My father asked me whether he could end his life. My father was 59 years old when he first experienced symptoms of what would later be diagnosed as motor neurone disease, a disease that cripples the body and leaves intelligence and understanding untouched. Over a space of six years he gradually lost the use of his fingers, hands, arms and legs. He lost his power to speak and to swallow food. He had to be toileted, usually by his wife who nursed him for the full duration of his illness. He dribbled and so, as an intelligent civil engineer he spent his long, long days in one chair by a window with a large bib on.
As his speech became difficult to understand and then non-existent he would communicate using an E-Tran board. This is a transparent plastic frame printed with colour-coded letters of the alphabet. He communicated with us by indicating a colour and then a segment of the board. We could then write down the letter he was referring to and gradually piece together words and short sentences. When my father could no longer eat food he elected to have a feeding tube inserted into his stomach. This enabled PEG feeding and it is how he consumed his food and drink.
Approximately five years into his disease, my father asked me, via the E-Tran board, whether he could end his life. I researched the law and was able to tell him about the 2003 Victorian Supreme Court case of Gardner: re BWV. The Court proceedings were initiated to obtain a ruling on whether artificial nutrition and hydration delivered through a PEG tube was regarded as ‘medical treatment’ or ‘palliative care’.
Under the Medical Treatment Act 1988, ‘medical treatment’ may be refused but ‘palliative care’ may not.
The definition of ‘palliative care’ in the Act includes ‘the reasonable provision of food and water’. The Court decided that PEG tube feeding was a ‘medical treatment’ and so can be refused by a guardian or an agent authorised to make medical treatment decisions on behalf of a person unable to make their own decision. Because my father was PEG fed he had the option to cease that treatment. However, this meant he would die of starvation and dehydration.
My father delayed further steps for the time being. However, approximately six months later he asked me to contact his palliative care doctor to discuss his options. My father had had intermittent contact with the palliative care doctor for approximately two years. This was usually when my father went into the palliative care hospice for occasional two-week stays to give my mother respite from the demands of 24/7 care. This pre-existing relationship with the palliative care doctor meant that they had met when my dad could still communicate verbally to some extent and they got to know and trust one another.
I spoke by telephone to the palliative care doctor and organised for Dad and he to meet and discuss his feelings. The doctor called at our home and spoke to my father. I understand my father indicated to the doctor that he wanted to cease PEG feeding.
The palliative care doctor then organised a family conference at our family home. My father, mother, brother, the doctor and myself attended. During this meeting, my father and the rest of the family talked about what he wanted to do. This discussion was facilitated by the doctor. Everyone was able to talk openly – Dad via his E-Tran board.
Needless to say it was a harrowing discussion but it was respectful and ordered, and allowed the views of everyone to be heard and considered. The decision-making remained my father’s. He knew that the muscles in his eyes were weakening and once he could no longer keep his eyes open and indicate letters on the E-Tran board, he would have no effective way to communicate his wishes.
The discussion ended with the views of all family members being known – albeit not necessarily accepted. My mother desperately wanted my father to reconsider his decision to cease PEG feeding. The palliative care doctor suggested that if and when my father was ready to act on his plans to contact him.
I believe the decision-making process available to my father was very good. I was able to get him information about the law when he sought it. He had a pre-existing relationship with a doctor who knew him and his disease. He had access to this doctor when he needed further information about his end of life choices.
Discussion of those choices took place in an open and transparent way. The discussion was facilitated so that the views of all the family were heard in a calm albeit emotional atmosphere. It was always very clear that the decision was my father’s to make. There was no hurry to resolve the issue – it was up to my father to take each step, if and when he wanted to.
Sadly, the compassionate and considered decision-making about my father’s end of life choices was followed with the cruel reality of his death. Because my father had PEG feeding (medical treatment), he had options to end his life that would not be available to other people who were still feeding via mouth (palliative care). However, while the law respected his right to decide to end his life, it gave him no help to do it and insisted that he must die slowly of starvation and dehydration.
Dying this way can take days or even a fortnight, so my father needed access to reliable palliative care to relieve his suffering. Accordingly he asked to be admitted to the local palliative care hospice where he knew he would have quick access to pain relief if he needed it. He did not want to risk being without necessary pain relief at home.
I suspected he also felt that his family would also need the support of the hospital staff rather than watching him die slowly at home. A day in the following week, the family conference was set for his admission and he (and we) counted down his days left at home. His final morning at home was heartbreaking. My mother dressed him and he thanked her (using the E-Tran board to dictate the message to me) for their happy marriage and for caring for him.
He then asked to see, for the last time, the garden that he had planted. He sat for a long time in his wheelchair on the front veranda, with my mum, and just looked at the garden until the disabled taxi arrived and he left his home forever.
While the staff at the hospice were kind and considerate, there was no escaping the necessary steps of dying in this way. Mucus solidified in the back of his throat and needed to be regularly prised out with cotton buds, causing him to gag. His mouth was dry and could only be swabbed with water. Nurses, unfamiliar with his routines, tried to turn and bathe him and struggled to get him comfortable. He was eventually sedated when muscle cramps were so overwhelming and painful for him. I hope the sedation was effective in managing that pain. He died after 12 days.
I cannot help thinking how much better my father’s death could have been. A thoughtful and respectful decision-making process allowed him to choose to die. Sadly, he was not then offered a humane option to implement his decision, such as a lethal injection or medication.
Such an option would have spared him the physical distress of dying over 12 days from lack of food and water, his only choice under current law. It would also have spared him the grief of saying goodbye and leaving his home, garden and neighbourhood to die slowly in a hospital a few kilometres away with strangers tending him and his family watching his slow demise.
Those who argue against euthanasia rightly highlight the importance of each person being truly free to make their own decision about their end of life. I feel that my dad’s decision-making process had good checks and balances and that his decision was sound and based on a process with integrity. It demonstrated to me that such decision-making can be made carefully and ethically to protect the rights of the terminally ill.
Anne Woodger, July 2017