IAHPC Board Member Prof. Julia Downing has spent 27 years working in palliative care, 17 of them in underserved countries — particularly Uganda but also other parts of Africa and Eastern Europe. In November 2016, she was named Chief Executive of the International Children’s Palliative Care Network, an organization with which she has been involved since its beginning.
Palliative care centers can become a second home for children, such as this one in South Africa.
(Little Stars photos in this article are courtesy of ICPCN and Moonshine Movies)
The International Children’s Palliative Care Network has changed a lot of minds since it was formed in 2005.
At its start, some argued that a pediatric palliative care organization was redundant, because children were well served by the principles of generalized palliative care. Others worried that a separate agency would dilute the focus, diminishing efforts to provide palliative care to everyone in need.
Instead, the ICPCN has proven its worth. Like adding water to a wave, it has helped the global palliative care movement surge forward.
By raising its voice, the discussion surrounding palliative care is richer. By having close to 2,000 ICPCN members who actively research, promote, and work in pediatric palliative care — and by training an estimated 3,200 people thus far — palliative care generally has increased its reach.
And it has changed children’s lives.
‘When I first moved to Uganda,’ says Julia Downing, ‘I was horrified that families had no access to palliative care or pain medications, but had to manage the pain of their children without medication. There wasn’t a lot they could do. Now, with training and advocacy, that situation is becoming less and less prevalent. It’s encouraging.
‘Changes don’t happen quickly, but they do happen.’
An estimated 21 million children worldwide have life-limiting conditions or life-threatening illnesses at any one time. Children’s palliative care is gaining recognition, but much remains to be done to enact it everywhere.
Over the next six months the ICPCN will formulate its strategic plan, ‘a vision,’ to guide development for the next decade. Any plan is likely to build on strategies that led to its current successes, focusing, as always, on communication, advocacy, and education.
ICPCN’s greatest tool has arguably been the degree to which it fosters action and activists. Members are asked directly, and are targeted specifically, to help in a way that is appropriate to their field, interests, location, or language (translation is always welcome!). A multitude of calls and emails to concerned health care workers, as well as influential individuals in regional, national, and international health care agencies, have spread a growing web of influence that leads to improving care.
These links foster its mission to become a ‘one-stop shop’ for information on children’s palliative care; the ICPCN is contacted daily by people around the world. Here are a few examples: some ask about education programs or contact information for local experts, a doctor may ask about additional services in their area, a physio may call asking to be put in touch with others.
With every action it takes, the organization strives to combine its goals, thereby multiplying their effect. The two ongoing campaigns are an excellent example:
Hats On for CPC On one day in October, people are encouraged to don hats, take photos and post them on social media, donate to their local pediatric palliative care group or the ICPCN, and organize events. ‘In 2017, a Singapore group put on a big fundraising event,’ says Downing. ‘There were fundraising breakfasts in South Africa and, in the UK, children donated a pound to the ICPCN to wear a hat to school.’ Downing made a five-minute video on pediatric palliative care to be shown at events, to boost awareness.
Just One Thing Taking action is the heart of this campaign, which challenges every person to do just one thing — however small it may seem — to increase access to palliative care. ‘We’ve had health professionals who donated their time to train health care workers in their local hospital, and in their communities. Others have volunteered at their local children’s hospice, or helped to raise awareness by speaking on the radio.’
No new campaigns are expected this year. ‘We’re focusing on ripening the campaigns we have,’ says Downing.
When asked where the most need is geographically, Downing says, ‘we know that there is a high need in many countries across Africa; some have no palliative care physicians and, particularly in West Africa, services have been less available,’ adding that other areas of great need include sites of natural disasters, refugee camps, people living in unsanitary conditions, and Europe’s migrant population. ‘Access can be a challenge. We have to devise different ways to provide care.’
The alternative is unacceptable.
‘If we don’t increase access to children’s palliative care, children and their families will continue to experience needless pain and suffering,’ says Downing. ‘Access to palliative care and pain control should be a human right, and we need to continue to fight for the rights of children globally needing palliative care.’
Editor’s note: While the following item is not directly related to the ICPCN, it is a natural companion to the feature story, as it concerns palliative care of newborn children.
A recent opinion piece in the New York Daily News describes one hospital’s Neonatal Comfort Care Program of palliative care for newborns with an expectation of very short lifespans. Titled ‘When newborn babies are dying, every minute of loving counts,’ the article appeared in the 26 January 2018 issue.
John Rhee, a fourth-year medical student, writes, ‘I expected this clinical experience at Morgan Stanley Children’s Hospital to be an extremely trying, melancholy rotation. Instead, I found it to be infused with intense joy, beauty, and peace.’
‘[P]reliminary research shows that infants with life-threatening prenatal diagnoses survived the same median length of days when they received comfort care management, according to the team’s guidelines, as opposed to when they received intensive care.
‘Such findings are important considering the collateral damage of aggressive treatment is not without its harmful effects on parents, who commonly experience mental health issues (including guilt, shame, high stress, and anxiety) after putting their babies in the intensive care unit.’
Rhee notes that, in the U.S., about 31,000 babies yearly die perinatally (in the first week of life and stillbirths), and 20,000 die in the neonatal period (the first four weeks after birth).
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