Real Palliative Care

Thankfully the last week of Jen's life was spent with her family - myself and the boys, her parents, her sister and brother-in-law, and their children. We'd had the updated scan results, and decided to stick to the first part of our defunct travel plan, which was to spend some of NSW school holidays at Jen's family's farm . Jen was very unwell that entire week- using medication to combat pain from her swollen liver, experiencing a lot of tiredness, having trouble with food, and a few less pleasant symptoms that I won't bother to describe. On a couple of days she rarely got out of bed. At other times she held herself together for long enough to have significant conversations with people who loved her, or to celebrate Secundus's birthday.

Her mother made strenuous efforts to find food that Jen could comfortably eat, even though it could take her an hour to work her way through a salad. A couple of days ago. I started reading Elizabeth Kubler-Ross's book "On death and dying", and came across this description:
"If a patient is allowed to terminate his life in the familiar and beloved environment, it requires less adjustment for him. His own family knows him well enough to replace a sedative with a glass of his favourite wine; or the smell of a home-cooked soup may give him the appetite to sip a few spoons of fluid which, I think, is still more enjoyable than an infusion. I will not minimize the need for sedatives and infusions and realize full well from my own experience as a country doctor that they are sometimes life-saving and often unavoidable. But I also know that patience and familiar people and foods could replace many a bottle of intravenous fluids given for the simple reason that it fulfils a physiological need without involving too many people and/or individual nursing care".

That quote reminded me of how good it was that Jen's last week wasn't in a hospital or palliative care ward. In discussions over the last few months, she'd initially said she wanted to die at home, but on reflection realised that could be hard later on for myself and the boys. So her amended wish was to spend as much time as possible at home, and as little as possible in hospital or palliative care. Her four days in hospital at the start of July (while they tried to get the pain under control) illustrated the limitations of hospitals -- it was hard for the boys to visit often or for long, the food was not that great, and the behaviour of other patients could make it hard to rest (a couple of people in her ward slept with the television on).

Thanks to modern pharmocology, Jen had adequate pain relief, and could stay out of hospital until the very end. In the end she was in the palliative care unit for less than eight hours, and she was deeply unconsious the whole time, so there was no danger of eating hospital food, or of being disturbed by other patients. At least one of her wishes was granted.