Myth busting in children’s palliative care – Stembile’s story

Categories: Care.

It’s 5 July 2007 and Stembile, a three-year-old patient at Sunflower House Children’s Hospice in Bloemfontein, South Africa, mumbles a few words, pointing in the direction of the volunteer. Over the past few months the volunteer has learned to interpret what Stembile (known as Stembi) is communicating with his limited words and gestures. He asks to go out in her car and then proceeds to let her know all the places he wishes to visit, including a trip the ducks at the lake and a visit to his favourite volunteer. That same night he asks to go outside, and pointing to a bright star in the night sky he says ‘Stembi’s star’. Two days later, during a visit from his uncle, Stembile dies peacefully. He was ready. He had completed all the visits he needed to make and the tasks he needed to do.

Stembile had advanced HIV with heart failure. Having limited verbal skills, his most effective method of communication was through the use of his eyes and arms. He loved music and understood most of what was said to him. As his condition deteriorated, the hospice staff observed him carefully in order to accurately assess his pain and give him the correct morphine dose to keep it under control. The morphine not only relieved his pain but helped with the breathlessness caused by his heart failure.

Children like Stembile with non-curable conditions have the right to pain control, palliative care and to participate in decision making about their care. But all too often these children’s needs are not met. Fear around the use of morphine in children leads to inadequate pain control. The goal of palliative care is to relieve pain, improve the quality of life and 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. They can be downloaded from: www.icpcn.org