What we wish we knew about VAD

John Hunt was only 62 when he was diagnosed with a glioblastoma. His access to Voluntary Assisted Dying came sadly too late to have the peaceful ending he wanted. 

John’s sister Philippa Featherstone writes about the hard lessons they learnt, and how better communication could have changed everything.  

I had the privilege of being an advocate for my younger brother John during the VAD process in early 2022.

Sadly this story does not have a happy ending. This is the very reason I feel compelled to tell John’s story. The main reason it could have had a different outcome is due to the fact that John was unaware of how quickly his condition was deteriorating and that his life expectancy was not going to be what was originally thought.

If there had been more open discussion with him during hospital and doctors’ visits about his prognosis he would have set the process of VAD in motion much earlier, saving him and the family from the horror of the last month he endured before his death.

A devoted family man 

John was kind, gentle, honourable, compassionate and most of all, a devoted family man. He was extremely well-read, loved books, art and music, and was about to retire early so he could resume his love of watercolour painting. He also had a wonderfully dry sense of humour, which amazingly, he managed to keep during the early days after his diagnosis.

John had always been interested in, and supportive of, VAD, and was relieved when Victoria passed laws [in 2017]. 

Never did we think that just five years later, John would find himself in the position of confronting this choice.

A shock diagnosis

On Xmas Eve 2021, John woke up to find his mouth had dropped and he was having difficulty speaking.

An MRI revealed he had the worst kind of brain tumour, a glioblastoma.

He had surgery to remove as much of the tumour as possible, but was still given the awful prognosis of six to 18 months.

It was at this time that John started thinking about VAD and approached me about being his advocate, as he did not want to put his wife or daughters through the ordeal we all knew it would be. John's my younger brother and we were like best friends. All three of us siblings were very close. 

John had been told his personality would change due to the location of the tumour and he couldn’t conceive of his family being witness to this. 

Even though there was no cure for the glioblastoma, John had radiation and oral chemotherapy to help with the symptoms. However after the treatment finished, he suffered multiple seizures and was rushed to hospital unconscious. Fortunately there was no brain damage but when he woke up he was given the news that he would never drive again, a bitter pill as he’d just ordered a new car. (He took that in his stride, as he did with everything, and said he was still looking forward to being a passenger!)

Nothing was mentioned about a change of prognosis, yet John was deteriorating rapidly. He was now in a wheelchair, and had lost most of his speech. We decided to go to the hospital and put the hard questions to the doctor. Only three months since the diagnosis, we were given the shocking news that John was now in the final stages of the disease.

A race against the disease  

John applied for VAD, and the team was very helpful in organising the assessments and trying to get the approval as quickly as possible. 

His personality had also begun to change, with angry outbursts at the people he loved most in the world, and this was devastating to watch. There really are no words to describe his condition at this time.

John had to be moved out of palliative care as they did not allow VAD at the time, and permission was granted for it to take place in a room in a nearby private hospital. 

That in itself turned out to be a nightmare. The indignity of that move was dreadful as John had lost control of everything and was in a huge sling, a sight none of us will ever forget. But John wanted to have his family around him when he died, so pushed forward with his plan. 

VAD day

Although John was in terrible pain he couldn’t have any morphine on the day of VAD as he needed to retain capacity to be eligible. 

John finally had VAD, with us gathered all around him, but in a terrible state - screaming out, in pain and frustration. It was hardly the peaceful death he had hoped and planned for. 

Regrets 

The VAD team was wonderful, and we feel enormous gratitude for the doctors who understood and helped John during this traumatic time.

But it all happened a month too late. 

If we’d had more information about his prognosis, and if doctors had been able to discuss VAD openly with us, he could have applied earlier. We would have had more quality time, and John would have been spared those terrible final weeks. 

I think my main message is to please ask questions at every step of the way. We were quite naive when we began this journey and I hope these words may help someone else in a similar situation.

Finally, from my perspective as an advocate, I would like to say it can be a very lonely and surreal situation to find oneself in. It would have been extremely helpful to me if I had been able to speak with an advocate who had been through VAD with someone suffering the same disease, and I would be honoured to be that person should it ever be required.

Griefline holds online VAD support groups, for family members supporting a loved one going through the process of VAD. Click here for more information and how to register.