A dignified exit?

Every year the Voluntary Euthanasia Society (VES) receives about
500 calls from terminally ill people who want to end their lives
and twice that number from carers seeking advice on the
issue.

Since the much publicised case of 74-year-old Reginald Crew, who
travelled to Switzerland to end his life after a four-year battle
against motor neurone disease, more callers have been asking for
details on how to do the same.

Crew’s widow Win, who went with him and was there when he took a
lethal dose of barbiturates, could now be jailed. So too could the
television film crew that accompanied the couple. Under section 2
of the Suicide Act 1961 both could be guilty of aiding and abetting
a suicide, a crime that carries a 14-year prison sentence.

Prosecution is, however, unlikely. The VES says that few cases
reach court and those that do result in a suspended sentence – a
relief undoubtedly to Win Crew and other carers who find themselves
under pressure to assist terminally ill loved ones with suicide
because they are physically unable to do it themselves.

Just how common assisted suicide is in the UK is unknown as the
government has never conducted research into the issue. But the
number of callers to the VES gives an indication that it may be a
significant minority.

Deborah Annetts, chief executive of the VES, says: “We hear from
desperate terminally ill adults daily. Disempowered by the law they
are driven to drastic measures – some seek help overseas, others
from sympathetic family members or doctors, or even end their lives
before they really want to, fearing that if they leave it longer,
they will need and be refused assistance.”

The debate on whether the UK should follow the examples of the
Netherlands, where assisted suicide has been legal since 1990, and
Belgium, which followed last September, has raged for years and
presents a host of ethical problems.

The debate on legalising assisted suicide has gained momentum
because of cases such as Crew’s and that of Diane Pretty, who died
last May of motor neurone disease, having fought unsuccessfully for
the right to die during the three years she had the disease.

Lord Joffe introduced the Patient (Assisted Dying) Bill in the
House of Lords last month and it is likely to receive widespread
public support. A national opinion poll carried out last October
found that 81 per cent of the public were in favour of legalising
assisted suicide for terminally ill people.

Annetts believes such a law is urgently needed, adding that it
would “put the person at the centre of all medical treatment and
ensure that the disabled are properly protected, unlike now”.

But disability organisations and the Disability Rights Commission
are worried that it will have the opposite effect. Jane Campbell, a
disability rights campaigner, says it would place disabled people
“in a very dangerous position”. In January, she wrote a paper on
the dangers of legalising assisted suicides for a debate on the
issue organised by the DRC.

In it she argued: “While I would defend a person’s choice to end
their own life I could never accept the dangers that would attend
the legalisation of assisted suicide and, if that means that a very
small number of people are forced to live against their will, then
so be it.”¹

Campbell, a wheelchair user who has always suffered breathing
problems and chest infections, says the lives of many disabled
people are seen as inferior to those of able-bodied people.
Moreover, people in the medical world often consider them to be
terminally ill. When Campbell was born, her mother was told she
would not live beyond her first birthday.

Four decades later she can recall the discrimination she has
encountered from medical staff and society in general. During a
recent spell in hospital with pneumonia a doctor told Campbell that
it was assumed she would prefer not to be put on a ventilator if
she suffered respiratory failure.

Campbell’s fear is that disabled people may be subtly coerced into
choosing assisted suicide by the unspoken pressure from family and
doctors. She feels great sadness when a person who becomes disabled
would prefer to be dead, and that the reasons people cite for not
wanting to live, such as incontinence or being unable to lift their
head off a pillow, are not enough to choose death.

But quality of life is a personal issue. Pretty’s solicitor, Mona
Arshi, who works for human rights organisation Liberty, says: “Her
view was that she did not think that this was life. She had had
enough.” She says she understands Campbell’s concerns but asks: “Is
it right that someone like Diane Pretty should be stuck in a life
that she saw as a tragic trap because she is physically unable to
commit suicide? And a draconian law says that if her carer tried to
help her he would be liable for a long prison sentence?”

In her view an assisted suicide model could only exist alongside
good palliative care. Only then could it be ensured that people
with incurable illnesses had been given every option. But Arshi
does have “problems” with the Swiss model because it is
unregulated.

“I think we have to be aware that there is a demand and places like
Dignitas [where Crew went] are meeting that. We need a system that
has safeguards to protect against abuse but that also allows choice
for people like Diane Pretty.”

Campbell, though, says it would be impossible to introduce a
regulatory framework that would not be a risk to disabled people,
mainly because safeguards written into the laws in countries such
as the Netherlands do not offer protection. In Belgium, for
example, one safeguard is that a person must make their request to
die in writing repeatedly. But Campbell says many people who become
disabled may want to die for the first couple of years, but
eventually adapt. “Where would you draw the line in terms of how
many times you had to request death and over what period of
time?”

For many, assisted suicide offers not freedom from a disability
that they cannot adapt to but autonomy, the chance to exercise some
control over the manner of their death. Pretty’s main fear was that
she would choke to death. Others want to put an end to the constant
pain and weariness of the dying process.

Campbell believes better resourced palliative care is the answer.
But for Lisa Cook, 35, even the best palliative care would not
prevent her choosing an assisted suicide if it were an option. She
has Huntingdon’s, an incurable hereditary degenerative disease. It
is likely that she will start to develop symptoms within 15 years
as 80 per cent of people with the condition show the first signs
between the ages of 30 and 50.

Cook cared for her grandmother during her fight against the disease
and now her mother has it. “What we are asking for is legislation
that provides choice,” she says. “Every week we hear of failed
back-street assisted suicides. Some people end up in a worse state
than they were before.”

There is also the immense guilt felt by many carers in the
aftermath of having helped a loved one to die, which affects their
health and in some cases leads them to take their own life.

Cook says: “I know what I’m in for. I don’t take anything away from
palliative care. What’s available in this country is brilliant. But
to me it is about quality of life issues. I will end up in a
wheelchair, doubly incontinent and being fed by a tube to keep me
alive. It’s too much.”

¹ Jane Campbell, paper delivered to “Right to
Live, Right to Die” debate organised by the Disability Rights
Commission, January 2003