THERE IS an urgent need to regulate and set standards in the funeral industry, according to a report out today.
The report from the Forum on End of Life in Ireland says this includes a need to set standards for use of body bags, embalming and mortuary practices and standards for the treatment of remains after death.
After hosting several meetings around the country and receiving more than 160 submissions, the forum chaired by broadcaster Marian Finucane says a national end-of-life strategy should also be developed. It also advocates better education and training for those working with the dying and those who are bereaved and says community hospitals should be resourced to provide more palliative and end-of-life accommodation and services closer to people’s homes.
On the cost of death and dying it says one of the most unfair costs identified by contributors is the high cost of car parking imposed on the families of people dying in acute hospitals.
Furthermore, in relation to funeral costs it says the Money Advice and Budgeting Service (Mabs) in its submission said the cost of a funeral can place a considerable burden on low-income families. “In Mabs’s experience there is a risk that in these circumstances family members may go to illegal money lenders to borrow money for a funeral.”
The report says a constant theme during meetings was the contrast between people’s preferred place of death – at home for the majority – and their actual place of death, usually in a hospital or other institutional setting.
“There are different reasons for this, including the availability and affordability of community and palliative homecare services. Pending the introduction of the statutory entitlement to palliative care, it is recommended that the action plan (for implementing the report) includes provision to campaign for a medical card for everyone with an advanced incurable illness and/or for a palliative homecare package, or its monetary equivalent, for those being cared for at home”.
In its submission the Irish Association of Funeral Directors agreed standards should be set for the industry. “There are some true hovels that are put forward as funeral homes. Some embalming facilities have to be seen to be believed in their awfulness and would be shut down immediately if they were inspected by the HSA,” it said.
The report says there have been instances of funeral directors putting a child’s remains in the boot of a car, arriving with coffins that are too small and “when a child presents with HIV it is impossible to find an undertaker”.
Meanwhile, Rainbows Ireland, a peer support programme to assist children, adolescents and adults who are grieving a death or separation, said in its submission that more and more children and young people are experiencing traumatic grief and loss particularly associated with murder and suicide in Ireland today. “It is our strong experience on the ground that there is definitely not sufficient professional services to meet these needs around the country,” it said.
The report also calls for nationally agreed procedures and guidelines for Do Not Resuscitate (DNR) orders, as well as advanced care directives.
On dying: affected have their say "
I have worked with dying patients in the States and in Ireland, North and South . . . the one common factor is that nobody wishes to die alone. Yet the reality is that even in hospitals, some people still die alone." - Anonymous contributor
"Just before we were leaving, we went to look for the nurse again. I asked what should we do with my mother's belongings and she told me to take them with us. They gave me a black plastic bag. I cannot explain how I felt about that gesture.
"I wish now I had said that we would come back with her case . . . we put all her belongings into that black bag and carried it out of the hospital.
"Her clothes and all her little mementos and treasures so dear to her in a black plastic bag similar to the ones they used on the wards for rubbish. I still get upset at the indignity of it." - Bereaved daughter
"Both our children died in hospital . . . when it came time for us to take our children home for the last time, the staff lined the corridors to say their final farewell. It was so touching and something we will never forget." - Bereaved parents
"He was told by the consultant: 'You're going to die. There's nothing we can do and we're sending you home,' and walked out. And, I remember at the time I was so so angry about it." - Bereaved partner
"I cannot recall receiving advice or guidance on a single occasion in relation to breaking sad news or communicating with patients or their parents." - Retired consultant paediatric oncologist