10 August 2023

Palliative care and VAD: Our experience

Many dying people believe you must choose between palliative care and voluntary assisted dying (VAD). In fact, around 80% of people who choose VAD also receive good quality palliative care right up until the end.

Here, Kay Fraser tells how Queensland palliative care doctors and nurses looked after her husband John for months until he chose an assisted death.

John and I had the best marriage. We loved being with each other and never needed time alone, as others seemed to. John was always good-humoured, kind and thoughtful. We both read a lot, loved an early morning walk and John enjoyed riding his bike on the river paths. John had so much ingenuity, he could fix anything and enjoyed the thinking that came with the challenge. He had done cryptic crosswords for years and took up sudoku, both were handy for the long hospital visits. He had a quiet nature, as I did, and we just fit together perfectly. We travelled a lot, and were recently retired when his bowel cancer returned and Covid struck. Cancer was by far the worst of the two “big Cs”.

Over four years John had gone through nine months of chemotherapy, multiple surgeries and appointments at almost every hospital in Brisbane. Finally, we sat in his oncologist’s room and were told John had a year left. Neither of us knew anything about palliative care. I had heard of Go Gentle and was aware that voluntary assisted dying (VAD) legislation was being discussed in Australia but now, for us, it was real. John and I were thankful for the people who pushed for it to become law.

To have the choice of VAD gave us some peace of mind.

The reality of John’s illness was worse than I could have imagined. John had no energy; he lost an incredible amount of weight and in the end could not do anything for himself. He could not wash, go outside or have a conversation. He had always enjoyed food but now ate miniscule amounts, most of which was vomited back up.

The experience of looking after John in his last few months was exhausting but I would do it again. He wanted to die at home, if possible, and although I didn’t want him to die – ever – if it had to be, then home was what we wanted. The palliative care nurse initially came about once a week.

They were compassionate and helpful, providing whatever drugs John needed and giving me moral support.

The many drugs that John was taking changed constantly. I was shown by the nurse how to give a prefilled syringe to John, something I had zero experience with. I kept a lot of notes about what ailment the drugs were for, how much John could have and when.

For the last few weeks of his life, John was hooked up to a pump, to deliver drugs continuously over 24 hours. The nurse came daily then. I would wake early, ask John gently how was he feeling? The nurse rang before going to visit patients and needed to know if John needed more pain medication than yesterday, was he more nauseous? Had he eaten? Was his bowel working? At the end, John was ready to go and I could see why. It broke my heart to see John in that state.

There was no hope. John had one choice left to him. He chose VAD.

In early January 2023 John had a phone consultation with his GP and asked specifically for VAD. The GP was not able to help. Legislation had only passed in Queensland the previous week, so a day later I called QVAD Support and made initial contact. Looking back, I’m glad we didn’t leave it as the process took longer than either of us realised.

Initially John was going to take the final medication himself but after we’d talked more and read the paperwork, he decided he wanted the doctor to administer the drugs. No room for mucking it up, were our thoughts. The whole way along the VAD path, John could change his mind. Even on the day, the doctor asked John if he wanted to go ahead and if he had said no, that would be fine.

It’s a tough job for the medical people and I admire them for it.

It did seem that the whole VAD process was unnecessarily long and bureaucratic. There was paperwork at every step, ID to be checked, signatures needed witnessing, three doctor’s visits with a set time-frame between them. John would not have been able to manage all that on his own. He struggled to speak, could barely hold a pen. A simpler system, bearing in mind the patient’s illness and the worry and exhaustion of the family, would be of benefit.

When the doctor and nurse came on the final day, I lay on the bed next to John, to comfort each other. John’s body was so damaged by cancer, there was no going back. He could have died a natural death and the palliative care doctor had said that was not far away, but we both thought, why prolong his agony? Why make John suffer more than he had? I loved him, still love him and wanted the best thing for him.

To us, that was VAD and we were grateful it existed.

It seems most people avoid talk of dying, death and funerals. It felt uncomfortable but we organised the main aspects of John’s funeral together, about six months before his death. I had to ring the funeral home on the day John died as they needed to collect him. That sounds awful when I write it, but it’s the unavoidable truth. Having most of the funeral organised meant I didn’t need to think on the day John died.

VAD and palliative care were separate processes from different hospitals and we were grateful to have access to them.

Both worked well for us, even though it was a stressful, exhausting, devastating time. For John, they were both crucial aspects of his care. The palliative care nurses were very supportive of me, they were understanding and helpful and made a difficult time easier.

Due to the religious views of the palliative care hospital, their doctors and nurses were not allowed to be involved in any way with John's VAD procedures. It was a little awkward at times and would have been better if medical staff from both hospitals could work together. I don't think it made a difference to John as he was so desperately ill and did not have the energy to be concerned about anything.

If I had been unaware of VAD legislation, John would have had more weeks of suffering.

I think medical staff should be able to advise patients and family of what is available. Not to recommend it, or otherwise, but just to say, "there is this process available...".

I was so lucky to meet John at the right time and fall in love. We had 33 years together. We made each other so happy. I miss him every minute of every day.