“The day you meet me in the emergency department with your sick parent is likely to be one of the worst days of your life. If their heart stops, we can perform CPR. CPR requires me to put my weight onto your mum's sternum and push. To do this effectively, I will inevitably break some of her ribs. We're causing so much trauma to an elderly, frail person's chest, when realistically every doctor in the room knows the outcome will be death.” ~ Medical Registrar. Sydney Morning Herald, Nov 6, 2015.
Advance care plans are intended to help people die according to their wishes. They convey how you want your medical treatment to proceed, or to stop.
My experience of advanced care plans is personal. After months of operations, tests, and palliative chemotherapy and radiotherapy for secondary cancers my father’s oncologist said “As doctors we are taught to do no harm. For you that means no more time consuming and painful interventions that have little benefit and a rising risk of harm.”
That difficult sentence was in fact an act of kindness, enabling us to direct our energy and conversation to the formulation of effective palliative care and end-of-life wishes.
We were fortunate. Many terminally ill cancer patients are given electrical defibrillation, or admitted to intensive care and experience a substantially worse quality of life than those who receive no interventions.
And yet ... our experience of developing an advanced care plan was not easy. Particularly at that time of high emotional intensity.
Smoothing the end-of-life journey
How might we ensure that people die according to their wishes? Is a written advanced care plan the best and only way to convey that information? What most helps end-of-life journey decisions? How might we help the dying person understand what their wishes mean in practice, unencumbered by medical jargon? How might we ensure the process delivers their intended experience?