Children’s Palliative Care- Guest Blog by Sue Boucher

Those of us who work in children’s palliative care all have one experience in common… seeing the sometimes surprised, sometimes sympathetic but more often the unmistakable look of shock on the faces of those who innocently ask, ‘So what work do you do?’.

The typical response:

Ohhhhh……really? That must be so hard and so depressing.”

I usually try to quickly intervene with something like, “It’s not at all depressing and while there are moments of great sadness, it really is a wonderful field to be in. There is much joy and satisfaction to be found in ensuring the best quality of life for very sick and vulnerable children.”

Most will then give you a quizzical look bordering on disbelief and before you can launch into all the wonderful things that happen in children’s palliative care the subject is quickly changed to a safer topic … like the weather! People don’t want to think about children with conditions or illnesses that threaten or will shorten their lives.

But every day children are born with rare genetic conditions, they get very sick and sometimes they die. Those of us working in children’s palliative care are well aware of this difficult reality as are the affected children and their families.

Ignoring or avoiding it won’t change anything and only makes it harder to raise awareness.

What we can change is how we choose to respond to the often complex needs of these children.  We urgently need the general public, government health officials, politicians and potential funders to realise there are so many things we all can do to reduce unnecessary suffering and make these children’s lives a great deal better.

We can provide a child with relief from pain and find ways to control the distressing symptoms of their illness, we can answer their questions with honesty and help them come to terms with their illness or condition, we can provide opportunities for them to play, to socialise and to continue to learn and we can encourage and allow them to express and help them deal with their fears and concerns as well as their hopes and desires. We can support their families as they care for their precious child and when they grieve. This is the essence of children’s palliative care.

The series of Little Stars films and the award winning full length feature film Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness capture just this: children living their lives to the fullest, supported by loved ones working together with palliative care teams. They beautifully tell the ‘surprisingly life-affirming stories’ of affected children and include interviews with those who care for them from nine separate countries in both the developed and developing world.

Skilfully crafted and professionally produced the films perfectly articulate what we wish we could tell people who ask about our work and who, through their tendency to avoid the topic, remain unaware of the rewarding and life-changing benefits of palliative care for children.  They also reveal that despite significant differences in models and available resources,

Palliative care can be provided in the richest and poorest of settings and, without exception, will improve the lives of children who have access to services and their families.

I have been fortunate to help organise and attend four screenings of the Little Stars feature film and have regularly used the short films when training and have witnessed first-hand the tremendous impact they have on those who watch them. The films bring home the value of palliative care provision for children in a way that is impossible to do through the spoken or written word.

Those who watch the films cannot help but realise that a child with a life-limiting illness not only deserves but also has the right to have their physical, social, emotional and spiritual needs met by people who have the necessary skills and knowledge to do so.

We are so fortunate to have such easy access to this excellent resource and I would encourage you to make the best use of them to increase awareness and advocate for training, increased access and the development of children’s palliative care services in your communities, your regions and your countries.

Here are a few ideas to make the most of the Little Stars films:

  • Plan to hold a screening of the full length film at your next conference
  • Hold a screening of the full length film for potential funders
  • Hold a screening of the feature film as a fund raiser
  • Use the films to educate university or college students about the value of children’s palliative care
  • Use the short films for training days or workshops
  • Embed the films on your website
  • Link to the short films from your social media sites   

The short films, averaging around 10 minutes in length, can be freely accessed online and the full length feature film, winner of numerous Film Festival awards and subtitled in 13 languages, can be purchased from the Little Stars website.

Find out more and discover all the short films at www.littlestars.tv/short-films

Please share this blog post and help raise awareness for children’s palliative care.

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