Watching mum lie in bed for years, unable to communicate with us and often distressed, convinced me that we need to talk about dying
Belfast writer Alana Kirk, whose mother passed away five-and-a-half years after suffering a debilitating stroke, opens up on why we must engage more with our families on the best way to prepare for life's only certainty
Do you ever ask how would you like to die? More importantly, is it a question you ever answer? And most importantly, is it an answer you share with your family?
No one wants to think about their death, yet it is one of the most fundamental aspects of life.
We all die. Yet, for something so certain and important, it is perhaps surprising how little thought and attention we give it. Over half-a-million people die in the UK every year, yet when the Department of Health did research as part of its End of Life Strategy it found people are uncomfortable talking about dying. This means when they come to the end of their lives, friends and loved ones are often not aware of their preferences.
My mum died last February, five-and-a-half years after suffering a catastrophic stroke that left her paralysed, doubly incontinent and brain damaged. In many ways she had a 'good death'. She was at home in Belfast, surrounded by familiar things, in the light of the window where a flower box full of the first blooms of spring danced in the breeze. She died cradled in my arms, my brother and dad holding her hands.
She had not been in pain, and the palliative care nurses who came in twice a day made sure she was comfortable and not agitated.
But in many ways she had a terrible death. Too soon, obviously. Even though she was 81, it would always have been too soon. But in many ways, not soon enough. She had effectively lost her life five-and-a-half years previously and spent the next five years having no say in her life. I'll never forget walking into her bedroom soon after the stroke. There was her novel, the bookmark showing it was only half read. Her make-up was sprawled across her dressing table, and there were clothes hanging on the wardrobe door for lunch with a friend the next day. I looked at that book she would never finish, make-up she would never clear up and clothes she would never wear and the immediacy of that loss was shocking.
It only takes a moment to shatter a future, to end a way of life, to change everything. For the vast majority of us, we are never prepared. We spend so much of our lives planning how we should live, but very little thought is given to how we should die. Yet for many, because of various reasons of incapacity, the decisions around our care is often left to others. My mum lost her right to choose how she would end the rest of her life the second she lost her capacity.
It would be safe to assume most of us would prefer to die peacefully at home, surrounded by family and loved ones, yet it is a fact around 50% of us die in hospital. Preparing for death is not just about dealing with our legacy when we are gone. Planning, preparing and making your voice heard for your actual death is important, too.
When my mum first had her stroke we were asked if she should be resuscitated if she stopped breathing. We didn't hesitate or confer. We said no. We knew my mum would have hated being left as she was. But what if we had conferred and one of us had disagreed? This is what often happens, as the decision over a parent's or spouse's death is left up to family members who are already in a deep place of distress.
Medical science is improving all the time and people are living longer, but as well as the obvious benefits, it poses a challenge to respond to the care needs of an ageing population. While the medical profession has rightly focused on quantity of life, are we giving enough focus on the issue of quality of life?
My mum had a DNR from the beginning but her heart never stopped beating. And since she was incapable of directing us further, we had to let her exist as she was, intervening and hospitalising her every time she had an infection. Unable to communicate, she was often distressed with the battery of tests, scans and treatments, and being surrounded by unfamiliar people.
Research released last year in the International Journal for Quality in Health Care shows that up to 38% of patients in the UK received non-beneficial treatment in end-of-life care. That means they had interventions and treatments that in no way helped to keep them alive. Though the ability to make an Advanced Care Directive isn't in place yet in NI, it is possible to do so in the rest of the UK and many would like to see it extended here too.
The Dying Matters Coalition was established to promote awareness and support changing attitudes towards dying, encouraging people to communicate their preferences for what they want to happen when they are approaching the end of their lives.
"We only die once," says Toby Scott, communications manager, "and getting it right is both important for the person who is dying so that their wishes are met with dignity, but it's also important for family and the people who love and care for them."
A living will is a response to advances in medical care and to indefinite life-prolonging treatment, and can provide clarity around our own decisions about withdrawing life-prolonging treatment in certain circumstances. This is not euthanasia or assisted dying, but about deciding to withdraw life-prolonging treatment, for example, if quality of life was very poor, while allowing pain relief and palliative care. It can outline in what circumstances you might prefer to refuse treatments if you are no longer capable of making those decisions.
"This year, of all those patients who came to hospital, and who ended up passing away there, only 4% had an advance care plan," says Tom Gentry, policy adviser of Age UK.
"In the UK we are still guilty of medicalising death rather than seeing it as a natural process. Death is almost seen as a failure of medicine, yet 92% of deaths in England and Wales were over the age of 65, and three-quarters were over the age of 75."
My experience has made me realise that preparing for death is not just about letting go of life. It's also about planning, preparing and making your voice heard so that you get the death you want. According to Scott, the first step is to know what your options are.
He says: "Many people aren't aware that you can refuse treatment and still get access to the best palliative care. Good medical care isn't just about length of life, but also about quality. Knowing your options and having an open conversation with your nearest and dearest will help you and the medical staff make decisions around your care. It doesn't matter what age you are. You can't do this too early."
For obvious reasons, thinking about our, or our parent's death, is an upsetting notion, but talking about death is about empowering people to make decisions for themselves while they can. It's the start of a long societal conversation that needs to take centre stage as we deal with the issue of quality as well as quantity of life.
My mum had her stroke just three days after my third baby was born, and I was catapulted into my sandwich years of parent care and child care. Over the next five-and-a-half years we cared for her at home, and as a family, made many decisions around my mum's care. Often those decisions were incredibly hard, as we tried to do what was best for someone we loved so much.
Perhaps she would have wanted every one of those days to watch her family even though she couldn't really participate. Maybe she wouldn't have wanted to endure what she did.
We will never know. The conversation about dying has only just begun. But for now, if we love the life we live, if we love the family we leave behind, if we want to be in control of our living, then as a society and individually, we need to talk more about dying.
Alana Kirk is author of The Sandwich Years, Hachette Ireland, £8.99, a heartfelt, inspirational story of one woman's journey through years of being 'sandwiched' between looking after her young children and her mother and how, through caring for the person she had relied on most, she finally found herself