“THE FEAR OF being alone. The fear of the unknown.”
Almost 2,600 people across Ireland have shared their personal views on what they feel is needed for a good death and the fears they have about serious illness and end of life, through the Have Your Say survey by the Irish Hospice Foundation.
Unsurprisingly, the results of the survey show that most people want to be pain-free, to be treated with and to die with dignity, to feel comfortable and cared for, ideally at home.
The biggest worry for people centres around the person’s family, both from the perspective of concern for those who are left behind and how they will cope with loss, as well as concern regarding how the person who is dying will feel as they leave their family.
“Not having my opinions and wishes adhered to. Worried how my family will cope. Extremely worried about what will happen to my disabled adult child. Concerned that there are not enough supports to help in times of bereavement,” one respondent said.
Another said: ”Family and leaving them. I would talk about things with them and let them know my wishes. I have always held my godsons as I have no kids of my own that I want to be cremated and my ashes turned into jewellery for them to wear so they could keep me close.”
The fear of leaving family is closely followed by worries about dying in pain and dying alone.
In just a few words one respondent listed out a number of uncertainties they had about the end of their life.
Pain. Poverty. Homelessness. Being utterly alone. Being helpless. I want to know what to do…
“Dying alone. Like my mother did,” another said.
“Leaving my family behind. Also, that death might be very painful. I don’t worry about being bereaved as it always has to be faced. You just have to cope with that,” one person said.
Earlier this year, the IHF spoke about the need to develop a national strategy in the area of bereavement, palliative and end of life care.
In their pre-Budget submission in July, the foundation said that bereavement was “sadly” forgotten in the recently published Sláintecare report, which set out a 10-year plan to reform healthcare in Ireland.
The foundation said grief is “the common ground on which we all stand” and noted that in the next 10 years:
The document continued: “If current trends continue, 5% of grieving people will require specialist mental health services or psychological intervention.
Given this evidence, it is essential that the healthcare system meets the needs of people facing death and bereavement and ensures that everyone gets equal access to good care.
Before death
Respondents also discussed the concerns that come with living with an advanced illness and approaching the end of life.
Similar to the concerns of dying, pain and dignity were the most commonly discussed topics.
What matters most to people, as they considered living with an advanced illness, is access to adequate pain relief, ensuring that pain is well controlled and ideally that they live and die pain-free, where possible.
Many described their fear of pain and the perceived impact it may have on both themselves and their families.
“I often think about how awful it would be to be in a lot of pain, especially if there are no people around who care,” one person said.
Being treated with and maintaining dignity was of significant importance to people, with many voicing concerns that their independence and voice might be taken away from them.
To be treated as an intelligent adult, to have a say in my care, to talk about it and make decisions about it and to be allowed to die with dignity.
Surprisingly, the issue of euthanasia was discussed by only a handful of participants.
Euthanasia was mentioned just 8 times of the 2517 responses in the section about dignity.
“With a history of Alzheimer’s in my family, I am hoping that euthanasia will be available in Ireland if I am unlucky with my genes,” one person said.
“Having control over my own mortality. I want to leave this life when I choose. I want the option of euthanasia,” another said.
Ireland’s first charter on death and bereavement is being launched today at the Forum on End of Life conference organised by the IHF in Dublin Castle. The charter is based on the results of the Have Your Say survey.
Speaking ahead of the Forum, Chair of the National Council of the Forum on End of Life in Ireland, Justice Catherine McGuinness said:
As citizens and as a society we need to break the taboo that surrounds death.
We need to support each other to develop a greater sense of personal responsibility and put effective systems in place to enable people to act responsibly.
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