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Cancer expert: cost of NHS 'pill culture' too high



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Published Date: 21 July 2008
EXCLUSIVE BY LYNDSAY MOSS
SCOTLAND'S health system is being put under strain by doctors offering patients pill after pill in the search for cures for cancer, rather than letting nature take its course, experts warned yesterday.

With an accelerating number of expensive new
drugs coming onto the market, patients and families are increasingly keen to try anything that could help prolong life. But with some predicting the NHS could be bankrupted by the sheer number of treatments available, experts are now warning that doctors must stop "just trying something else" for the sake of the health service and patients.

John Smyth, professor of medical oncology at Edinburgh University, said doctors needed to embrace the advances in palliative care being made in the UK, and Scotland in particular. He said there were concerns the UK could become more like the United States, where patients are expected to be on active treatment until the day they die.

"I know that's driven by patients and doctors, but I am genuinely concerned that the doctors we are now training are finding there are more and more things they could do and there's a temptation to think, 'What's next, is there something else we can try?'" he said.

"This is a mistake both for the patients and the NHS because there are financial consequences of prescribing medicines which are inappropriate."

Professor Smyth's concerns were echoed by charities, which said doctors needed to be quicker in referring patients for palliative and end-of-life care rather than trying one pill after another.

Professor Smyth and Professor Marie Fallon, an expert in palliative medicine also from Edinburgh University, recently contributed to a special edition of the European Journal of Cancer focusing on care towards the end of life.

They said the NHS, university and the voluntary sector in Scotland were working together to improve the care of patients with terminal illness. But they voiced concerns about reluctance among some doctors to accept patients were dying and so needed a different type of care.

Prof Smyth said: "What we have done in the last 20 years is develop a lot of treatments, but it is important to realise as cancer doctors and palliative care doctors that there is a time when you have to stop just trying something else.

"In the old days we had one or two treatments and when you had finished those you stopped, and you'd say, 'I'm sorry your tumour has progressed, but now we'll turn our focus on to different things, such as pain control, symptom control'."

Prof Smyth said that in the US medicine was practised in a very different way.

"There is a ghastly advertisement they have with a young woman who has lost all her hair and it says underneath 'so what's next?'

"I hate it because in America, because it is their culture, the idea is that you should be taking medicine the day you die because there is always the miracle or the next chance."

Prof Smyth said doctors needed to be honest with patients, rather than reaching for the prescription pad and trying more drugs.

He said helping patients prepare for death was an enriching experience and doctors should not deprive people of that.

"I am not saying that people shouldn't have appropriate treatment, because of course they should," he said.

"But I'm concerned that as we get more and more options, people will forget that one of the most important things in medicine is to accept nature.

"And when enough is enough you need to address that. The issue is often with families. I've had so many conversations where I'm sure the patient wants to be left alone, to compose themselves and prepare for the end of life, but the family aren't ready to face that."

In one article in the European Journal of Cancer, palliative care expert David Jeffrey from Borders General Hospital and Ray Owen discuss the difficulties faced by doctors having to talk about death with patients and families.

"Death and dying may be viewed as medical failure and society still views these as taboo subjects," they said. "Since there is genuine uncertainty about what will happen to the individual, the issue is often left until the patient is weak and exhausted."

Like Prof Smyth, the experts say it is key for doctors to know when to stop trying new treatments.

Prof Smyth said cancer medicines were a particular challenge for NHS, as about 30 per cent of drug research focused on this area. "Research and development is expensive, so these products when they come out are very expensive," he said.

"It's no good criticising the government or the regulators.

"There are difficult questions that need to be answered and the public have to join in with these discussions."

But the research going on in Edinburgh could help reduce the costs of research and development by targeting the treatments where they are most likely to be effective.

Prof Fallon said they were in the early stages of developing a technique to predict which patients would respond to which painkillers. The trials will also mean that in future clinical trials, treatments can be taken from "bench to bedside" more quickly and cheaply.

Charities also voiced concerns about the reluctance of many doctors to accept that a patient is dying and needs a different type of care. Dr Sheila McKay, a palliative care consultant at the Marie Curie Hospice in Glasgow, said: "It is a constant frustration that doctors don't contact us earlier in a patient's care.

"Many doctors are scared to have the conversation with patients to say that the chemotherapy is not working any more, that they cannot be cured.

"In those cases they need to bring in the palliative care team to help look after the patient.

"But the doctors are systematically working away trying to cure people and find it hard to say that this is not working."

Macmillan Cancer Support also urged doctors to face up to difficult conversations with patients.

