Those facing imminent death are also often left without a choice of place to die because of the lack of publicly funded care services to enable them opt to spend their final days at home, a hospice or a hospital with specialist palliative care.
These are just some of the findings from an extensive consultation process undertaken by the Irish Hospice Foundation (IHF) involving a year-long series of workshops and meetings with health professionals, legal experts, care services and members of the public.
The IHF today publishes the findings in a 380-page End of Life Report accompanied by a draft action plan which highlights the main issues it suggests need to be addressed.
Members of the public are invited to comment on both documents until Friday, June 18. The draft and any new submissions will then be referred to a new National Council of the Forum on End of Life, which will work under the chairmanship of Supreme Court judge Mrs Justice Catherine McGuinness to produce a final action plan.
The IHF estimates 300,000 people are directly affected by bereavement each year in Ireland, yet death and dying are issues not traditionally discussed openly.
IHF spokesman Paul Murray said the aim of the forum was to get people talking and have their views reflected in national policy.
“We want to change the culture of death and dying. We want to make sure that it is everybody’s business, not just the medical profession’s,” he said.
Issues covered in the report range from the physical settings where people die and the communication or lack of it between doctors, patients and family members to the financial hardships caused by the high cost of funerals and the difficulties that arise when people die without making a will.
But some of the trickiest subjects raised were around the status of DNRs or do not resuscitate orders, and advance care directives, which are written statements by patients detailing the medical treatments and interventions they want and don’t want when they are dying and are no longer able to express their views.
“Neither of these currently has any legal standing and one of the big problems is that there are no national protocols so you have different practices in different settings,” Mr Murray said.
“Sometimes a DNR is taken to mean ‘do not treat’ and ‘do not care for’. There are also differences of opinion about what constitutes basic care and what constitutes treatment... It’s a very difficult area but we want an open discussion.”
The report and draft action plan will be available at www.endoflife.ie from Monday and comments can be posted online. Copies can also be had by writing to Linda Collins, The Forum on End of Life, Morrison Chambers, 32 Nassau Street, Dublin.