Palliative Care for Children: Godfrey’s story

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Godfrey loves to draw. After the recent death of his close friend, Stembile, Godfrey seems motivated to talk about his own death. He draws a picture of Sunflower House, the children’s hospice where he has been cared for and lived for much of his life.  The picture he draws shows the importance to him for this ‘home away from home’, but also shows that he misses Stembi who was like a ‘little brother’ to him. In the sky there is a grey aeroplane, a space rocket and a helicopter; all of which seem to indicate to those who know him, his uncertainty about what happens when you die. Father Keith, the hospice chaplain, spends time over the next few days talking to Godfrey, discussing his pictures and working through his questions. The drawings that follow these discussions are brighter. There are colourful cars and buses which again seen to show an awareness that he is about to embark on a journey of his own.  A few days later Godfrey, his immune system already severely compromised by HIV, succumbs to chicken pox and dies – his death catching everyone at the hospice by surprise. Everyone perhaps, except Godfrey.

Godfrey was an intuitive 11-year-old boy with advanced HIV and heart failure. Orphaned by AIDS at a young age, he had not only built a special bond with Stembi but had ‘adopted’ different people at the hospice as members of his new family.  On continuous oxygen therapy to assist his breathing, Godfrey still managed a few hours at school each day and was able to play outside using long oxygen tubing.  His beautiful drawings were given away as gifts to his favourite people.

The staff at Sunflower House understood him well. They ensured that his pain was always assessed and controlled with morphine. The morphine also assisted to relieve his breathlessness. At Sunflower House Godfrey was allowed to talk about death and the hospice chaplain helped him work through his concerns. When the time came, he was ready, and he died peacefully.  

Children with non-curable conditions have the right to this kind of care. They have a right to have their pain controlled, to receive palliative care and to participate in decisions about their care. All too often these vulnerable children’s physical and emotional needs are not met and fear around using morphine in children often means their pain is inadequately controlled. The ultimate goal of children’s palliative care is to relieve pain, to improve the child’s quality of life, to support the family and where inevitable, to ensure a peaceful and dignified death.  

As we approach World Hospice and Palliative Care Day on 12 October, ICPCN wants to dispel three common myths about children’s hospice and palliative care. These are:

  • Myth 1: It is difficult to assess pain levels of babies and young children and unsafe to prescribe opioids for their persistent pain.
  • Myth 2: Children can be treated as small adults.
  • Myth 3: Children don’t know they are dying unless we tell them that they are.

The facts being:

  • Various methods and tools can be used to assess pain in children and neonates.

  • Opioids can be effective and safe to use in the care of children and neonates when used by trained and knowledgeable professionals.

  • Children think, behave and communicate differently to adults.

  • Children are always developing so each child will be at a different stage of development.

  • Many children are aware that they are dying but they want confirmation from adults.

Free materials for World Day have been developed, including a brochure on myths and facts in children’s palliative care and a poster for display. The poster is available in a number of languages. People are encouraged to download these from the ICPCN website and use them for purposes of advocacy and raising awareness. 

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