IN NUMBERS

1967
palliative care is pioneered by St Christopher's Hospice in London

200
families a year given support by the Children's Hospice Association Scotland

||1918||
Marie Curie Hospices in the UK

2 weeks
average stay at a Marie Curie Hospice

£16 million
cost of building a replacement Marie Curie Hospice for Glasgow

£5.7 million
annual cost of running St Columba's Hospice In Edinburgh

12,749
men diagnosed with cancer in Scotland in 2005

13,760
women diagnosed with cancer in Scotland in 2005

15,025
deaths from cancer in Scotland in 2006.

8
per cent – fall in cancer death rates in Scotland in ten years.

Board's decision too late for one patient

DEMAND for ever more expensive drugs on the NHS has been driven by a number of high-profile cases led by patients and their families.

Earlier this year Michael Gray and his partner Tina McGeever launched a battle against NHS Grampian after they refused to fund the drug Erbitux (cetuximab).

Mr Gray, from Buckie, Moray, had bowel cancer and funded the drug privately after it was recommended by his doctor.

Erbitux is not recommended by the Scottish Medicines Consortium for the treatment of bowel cancer because it is not deemed cost-effective.

But Mr Gray, 53, chose to pay for the drug himself, at a cost of £3,400 every fortnight.

Eventually the health board agreed to fund the treatment. But Mr Gray died in April.

Mr Gray and Ms McGeever took their fight for fairer access to cancer drugs to the Scottish Parliament and urged MSPs to make sure access was equal.

Last month Holyrood's public petitions committee demanded more clarity in how health boards decide whether cancer patients can receive drugs not on the approved NHS list, calling for action from the Scottish Government.

Ms McGeever said Mr Gray would have been delighted with the report. "It really is a legacy that Michael has left in his fight to make sure people in his position don't have to go through the same process we went through," she said.

The committee said there was concerns about the extra burden placed on patients as a result of the procedures they would have to go through to get a non-approved drug.

The report also expressed fears about the lack of clarity about co-payments on the NHS. At present such payments, which allow patients to pay privately for part of their treatment and still receive some of their care on the NHS, are banned.

Palliative care means much more than simply pain relief

PALLIATIVE is derived from the Greek word pallium, meaning cloak.

The term palliative care was first used in 1890 by Dr Herbert Snow, a surgeon at what is now known as the Royal Marsden Hospital in London.

In his book The Palliative Treatment of Incurable Cancer, he included an appendix on the use of the opium pipe.

Since then, palliative care has changed dramatically, pioneered by the launch of St Christopher's Hospice in London in 1967.

Palliative care is now described as the holistic care of patients with advanced progressive illness, taking into account all a person's needs.

This includes the management of pain and other symptoms, as well as providing psychological, social and spiritual support.

Staff working in palliative care help patients and their families have the best quality of life possible.

But palliative care is not just delivered right at the end of life, with many patients benefiting from this kind of all-round treatment much earlier in the course of their illness.

According to the National Council for Palliative Care, the aims of this form of treatment are to:

• Affirm life and regard dying as a normal process.

• Provide relief from pain and other distressing symptoms.

• Integrate the psychological and spiritual aspects of patient care.

• Offer a support system to help patients live as actively as possible until death.

• Offer a support system to help the family cope during the patient's illness and in their own bereavement.

Patients around the UK report mixed access to palliative care services.

But the NHS is increasingly investing in links with the voluntary sector to improve the care of patients approaching the end of life.



The full article contains 1718 words and appears in The Scotsman newspaper.
Page 1 of 1

  • Last Updated: 20 July 2008 11:32 PM
  • Source: The Scotsman
  • Location: Edinburgh
  • Related Topics: Cancer research
 
1

,

21/07/2008 00:14:10
Comment Removed By Administrator
Reason:
2

Charles Linskaill,

Edinburgh 21/07/2008 00:22:58

"He said helping patients prepare for death was an enriching experience and doctors should not deprive people of that."

'DONT THINK SO SOMEHOW'!

You are putting Doctors in a terrible situation!

One goes to a "Doctor" to reach for help, in this case the help for life!, and not to be helped to die!

"enriching experience" to help Death!,...

'GET REAL'! what Planet are you from,?, not ours, that's for sure!

When one's on 'Deaths Door' Yes then the Doctors should make this as peaceful as possible.

Doctors are trained to preserve Life, with all the resource's possible to them, and,..

..NOT!, "if the aspirin don't help for your Brain Tumour, I will help you die!"

Your, 'Knocking at the Wrong Door'!

