Former Supreme Court judge Catherine McGuinness is leading a push for change in how we plan for death, writes JOANNE HUNT
DEATH, A BIT of a worry isn’t it? For Mrs Justice Catherine McGuinness, it’s a subject she’s been around since childhood.
“My father was a clergyman and he did kind of nearly all the looking after for the relatives of people who were dying,” she says of her Belfast upbringing.
“It was kind of a constant presence in our house that we were looking after funerals.”
Now, as chair of the national council of the Forum on the End of Life, a body that champions dying and death issues, the former Supreme Court judge and her colleagues are determined to ensure we all “get a good end”.
Launched by President Mary McAleese in 2009, the aim of the forum was to identify what matters most at the end of life. An engagement with the public and organisations yielded 167 written submissions.
With McGuinness at the helm, the forum’s national council is now working to bring many of the ideas to fruition. First up is regulation of the funeral industry.
“There is the issue of cost to begin with,” says McGuinness, “and there is no licensing system or regulation at all.”
At the moment anyone can enter the industry that buries or cremates the 30,000 people who die in Ireland every year. With the average cost of a funeral €4,500, rising to €5,000 in the greater Dublin area, excluding a plot, it’s a profitable business.
“Also, people are being embalmed much more than they ever used to be for some reason,” says McGuinness. “In Ireland, people are buried quite quickly, so it probably isn’t all necessary.”
“It’s hard to understand quite why this has happened and it may well be that you make a lot of money from it if you are a funeral director. It’s a more profitable exercise than just burying them.”
McGuinness says in death and dying there is also a need to cater better for those of different faiths or no faith.
“There are not enough secular spaces or non-denominational spaces or even spaces for people who are vaguely Christian but do not belong to a particular church,” she says.
Hospitals, too, can pose issues, she notes. “There are chapels but they are all very religiously orientated. Another area we are looking at is hospital mortuaries. Some of them are really dreadful.”
The architecture of the spaces is something on which council member and architect Sean O’Laoire is bringing his expertise to bear, she says.
But before death comes dying, and with some 48 per cent of people who die in this country doing so in hospital, McGuinness feels the culture in hospitals hampers them from better dealing with the passing.
“Hospitals are places where they want to cure you, and if you die, it’s a kind of a failure on their part,” she says.
She welcomes the move by some hospitals to become “hospice-friendly”, particularly as palliative care becomes more widespread.
“Some hospital doctors specialise in palliative care and they can be excellent but others may not be – the sort of younger doctors that an awful lot of people see who are probably desperately over-worked but still, more training on how to deal with a patient holistically, as a person who requires dignity rather than just somebody who has something physical wrong with them.”
In fact, a workshop dedicated to the medicalisation of dying is to be chaired by the one-time near-chief executive of the HSE, Prof Aidan Halligan, at the council’s annual forum on October 12th.
A person’s wishes on whether they want their life prolonged is another area the council is looking at. An advance care directive is a written expression of what a person does and doesn’t want if he or she becomes ill and can’t communicate or make decisions.
Through her work with the Law Reform Commission, McGuinness is familiar with the legal quagmire surrounding them.
A framework proposed by the commission to cover advance care directives was to be included in the Mental Capacity Bill. With the previous government failing to move on the Bill, McGuinness is hopeful it will be addressed in the current Dáil term.
Taoiseach Enda Kenny is set to launch the forum’s Think Ahead project, a system to guide people in recording their preferences in the event of emergency, serious illness or death at the forthcoming conference.
The Think Ahead project, says McGuinness, will enable people to record wishes such as “I don’t want my life unnecessarily prolonged, maybe I don’t want to be fed artificially, or if possible, I’d rather die at home”.
The council will make information about it available through pharmacies and the Citizens Information Board.
The council is also calling for reform of the way the pronouncement and subsequent certification and registration of death takes place in this country.
In the case of pronouncing a death, current practice is to wait for a doctor to do it, though nurses and paramedics are just as able.
With regard to hospital deaths, McGuinness says: “Some relatives who spoke to us said they found it quite alarming and hurtful that quite often, with a doctor delayed in coming, they knew their relative was dead, the nurse knew they were dead, but they were told they couldn’t say their relative was dead until the doctor came.”
McGuinness and her council colleagues have their hands full but it’s work that is clearly important to her. “It’s just about dealing with the whole thing with dignity,” she says.
“We’re hoping that people would have a good end, in dignity, in as little discomfort as possible, and with privacy, rather than being on a trolley in the A&E.”
For more information, see endoflife.ie
