She talked about how her son was diagnosed with an incurable progressive neurological disease at the age of four, how the family’s lack of communication destroyed her marriage and changed her whole life, how her child suffered because her son’s pediatric sub-specialists were misinformed on the topic of hospice/palliative care and fearful of giving the child morphine.
Eventually, when a palliative care team got involved and gave the child morphine, life became a bit more bearable for the family. But towards the end, he went into intense muscle spasms and agonizing pain. He suffered for 8 days without getting pain relief, or if that was not a possibility, palliative sedation.
A lack of education and communication left the family and some care providers involved feeling inept and saddened by the persistent suffering as they knew this did not need to be the case.
Dianne’s talk was at a conference for developing countries. It left the audience feeling anger at the fact that these things were permitted to happen in a developed country where such practices would not be expected.