“Palliative” means soothing, relieving, alleviating. Palliative care in Medicine is the discipline that deals with the terminally ill, where death is not a matter of “if”, but of “when”, and of days and weeks rather than months and years.
National Palliative Care Week is here to increase awareness of the need for us to deal now with how we want to be treated when the time comes that we can not make that decision for ourselves anymore. It’s everyone’s business.
Palliative care is an issue that will affect all of us at some point in our lives, whether as a patient, carer, family member, neighbour or friend.
The worst thing for an acute care provider like myself is, after granny Mabel has stroked out in her high level care nursing home, having to deal with hysterical and woefully ill-prepared family members, and to explain to them at 4am why ICU admission and mechanical ventilation is not a good option for an 87 year old bedridden person with a brain full of blood. But these are actually the easy cases. Much more challenging are the instances where a person is brought to the Emergency Room who is still in the prime of their life, and where either a chronic condition like a cancer or something like ALS or Multiple Sclerosis has suddenly deteriorated, or where death was entirely unexpected, say in sudden heart attacks or strokes. With no advanced care directive in place, it will be up to a doctor to make an immediate decision on whether to try to prolong your life, and by what means.
And let’s face it, this can happen to all of us anytime, be it in a car accident, breaking our neck hanggliding, or dropping dead from a heart attack, only to be resuscitated into a vegetative state. And by that time, the decision of what will happen to you is out of your hands.
Apart from the Northern Territory, all Australian states recognize Advanced Care Plans or Health Directives, and they are legally binding even if written on the back of a dirty napkin.
So talk to your GP and your family this coming week, think about what you would want in terms of care in the event you ever lose your mental faculties or ability to communicate, and write it down! If you don’t want your life prolonged by artificial hydration and nutrition should you lose your ability to swallow, if you don’t want anyone jumping on your chest and zapping you with electricity should your heart stop, if you want to be allowed to die of a brain cancer, severe heart failure or dementia without being dragged into hospital by anxious relatives or overwhelmed nursing home staff, then make an advanced care plan now. You will be able to specify exactly what you want done in which situation, and with the implementation of ehealth across Australia, these directives will soon be instantaneously available to health care providers.
Dying is unfortunately still inevitable, but it does not have to be inevitably cruel or painful or without dignity.