How Irish people want to die

Ireland supposedly ‘does death well’. But a new survey suggests that it’s a modern taboo – and that end-of-life care in this country is far from perfect

Family time: three out of every four people surveyed about their end-of-life wishes said they would like to die at home, surrounded by loved ones. Photograph: Sebastien Bozon/AFP/Getty

Family time: three out of every four people surveyed about their end-of-life wishes said they would like to die at home, surrounded by loved ones. Photograph: Sebastien Bozon/AFP/Getty

 

Ask anyone about death and the Irish and they will say that we do it well. So well that, assuming death arrives after a full life, some who like a good, uncontrived celebration say they prefer funerals to weddings.

The tradition of the wake is flourishing. We may not cover the mirrors or stop the clocks any more, but the traditional removal to church on eve of burial is vanishing in favour of keeping the person at home for a last night, laid out in an open coffin or on a bed, surrounded by family, friends and a steady flow of sympathisers often queuing out of the door and down the street.

The result is that, unlike many other cultures, we have little fear of the dead.

It’s the transition that troubles us. A common experience across surveys here and elsewhere is that we don’t mind talking about death; we would prefer just not to talk about the specifics of our own deaths.

Yet we are the luckiest people in history. In 1926 the life expectancy for Irish men and women was 57 years. Now men can expect to live to nearly 80, and women a few more years than that (although women are regressing a little, according to recent reports).

 

A happy death?

But the inevitability of death remains. Four hundred thousand people have already died in Ireland since the start of the century, an average of 80 a day. Yet how much do we know of the experience of dying? How many achieve that seemingly oxymoronic end ardently prayed for by older generations: a happy death?

In their darkest hour, for example, do they have night nurses radiating competence and reassurance of a kind that allows the dying person and loved ones to focus on the sacred journey instead of fearing the physical process ?

And do they know that the nurses who bring those incomparable blessings are funded entirely by charity?

This is one of the startling discoveries in a conversation with the chief executive of the Irish Hospice Foundation (IHF), Sharon Foley, about the end-of-life process in a country that famously regards all life as sacred.

It’s a crucial point, as, in a new IHF survey, three out of every four people surveyed about their end-of-life wishes said they would like to die at home. Although the figure is well up on 10 years ago, the reality remains that only four in 10 do so.

The wish comes ringed with conditions, of course. “Some might want to be able to die at home with an A&E outside the door,” Foley says, jokingly.

It’s a process in some ways akin to childbirth: mothers who are zealously anti-pain control often become the opposite in the actual experience. Doctors say something similar about people who are dying: a patient’s fervent wish to die at home may fade when there is any nervousness about controlling complex symptoms.

A pain-free death is second only to being surrounded by loved ones on people’s end-of-life wish list. A long way back come privacy and dignity, familiar surroundings and a calm and peaceful atmosphere.

So although it might be impractical, it’s unsurprising that more than four in 10 who want to die at home also want professional medical support on standby in emergencies; a third want trained carers nearby. Oddly, “feeling in control of your environment and what support you get” – which could encapsulate all of the above – comes a long way down respondents’ list of priorities. Only two in 10 made that their most important concern.

Doesn’t it all suggest that, ultimately, people are less concerned about the building they happen to be in when the time comes than about having loved ones around them and excellent pain management?

“It isn’t one single concept,” says Foley. “By and large a good death is being surrounded by loved ones, being pain-free and then different things. Respect, privacy and dignity I think summarise it. Not being in an eight-bedded ward with the TV on and no control over who’s going in and out.”

It’s not a huge ask. In an ideal world nobody would die in the busy ward of an acute hospital. Although it is unavoidable in many cases, a quarter of those who die in hospital could have died at home, according to a national audit in 2010.

Meanwhile, about 2,500 people are denied access to the hospice in-patient care they need, according to a 2013 report, despite stated national policy to develop hospice services nationwide.

But the picture is not quite as bleak as perceptions suggest. Although only six in 100 perceive that care for dying or terminally ill people in Ireland is “excellent”, this figure leaped to 45 per cent when they rated the care given to their loved ones. It soared to seven in 10 for those whose loved ones died in a hospice.

The fact that financial considerations do not feature among people’s major concerns points to another lucky circumstance for this Irish generation. In a Californian survey, for example, the most important factor was ensuring that their families were not burdened financially by their care or by tough decisions about their care. Singaporeans also put financial issues in their top three end-of-life priorities.

 

Practical plan

The fact that the Irish are happy enough to talk about death but not so happy to translate that into a practical plan is not unusual. In the UK only 5 per cent of respondents had a living will or advance care plan, according to a British Social Attitudes survey. In Australia, although 82 per cent saw the virtue of having plans in place should anything unfortunate befall them, considerably fewer actually had a plan.

Seven in 10 people in the UK said they felt comfortable talking about death, but they felt less comfortable discussing the specifics of death. On another even more challenging issue, perhaps, only one in five Singaporeans said they would be comfortable even talking to someone who is terminally ill, although more than a third of them would be comfortable talking about their own death. An Irish response to that would be interesting.

The question of assisted suicide was not addressed in the IHF survey. “The position of assisted suicide is that it is illegal in Ireland,” says Foley, adding that her priorities lie in ensuring that people can access the level of care that they require.

Yet the question seems increasingly pertinent in a radically changed religious landscape and high-profile court cases producing nuanced judgments. Religious, cultural or spiritual needs were ranked as most important by less than a third of those surveyed, or seventh of 11 in the listed factors. Or maybe the assumption remains among Irish people that such needs will be met.

Hospice care puts such needs at the heart of its ethos, says Sharon Foley. Given a magic wand, she would ensure that in-patient hospice units would cover the northwest and the midlands, which have none. The results speak for themselves. In the midwest hospice, she says, only seven in 100 of the patients they see die in an acute hospital. Everywhere else it’s 30 in 100.

There is much more to be done in a country that purports to value life from conception to grave.

When asked this week by Stephen Nolan, on BBC Northern Ireland’s The Nolan Show, Gay Byrne said he would consider taking his own life if he found himself facing lying a long time in great pain. “Yes,” he said, “I think there is a great deal of rationality behind that and a choice people can make.” The full survey is at hospicefoundation.ie

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