There's more to dying than death

FEW ILLNESSES are as feared as Motor Neurone Disease (MND). The autoimmune condition, which attacks the central nervous system, is irreversible, incurable and nearly always fatal. The time from diagnosis to death takes an average of between two and five years.

It is the condition most obviously brought to mind when people consider the issue of assisted suicide.

In 2002 British woman Diane Pretty brought the reality of MND to a new level when she fought a long, public and ultimately unsuccessful battle to allow her husband assist her in taking her own life.

Pretty was only in her late 30s when she was diagnosed with the condition. As the disease progressed to the extent that she could not take her own life, she fought a battle through the British courts and eventually the European courts to allow her to have a right to assisted suicide.

The reality of living with MND was one thing. The reality of dying with it was what she dreaded most, in particular the possibility of choking to death.

When she eventually passed away in 2002 her husband said that what she had dreaded about her death had come to pass.

But the head of the hospice where she died said her death was “perfectly normal, natural and peaceful”.

The apparent contradiction informed the work of former nurse Sinéad O’Toole, who is now a lecturer at the School of Nursing, Midwifery and Health Systems in UCD.

O’Toole has interviewed the relatives of 21 people who died from MND for her PhD. She presented the results as a paper to the Irish Association of Palliative Care (IAPC) recently.

“There’s the same death experienced in two very different ways. Somebody is not telling the truth, but then I thought maybe the director of the hospice had seen so many truly horrific deaths while this was her husband’s first death.”

O’Toole found that, contrary to the received wisdom, just one of the 21 people whose relatives she interviewed appeared to have had a painful death.

At the IAPC conference she told the story of Noel, whose wife Alice knew somebody with MND before his wife was diagnosed. The disease is not well known to the public despite the devastating consequences associated with it.

In Alice’s case she began treatment straight away, though the doctors let both of them know that there was no cure for it.

The couple tried to live as normal a life as possible. Alice refused to accept that she was dying and resisted any support from the local hospice. Noel looked after her himself, even to the point of giving her augmented feeding over 12 hours at night from 7pm to 7am.

They managed even after she lost her ability to speak and she used a lightwriter instead.

Alice made her feelings known that she was frightened of dying. “I am afraid to go to bed some nights in case I don’t wake up,” Noel recalled her saying.

As her condition worsened Noel, who was not Irish, though his wife was, struggled to cope. At one stage he was told that owing to cutbacks there was nobody available to treat his wife.

It took a long time to get her admitted to hospital where she eventually slipped away. “At the end, I was so tired I could hardly keep my eyes open,” he recalled.

As she slipped away, a nurse asked: “Is she not gone?”

Noel related it as a peaceful death, though preceded by six days of terrible suffering as they waited for Alice to be admitted.

“If I was doing a quantitative piece of research, I would record that woman’s death as a peaceful death, but you can see when you piece together the story, there is a lot of suffering involved,” O’Toole said.

She said incidences like the one where the nurse asked is she gone yet made her feel ashamed to be associated with the profession of nursing, but she stressed that other incidents recalled by patients were much more positive and staff much more understanding.

O’Toole described the levels of care as “patchy” even though many of the testimonies relate to Celtic Tiger times, and though MND cannot be cured, the levels of care provided make a difference to the last years of life.

In another case Richard had a very painful death experience, with his wife at home.

“At about a quarter past 10 she sort of grabbed hold of me. And you could see in her eyes, she was screaming. And she was in pain, no matter what they gave her . . she was still in agony. And for about a quarter of an hour, she hung on to me, dug her nails in and hit me and screamed and I tried controlling her down.”

Testimonies like this are the exception rather than the rule, according to O’Toole.

She said the purpose of her study was not to minimise the reality of living with MND which is a terrible illness, but to offer some comfort for those who are either living with it or their relatives.

“The death is not the one that is portrayed in the media of choking and of suffering,” she said, “and this is supported by the other medical literature I have read.”

Relatives of people with Motor Neurone Disease can contact Sinéad O’Toole at UCD sinead.otoole@ucd.ie