What kind of person envies someone who is dying from cancer? The bestselling
author Terry Pratchett, that's who. Last week, he spoke movingly about
living with early-onset Alzheimer's disease, which “strips away your living
self a bit at a time”. The disease, he said, had left him with “a sense of
loss and abandonment”.
The 59-year-old fantasy author appeared at a conference for the Alzheimer's
Research Trust, to which he pledged a million dollars (around £500,000). He
received his diagnosis in December but revealed that he had been suffering
for at least two years. He has lost the ability to touch-type, although he
has not yet stopped writing.
He told the conference: “I'd like a chance to die like my father did - of
cancer, at 86. Before he went to spend his last two weeks in a hospice, he
was bustling around the house. He talked to us right up to the last few
days, knowing who we were and who he was. Right now, I envy him.”
When Pratchett appeared on the Today programme last week, he acknowledged that
dementia does not have the “heroic glamour” of cancer - and that to say so
would not make him popular. As he told the ART conference: “It's a shock and
a shame to find out that money for [Alzheimer's] research is 3 per cent of
that which goes to find cancer cures. Perhaps that is why I know three
people who have survived brain tumours but no one who has beaten
Alzheimer's.”
It might be a controversial point of view but Pratchett is not alone in
holding it. Dr Guy Brown, a biochemist at Cambridge University, also
proclaims that too much money is devoted to research into cancer and heart
disease, to the detriment of studies into dementia. Brown thinks that
lavishing fortunes on these conditions - that extend life span but drag out
the years in which people suffer - verges on the immoral.
This is what Brown has to say about the country's 10,000 centenarians, a
figure expected to rise to 250,000 by the middle of this century: “Some are
in a very bad state cognitively and physically. Why are we creating these
people? We are increasing life expectancy beyond what is beneficial.”
It is not that being old is inherently wrong; but that the increase in
longevity has not been accompanied by an increase in quality of life. There
is a gap opening up between life expectancy and healthy life expectancy, and
increasing numbers of us can expect to fall into the dementia-filled abyss.
It is a long, painful descentthat takes a decade to reach the bottom, but
the relentless medical focus on postponing death means that the bottom is
getting ever farther away. For example, the last decade brought a two-year
increase in life span, but we can expect to spend only a quarter of it in
good health. In effect, it means that modern medicine has gifted us an extra
year and a half of ill-health. As Brown argues in his book, The Living End,
we are not facing the consequences. “We are driving up longevity and
creating more and more people with a very low quality of life,” Brown points
out, when we meet in his cosy office at Cambridge University. “A
disproportionate amount of funding goes to cancer and heart disease, whereas
stroke and dementia get much less. These are skewed priorities. We need to
switch dramatically but that would mean stopping government funding for
cancer and cardiovascular disease, and that would cause screams in the
medical research establishment.”
This realisation prompted Brown, 48, to rethink his research; he studies cell
death, and shifted his focus from cardiovascular disease to dementia because
he believed it would make a more positive contribution to society. To some
extent, statistics are on his side. The World Health Organisation calculates
that, when it comes to disability in the over-60s, dementia is responsible
for about 11 per cent, cardiovascular disease for about 5 per cent, and
cancer for 2.4 per cent.
In January, the House of Commons Public Accounts Committee also called for
dementia to be accorded the same status, in terms of national health
priorities, as cancer and heart disease. The committee was told that
dementia costs the UK economy £17 billion a year, more than stroke, heart
disease and cancer combined. The Alzheimer's Research Trust points out that
only £11 is spent on UK research into Alzheimer's for every sufferer,
compared with £289 for every cancer patient. Even accessing drugs is
difficult. As Pratchett noted wryly: “The NHS kindly allows me to buy my own
Aricept because I'm too young to have Alzheimer's for free, a situation I'm
OK with in a ‘want to kick a politician in the teeth' kind of way.” Dementia
is regarded as taboo and unpretty; its sufferers are hidden in care homes,
often without relatives to protect their interests, and with no political
voice. And so, according to Brown, this topsy-turvy view of medical
priorities persists.
By the “wrong concept of death”, Brown means that we possess a digital view of
death, in which we are either switched on (alive) or switched off (dead). He
prefers to frame life and death as an analogue process; just as we grow into
life, we grow out of it. He explains: “The digital theory of death might
have applied in the past when we died relatively young but that's no longer
the case.”
He believes that the last decade of life deserves as much attention as the
first; he argues that every person deserves equal consideration throughout
life. That means, he says, that hospices should be paid for by the public
purse, and we should instigate research programmes to tackle the diseases of
ageing. Unfortunately, he says, funding for ageing research is derisory.
Controversially, Brown also suggests that wiping out cancer and heart disease
might be misguided, because these are swifter, and therefore relatively
desirable, ways to die. It would be easy to think him heartless, were it not
for his moving and vivid descriptions in the book of watching his own father
die from pancreatic cancer. Brown writes how he “returned one last time to
the hospice on a vile rainy day - I hadn't seen him for a week - and it was
like something from a horror movie. I had never seen someone so dead who was
still alive.”
