Personal reflections on Voluntary Assisted Dying (Voluntary Assisted Dying Board Annual Report 2022-23)

The Voluntary Assisted Dying Review Board has been humbled by the many thoughtful personal reflections that have been received from members of the community since voluntary assisted dying came into effect in South Australia.

Living with a life-limiting illness is full of challenges and complex decisions for patients and their families and many emotions such as grief are felt. The impact of this has been richly expressed by family members and friends sharing personal accounts of their loved one’s journey.

The voluntary assisted dying legislation stipulates that a person must come to the decision to access voluntary assisted dying voluntarily and free from coercion, however support from close family members or friends can be helpful.

For example, Daryl’s brother was living with terminal cancer and was concerned that he may lose his capacity to advocate for himself. Daryl talked about the caution he experienced from health care workers as he attempted to be his brother’s advocate in researching access to voluntary assisted dying on his brother’s behalf.

Daryl says he went to great pains to make sure that clinical staff understood he was acting under instruction from his brother, whose speech had been compromised and who was very ill. Bridget describes a similar story supporting her sister whose own end of life experience was shrouded with anxiety and complicated further by secondary brain cancer.

In both scenarios, Daryl and Bridget spoke about the value of the voluntary assisted dying support services who not only provided information and support but whose presence enabled a calm and professional environment to explore aspects of the pathway. Bridget described the support they received as:

“Reassuring, calm, composed and understanding. She was knowledgeable, confident, professional, but also very down to earth and human.”

Daryl speaks more to the equal partnership that he and his brother encountered with the voluntary assisted dying staff.

“It was a very even partnership from the first moment, by that I mean that the VAD Liaison Nurse set up a dynamic where we were all on this journey in a partnership, and that the primary person was always my brother”.

The legislation has safeguards built into it to ensure that the process to access voluntary assisted dying is safe. Daryl describes the ability of the voluntary assisted dying support services to balance the legislation with compassion.

“It is the humanity shown throughout that is of the foremost importance I think: and the various legal aspects while driving the strict and necessary sequential processes are nevertheless the subordinate parts of the successful implementation of the voluntary assisted dying experience”.

The voluntary assisted dying team connected Bridget’s sister and Daryl’s brother with medical practitioners who could assess them for eligibility for voluntary assisted dying. Both Daryl and Bridget describe the doctors as very supportive:

“The voluntary assisted dying process was really the first time that any medical and allied health practitioners had given such understanding and empathy to my sister’s suffering, and that was such a relief.”

Daryl reflected on how the voluntary assisted dying process empowered his brother at a time in his life where his sense of control was slipping:

“The fact that my brother might finally have some agency and autonomy in the matter of his own health and his imminent journey to his final days on earth was an empowering moment and one that cannot be overestimated in its effect on the person’s sense of well-being and control over one core thing in their life when all other things seem to be beyond their control.”

Both Daryl and Bridget found the support from the staff at the SA Voluntary Assisted Dying Pharmacy Service to be reassuring.

“The pharmacists took time to make sure that preparation of the medication was well understood and rehearsed and that any questions were answered.”

In Daryl’s case, his brother did not die from administration of the voluntary assisted dying substance. His experience with voluntary assisted dying was profound and provided him a sense of control over his illness.

“In the end, being granted voluntary assisted dying gave my brother and myself comfort. And even though he didn’t use the kit, just knowing it was an option for him was therapeutic and life affirming in a very real way.”

Bridget described her sister’s final hours as calm with an opportunity to say her goodbyes. Her lounge room was set up like a comfy little nest, with items of significance close by. Following last hugs and some brief words Bridget’s sister administered the medication. There was no anxiety or hesitation, and she was asleep within a minute.

For Bridget being able to sit quietly with her sister in those first couple of hours after she died was comforting. The community nurse was available to declare life extinct, which enabled the funeral directors to come and collect the body. Bridget says the experience of voluntary assisted dying was positive, and she and the family are grateful for the exceptional care provided by all involved in supporting her sister through the voluntary assisted dying pathway.

Whilst every voluntary assisted dying experience will be different, these first-hand accounts describe the process as providing relief of suffering and demonstrate the benefits of a planned approach and the involvement of voluntary assisted dying support services in supporting a positive, person-centred pathway for each individual.

Dr Manthorpe was in the final stages of metastatic prostate cancer when he chose to end his life through voluntary assisted dying in March 2023.

We all (the five siblings) gathered at Dad’s house around 9am. A bottle of Penfold’s Grange, ordered for the occasion, was opened and we proceeded to drink as we chatted, with Dad giving us last lessons in wine appreciation!

Settling into his recliner chair, looking out from the lounge room to the view over the sea, with the five of us around him, Dad gave a short summary of how privileged he felt to have reached a grand age with so few tragedies and with a wonderful big family whom all got along. There were lots of tears, laughter, hugs, and music. And the wine!

It was very peaceful, without any trauma or distress. We had plenty of time to be with Dad – a very peaceful and dignified death. He had chosen the time, the place, the music, who to be with and the special wine. We were all in awe of his unwavering courage and determination to follow this through, orchestrating it to perfection.