He was a good and kind man
Mary-Kate shares the story of her husband's assisted death after he was diagnosed with stage 4 colorectal cancer in September 2021
My husband John was 71 when he was diagnosed with cancer. He was a fit and healthy man who loved riding his bicycles, rowing a skiff on Port Cygnet, making things out of wood, and growing vegetables in our garden.
John cared for the environment and social justice. While living in NSW, he was chairperson of the Hawkesbury Environment Network, and when he moved to Tasmania, he became involved in issues such as the state capture of our waters by the salmon farms.
His passion for a large part of his life was cycling, and he loved cycling to work and then over time took up mountain biking. He loved being physically challenged by long rides and had a sense of pride that he was able to continue this into his 70s.
John was diagnosed with stage 4 colorectal cancer in September 2021 and started chemotherapy later that year. The drugs were a shock to his system and he struggled with how sick he became while being treated.
After three rounds of treatment, we discovered the tumours had grown in size and number. The oncologist said there were no other treatment options due to a mutation in the cancer and suggested that he had six to nine months to live.
We were left in an office with a box of tissues and no hope. We both cried and drove home; the oncologist gave us a little wave as we left the cancer unit.
The shock of what the future looked like stayed with both of us. As the months went by, John remained relatively well. He continued to garden and go for short bike rides when he felt well enough.
The focus for most of 2022 was regular medical appointments, often in Hobart, an hour’s drive away. Sometimes John was happy to drive himself, other times he wanted me to take him. Despite everything, we would enjoy our time together in the car and feel grateful we lived in such a beautiful part of the world.
Come November, I could see John’s health deteriorating. He was losing weight, sleeping more, and needed increasing doses of painkillers.
By January 2023, John’s health had gone downhill. He needed higher doses of stronger pain management and was sleeping much more. He had no appetite and hardly drank. Over two days I thought he would die and for the first time, he said he needed to go to the hospital.
We had contact over those two days with palliative care doctors who knew how sick he was. Despite this, we were told we needed to attend the emergency department. Unsurprisingly, it was crowded and John was triaged as low priority. He was given some anti-nausea medication, some oral pain relief and told to wait. I was beyond angry – for months, John had been told he could call palliative care for any information or support. And now when we needed that support we were left in ED with a panadol forte. John could barely sit up at this stage he was so ill. I made another call to palliative care and, speaking to a different nurse, was told to bring him directly to the ward.
It was like going into a different world. It was quiet and calm and the staff had the time to be kind.
The two doctors who admitted John looked at the medicines he was taking to manage his nausea and pain and assured him they could do better for him. They also assured him that he could go home when things had been stabilised. John and I had always talked about him wanting to die at home, to be able to see outside to the trees and the sky.
During the next week or so, John settled into a new pattern. For the time, he saw other people in a similar condition to him, and moved between shock that he was in a palliative care ward and feeling like he was better off than some of the other patients. We were focused on getting him home and trying to find food that he liked to keep him from wasting away.
When he came home, he settled into a new recliner chair that finally allowed him to be a bit more comfortable. In the hospital, he had a recliner chair that he liked, so I was able to buy one and have it delivered before he came home. Some comfort at last.
We also rearranged the house with a hospital bed and a walker as John was becoming weaker and needed support. While he resisted using the hospital bed for a while, he started sleeping there as he said he didn’t want to disturb me when he would get up for his frequent trips to the bathroom. Of course, I would still hear him and ask if he needed anything. He would say no, then shortly after, ask if he could get some breakthrough pain medication. I’m sure he hated having to ask and feel dependent, but it was always a quiet and intimate moment between us.
I felt so much love and care for a man who for all his life had been strong and independent.
As John now had a whole new drug regime, we had frequent visits from community nurses who changed the subcutaneous needles in his arms, and drew up the drugs so I could administer them on a regular basis. We were grateful that we had experts from palliative care to refer to and to clarify or make calls on what was best for John.
The beginning of the VAD process
Within a week of returning from hospital, John said that he was going to call the Voluntary Assisted Dying Commission to start the process of requests. We had spoken briefly about it previously, but John at that stage had not really considered it for himself. His focus for 15 months had been to prolong his life and to stay as healthy as he could. The time in the palliative care ward changed that.
I sat with John while he had the first phone conversation with the navigator. Based in Hobart, the navigator was clear that finding a practitioner was challenging as there were very few professionals who had completed the training and who had time to take on the work.
John rang once or twice a week to ‘see how the navigator was going’, knowing that sometimes the squeaky wheel does get attention. He was strong and focused and emphatic that this is what he needed.
Eventually after a few weeks, the navigator let John know that he had found a doctor willing to take him on. He also said that it was John’s regular reminders that showed them that John was serious about his request.
Our initial meeting with the PMP (primary medical practitioner) had to be in Hobart, which at this stage was a big task for John. We picked up a friend on the way to help us with parking and when we arrived at her place John was sick in the gutter. A combination of the drive and the anticipation of the meeting was too much for his body and spirit. The meeting went well and the first request was accepted.
The next steps passed in a blur. It felt almost surreal as forms were signed and visits to our home were made. Once the final request was approved, a date was decided. Throughout this time, John needed increased pain and nausea medication and he became more anxious. He slept more and more and was never really comfortable regardless of the drugs.
John’s GP had started to make home visits to check how he was going and at the last visit, a couple of days before the scheduled administration, he asked John if he would like him to be present when he took the substance.
John’s eyes lit up and he was so happy and grateful for that offer of support.
We also arranged for a friend from Melbourne to be part of the process. As an ex-paramedic and health care worker, she is a calm and practical woman. He knew she would support me, and of course that had been a big concern for him. He felt guilty for getting sick and dying, and leaving me.
Friday, 24 February
The date was set for Friday, 24 February 2023. One of the pharmacists went through a booklet letting us know what to expect, and John needed to be able to say that he understood that the drug he was going to take would kill him, and that he wanted to complete the process.
When the PMP arrived, he also reconfirmed that John still wanted to go through with the process. The barbiturate was retrieved from the pharmacists’ car and the PMP mixed the two ingredients together and poured them into a glass.
I chose John’s favourite whisky glass.
The PMP asked John where he wanted to be, and where he wanted people to be. He was very clear that he would be on the hospital bed set up in the sunny back room and our friend and the GP would be in the adjacent living room where they could see him and he could see them. He wanted me by his bedside. He drank the substance and had some apple juice to wash away the bitterness. He kissed me briefly, and I tasted the bitter substance. He hopped into the hospital bed, organising him to be sitting slightly upright to help the substance to go down, and making sure he had a soft enough pillow.
John was calm as he waited for the drug to take effect. We held hands and I felt calm for him and for me. This is what he had wanted and the alternative of more illness and helplessness was simply not an option for him.
He was asleep within 8 minutes, breathing deeply, and within the next 10 minutes his pulse and breathing slowed. Eighteen minutes after taking the substance, the PMP checked and told me that John was dead. Throughout that time, John was calm and especially immediately following drinking the substance he was relieved.
We kept John at home for a few hours before I called the funeral director. It was good to have John with me for a little while longer. I talked to him and thanked him for our wonderful life together. He was a good and kind man.
John and I were both so grateful that he was able to access VAD. The care we both received from all of the professionals was respectful and kind. Both of us saw the availability of VAD as an important part of John’s cancer journey and it was his preferred way to end that journey.