The girl was 17 and she stood over her mother’s bed looking down into the rumpled bedclothes. The bloodied tissues were there again and her mum was curled up into a foetal position. It was obvious that the morphine was doing little to stop the bone cancer’s frightful march through her mother’s frail body.

 “Mouse, I can’t take it anymore,” she said in a ragged whisper. “Please kill me. PLEASE.”

 “You’re crazy. What are you talking about mum? It must be the morphine making you talk like that,” she said.

 It was a terrible situation for anyone to be in. A nightmare of the worst imagining. That teenage girl was me.

Versions of this story are more common than you might think. The only variables are age, illness and relationship. Many of our friends and neighbours are caring for terminally ill – pain ridden –  husbands, wives, parents and children with little support from the state or others. For some, the agony is too much to bear.

Choosing to die
In July 2009, the British conductor Sir Edward Downes and his wife Joan ended their lives at a Swiss assisted suicide clinic in July. Lady Downes, 74, had terminal cancer and the 85-year-old conductor was nearly blind and increasingly deaf. He had been forced to give up conducting and relied heavily on his wife’s assistance but he was not in any pain.

Announcing their death, the family released a statement that read, “After 54 happy years together, they decided to end their own lives rather than continue to struggle with serious health problems. They died peacefully, and under circumstances of their own choosing, with the help of the Swiss organisation, Dignitas, in Zurich.”

Although the case conjures images of Romeo and Juliet it raises many issues not just because it was assisted suicide – which is illegal and many feel is morally wrong – but because Sir Downes was not terminally ill. Did both of them have the right to choose death? Should it only have been an option for her because of her terminal illness?

 Suicide support groups say people generally think about ending their life because they see no way out. It is important to show those who feel suicidal that they have choices. Surely, Sir Downes had the option of a live-in carer or others way to get through his remaining years without his wife?

 These difficult questions need public debate. If, for example, you legally take away a person’s right to die then, as a society, shouldn’t you take responsibility for the dignity of their natural death?

Dignity in dying
How do we wish to die? In 2004, the first Irish survey on death and dying found that 67 per cent of those interviewed wanted to die at home, pain-free, conscious and surrounded by their loved ones. Of the 30,000 people who pass away in Ireland annually only one-third get their wish. The rest – 20,000 – die in hospitals.

Would you like to pass away alone on a trolley in A&E while a drunk vomits nearby? This is an extreme example but many dying people occupy hospital beds on busy wards and do not receive the care and respect they deserve in their final moments.

Do we have a right to choose dignity in our dying? The hospice movement, and society, seem to believe that we do but our government’s policies do little to respect that notion. 

 Hospice care, a health service focusing on dignity in dying, is generally only available to those who have cancer and it is largely funded by voluntary contributions, not government funding. Why?

 End of life care
According to an article in the Irish Times “the average Irish person’s lifetime expenditure on health services is about €300,000 and almost 25 per cent of that sum, €70,000, is spent in the last year of life. More than 40 per cent of that is spent in the final month. Spending on patients in that last year is estimated at 10-15 per cent of a country’s total health budget. In Ireland this would amount to €1.6-€2.4 billion of the total health budget of €16 billion. And yet the current budget for hospice care is only €75 million, less than 5 per cent of the entire budget.”

End of life care (palliative care) depends on your diagnosis and where you live, according to Eugene Murray, chief executive of the Irish Hospice Foundation. The group is working to change this situation by offering palliative care to patients with conditions other than cancer and to expand their network but, of course, this will take time and funding.

Back to reality
The reality is that there are thousands of people in Ireland who do not experience a dignified death because the resources, and will, are not there to provide it. Thousands more families are struggling to care for and support dying relatives and friends. They lack proper supports from government, the community and society. Under that kind of mental, physical and emotional strain it’s likely that – in their rare quiet moments – they ask themselves if anyone cares about their loved one’s dignity in dying and what lies ahead for them at the end of their days?

Useful links
Living with dying and dignity, Irish Times
http://www.irishtimes.com/newspaper/weekend/2008/1213/1229035646035.html

Dying for guidance, the Guardian
http://www.cardi.ie/node/2390

Suicide prevention groups
Samaritans jo@samaritans.org, www.samaritans.org, 1850 609090 (Republic of Ireland) or 08457 909090 (UK including Northern Ireland)

Aware Defeat Depression, www.aware.ie, info@aware.ie, 01 6617211
1890 303 302

Your local doctor, listed under ‘General Practitioners’ in the Golden Pages or visit www.icgp.ie. Go to, or contact, the Accident and Emergency Department of your nearest general hospital.

International care perspectives
UK green paper on funding care for older people, Guardian article
http://www.guardian.co.uk/society/2009/jul/14/green-paper-care-system-elderly

Holland’s care budget offered to older people instead of a place in a care home. Nearly 100,000 people have taken this option. Daily Mail report: http://www.seniorsworldchronicle.com/2009/07/uk-care-for-elderly-should-allow-us-all.html

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