Brown admits “the experience of seeing my father in pain and being in a
degraded state was very difficult. But, although it was awful, in the
grander scheme, it was a relatively easy death. My father had expressed a
fear of dying with dementia, and so that would have been much harder, and
that's partly why I believe we shouldn't remove these acute forms of death
(like cancer). We'll just be exposing ourselves to longer, more drawn-out
forms of death.
“People who have dementia have a much harder time. My mother-in-law has
dementia and she looked after her mother who had it, and she always feared
getting it. And when she went into it, she became extremely depressed. You
go into it over a number of years and your emotions aren't flattened - you
definitely know that you're going demented.” Brown's mother-in-law is now in
a care home.
Brown believes that we should consider legalising assisted suicide and
euthanasia (assisted suicide entails providing the means of death rather
than actually administering it). His father had stashed away barbiturates
during his work as a vet. But by the time he needed them, he couldn't access
them. Brown took it upon himself to try to source them on the internet -
with little success. Nonetheless, he would have been willing to accept the
legal consequences of abetting his father's wish to end it all.
In fact, Brown believes that society - which, in his view, forces long,
lingering deaths on people by failing to tackle the diseases of old age
while simultaneously pushing up life span - is morally obliged to allow
assisted suicide, which carries a maximum jail sentence of 14 years. He
thinks such services should be provided institutionally, even in hospitals.
“A lot of people have horrible deaths and many would end it prior to the
bitter end, given the choice,” says Brown. “There are going to have to be
institutions for exiting life, for those desperate to die. Yes, it's a
difficult thing to contemplate and it's bad, but the alternative is worse.
We are simply abandoning people to a horrific quality of life.” By the time
people want to breathe their last, they are often too frail to kill
themselves; or they are in hospital.
What of the argument that some old people might feel coerced into suicide, to
spare their families the burden of looking after them? “We need to set up
institutional failsafes to prevent that. But just because of that
possibility in a small percentage, I don't think we should force others to
live for ten years in a really degraded state. We have to balance the
dangers (of coercion) with something potentially worse.
“Society has to sort it out because it's going to get worse. We are going to
reach some kind of tipping point at the middle of this century when 50 per
cent of people are going to expect to die with dementia. When people expect
to die like that, they will disengage from society. That's going to be a
huge problem and we need to do something about it now.” That “something” is
public discussion and putting more money into raising the quality of life
for old people; he welcomes, for example, the recent focus of the NHS on
end-of-life issues (www.endoflifecare.nhs.uk/eolc) but says “it is rather
like picking up the pieces, rather than addressing the root causes of the
problem, which is increasing life span without increasing healthy life
span.” The NHS is consulting on the issue and will publish its strategy in
June.
Brown, a father of three children from 8 to 17, himself has a degenerative
disease: “My own death looms on the horizon.” He expands neither in the book
nor in person. But, he says, it has focused his mind on the sort of death he
wishes for himself and his loved ones: quick, painless and at home. He has
not discussed his death with his partner, Sarah, yet, but probably will. Nor
has he prepared a living will, although he thinks they are a good idea.
Brown does not fear being dead but “it's the process of dying that is
potentially not very nice. Hopefully, I would be able to end my own life
without seeking assistance. I imagine, though, that there might be
circumstances in which that might be impossible.” In that case, he might ask
his partner.
But, as Brown tells me, this book is not about the personal. It is about how
we face up to an ever-expanding generation of the living dead.
The book ends on an uplifting note, for Brown would like to be seen as an
optimist. His take-home message? To live not as if you have all the time in
the world, but as if it will soon slip from your grasp. “Leave something
really worthwhile behind you,” Brown writes. “Build that dream, write that
novel and...have lots of sex.”
The Living End: The Future of Death, Ageing and Immortality, by Guy Brown,
Macmillan, £16.99
MONEY WELL SPENT?
Charity incomes 2006
Popular charities
Cancer Research UK
£423,411,000
www.cancerresearch.uk.org
British Heart Foundation
£159,156,000
www.bhf.org.uk
Marie Curie Cancer Care
£103,759,000 www.mariecurie.org.uk
The Stroke Association £16,122,000
www.stroke.org.uk
Degenerative diseases
Alzheimer's Society
£ 37,520,000
www.alzheimers.org.uk
Multiple Sclerosis
Society of Great Britain
and Northern Ireland
£ 29,418,000
www.mssociety.org.uk
Parkinson's Disease Society
£14,246,000
www.parkinsons.org
Motor Neurone
Disease Association
£ 9,283,289
www.mndassociation.org
Alzheimer’s Research Trust
£3,157,578
www.alzheimers-research.org.uk