Try, 'Knocking' at the Doors of The Drug Companies, that, 'ripp the NHS off'!
3

Inverie,

Fife & Toronto 21/07/2008 04:55:04
As a hospital chaplain I daily see families exhausted beyond bearing from sitting at the bedside of a patient who will never again go home, or enjoy the sunshine, or hear their grandchildren's voices . . . But the family is cannot let go and is determined to keep them alive at all costs.

It is the family who can't let go: not the patient. And the doctors respect the wishes of the person bearing the Power of Attorney and keep the patient alive with every weapon that has been developed against death.

So they do not die this day.

But death is never defeated.

They will die tomorrow or next week or next month. As individuals, we have to gain the courage to start talking about death and our wishes. We need to write out and discuss with our families and our doctors when we want them to give up the unequal fight: unless your idea of ideal death is accompanied by the constant hum and beeps and alarms of the systems that breathe for you; feed you; remove your wastes; clean your kidneys; while your body is diapered, rotated and massaged and bandaged to deal with the breakdown of your skin and all your organs until finally nothing science has yet developed can keep your rotting carcass alive.

Death is just another step in the adventure of life . . . facing our own mortality is a good place to start the discussion.
4

TAF,

USA 21/07/2008 05:36:37
"...experts are now warning that doctors must stop "just trying something else" for the sake of the health service and patients"

It is apparent that the "for the patients" was added to make the above sound less sinister...in reality, it should read "for the sake of the health service (ie: the government), we need to let the patients die. Their care is too expensive."

That's what happens when you turn over control of your health care to the government...when it looks too expensive, your life is worth nothing to the bureaucrats.

Your society is coming to an end. RIP...


5

Rulesbutnotrulers,

Federation, not separation 21/07/2008 06:47:47
Many expensive pills merely briefly delay death. Expensive treatments should be reserved for the young who have a future (when resources are in short supply).
6

Cheryl here,

21/07/2008 07:47:50
Prof Smyth says:

"But I'm concerned that as we get more and more options, people will forget that one of the most important things in medicine is to accept nature.

No, the most important thing in medicine is to value each life and it's fight for survival and remember the owth you took when you became a doctor. How do you judge when someone's life is only worth so much money? What if it were you, Prof Smyth? What's the value on your own life?

In this case, I think America has the right idea. What's wrong with "What's next?" regarding potential cures and treatments as we can all stop when we're ready and exhausted. You can never get your life back once it's gone, so it's more valuable than any bit of money.

My mother suffered ovarian cancer and with the grace of God and keen medical staff went into remission. There is a lot of cancer in my family, unfortunately...shall we all prepare to lay down and die early because of people like Prof Smyth and his pocketbook?
7

Red Tower,

Dunoon 21/07/2008 09:36:39
Six-and-a-half years ago my wife was denied a drug at the Beatson. Its name was and is Temodal. Even at that time it was seen as a drug that might prolong life, which had far fewer side effects than the others available and would make her passing far less harrowing. However her oncologist stated BLUNTLY that it was an over-hyped drug and instead gave her an older drug, Lomustine. As Lomustine's main claim to fame is its ability to visciously attack the lungs I had, during my hospital visits, to watch my dear wife give all the appearances of drowning in lung fluid. This harrowing experience went on for a month prior to her death.

RECENTLY THAT SELFSAME ONCOLOGIST HAS BEEN TELLING THE GOVERNMENT, THE PRESS AND EVERY ONE WHO WILL LISTEN THAT TEMODAL IS THE BEST COURSE OF TREATMENT FOR WHAT WAS THEN MY WIFE'S CONDITION!!! IT HAS TAKEN HIM YEARS APPARENTLY TO CATCH UP WITH MEDICAL RESEARCH.

THE FACT IS THAT ALL THE EVIDENCE THAT TEMODAL WAS AN EFFECTIVE DRUG WAS THERE SIX-AND-A-HALF YEARS AGO.

In passing Temodal was discovered by British doctors and its use is widespread throughout the world. In America it is marketed as Temodar.

Here in Britain Temodal is still difficult to obtain and its uses are strictly curtailed by this government's healthcare-rationing authority, the cynically-named National Institute of Clinical Excellence, NICE.

AND WE WONDER WHY OUR CANCER SURVIVAL RATE IS AMONG THE WORST IN THE WESTERN WORLD!



8

WKKB,

21/07/2008 10:03:44
#9 said "constant hum and beeps and alarms of the systems that breathe for you; feed you; remove your wastes; clean your kidneys; while your body is diapered, rotated and massaged and bandaged to deal with the breakdown of your skin and all your organs until finally nothing science has yet developed can keep your rotting carcass alive."

