Stephen had a peaceful death
In 2021, my husband of 35 years, Stephen, became one of the first people to use Western Australia’s Voluntary Assisted Dying (VAD) law. I hope sharing our story will help break the stigma that still surrounds VAD – and support other families going through the process.
Sometimes life throws the unimaginable at you - and Stephen’s diagnosis was one of those moments. Days after his 53rd birthday, he was admitted to hospital with severe abdominal pain and three weeks later we learnt he had stage 4 pancreatic cancer. Weight had already started dropping off him and he was losing his hair. Our lives became dominated by hospital stints, scans and new medications. It was a sign of what was to come.
Stephen, like most of us, did not want to die. We had been married 35 years and were looking forward to a long and happy retirement together after years working FIFO jobs. To buy himself more time, he opted for palliative chemotherapy. Our journey of one thousand medical things you never wanted to know began.
In March 2021, we saw an ABC documentary - you may have watched it - called “Laura’s Choice”. It followed Laura’s journey to end her life on her own terms. It was clear this was a choice Stephen wanted too.
We both started tracking the progress of VAD legislation in WA. There was hope.
Finally, in July 2021, the law came into effect and Stephen took the first step of calling the Care Navigator service.
Stephen was determined to use VAD and had written a list of reasons why he should be eligible. He expected to need to fight to access VAD. However, during his call with the Care Navigators it became apparent he didn’t need to; they were very sympathetic, listened to Stephen’s story and reassured him that based on what he was hearing, Stephen was definitely able to put in a First Request.
We were both concerned about the prejudice we might face from our own medical practitioner and asked if we could liaise with a doctor who was familiar with the VAD process.
Stephen did not want any delays; he knew his time was running short. The next day we spoke with the doctor recommended by the Care Navigator, who then visited us at home the next day and explained the ten steps involved.
Both the Care Navigator and the doctor were so helpful in progressing Stephen’s request to access VAD. They helped us get together the necessary documentation and the doctor accepted our First Request, now becoming our Coordinating Practitioner.
During this time, we visited our regular GP, who was already aware of the cancer diagnosis. We explained Stephen’s intent to have VAD available to him as a choice. The GP said we were the first people to approach them about it, but accepted our choice and said they would support us.
We also advised Stephen’s oncologist of his intent to have VAD available, if he wanted and needed it. Surprisingly, we were also the first patients to have spoken to them about VAD.
There was still a stigma attached to VAD as an end-of-life choice, and we decided to wait until the steps required were completed and in place before we told our family. It was not a sense of giving up; it was being able to have that choice to die with dignity, since cancer was taking away the option to carry on living.
The VAD process was at the Written Declaration stage, which requires two witnesses to sign (Step 4). To be eligible to be a witness the person needed to be 18 years of age or older, not knowingly benefit from the will of the patient, not be a family member or be either the Coordinating Practitioner or Consulting Practitioner. This was a problem for us as we had not discussed VAD with anyone, and we wanted the process to be in place before advising our family or friends. Graciously, our psychologist offered to witness the declaration alongwith their colleague.
Almost a year to the day that Stephen had first fallen ill, his tumours stopped responding to chemotherapy. His oncologist suggested he step back and enjoy what time was left. It was time to let the family know about the Voluntary Assisted Dying.
Surprisingly there was no push back from the family, I think we all just wanted what was best for Stephen, and if this was what he wanted, then we supported him. We could all see his suffering and the toll it was taking on his body.
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At this point, we were at the point of the Final Request. We parked it there until he chose a date.
I had been grieving from day one, having heard or read all the specialist’s reports. For the family, it was probably a realisation that there was no hope - if that was what they were holding onto - and it was not going to end well.
A few weeks passed, and Stephen’s condition deteriorated rapidly. We discussed with our VAD Coordinating Practitioner what would happen if I had to admit Stephen to hospital. Some hospitals and hospices will not allow VAD, meaning Stephen would have to be transported to another facility. This sounded like an ordeal for someone who was probably already in a dire way. It was a firm no thank you from Stephen, I will not be in a hospital.
Not long after this, I found him in a bad way in the shower. He was defeated. He told me it was time. He wanted no more. I think he knew it was going downhill fast. He called the VAD Coordinating Practitioner the next morning and they visited the same day. Stephen chose his VAD date to be in five days’ time, and requested the doctor be there at 11am.
We knew this would be a shock to the family, and it was. Even I felt like I wanted more time.
I had spent the last 14 months by his side through all the procedures, chemo, the VAD application, accessing home palliative care, visiting funeral directors and planning his funeral, songs to be played, photos to show, what he would be dressed in - but it still felt awful. I was losing my best friend.
The only comfort I had was that it would be a peaceful death, at home and when he wanted it.
The next steps were completed, the Final Review and the Administration Decision. The Coordinating Practitioner would submit the prescription, collect the substance on our behalf and deliver it to us the morning of Stephen’s VAD day.
In the meantime, I wanted to support him and make these last few days as peaceful and normal as possible. We talked about the VAD day; did he want music playing, who was to be in the room, did he want the family there? It was all very surreal.
We had a family get together a few days before, trying our best to keep things happy and light-hearted even though we all knew what was coming. It’s very unusual to actually know the date and time of death.
On the day, we had breakfast together as we normally do. I didn’t need to ask how Stephen felt; I knew he was comfortable with his decision, but I felt terrible.
Stephen changed into the clothes he would wear, had a coffee, and waited for the doctor and our family.
We had arranged for the doctor to arrive first. They made us feel relaxed. Nothing was to be rushed, all in Stephen’s time. The family met the doctor, and he explained what would happen and generously offered to stay behind afterwards if they wanted to speak to him.
When Stephen was ready, he said his final goodbyes, hugs and handshakes with his family. I was to be the witness to the doctor administering the substance. It was only the three of us in the room.
Over the past four months, we had developed a close relationship, so we had a chat for a while before the Doctor asked if he was still okay with proceeding. (You can stop at any time, you do not have to proceed even on the day).
Stephen said he was ready. A soundtrack of songs Stephen liked was playing in the background and I sat next to him as he lay propped up on the bed, holding hands.
Stephen had accepted an anti-anxiety drug prior, so he was very relaxed. The drugs were administered through the port Stephen had in his chest, so the effect of the substance was very quick. His final words were “I feel really good”. He closed his eyes, and passed.
Cancer had been torturing Stephen for months. At least his death was comfortable, voluntary and on his own terms.
What a beautiful way to spend your last hours, chatting and saying final goodbyes with your family, music of your choice playing in the background, wearing clothes you chose to wear that day, passing in a safe environment comfortable to you.
I personally can’t think of anyone telling me they had hugged or thanked their doctor when a loved one died, nor the dying person doing the same. We did.
It is not easy to lose someone dear to you. Stephen and I had been together for 35 years.
But perhaps my account of the VAD process helps you understand that it was a very peaceful, calm, safe environment for someone to end their life when they are already dying from a terminal illness.
The VAD process as an end-of-life choice is so new to Australia. Hopefully one day soon it can be talked about openly and be accepted as a normal choice for the terminally ill. I look forward to the day that VAD can sit comfortably alongside all the other end-of-life planning we do; care plans, Advance Care Directives, wills and powers of attorney.
People are already dying. Let them die with dignity.
- Lisa Boeyen, WA