In a featured article in the latest newsletter published by the International Association of Hospices and Palliative Care (IAHPC) ICPCN’s Chief Executive, Prof Julia Downing, urges those who work with children with life-threatening and life-limiting illnesses and their families not to use ‘culture’ as an excuse to avoid holding the more difficult conversations.
She writes, “While ensuring that we provide affordable and culturally appropriate children’s palliative care, we must guard against using ‘culture’ as an excuse to avoid addressing some of the more challenging issues, such as telling parents and the child the truth about their illness and prognosis, or explaining to a parent that their child is dying and what to expect beforehand.
Yes, although it is important that we do this in a way that shows respect for a person’s culture, it is equally important to hold these difficult conversations, so that children and their families can manage their expectations and redefine their hopes and goals.”
In the article she refers to the English idiom of there being an ‘elephant in the room’ – an obvious problem that nobody is keen to talk about, mentioning a successful campaign Hospis Malaysia ran in 2018 where a colourful row of elephants were placed in a public space to encourage people to consider having those hard conversations with their loved ones.
Addressing the access abyss
In the article Prof Downing also talks of the ‘access abyss’ that prevents access to palliative care and adequate pain relief for millions of children and what we should be doing to raise greater awareness of its benefits. She asks ‘How do we get the message across that this is not acceptable, that something needs to be done to change this situation, that children’s palliative care is a human right? She emphasises that people who consider the work of children’s palliative care specialists as ‘depressing’ need to understand that the focus of this work is not so much about death as it is about living as well as possible.
We are reminded that there is no excuse for the lack of pallaitive care for children around the world and encouraged to work together to reduce the gap and make palliative care for all children who need it a reality.
Read the full feature article on the IAHPC website.