An article published last week by Oncology Buddies a magazine focusing on awareness, education and support for those affected by cancer takes a look at why honest communication is a cornerstone of good children’s palliative care.
The collaborative article, written by Dr Julia Ambler and Tracey Brand, co-founders of Umduduzi Hospice Care for Children and ICPCN’s director of communications, Sue Boucher, makes the point that good communication practices in palliative care are crucial and include communication between palliative care team members, conversations with parents of affected children and more significantly, direct communication with the child.
A conspiracy of silence
The authors describe the ‘conspiracy of silence’ which often begins at the point of a life-threatening or life-limiting diagnosis. They write, “Understandably, parents feel a strong urge to protect their child from the difficult reality of a poor prognosis. Reasons for this include: not wanting their child to be burdened with thoughts of the possibility or certainty of their death; discussing death may be contrary to their religious or cultural belief systems. They may believe that talking about the possibility of death means giving up, or that their faith is not strong enough, or it may just be too difficult. Parents will often insist that the medical team also keep the truth from the child, drawing them into the conspiracy.”
They emphasise the importance of offering palliative care to families at the point of diagnosis, increasing or withdrawing care as necessary and stress that to address the paradox of promoting quality of life in the face of death, considered, honest and meaningful communication is key.
The article looks at the importance of tailoring your communication to the unique needs of each child and family and using an ‘ask, tell, ask’ approach when delivering news that is difficult to hear.
Involving the child
The authors encourage age-appropriate and active participation of children in conversations and decision making with regard to their care and treatment. They write, “Always taking into consideration the child’s age, understanding and willingness to participate, these discussions may include:
- Giving them permission to ask the hard questions about their illness and prognosis.
- Allowing them to express their own thoughts and feelings related to decisions on how much medication they should be given e.g. enough to make them sleep or a little less so that they can be awake and aware.
- What life support measures they want in an emergency situation.
- Where they would prefer to be if and when they die, and who they want to have with them at that time.
- What they want to happen after their death.”
Click here to read the full article.