Scottish woman talks about euthanasia: 'We should not be made to suffer like this'

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Euthanasia: 'We should not be made to suffer like this'

Last Updated: 12:01am GMT 25/02/2008Page 1 of 3

As Luxembourg joins Holland and Belgium in legalising euthanasia, Val
McKay, terminally ill with multiple sclerosis, tells Jocasta Shakespeare why
the law in Britain should change

Above Val McKay's bed hangs a ceramic Death's Head, his cowled skull
grinning above a sign that spells ''Welcome".

PHOTO:
Val McKay: 'I'm trapped, I've left it too late. The pain is
getting worse'


Two scythe-wielding skeletons are stencilled on the mauve walls. She
smiles: "People think I'm morbid, but Death is welcome here; I'm not afraid.
He hasn't been too helpful yet, though."

It's not death Val is scared of but the process of dying. Her home in
a quiet close of bungalows in Perth, Scotland, has become a prison. Four
years ago, at the age of 46, she was diagnosed with multiple sclerosis, and
since then her body has been shutting down, numbing from the feet up.

She is now unable to move her legs, right arm or lower body and is
bed-ridden for 22 hours a day. She can get into a wheelchair only with the
help of one of her carers, using a hoist.

Val's skin is smooth and line-free and her alert brown eyes express
both humour and pain. Doctors say she may have just another six months to
live. She thinks that is too long. ''This is torture. If I was Spooky my
cat, I'd have been put down long ago."

At the moment, Val can still use her hands to control the flat-screen
television on the wall opposite her bed, to make phone calls and to smoke (a
20-a-day habit) but soon she will be deprived of even these simple
pleasures. "My left arm is going," she says.

For now, she still has the power of speech and she intends to use it.
"I'll say what I want to say, I always have done. I want help to die. People
like me should not be made to suffer like this. I'm angry that I'm not
allowed help to die peacefully in my own home. I want to educate people
about death. There should be a choice in how to die."

Today, she wears rosy lipstick and her fingernails are manicured and
polished with peach-coloured varnish. "I'm dying but I'm still vain," she
jokes. She is also brave and defiant.

Most people who seek an assisted death dare not speak openly about it
for fear of offending their families or of retribution from "pro-Life" and
religious groups. But Val is determined to challenge the law and the tiny
"moral" minority who support it. "I want to speak out for those like me, or
who come after me. The law is cruel and it is wrong."

She has considered suicide and once hoarded sleeping pills, but she
realised she would be found by her carers and taken to hospital. "I didn't
really know how to do it and thought I might bodge the job and end up even
worse off," she says.

But she fears the "horrific natural death" that lies in store for her.
She is likely to lose the ability to communicate and the swallowing reflex;
she will then have to be "peg fed" by a tube through her stomach and, as her
airways close down, she may choke to death. Her brain will be the last organ
affected.

She shows me a photograph of herself, taken at her 40th birthday
party - a slim, smiling woman wearing a white dress and hoop earrings,
cutting a cake. "We had two cakes, so many people came!" Her eyes light up
with joy at the memory.

"I was normal then. It was a great night and I'm glad I did it. I miss
those times." Separated from her husband, she had a boyfriend, David, a busy
social life and was working as an accountant in a retail firm. "I loved my
job, I loved my friends and I was very fond of David, but I gave them all
up. I just couldn't bear them to see me like this."

Her son Robert, from a previous marriage, is 26 years old and her
happiest memory is the day her grandson, Matthew, was born. "I looked in the
crib and it was an overwhelming feeling of love; words just can't describe
how I felt."

Matthew is now seven, and it is this relationship that she finds
hardest to relinquish. From her bed, Val can watch him bouncing on the
trampoline in the garden when he comes to see her. "I love him so much; if
it wasn't for him, I'd have refused all treatment a long time ago."


Refusing treatment is one way a terminally ill person can assert their
will to die, but it requires huge reserves of willpower. Many patients are
isolated in hospital or at home, surrounded by family and a medical
profession intent on keeping them alive.

Val says she met a wall of silence when she first started questioning
her situation: "It was so frustrating, I couldn't find anyone to talk to."

So she began a desperate search for information about the choices
available to a dying person, searching the internet when her carers were out
shopping, and watching television until late at night, hoping to find
information and support - anything that would protect her from being kept
alive against her will.


