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
Link To The Original News Article
After reading your News Article in conjunction with; You're A Worthwhile Person in More Ways Than a Million by Simeon Johnson; that lifts spirits, improves self-esteem, and replenishes hope.
Alzheimer's or cancer: Neither of these disease would be a disease of choice to die from by most people!
Therefore, this unique book offers a superb opportunity to increase the public awareness of identifying the unsung heroes among us that keeps the wheels of society moving.
Simeon Johnson, Brooklyn, US
;My mother had alzheimer's disease. She lost control of all her facilities, all social graces, didn't know my dad or anyone else in the family. She said she thought she was going mad and cried a lot - we couldn't leave her alone for a minute. She was doublely incontinent, no concentration and very miserable. It makes me so angry when people say " at least they don't know how bad they are, that's a blessing" Who wants to be in that condition - having to be looked after, fed, cleaned up, unable to recognise their loved ones. I have always said I'd rather have cancer than Alzheimer's disease. God did not mean for anyone to be left in such a condition. And finally, what other human, doctor, lawyer, PM. has the right to set themselves up as the decision maker of what happens to another human. Each person should have the right to decide what they what at the end of the day if they are afflicted with this terrible disease.
A.S.Douglas, Edinburgh, Scotland
My husband and I, had we the choice, would choose cancer over Alzheimer's.
... and feel very strongly indeed that the amounts spent on research for other than heart disease and cancer are appallingly low...
Gillian Goldberg, London,
I identified very much with Brown's when he said that he does not fear being dead but "its the process of dying that is potentially not very nice." Surely that is what most of us fear. We know we must die, but for our own sakes and for the sakes of our loved ones would like that death to be as pain free as possible and above all, dignified. Why are not more people demanding that the end of life be given the same attention as all other aspects of our lives? Many would like to be able to control how and when they die and yet the subject remains off limits.
Anne Adams, Walton on Thames, England
I am in remission from breast cancer, but the year before my diagnosis I watched my dad in the final stages of the dementia he had suffered for 2 years. This was worse than what I had to endure from cancer treatment. Chemotherapy temporarily robbed me of my concentration and short term memory and I suddenly realised how frightening it must have been for my dad when he found he could no longer remember things.
Linda, Fife,
Obviously no-one else here has terminal cancer. I'd much rather have alzheimer's, but unfortunately I don't have the choice. At least if I were demented I wouldn't be so aware of what was happening to me.
Alys, Colchester, UK
I watched my father die a painful death from non-Hodgkins lymphoma 15 years ago. I am now a full-time carer for my mother who has been diagnosed with terminal cancer and vascular dementia. Fortunately, at the moment,she hasvery little pain with the cancer but no-one can tell me if this is because she doesn't recognise pain due to the dementia. She suffered a severe stroke last year and it would have been a blessing if she had left us then but medical intervention denied this and now I am looking after somebody who is no longer the mother I grew up with and I know that the situation will only become harder day by day but I have to find the strength to deal with it. Putting her into a home is not an option as far as I'm concerned. At the moment, I still get glimpses of the mum she once was and for that reason alone, I hope that the cancer gets her before she loses all her dignity with dementia and I lose all the loving and happy memories of my mum.
Elizabeth Harvey, Southampton, England
I am in my eighties and am seeing my peers suffering from a variety of aging complaints. Give me anything rather than one of the degenerative diseases.........Especially as I live alone and so would not even have a carer to keep me human!!!!
Maureen Cowie, EnglandWelwyn Garden City,
Having watched my mother slowly wither away over several years with dementia, unable to recognise or talk to people she had loved, I have no shred of doubt that I would much rather die from cancer, heart disease or stroke than than any form of dementia including Alzheimer's.
It is a devastating illness for both the sufferer and other members of the family. There is no dignity with dementia.
