'It was just us as a family'

Pauline McGrath spoke at Go Gentle’s State of VAD report launch about the assisted death of her husband, Dr David Levitt in 2023. This is an edited extract of her speech.

I came home from work late on Thursday, 27th May 2022, into a very unusual environment because the lights were on, and our old Schnauzer was eating dinner.

David was never home from work before I was. He walked out of our bedroom, and being the sort of upfront person that I am, I looked at him and said, "Oh, love, who's died?", thinking that maybe one of our elderly parents had died.

He looked at me across our lounge room and said, "I have a brain tumour, and voluntary assisted dying starts in Queensland on the 1st of January".

David had already looked to his future, and had wanted to know options for his own end-of-life care.

We knew, with a diagnosis of the glioblastoma multiforme, that David's life was now very limited. Our eldest daughter, Claire, had recently got engaged, and David was committed to try and live as long as he could so that he could be present for her wedding.

Our youngest daughter, Hannah, had just met a lovely young man, and David wanted to spend some time getting to know him.

And so David went through the process of surgery, radiation therapy and chemotherapy in an attempt to live longer, to do three things: to spend as much time with his family as he could, to walk his daughter down the aisle, and to have the option of voluntary assisted dying.

He knew that with VAD he could choose when he exited this world, and under what conditions.

As healthcare workers, we knew what end-of-life looked like with a brain tumour, and David wanted some control over that process. That was an incredibly important part of his capacity to cope over the next 11 months. He knew that with VAD he could choose when he exited this world, and under what conditions.

So when VAD became available in Queensland in January 2023, I was tasked with the role of contacting the state’s VAD team. The team, right from the moment they answered the phone, were nothing but aware and supportive and compassionate. They were quick to pick up on the fact that I was medically literate in the way I was able to discuss what was happening for us, and put us in contact with the voluntary assisted dying team in Metro South in Queensland.

Unfortunately the one part of care that didn't particularly work for us as a family was the fact that living in West End in Brisbane meant that we were zoned to faith-based care.

And our discussions around the use of voluntary assisted dying in a faith-based organisation met a very hard ‘no’. I've worked for many years in genetic counselling, working with women who were facing issues around termination of pregnancy, so I was familiar with these systems. What I had hoped was that there was more compassion in the care that David was going to be offered in that environment. However the hard ‘no’ of ‘we're not here to help you in that area’, meant that he completely disengaged from palliative care services, and for a man dying of brain cancer, to have no options for palliative care were very confronting.

We were fortunate enough to live in a community where I was able to source the resources that we might need to care for David at home as long as possible; such as walking aids and wheelchairs.

He wanted control. He wanted not to die in pain, and he wanted to die at home surrounded by his family.

David had three things he wanted around the end of his life. He wanted control. He wanted not to die in pain, and he wanted to die at home surrounded by his family.

The VAD team came to our home on no less than four occasions to go through the process of organising voluntary assisted dying. 

I have worked in hospitals since I was 17 years old, and the capacity to do everything in our own home was incredibly important. It meant we had a safe environment for us to discuss things that were so confronting, and the team took us through the process very clearly.

We knew exactly what to expect, which ended in the pharmacy team leaving with us the substance that David could use to end his life when, and if, he chose to, at any point in time.

He just wanted to die in his own bed being held by the people who loved him most in the world.

In the early hours of the morning in late April, 2023, as I helped him get back into bed after using the bathroom once again, he said to me, 'I'm done, Paula, I've had enough'.

His body had started to fail, and his capacity to ambulate and mobilise independently was leaving him.

What that allowed for our family was the time for us to gather together, reflecting on how much we loved being a family.

It allowed us the time and the comfort to know that this was going to happen, and in our own home, which was exactly where David wished to die. He was not going to find himself in palliative care in a faith-based organisation where he may feel unsupported in his choices. He just wanted to die in his own bed being held by the people who loved him most in the world.

What was important to us, was that it was just us as a family.

We wanted to send him off with one last good glass of French champagne. Unfortunately, he was just too unwell to even enjoy that. So he got the pleasure of watching us enjoy some lovely French champagne. We lifted our glasses and wished him L’Chayim, which is the Jewish toast ‘to life’. The following morning, we all spent time with him in a one-on-one capacity, telling him how important he had been to us, because he was just the very best of men.

Interestingly enough, the most distressed was our old dog. We couldn't settle him at all. So animals can feel some sense of change in the air.

We had Claire and Hannah mix the substance up for David, and we laid him in bed, and we surrounded him, and we talked to him about how loved he was. He drank the substance, and within two minutes, David gently went to sleep. He had a bit of a snort, because he was a well known snorer and then just quietly, 20 minutes later, with my head on his chest, I heard his heart slow and stop.

Because Claire is a registered nurse, she picked up his stethoscope and listened to his chest, and we were able to identify that he was no longer with us. We spent the rest of the day with him before we called the funeral director to come and pick him up.

What was important to us, was that it was just us as a family. We didn't have to introduce any other healthcare workers into this environment. We didn't have any strangers that were there during this very private and intimate family time. And that was unbelievably important to David, and it was incredibly important to our family as well.

After David died, I had dinner with a neighbour of mine whose brother died of a glioblastoma 20 years ago, and when he went to talk about this, he actually burst into tears and left the room. He had asked his brother’s doctor to help him along at the end of his life, but was told ‘due to my religion, I can't help you with that’. Two decades on, my neighbour still feels terribly distressed at the way his brother died, and that's not our story at all.

We, as a family, can sit around a dinner table and discuss David's end of life because it was meaningful and it was peaceful and it was gentle and it was exactly what he wanted when he had no other choice left in this world.

I'm going to finish with the words of a Roman philosopher called Seneca: 'Life is never incomplete if it is an honourable one. In whatever way you choose to leave this world, if you leave it in the right way, it is whole.'

Dr David Levitt was the Director of General Paediatrics and Dermatology, and Director of Paediatric Education at the Queensland Children’s Hospital.  He also spent many years as the sole paediatrician at the Mater Refugee Complex Care Clinic, where he cared for outpatients and children transferred from Nauru. Among his refugee clients and younger colleagues, Dr Levitt was often seen as a father-figure who provided support and guidance during difficult moments. He was posthumously honoured with a 2023 Children's Health Queensland's Medal of Distinction.

Find the State of VAD report in our policy library here