The conversation which never happened.

I will always remember the year twenty twenty-one. It was the first year I worked as a doctor and the year my father died. He died at home one morning in February. It was a surprise to us all. He was 78.

I always thought of dad as a good 78. This term ‘good’ or ‘bad’ in reference to age, is used unofficially by healthcare workers as an assessment of health at a given age. A good age is someone who appears to still have physical reserve and is able to bounce back from illness. Someone not weighed down by the morbidity of chronic illness. But to be honest, over the last 6 months of dad’s life he had deteriorated. He wasn’t as fit as he used to be. He had lost weight, lost energy. After a long line of investigations, a few minor surgeries, he was found to have an illness which required immunotherapy. Though he was still independent at home, maybe he wasn’t the ‘good’ 78 year-old as I’d always pictured him. But all reports were that his prognosis was good. They’d found the illness before too much damage was done. And he was my dad and he always got better. It’s hard to be objective about someone you care about.

As a medical student I recall being told, when caring for people with multiple health complaints or chronic illness that it is important to step back and ask the question - will this person be alive in 12months? A confronting, yet insightful question. It can help a clinician have constructive and honest conversations with the patients’ they care for. One such conversation is about advanced care planning.

Advanced care planning is an important aspect when it comes to end-of-life. There are aspects like getting finances in order and making a Will etcetera. But what I really needed to talk to dad about was what type of death he would want, what did he value in his life, and what would we do if we found him unresponsive. In her book, A Better Death, Dr Srivastava discusses what she has learnt from her oncology patients about values and conversations which are important for dying well. One such point she makes, and I found quite poignant was, and I quote, ‘when we cannot speak for ourselves, we need our loved ones to be our confident advocates, bold enough to distinguish between what we want and what they think we should want’. This is only possible when we have discussions with loved ones about what they value and want from life.

On multiple occasions over the last six months of dad’s life I thought about having a discussion with him about his end-of-life wishes and values. It’s an uncomfortable discussion to have with a family member who is unwell but not acutely dying or expected to die. But that is the best time to have the conversation. I never had that conversation. Dad never liked talking about mortality. He’d had a near death experience at the age of twelve when he grabbed a high voltage power cable, thus had a keener sense of mortality and what to expect than most. I think the idea of losing his second chance at life frightened him, he always lived for today and never thought of himself as old. It’s hard to admit now, but I was always too nervous about the best way to approach the subject with dad, which was to both my father’s and my detriment.

So why do I reflect so much on the lack of a conversation about end-of-life planning with my father? I think it’s important to understanding that by knowing a person’s end of life plan and values, it not only respects that person’s autonomy to give them he death they want. But it also gives those left to make decisions at the end solace in knowing they are acting how that person would want, a point I never fully understood before. So let me continue my story about my father’s death.

On the morning of dad’s death, mum found him unresponsive on a chair in their bathroom. She had seen him an hour earlier sleeping in bed and breathing. My young family and I live in a second house on the family property and were awoken by mum frantically knocking on our door early in the morning. I ran over, confirmed he was unresponsive and told mum to call an ambulance. I instinctively lifted his head to open his airway. His lips were cyanosed. Looking at his chest, no rise or fall. I reached for his radial pulse, nothing. I remember thinking, he is dead. I began to be overtaken by horror. I looked over and mum was in shock. Then my training took over, think objectively, not emotionally. He was warm and not stiff, but I had no idea how long he’d been like this. This all happened in the briefest of moments. The ambulance operator on the end of the phone asked me, “Do you want to start chest compressions?” It was the next step of the Basic Life Support algorithm that had been drilled into me through medical school and as a junior doctor. But for patient with goals of care stating not for resuscitation, then we wouldn’t start compressions. I didn’t know what dad wanted. I had to make this choice. Reflecting back, this decision would have been so much easier if I had of talked to dad about what he wanted. Mum was a mess and looking to me for answers. In that moment I decided that dad would’ve wanted me to try to prolong his life, so I started resuscitation. With my mother’s help we lowered dad to the floor, and I began chest compressions.

I felt mum didn’t need to see me doing cardiopulmonary resuscitation, CPR, on dad, so I sent her out to direct the ambulance officers in when they arrived. I was alone in the bathroom with dad and the ambulance officer on the phone. I’d never done chest compressions on a person before. I’d done it uncountable times on training manikin and seen it done on patients by others, but that didn’t prepare me what they are like. It is violent. It is horrible. I remember tears rolling down my cheeks as I continue compressions to the rhythm counted by the ambulance officer on the phone. Throughout this episode I depersonalised what I was doing, there was no way I could process what I was experiencing.

The next thing that happened was the first ambulance turned up. I continued to assist as they worked through the advanced life support algorithm. Dad was in asystole, his heart wasn’t beating. When the second crew arrived, I went to support mum. After a period of time, I can’t recall exactly, one of the ambulance officers came out and told us dad had not responded, they were continuing but would we like them to stop. Another decision.

I asked mum if she knew what dad would want. She said he just didn’t want to be attached to machines to live. The decision was left to me, I was dad’s advocate for a second time. We didn’t know how long dad had been sitting there before I started chest compressions. But I did know what happened when the brain doesn’t get oxygen after 3 mins, tissue begins to die. And as hypoxia continues other organs die. I knew dad would not want a life where he couldn’t use his brain and body. He valued the intellectual aspects of his life and his body’s freedom to experience the world. I discussed this with mum and decided it was in dad’s best interest to stop trying to bring him back. It was a hard decision, but one we knew was the right decision instantly. And that was it, my father had died and wasn’t coming back.

In the hours, days, weeks and months which followed dad’s death, the decision I ruminated over from that day was the one to start chest compressions. Was it the right thing to do? Is it what dad would have wanted? That decision, once started, rolled into a whole lot more intervention for dad. The violent act of compressions on dad’s chest will stick with me forever. The trauma I caused him. I keep asking myself was that the correct decision, should I have left dad in peace. The psychological processing after these decisions can be immense. It changed how I grieved. Everyone’s case will be different, but these decisions don’t need to leave scars for those left to make them. That is why discussions around goals of care and advanced care planning are so important to respect the dying’s wishes. It allows them to have the death they wanted, whilst allowing the ones left behind to take comfort that they are making decisions consistent their loved one’s wishes.