In his recent book Die Wise, Stephen Jenkinson makes the point that, “Dying is not what happens to you, it is something that you do.” In other words, dying is an action, a process that calls forth our participation and considered decision-making.
In the light of the proposed assisted dying legislation, which the Victorian state parliament will vote on before the end of the year, I would like to express a viewpoint that comes from my personal experience and hopefully provide some content for further discussion.
I am a Uniting Church minister who has served as a school chaplain for over 35 years. During that time, I have sat with scores of parents, staff members and students who have been diagnosed with terminal cancer, many of them in palliative care facilities. I have witnessed them gasping for breath as, under sedation, they struggle to finish the last few days of their lives.
In May 2016, my dear wife Catherine had a brain tumour operation after a Stage 4 GBM diagnosis. Following the excision of the tumour, she endured the standard treatment of six weeks of radiation and chemotherapy and then six months of chemotherapy. One can only marvel at the skill and commitment of surgeons and medical staff in these medical interventions.
Catherine is now into her 17th month of her journey of dying. The radiation burnt untold number of brain cells close to the tumour and chemo was accompanied by months of fatigue and nausea.
Recently, Catherine has undergone a further brain operation to implant a shunt in her brain to relieve fluid pressure, which has been the cause of her lack of mobility on her left side and the loss of her short-term memory. Further to this operation, she had a bleed on the brain that has further exacerbated her deteriorating movement on her left side. She is currently in a rehab facility trying to regain some of her movement.
Today we live in a death-phobic and grief-illiterate society. We hand over our care to the medical and health professionals and dull our pain with anti-depressants and painkillers. This is not to denigrate those professionals, but often it nurtures the view that death is something that happens to us rather than something that we do.
In my last parish placement, I conducted over 50 funerals and I ask myself, what did I do apart from conducting the funeral and offering pastoral care to the family? What did I do to help those who were terminally ill to die wisely?
Jenkinson writes: “Dying is not the collapse or the eclipse of wisdom. It is the sum of a soulful life. It dares and pleads with all professionals and volunteers and family members and neighbours to be partners and championing the great worthy project of dying wisely and well.”
At some stage in the future, Catherine will be in palliative care and we will face the more focused issue of ‘more time’ and what that means to a person who has a terminal illness.
The medical and health professionals offer interventions designed to give the patient more time. But what does ‘more time’ mean for the patient and for their loved ones?
Does it mean more time for medications to ease suffering and pain? Does it mean more time for further operations? Does it mean more time for family members to endure distress as they watch their loved one dying?
And what does ‘more time’ mean for the patient? To languish longer in a hospital bed or a high care residential facility?
Over the years I have heard ‘more time’ euphemistically referred to as, ‘live each day as it comes’, or ‘get your affairs in order’, or ‘try to enjoy life the best way you can’. It seems to me that ‘more time’ bears no resemblance to any aspect of life a person has experienced before.
For a person with a terminal illness, ‘more time’ means more time to live into their dying.
For Catherine, it does not mean more time to walk the dog, to see movies, to eat out, to enjoy travelling. And of course, there is the existential question of what meaning do we give to more time in these circumstances.
I honestly do not know what I would do if and when Catherine’s condition reaches the parameters of the assisted dying legislation.
I know that I would not want Catherine to have ‘more time’.
Rev Peter J Burnham
Ex-chaplain Wesley College