23 August 2024
Talking about death won’t kill you – and sharing your end-of-life wishes is a gift
As published in Irish Independent 13th August 2024
Talking about death doesn’t make you die, any more than talking about sex makes you pregnant. But that doesn’t make it any less daunting the first time you talk with someone you love about death and dying. In 2019 I listened to the palliative care consultant and author Kathryn Mannix speak about how frequently she would ask adult children in an emergency about the medical wishes of an elderly parent – only to discover the issue had never been discussed. I listened uncomfortably, aware that I had not had these conversations with my parents, Margaret and Fionnbar, who were in their late 80s.
I reluctantly took myself off the next day to have “the conversation” with my parents. I was very nervous about talking to them about their deaths. I broached it by telling them about what Kathryn Mannix had said, and asked them about what their concerns were as they faced the end of their lives. I may have been reluctant to have “the conversation” but there was no such reticence from my parents, who responded to my question without any qualms. They had both clearly reflected on their own deaths, but hadn’t in fact discussed it with each other, or anyone else, until I brought it up. I had the impression that they were relieved, in many ways, that someone had finally brought up the elephant in the room.
We talked at length about what their hopes, wishes and worries were. I learnt so much from that conversation.
Four weeks later Fionnbar went on his own accord to Fanagans Funeral Directors in Donnybrook and, as he put it, “booked in our funerals”, including the wicker casket which we had discovered my mother wanted.
A few weeks later Margaret died unexpectedly. On Christmas Eve we gathered at her funeral with the comfort of knowing it was just as she wanted. That clarity of knowing what Margaret wanted, both as she was dying and at her funeral, took a lot of pressure off my father and her six children at a very tough time. Making your end-of-life wishes known is a gift to those that who you leave behind. Thinking ahead and communicating your wishes means that those you love won’t have to make difficult decisions, at an enormously fraught time. Your being clear about what you want avoids any confusion or second guessing as to your wishes which can exacerbate what is a very stressful time for families.
Orla Keegan, Head of Bereavement in Irish Hospice Foundation (IHF), introduced me to the concept of “scaffolding conversations”: once the subjects of dying and death have been broached, we start to build a framework that allows for further conversations. It is no longer taboo to raise the topic. This was my experience with my father.
Two years after Margaret died, as Fionnbar was dying, he and I were able to talk about his impending death, rather than shy away from it. I am not saying the conversations were easy. They weren’t. But not having them would have meant hiding information from my very intelligent and perceptive father, or leaving him to contemplate his death without anyone to share his thoughts with. Research shows many people feel lonely as they face the end of life; how much lonelier are people when they are not able to talk about their feelings with someone.
The recent National End of Life Survey got feedback from 4,570 people in Ireland who had a family member or friend who died between September and December 2022. One of the themes that arose in the findings was communication, with many respondents reporting that they learnt too late that their loved ones were dying – and so were unable to have conversations they wanted to have. Kathryn Mannix observes, “nobody ever says ‘I wished we’d never talked about dying’. I’ve lost count of the people who say, ‘I wished we’d talked more’.”
Conversation is important but so is action. Irish Hospice Foundation has been advocating for people to “Think Ahead” and has an excellent information pack available for people to record their wishes. We distribute tens of thousands of these packs a year and we talk with many more about thinking about their death. But the number of people who haven’t recorded their wishes is very high. Only six per cent of Irish people have executed an Enduring Power of Attorney, to appoint a person to look after their financial or personal affairs in the event they no longer have the mental capacity to do so. Only 4% of Irish people have made an Advance Healthcare Directive about their wishes for healthcare and medical treatment. 30% of Irish people have no will.
I had attended lots of sessions on “Think Ahead” and had advocated for people to take these actions. But, for myself, I kept long-fingering it: there was plenty of time to get around to it. That assumption was shattered when my 66-year-old brother, Frank, dropped dead suddenly.
I finally grasped the nettle. I thought it would be really tough emotionally. In reality, I found it quite life affirming. Updating my will, I took pleasure in considering whose lives I might be able to change for the better if I were to die in the near future and leave them a legacy. Making my Advanced Care Directive and Enduring Power of Attorney, I found it tremendously helpful to have buddies accompanying me – my brother Richard completed the same paperwork as I did, and a good friend, Marie, supported us both. Having completed everything, we and our witnesses were still happily embedded in life, and celebrated with a good glass of wine.
Jean Callanan is Chair of Irish Hospice Foundation
