Personal Stories

M’s Story

Why an Advance Care Directive is so valuable

Who is this man into whose opaque and soulless eyes I stare? I try so hard to look for the person, I loved, hiding somewhere within that hauntingly skeletal frame. I of course recognize the familiar marks on the aged skin of his gnarled and useless hands. Otherwise, he is a stranger to me, a man with a fractured mind and a decaying body. He appears to me to be neither happy nor sad. He just exists, waiting to complete the final stage of life’s journey.

Where is that brilliant mind of his, that greatly admired sense of humour and that obsessive passion he had for the outdoors? Are they lost somewhere in the dark and inaccessible recesses of his mind or are they simply gone, to be kept alive in the memories of those still living? The profound sadness and grief I experience whilst sitting in front of this man is inexplicable. I grieve for the father I have lost and despair for the man he has become. I fervently hope that he is unaware of his plight.

Each day I walk into this facility, that has become his ‘home’, I am accosted by ‘that smell’. It powerfully reminds me of a smell I sensed as a child whilst visiting my grandfather in his nursing home. It was many years later, during my nursing career, that I became aware that it was the smell of ‘old people’, their wasted and broken bodies. It was the smell of death. It is an insidious smell that permeates into every niche and corner and is one that can never be erased from one’s olfactory memory.

As I walk towards dad’s room each day, I see he is not alone enduring a miserable existence. Many fathers, mothers, loved ones and friends exist within similarly tortured minds and bodies. They are just occupants of a large waiting room.

This is not living at the end of life.  It is death before dying.

I consider the creation of an Advance Care Directive to be critical. It allows an individual to explicitly detail their end-of-life wishes should they become incompetent or unable to communicate directives for the medical care they wish to be provided with. With the creation of this document, I hope that my children and those involved in my end-of-life care will be provided with comfort and certainty that the course of medical care undertaken is one entirely of my own choosing. I do not wish to inflict upon them any feelings of guilt, uncertainty and wrongdoing. I hope that the provision of explicit instructions to the medical staff who, in the future, may care for me, will enable their job to be carried out with great clarity and direction,

Tragically in the absence of an ACD, those like my father and the many others who live beyond the doors I walk past each day, will continue to be forced to entrust the medical care involved in the final chapter of their lives to strangers. I am not insinuating that the care provided is deficient or harmful. I am merely stating that it may result in an unnecessarily prolonged existence for an individual who, had they ever envisaged what may befall them in their latter state in life, would never have agreed to any form of medical “treatment” at the end of their lives.

We have no choice as to how our death dice will fall, but we do have a choice in how our lives are medically managed at the end.

It is important to know that an Advance Care Directive cannot include a request for a Voluntary Assisted Death.

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