It seems we can discuss just about anything these days – money, sex, mental health – but we still cannot talk about death. Despite being besieged by a deadly pandemic, society is still outraged when GPs try to open up these dialogues, so we are understandably anxious about some of the media reporting of our advanced care planning.
I faced this angst just over six months ago, when I received an email from my family to say my mum’s suspected dementia had been confirmed on a CT scan. It was no major surprise; she’d been forgetting what she ate for lunch and becoming increasingly withdrawn.
At the time, I gently broached the issue of advanced care planning but was met with some resistance. At 88, mum was still climbing the stairs five times a day to read her prayers. She was fully mobile, had no significant medical conditions and was on minimal medication. I understood my family’s reluctance to discuss end-of-life care issues, despite dementia being a terminal condition with an average life expectancy of less than five years.
Although such emotions are natural, I still felt extremely uncomfortable about the thought of my incredibly proud mother losing her dignity at the end of life. This was a woman who hand-washed the clothes of her nine kids on a daily basis and kept an immaculate home. A woman who, on hearing of a friend’s catheter insertion in hospital, told me she would never wish to lose control of her hygiene and self-respect like that.
We are not immortal, despite all the advances in medicine and technology
I reflected on why well-informed members of my family, some of whom have a healthcare background, did not wish to discuss a DNAR order. I realised how much work needs to be done to recalibrate society’s expectations about resuscitation, and we have made little progress within this Covid world. There remains a perception that a DNAR means depriving someone of treatment, rather than the reality of allowing a natural death.
Sadly, my mum has now significantly deteriorated. She can no longer safely climb the stairs and struggles to hold a conversation. She is being lovingly cared for by my brother and his wife, who are owed a debt of gratitude I will never be able to repay. She was recently visited by her wonderful GP, who triggered community nurse support and also broached end-of-life care honestly and sensitively.
So, last week I received a second email from my family, this time advising of mum’s DNAR status. I felt immediate relief, knowing that quality of life would be prioritised over quantity, but I knew this emotion would not be shared by all the family.
Like any major crisis, Covid brings some life lessons as well as hardship. A key learning point for us all is that we are not immortal, despite all the advances in medicine and technology. That, as a society, we need to start talking about and accepting death, just as we do birth and marriage.
As I write this in the middle of Dying Matters Awareness Week, I hope for the day when we can start having these conversations in classrooms, and funeral wish-lists become as much a part of our lives as wedding lists.
Dr Shaba Nabi is a GP trainer in Bristol. Read more of Dr Nabi’s blogs here