The other day, I had the privilege to attend a Palliative Care training course. I`m saying privilege because I did not really need it, but that is another story.
One thing that came out was semantics. Apparently, Palliative Care is now often paraphrased to make it sound less harsh – professionals may speak about ongoing care or supportive care or continuing care. This however can lead to the family being confused about what kind of care (and outcome for their loved one!!) they can expect.
I know an example from my own life, from when my father was sick. His Catholic faith was very important to him, so there were repeated visits from a priest, and he eventually agreed to receiving the 5th Sacrament. This used to be called “the Last Rites” but is now re-termed Krankensalbung, or “the sacrament for the sick”. Like the term itself and unlike the English equivalent, the German Wikipedia site makes no reference to this being a sacrament for the dying, and that `s what his wife very fiercely insisted on. She was still talking about Christmas and all the holidays he had promised her after the sacrament was given, and when the priest addressed this with her later, she did not allow him to ever come back. Doctors were equally coy about his prognosis, and although I could read between the lines, I wished they had used clearer words to help her accept it sooner, too.
Another thing that was brought up was the lack of communication between patient and family. Often, the patient says to the practitioner “I know that I`m dying, but I don `t want them to know.” And then the family comes and says “We know that he is dying, but we don `t want him to know,” or “we don `t want him to know that we know.” I think that`s so sad, as it probably leads to so many important things not being said. This short film about the topic made me cry.