Alison O'Connor: It's time for a dignified debate about assisted dying, before it’s too late

Charlie Bird and Vicky Phelan are talking about it. Let's take the lead from them, and discuss death with honesty and kindness
Alison O'Connor: It's time for a dignified debate about assisted dying, before it’s too late

Vicky Phelan's appearance with Ryan Tubridy on 'The Late Late Show' moved us all, and we should also heed the respectful and compassionate tweet exchange between Vicky and former RTÉ journalist Charlie Bird. 

One of the best-known people in Ireland reaching out on social media to another, even better known person, on the subject of impending death does seems very 2021 somehow.

As we struggle with a seemingly never-ending pandemic, thoughts of our mortality are more in our face than ever. A death from Covid in a hospital intensive care unit — as we’ve heard it described — is not something to be wished for anyone.

But if there is something we can take from this difficult time which would be of benefit to us, it would be more open conversations about the actuality of dying and death. After she appeared on the The Late Late Show, the much loved former RTÉ broadcaster Charlie Bird tweeted he was so sorry he had missed Vicky Phelan on the chat show the previous night. 

“She is an amazing woman with great courage. We should all learn from her. She is my hero,” he said, echoing the thoughts of so many in the country.

Then on Tuesday, Bird, who was recently diagnosed with motor neurone disease, tweeted again: “I would love to talk to one of my heroes Vicky Phelan… what she said this weekend was most interesting.”

Two days beforehand, Phelan had been on the front page of The Sunday Times, where she appealed to politicians to change the law to allow terminally ill people, in situations similar to her own, to be medically assisted to die if they wish.

The cervical cancer campaigner, who has ceased chemotherapy and begun palliative care treatment, was speaking as the newspaper launched a campaign in support of voluntary assisted death.
“Nobody’s allowed to give you a magic injection to make you go any faster and I don’t want to be lingering for my kids,” she said.

Since revealing his own diagnosis in recent months, Bird, 72, has said it is very hard to cope with and he has no idea what is coming. The broadcaster said he absolutely did not want to end up in a wheelchair.

In response to his tweet, Phelan came back and said “Ahhhh Charlie, sure I would only be delighted to chat to you. We have a lot in common… unfortunately!”

'I would love to talk to one of my heroes Vicky Phelan…' The gentle twitter exchange between Charlie Bird and Vicky Phelan sets the tone for discussion about the Dying with Dignity Bill. Picture: Sasko Lazarov
'I would love to talk to one of my heroes Vicky Phelan…' The gentle twitter exchange between Charlie Bird and Vicky Phelan sets the tone for discussion about the Dying with Dignity Bill. Picture: Sasko Lazarov

There is surely nothing lonelier than a terminal diagnosis. In a horrible situation for both, it’s warming to think of them getting comfort from each other and discussing issues that only someone in their respective situations could truly understand.

Death, as they say, comes to each and every one of us; a conversation about it is relevant at any time. The subject has had a higher profile as a result of People Before Profit TD Gino Kenny tabling the Dying with Dignity Bill last year. Now the Oireachtas justice committee has recommended that a special committee be established to examine the topic of assisted dying

In the cases of people like Phelan and Bird, it seems somehow “easy” to understand a desire for a change in the law. Phelan’s treatment for cervical cancer has been utterly gruelling over the last few years. Bird has already said that as well as his voice, his swallow has been affected.

Yet the minute you begin delving into people being allowed to decide for themselves when they shuffle off this mortal coil, it is guaranteed to open up a minefield of hugely polarising arguments. Many worry such legislation could end up with advantage being taken of vulnerable people.

Currently a number of countries allow assisted death, including Belgium, the Netherlands, and Switzerland. Canada introduced assisted dying in 2016. According to that country’s 2020 annual report on medical assistance in dying, the numbers from the previous year saw a growth rate of over 34%. In 2017 there were 2,838 cases compared to 7,595 in 2020, representing 2.5% of all deaths.

Wisdom we could all learn from

Palliative care specialist Kathryn Mannix offers wisdom about the end of life that ought to be considered by us all — not least during the current debate on the Dying with Dignity Bill. 
Palliative care specialist Kathryn Mannix offers wisdom about the end of life that ought to be considered by us all — not least during the current debate on the Dying with Dignity Bill. 

A couple of years ago I read an excellent book on all of this by palliative care specialist Dr Kathryn Mannix. With the End in Mind: Dying, Death, and Wisdom in an Age of Denial brings you head-on into this topic, that so many of us try to avoid, in a forthright but compassionate manner.

The death rate, as Mannix points out, remains at 100%. But so many families who have a loved one approaching death may not have been told about what to expect. Often people only have experience of death from what they’ve seen on television or the Hollywood versions. So many of us do not even like the use of the word dying.

Being au fait with all of this can surely only help those observing the extinguishing of a life, and indeed the person whose life is being extinguished. Without the relevant information of what dying is like — from the final weeks to the final hours — it’s impossible to make a proper plan.

Speaking about what is often described as a “peaceful” death, Mannix says it is a process, just like giving birth, and that we should be reclaiming death.

But so much of appreciating that is understanding it — even being told there is a physical reason for the much-feared “death rattle” — where those sitting around the bed of a dying person can often fear is a sign of distress in their loved one. Again, what many people may not know, says Mannix, is that you are basically in a state of deep unconsciousness, where you don’t even feel the physical need to clear your throat. Breathing through the mucus or saliva can make a funny, rattling sound. The person is completely safe, she explains, “doing ordinary dying”. 

During one of these phases of slower breathing, there will be gaps and then there is a breath out that does not have a last breath in after it.

Vicky Phelan, as we know, has suffered serious and prolonged pain. She is clearly and understandably anxious she will not face that in her dying. But for all the cases where it may seem easier to decide assisted dying would be understandable, there are just as many where you worry advantage could be taken of some people who are vulnerable for a variety of reasons.

I also think back to the words of a palliative care consultant I accompanied on rounds in Our Lady’s Hospice in Harold’s Cross a few years ago, who explained there are lots of different types of pain. Particularly in the case of cancer, it can be complex. But she raised the issue of what she called “total pain”, where a patient is not just in physical but emotional pain. She mentioned a patient who had just died, who had what she described as a complex family situation. 

“He was the glue that held the family together and when he veered towards that subject, he would say, ‘My pain is very bad’.”

There is nothing straightforward about any of this but it is definitely a conversation worth having.

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