J Snell, Hitchin, England
at last two people prepared to face the horrendous problems created by extra years of life in illness and depression except for the very lucky few. I am nearly 70 and live in terror of developing alzheimers and the firm intention of committing suicide immediately if I am diagnosed with it. I live in a block of flats for retired people and so am all too aware of the reality of care for the elderly and find the future prospect very frightening. the majority of people seem totally unable to face the reality of this problem and I commend both Terry Prachett and Dr Brown for helping to make us all drag this subject out from under the carpet where it has been firmly swept. To make the medical profesion to think about the responsibility of saving the elderly for years of horrendous neglect and suffering and living as vegetables which i have seen with my own eyes is something which is necessary we must think about the reality of this existance.
A. Creswick-Dawson, oxford,
I really think it's time to have this debate about when a person has the right to be helped to a dignified and peaceful end.
My mother died 18 months ago after suffering Alzheimers for 6 years. She always said "shoot me if I get it" although we never could, to watch her suffer as she did was painful in the extreme. She had been a nurse during the war and diagnosed the illness herself. She was a wonderful mother and grandmother, she did not want us to watch her as she lost control of her mind. My mother-in-law now has dementia and I see the family struggling again with nowhere to go but a sad end.
All 4 of my own grand parents lived to be over 80 without any sign of demensia. How sad then that both my own childrens grandmothers have had it.
Suerly we should all be able to say whilst still of sound mind what we would have happen to us when the quality of our lives is such that keeping us alive is cruel and with no light at the end of the tunel, let us go with love and fond memories .
Hilary Claxton, Kendal, UK
Having watched my mother die from Alzheimer's I would gladly die of cancer. It is the most cruel way to die. She was reduced to a "blithering idiot". My GP advised me to stop taking HRT pills, saying that although they might stave off Alzheimer's, they might cause cancer -- I jumped at the chance! I agree 100% with Terry.
Dillon, Londonderry, N. Ireland
I agree wholeheartedly with Terry. My mother died from Alzheimer's -- a most cruel death. She was reduced to a "blithering idiot", from being a capable and clever woman. My GP wanted me to stop taking HRT pills as he said that although they helped to stave off Alzheimer's they could cause cancer. Give me cancer any day!
B. Dillon, Londonderry, N. Ireland
I would prefer to die from Cancer rather than Alzheimer's. .
I cared for my mother who died from Alzheimer's. I became a physical and mental wreck as I tried to cope as she disintegrated before my eyes.
I had to fight to recive a care package which fell apart when the regular carers went on holiday or had days off . It was so stressful.
If you have Cancer you receive vip. treatmen from Health and Social services ----you recieve adequate pain relief and in the later stages you can be expertly looked after at home or in a hospice where you receive treatment by specialist nurses,psychologists,doctors,chaplains etc.
If you have Alzheimer's you are cared for by Carers with no proper training . They don't know the importance of fluid intake, skin care and prevention of bed sores.
In nursing homes your loved ones are treated with no respect.
There needs to be properly trained nurses looking after patients with Alzheimer's. Government needs to address this issue'
Barbara Courtney, Moira Craigavon, co.armagh, n.ireland
The important thing is not a choice between death from one disease or another - it is the choice to end ones life when that life becomes unbearable. It is time voluntary euthanasia became legal.
Myra Smith, Dunbar, UK
I nursed both my parents at the end of their lives.
My dad had bowel cancer and my mum had both alzheimers and breast cancer. They died within 5 months of each other.
It's not the dying with Alzehimers that's the problem it's living with it.
Moira Burns
Moira Burns, Harrogate, England
Would I rather die of cancer than of Alzheimer's? You bet I would! I have watched bright, intelligent people turn into miserable, frightened zombies through dementia. Better death a hundred times over; that will come to us anyway in time.
Frances Mallett, Dorchester, Dorset, England
It shouldn't be a dementia vs cancer debate at all. We should be debating ways of allowing people to die with dignity if they so choose.