When she finally contacted the campaign group Dignity In Dying, last
year, the relief was immense. "It was wonderful to talk to someone who
understands how I feel."

Then she saw a television documentary about Dr Anne Turner, from Bath,
who was in the early stages of an incurable degenerative disease,
supranuclear palsy. At 66, Dr Turner, a family planning expert, had seen her
husband and brother suffer lingering deaths.

With another five years left to live, she was determined to die on her
own terms. In January 2006, she travelled to the Dignitas Clinic in Zurich,
accompanied by her two daughters and sons. Swiss law allows assisted suicide
but the person must prove mental competence and be able to voluntarily grasp
and swallow a lethal sodium barbitol solution.

Once doctors at the clinic had agreed Dr Turner fulfilled the
criteria, she was given the drugs and, accompanied by a nurse and her
children, went to a nearby apartment where she died. No action was taken
against her family on their return to Britain and they have since campaigned
for a change in the law to allow assisted death for the terminally ill in
the UK.

"When I saw Anne Turner on TV, I was so jealous," Val says. ''I wanted
to go there but didn't know how to do it." She decided that she would prefer
to die with the help of strangers in a rented room in a foreign country than
to remain at the mercy of British doctors.

She talked to her family - they were shocked but have come to
understand her position. Late last year, Val contacted FATE (Friends At The
End), which is based in Scotland and allowed by Scottish law to publish
information about Dignitas.

At first, just the thought that this option might be open to her gave
Val relief. There were still practical problems: she would need to find
someone to book her flight, get her to the airport, travel to the clinic and
then watch while she took the drugs that would hasten her end.

Christmas interrupted her planning and, after enjoying the festivities
with Matthew and her family, she decided not to contact Dignitas. ''I
started to worry: what would Matthew think? That his Nan had done something
criminal, had committed suicide?"

Now, two months later, as her condition has worsened, Val's resolve
has vanished. She has a lung infection and is taking strong antibiotics.
"I'm trapped, I've left it too late. I can stand a lot of pain, but it's
getting worse. I've made up my mind I'm not going back to hospital."

Doctors are not legally allowed to give adequate pain relief if this
involves the "double effect" of hastening death, and although she could
still refuse food and hydration, she says her carers would not allow it.

When we last talked this week, her fierce will seemed broken and her
voice was slurred and unutterably weary. "I wish I'd gone to Switzerland. I
can't go on, even for Matthew now, I can't go on," she said.

Many will disagree strongly with Val's position, unable to contemplate
allowing - let alone helping - a loved one to die under any circumstances.
Instinctively, Val clings to life and especially the loving relationship she
has with her grandson, but increasingly it is not enough.


She has reached the end of her own powers of physical and psychological
endurance but has a long way to go until what she believes will be the
bitterest of conclusions. The vacillation and regret she expresses as she
struggles with the moral and practical issues of her desire for death
illustrates her mental turmoil, but she dismisses suggestions that she is
depressed or that better quality of care would improve her life and outlook.

What Val McKay wants is a dignified death over which she can exert some
control, preferably assisted suicide, in her own home, surrounded by her
family and her three carers, who have become her closest friends. ''I wasn't
ready before Christmas and now I'm not well enough to go anywhere.

Hindsight is a wonderful thing but I wish I'd gone to Zurich long ago. If I
could just take something and it would all be over, it would be a huge
relief."

The British point of view

a.. In May 2006, Lord Joffe's Assisted Dying for the Terminally Ill Bill,
which would give doctors the right to prescribe drugs that a terminally ill
patient in severe pain could use to end their own life, was defeated in the
House of Lords.

Jeremy Purvis's subsequent attempt, in 2005, to introduce assisted death for
the terminally ill and mentally competent was also defeated in the Scottish
Parliament.

a.. But 80 per cent of the British public support a change in the law to
make medically assisted dying for terminally ill adults (who are suffering
unbearably) a legal practice (British Social Attitudes survey, January 2007)

a.. 81 per cent of Catholic respondents, 81 per cent of Protestants and 95
per cent of non-religious respondents support assisted dying legislation
(NOP survey, 2004)

a.. 80 per cent of disabled respondents supported assisted dying legislation
(YouGov poll, 2004)

a.. 78 per cent of people over 65 support a change in the law on assisted
dying (NOP poll, 2004)

a.. 80 British citizens have travelled to Dignitas in Switzerland to end
their lives




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