Why I am drawing up a Living Will

One thing we know for certain is that the future is uncertain. It was seeing my mum’s half-read book that brought it home. Four days after my third baby was born, she kissed my other two young daughters goodnight after reading them a story, and then her brain exploded.

I had spoken to her on the phone only an hour before from Holles Street and, excited I was bringing my baby home in the morning, her last words were “I love you.”

She would never say my name again, despite living for another 5½ years. The stroke was sudden, swift and devastating, changing her in minutes from a vibrant, beautiful, active wife, mother, grandmother and popular friend into a permanently paralysed, incontinent, brain-damaged patient who needed 24-hour care.

When I walked up the stairs to her bedroom that she would never see again, I stared at the book she would never finish, and the left-out clothes for lunch with a friend that she would never wear again; shocking reminders that life can change in an instant.

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We spend a lot of time planning how we live, but how much thought goes into how we would like to die?

As a single parent to three young daughters, I’m in the process of drawing up a Living Will. This is not about sharing out the spoils of my life in the event of my death, but about making sure, that in the event I am mentally incapacitated during my life, they will be supported with knowledge about how I want to be treated should I then require medical interventions to keep me alive.

My mum lost her voice the night of her stroke, and had no agency over the next five years of her care and treatment. I’m making sure I maintain that control, even if I can no longer make decisions.

The purpose of a Living Will is that the person making it still has a choice in their medical treatment if they are incapacitated

Nearly 29,000 deaths occur in Ireland every year, with nearly half of those happening in acute hospitals yet, according to the Irish Hospice Foundation (IHF), 76 per cent of people want to die at home. For many who lose capacity to make decisions due to any number of reasons, decisions around their end-of-life care are left to others.

"Preparing for your end-of-life care is as important as preparing for your life," explains Angela Edghill, advocacy manager at the IHF. "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."

The Assisted Decision-Making (Capacity) Act 2015 provides laws for Advance Healthcare Directives in Ireland, whereby an adult with capacity can make a legally binding statement called an Advance Healthcare Directive, or Living Will, and refuse any form of treatment, including life-sustaining treatment.

The Directive comes into effect only once that person loses capacity at some time in the future and is unable to make treatment decisions for themselves.

“The purpose of a Living Will is that the person making it still has a choice in their medical treatment if they are incapacitated,” explains Lynne Northride, associate at Hayes Solicitors. “To be clear, the person must have capacity at the time of signing a Living Will. For example, a Living Will can provide for the refusal of life-sustaining treatment; a Do Not Resuscitate clause [a DNR] or a choice of one course of treatment over another.”

Although the Act has not yet been commenced, and therefore not legally binding, they are generally referenced and adhered to. My mum died three years ago, and in many ways she had a “good” death. Finally persuading her doctors that treating her for yet another kidney infection was not in her best interests, she was at home, surrounded by familiar things, lying in the light of her window watching the first blooms of spring dance in the breeze. She died, cradled in my arms, my brother and Dad holding her hands.

In many ways though, 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 5½ years previously and spent the following years having absolutely no say, often in distress.

Older people want to talk about dying, but often their families won't discuss it

Immediately after her stroke, we were asked if she should be resuscitated if she stopped breathing. As a family we didn’t hesitate to say no; we knew she would have hated being left as she was.

But what if one of us had disagreed?

Sadly this can happen, as decisions over a parent or spouse’s death is left to family members who are already in a deep place of distress. Medical science is improving all the time with people living longer. While the medical profession has rightly focused on quantity of life, has enough focus been given to quality of life?

My mum had a DNR from the beginning but her heart never stopped beating. 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 with nurses, she was often very distressed with the battery of invasive and painful tests, scans and treatments, surrounded by unfamiliar people.

Last year, the International Journal for Quality in Health Care, revealed that up to 38 per cent of patients received non-beneficial treatment in end-of-life care. A Living Will is a response to advances in medical care and indefinite life-prolonging treatment, and can provide clarity around our own decisions about withdrawing life-prolonging treatment in certain circumstances.

In 2016 the IHF carried out a survey to gauge how people felt about dying. “We were hoping for 500 responses but 3,000 people returned answers. Our experience is that older people want to talk about dying, but often their families won’t discuss it,” explains Edghill.

“People are concerned about not having their wishes and preferences taken into account in decisions at the end of their lives if they cannot speak for themselves, and they want to be prepared and in control.”

The foundation's Think Ahead programme was established eight years ago to give people a detailed form in which they can lay out their wishes for their future care, and their legal, financial and funeral arrangements to share with family and medical staff as appropriate.

Last year saw a 76 per cent increase in the number of forms requested, and already this year nearly 500 hard copy forms have been requested, not including downloads from the website.

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

“The Think Ahead form covers key information about yourself, including a section on care preferences, including an Advanced Healthcare Directive, in the event you can’t speak for yourself,” says Edghill. “While the Act has yet to be commenced, they are taken into account, and you can designate a healthcare representative to ensure your wishes are conveyed.”

For obvious reasons, thinking about our own or our parent’s death, is an upsetting notion. However, it 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.

I hope my Living Will will never be used. But I know that if it is, the pressure to make difficult decisions will be made easier for my children who will have clarity and direction from me when I was capable of deciding for myself. 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.