Marilyn, Birmingham,
I do not know if I am afraid of death,wether it is 'the end of everything' or 'a return to beginnings'
I am afraid of being alive and not conscious of Life, with my family needing to cope with that over a long or short tperiod of
time
I would like an acceptable way out, when I am no longer of any use to myself, or can see the end in view
The door to eternity should not be locked
Maureen Harrison, Pudsey, Yorkshire
I can sympathise with Terry Pratchett, I sometimes feel that I too have the onset of Dementia, I forget people's names, my fingers type the wrong letters, I put the wrong letters in the crossword and I panic thinking that's what is happening to me. I watched my dad of 95 years die with Vascular Dementia. That was the diagnosis one year ago but I'm not so sure he hadn't been suffering with it for much longer. I had watched him go from being a very fit, active upright man but over the years everything deteriorated until he could do nothing for himself. So, whilst he lived to a grand age of 95 his quality of life was zero. So what is the point of living a long life, only to end up like a vegetable. I know you cannot choose how you die but why not invest more money into Alzheimer's Disease to save such a long slow confusing death. I would hate to get Alzheimer's Disease and lose all my dignity with it.
Alison Oswald, Fareham, England
Watching someone you love die slowly as cancer eats away at every part of their body reducing them to a skeleton is no easier than watching someone descend into dementia - not all cancers kill swiftly and this is something that should not be forgotten.
Emma, Newbury,
I am happy that Dementia /Alzheimer's disease are being debated at last. Yes more money should be spent on research. I would rather die with cancer than Dementia/Alzheimer's.
At least I will still have my memory, i can still have choices and will be able to communicate how i want to be cared for etc. When you have Dementia/Alzheimer's it is a horrrible, horrible way to live , and the treatment you receive at the hands of some families and care institutions and the misunderstandings you have to deal with, other people making decisions for you.
Sometimes a stranger washing/dressing you, giving you foods to eat that you never had before or never would have if you had a choice, being locked away etc .
Dementia/Alzheimer's destroys you completely, it eats away at you day by day , it affects your memories(Brain) your emotions, and in some cases, painful physical problems occur, and yet you can still be alive . You start dying the day you are diagnosed.
Elizabeth Stobbe, Essex, United Kingdom
Give me cancer any day. Mum, aged 73, kept hers quiet, was active until 2 weeks before she died and would only admit the pain when she was officially informed she had cancer and there was no hope as it had spread everywhere. Dad has early stage dementia at 88, knows exactly what he is losing and is extremely unhappy about it whilst trying to keep up a good facade for us. As there's nothing physically wrong with Dad he's likely to live much longer but won't want to as he thinks he's bad enough now. My partner's family live well into their 90s but get alzheimers in their early 60s. Its not good to watch people live for 30 years with the disease. I agree with Terry - more funding is required but old people don't seem to matter in this society any more.
Anna, Sheffield,
There are many medical conditions which receive little funding. Its not good that Terry Pratchett is now pushing for more funding in the one that affects him, at the expense of other medical conditions. Try living with meniere's disease Mr. Pratchett which receives a pittance in funding, but unfortunately no well know celebrity has this. Try spending your days with really bad vertigo, which causes the world to violently spin around you, leaving you lying over a toilet vomiting for hours on end, and unable to walk. These attacks can strike at any time and last for 8 hours or more. Sometimes 3 times a week. Try living with tinnitus, a 100 decibel car horn noise going off in your left ear 24/7. All these symptoms are part of meniere's disease. There is currently no effective medication or treatment than can stop these attacks or reduce the symptoms.
Andrew, Wexford, Ireland
What a stupid and pointless debate! Why are we discussing death in the context of how would each of us like to 'go'. I mean seriously if anyone knew how we are going to die then fine debate until you are blue in the face. We dont get to choose our ultimate fate. So people, live life to the fullest, live your dreams and never give up on your ambitions, remembering we only have one chance at life.
Sumayya, Thornaby,
While I appreciate the comments and admit that I cannot make a 'removed' comment about Alzheimers as my mum suffered with it for 12 years I feel I must say something.
