'Statistically, we're all living longer these days, but we haven't necessarily done a great deal about it," says former Supreme Court judge, Mrs Justice Catherine McGuinness. As chairwoman of the National Council of the Forum on the End of Life, a body that champions death and dying issues, she's determined that we all "get a good end".
McGuinness will give the keynote address at a conference in Dublin on Thursday addressing issues relating to dying and death, which has been organised by the Irish Hospice Foundation.
End-of-life matters
Launched by President McAleese in 2009, the aim of the forum was to identify what matters most at the end of life. It engaged with the public and organisations to find out what people in Ireland believed about dying, death and bereavement.
With some 48 per cent of people who die in this State doing so in hospital, McGuinness feels the culture of hospitals needs to change to better reflect the needs of the dying and their families.
"People go into hospital hoping to be cured so the whole thing is kind of geared towards that," she says. While more hospitals are adopting a palliative care approach, and she says her family experienced "proper palliative care" when her husband died some years ago, "not all of my friends have had the same experience", she says.
Funeral industry
Better regulation of the funeral industry is another hot topic. "In particular, there is no law at all covering cremation. There is no control over it at all.
“There are only two crematoria in Dublin and it’s terribly time-controlled. You are rushing from the church because all of the funeral directors know there is only a quarter of an hour for your bit. If there is increasing demand for cremation, we need to set about providing for that.”
A person’s wishes on whether they want their life prolonged through resuscitation or other means is an issue the council has made gradual progress on. An advance care directive is a written expression of what a person does or doesn’t want if he or she becomes ill and can’t communicate or make decisions.
“We understand that provision for that is going to be put in to the Assisted Decision Making (Capacity) Bill 2013 either at committee stage or report stage – but it will be included.”
The council is also calling for reform to the way the pronouncement of death takes place. Current practice is to wait for a doctor to do it.
“At the moment, a nurse is not empowered to say a person is dead, they have to call a doctor and sometimes where a doctor in a hospital is busy, you can be hanging around for hours.”
Thursday’s conference will also feature workshops and training programmes, one of which will focus on training health and social care professionals in caring for lesbian, gay and bisexual patients.
“Research tells us that lesbian, gay, bisexual and transgender patients still face additional challenges when accessing healthcare services,” says Dr Paul D’Alton of the department of psycho-oncology at UCD and St Vincent’s University Hospital. “This is particularly true in oncology and palliative care where one’s life is under threat.”
He says one of the key challenges is the assumption of heterosexuality. "Don't assume that all patients are heterosexual. That's really important in terms of clinical interviewing and asking questions such as, 'Do you have a husband or wife?'"
Inclusive practice
The training, already rolled out to 200 staff in St Vincent's and Beaumont hospitals, is aimed at helping healthcare professionals to make their practice as inclusive of lesbian, gay, bisexual and transgender people as possible.
Another workshop, ‘Planning for the future when you have dementia’, will address healthcare, legal and financial planning.
“It’s about taking the stigma out of dementia and saying this is part of the life cycle for a significant number of people,” says Marie Lynch of the Irish Hospice Foundation.
Discussing joint accounts and talking to your bank about your financial plans – Lynch recommends that all of this is sorted out and financial information is in one place.
She will also address setting up enduring power of attorney. “That means nominating a person you’d like to manage your legal, financial and personal care decisions if you are not legally capable.”
People can also set out their care preferences – whether to stay at home or if they had to move, to where that should be.
“Setting out these things enables us to have quality of life and ease of mind.”
Length of Days, Quality of Life, a conference of the Forum on End of Life in Ireland, takes place in Dublin Castle on Thursday October 24th.
See hospicefoundation.ie.
