There
is a country in Europe where many people are condemned to months
or even years of suffering through no fault of their own. Their
families suffer with them.
Not only are they entirely blameless, the country owes many
of them a debt of gratitude for what they have contributed over
the generations. And yet they suffer while most of us look away.
It is, of course, this country.
The principal victims -and I choose those words carefully -are
the old and the demented. There are many of them. I know that
because of the reaction to what I wrote in this space three
weeks ago about the death of my own father.
In 45 years as a journalist I have never had such a response
to anything I have written. Outpouring would be a better word.
It revealed a depth of worry, anger and fear that I would not
have believed existed had I not read the letters and the e-mails
for myself.
Every one of them tells its own sad story. They are mostly from
children and grandchildren, brothers and sisters, who are forced
to watch their loved ones suffer. They are victims too. There
is a common theme, questions that are asked over and over again.
Why can they not be allowed to die? Is it right for me to wish
them dead?
Should I not be ashamed of myself? Underlying it all is a deep
uncertainty about the legal position, the status of so-called
living wills, the ethical and moral obligations of the medical
profession. Let me give you a flavour of the sort of thing I
have been reading for the past three weeks. One woman's husband
developed dementia in his fifties; it is a myth that it affects
only old people. Among other things, he suffered hallucinations.
Towards the end they were so terrifying he was a truly tormented
soul.
"I pleaded for medication," his wife wrote. Eventually he was
given enough morphine to kill him, but only after terrible suffering.
A few months later her elderly cat became ill. "I did not allow
him to suffer," she wrote. "Why did my husband have to?"
Another woman watched her mother deteriorate from vascular dementia.
After 10 years she finally collapsed and was taken to hospital.
She "lingered on" for two years, doubly incontinent, unable
to walk or feed herself and unable to recognise her children.
Every time her father visited her he would sob.
It was, she wrote, "dreadful to see ... I prayed for her death
... I begrudge all the time when she was alive and I wasn't
able to communicate with her and the mother who had looked at
me with such love and pride in her eyes started to look at me
as though I was a hostile stranger".
Another woman: "I still cannot talk of the terrible trauma I
went through as I watched my poor, clever, loving, kind mother
die in a horrendous way in a mental hospital 17 years ago. I
hope when my time comes it will not be like my mother's."
A man compared his mother's experience with that of his wife's
mother. One suffered dementia for years before dying slowly
and painfully. The other "was the sensible one who committed
suicide and, thankfully, succeeded".
A chiropodist treats elderly patients in EMI homes (elderly
mentally infirm). The suffering she sees has "broken my heart".
She goes on: "Life is the most precious thing ... but so is
a dignified and peaceful passing." Then there are the letters
from old people whose greatest fear is that they will be a burden
to their children. An 84-year-old man who has been "in and out
of hospital this last 18 months" wrote: "I've had a marvellous
life and now I think I should be able to call it a day."
I could fill the columns of this newspaper with letters such
as these. But columnists are meant to do more than chronicle
events, however tragic they may be.
They are meant to provide answers. Here is where it gets more
difficult. Who shall we turn to? The doctors do not have the
answers. Many of them wrote to me to say so.
The oncologist who treated my late wife (wonderfully) wrote
of "the two opposing perilous interventions between which we
need to steer". On one side, he said, is "the inappropriate
intervention to wrongly sustain life as it approaches its natural
end". On the other are the "increasingly strident calls to intervene
to actively end life ... that would increasingly put at risk
many of the most vulnerable in our society".
So let us turn to the politicians. All sensible MPs and ministers,
including David Blunkett, know that the present laws are hopelessly
inadequate. There are two new pieces of legislation before parliament.
The Mental Incapacity Bill deals, among others things, with
living wills. They allow us to specify in advance that we don't
want to be treated under certain conditions. Surveys suggest
that most of us have never even heard of them, let alone made
use of them. They have status only in common law.
Enlightened GPs like my own, Dr Sarah Jarvis, take them seriously.
If a patient signs one, she attaches it to her medical notes.
But in the latest survey a quarter of the doctors asked said
they would not respect a refusal of treatment.
The new act would make the wills legally enforceable. It would
also set up a new "court of protection" and allow family members
to be appointed as "deputies" who would represent their interests
if they were no longer mentally competent.
Organisations such as Help the Aged broadly approve. The other
is Lord Joffe's Patient (Assisted Dying) Bill. It says that
a competent adult who is suffering unbearably as a result of
a terminal or a serious, incurable and progressive illness would
have "the freedom to ask a doctor to bring their suffering to
an end by assisting them to die at a time of their choosing".
In other words, it would allow a doctor to kill us. Many doctors
do it already under a practice known as "double effect". They
increase the dose of morphine to alleviate pain and keep increasing
it to the point where they know the patient will die.
It happens in hospices with cancer patients routinely. I have
seen it for myself with someone who was very close to me. She
wanted it and so did we. It is the right and humane thing to
do. Why should anyone be allowed to suffer horribly when there
is no hope that they will recover and the means to end that
suffering are at hand?
But the Joffe bill, which would give the practice legal approval,
has no chance of becoming law. The Mental Incapacity Bill very
well might -assuming the government gives it the time in the
Commons and assuming the powerful pro-life lobby does not prevail.
The Voluntary Euthanasia Society will not comment publicly on
the bill - even though it approves of it -because people might
think it has something to do with euthanasia.
The pro-life view is that the prohibition on killing is at the
centre of morality.
As Lord Alton puts it, it provides the cornerstone of whatever
rights an individual may have. "Dying," he says, "is not only
a personal or individual matter ... the interests of an individual
cannot be separated from the interests of society as a whole."
It is a persuasive argument and I believe -more than ever after
reading all those letters and e-mails -profoundly wrong. It
takes no account of the increasing ability of medical science
to keep more of us alive to an ever greater age.
The number of people living to more than 65 has more than doubled
since 1930. The number of 85-year-olds has increased by a half.
Dementia with all its degrading, humiliating, demeaning, dehumanising
effects has increased proportionately. There are now believed
to be more than 1m people suffering from dementia in one form
or another.
So we may well end up with a situation where people who want
to die will be allowed to do so, but the doctor cannot help
them -even if they choose to starve themselves to death. I understand
the fear of voluntary euthanasia. But I cannot get out of my
head one particular letter. "I am," she wrote, "a very frightened
73-year-old lady." She lives alone, has no close family and
she is in constant pain. She ended her letter with these words:
"Please help me. Quickly." I wish I could.
john.humphrys@sunday-times.co.uk
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