We are all going to die but the manner of our last years and our deaths should not be something that we would not wish.
Billy Connelly once related a story of how upset his sister had been when their dad had pee'ed in a frying pan. Connelly maintained that if the dad was happy, so she have been.
People with Alzheimers are supposed to feel nothing. While loosing mum I did try the 'Connelly' theory, but what hampered me was that my mum would have HATED what she became.
Mum lost every bit of herself that she would have recognised. She would have hated how she spent her last years. Everything she thought her old age would be was taken away from her and we were helpless.
So what Pratchett and myself are choosing is not 1death or another but to be able to take part in our lives right up to that death.
Sue Hill, Erith, Kent, England
It is surely impossible to say unilaterally whether death by cancer is better than death by dementia. Everyone's desires will be different reflecting their own specific cirumstances and experiences of those who have died around them.
I saw my father die of prostate cancer, his descent into pain and incontinence before he eventually died mercifully quickly. And I've seen my mother-in-law sink further and further into dementia, struggling over years to put on a face of recognising us at every visit.
I have had at least an insight into the impact of dementia - I suffered a skiing accident some years ago which effects my short-term memory, ability to remember names and a strange writing down of phonetically similar words to the ones I thought I was writing. I share Terry's awareness and frustration at diminished faculties which others set aside with "Oh, we all have problems remembering names."
Dementia research should surely have equivalent funding to that accorded to cancer.
Richard Lewis, London, UK
Look how much is spent on cancer year in year out and you will note it is almost as sound an investment as politicians - both give little value for money, are little closer to a solution, have lots to say but little to offer, trade on fear for future income and control and are far more interested in themselves than in their constituents.
I have cancer and would like to remind politicians that few medical developements occurred due to political involvements and also to remind researchers that the greatest breakthroughs have, in the main, been carried out by excentrics thinking outside of the box with ideas developed in their garden shed and garretts.
Give more money to Altzheimers who will forget where they put it and those of us with cancer will continue to puzzle where all the charities put the money supposed to be spent curing us!
KidneyCancerResource.com may help some who like me have kidney & bladder cancer and it costs NOTHING!
Warm Hands to those in need, Regards, Greg L-W.
Greg LANCE-WATKINS, Chepstow3, Monmouthshire
Yes, I am afraid to say, Alzheimer's disease does kill people. My mother died three weeks ago from it. After a dozen years her brain stopped directing her to swallow and digest food.
Ken Wessel, Kitchener, Canada
"Alzheimer's or cancer: Which disease would you rather die from? " What a facile question? Alzheimer's Disease doesn't strcitly speaking kill people, cancer describes a very diverse set of conditions that have different affects on the body and there are many other terminal conditions. Everyone's death is individual and in my experience most people would like to maintain high quality of life for as long as possible, suffer little pain and cause minimal distress to their loved-ones. Too complex for a headline perhaps?
Fergus , Dublin, Ireland
Everyone has their own personal experiences and I know that being or living with a loved one who suffers from dementia , especially at a young age, is heartbreaking.
However how can someone say that dying from cancer is a better way to die and that money for research should be cut?
I watched my husband (48) battle and be systematically destroyed by pancreatic cancer over 2 years with no hope of cure. The morphine could reduce the pain but took away his ability to function (he was a research scientist). His death was not easy.
Pancreatic cancer has been underfunded compared to other cancers. Although a proportion of the CRUK budget goes to pancreatic cancer it needs to be larger and that raised by the new and growing pancreatic cancer specific charities was still only about £350,000 not millions in 2005.
Sue Ballard
founder Pancreatic Cancer UK
Sue Ballard, Reading, UK
It's painful to read this as my father suffered a long drawn out humiliating death to alzheimers. He would have hated it if he had known anything about it. My mother is now half-way down the same path. Two great people reduced to shells whom I hardly recognise.
Simon Porter, Houston, Texas