.
"What is amazing is that, sad as it is, the rewarding part about working with these (palliative care) teams in Eastern Europe is that, sure they cry and grieve like families, but to be able to give the gift of palliative care to a child and a family, to let them die with dignity, in peace, is very, very gratifying. And it doesn't take oodles and oodles of money - but commitment, and teams."
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