Can I just say this is the description of my poor mother's last 2 weeks. She went to dialysis one morning, her blood pressure dropped so low her heart stopped for just a few seconds. The machine alarmed the tech who started Mom's heart. She was sitting up talking but proceedure said they had to take her to hosp to be monitored so they did. A few days later we were told she'd picked up the MRSA bug and would have to stay in hospital... 3 months later she was being lowered into the ground in the cemetary across the street from her childhood home.

The sad thing is that if she hadn't gone into hospital she may very well be here today with her new kidney. She was only a few weeks away from a transplant...

We turned to palletive care because we realized that was her only option for no pain as she passed.

The Dr kept telling us she may not be able to return home but we could put her into a care facility. Mom wouldn't have liked that at all and since she could hear conversations I'm sure she chose to leave before we had to make that decision.

However.... My friends husband who had cancer did push for the next and the next until finally they found a treatment that prolonged his life by 5 years. Long enough to see his daughter marry and his first grandchild born. Sometimes the next treatment just might be the one but families do need to know when it's time to stop looking.
9

antifa,

21/07/2008 12:10:33
"That's what happens when you turn over control of your health care to the government...when it looks too expensive, your life is worth nothing to the bureaucrats."

Unlike the insurers, eh? You must be joking. These are doctos by the way, not bureaucrats.

Instead of coming up with embarassing nonsense like this, why not actually do a bit of research first?

You will find that the US has the world's most expensive healthcare system (it spends about twice the proportion of GDP on it as we do) and has some of the worst outcomes in the industrliased world, not to mention 40 million uninsured.

You spend a higher proportion of GDP on the publicly funded parts of your system (which cater for the elderly and the very poor) than we do on the entire NHS, which covers everybody.

My friend, no-one here would swap our system for yours, and we have reason on our side.
10

TimW1234,

Ottawa, Canada 21/07/2008 12:25:37
Horrible Cankers

Good morning, madam, and also to you Charles Linskaill

This is a difficult situation - whether to ease the cancer patient into a palliative care situation or, if young enough and strong enough, put them on medication -sometimes very expensive - that may save their lives and bring them back into a productive state of life and livelihood.
11

JohnBowes,

21/07/2008 12:28:41
Would these people say the same thing if it was their dad or mum or their child who was dying? EH?

So its enriching to die? AND become incontinent so on? EH?

12

JohnBowes,

21/07/2008 12:29:54
Tim says,

that may save their lives and bring them back into a productive state of life and livelihood.

Aye right. So how oft does that happen? WE all must kick the bucket mate.
13

TimW1234,

Ottawa, Canada 21/07/2008 12:54:05
18 John Bowes

But if the cancer patient is young enough and strong enough to survive the cancer treatment he or she can go on to have a civil union or marriage, have a family, finish university, get a job, contribute to Scottish society,and hopefully lead a healthy and happy life be itfor another 50 or 60 or 70 years.

Of course we all have to meet the Grim Reaper one day but it is life-enhancing to allow certain expensive cancer cures to allow some humans to express their God-given potential.
14

Smutley,

Embra 21/07/2008 13:55:16
JohnBowes, of course, if it was us personally, I think we would all want to do everything we could for our relative or self.

Does that mean the NHS has to pay for everything? Unfortunately, it can't, and so there needs to be a debate about exactly this sort of issue. What are you going to cut to pay for it?

And as soon as we start asking that, we need to know exactly how much benefit we're getting from each specific new drug. Unforunately, that takes time and I think it causes a lot of anger and resentment.

We need to be a bit less angry with people who have to deal with these really tough issues on a daily basis. OK, there are going to be some cases where people's care isn't up to standard, but let's not take it out on the majority of the carers who ARE up to speed and DO provide the best care possible.
15

Smutley,

Embra 21/07/2008 13:56:33
Just to be clear, I wasn't accusing you of being "angry", JohnBowes, just making a general point.
16

Regret,

21/07/2008 14:01:25
#9 You are not right with all by saying this: "It is the family who can't let go: not the patient."

Cancer can be relentless but a patient may be determined to live out as many days as possible.

My mother's sister was lucky, diagnosed with ovarian cancer early, a quick surgery and treatment, she is alive today after over 20 years!

Ten years ago, my mother was diagnosed with ovarian cancer too. But mother was not as lucky as her sister. She went through two surgeries and two chemotherapies the last one was given so strong and with not enough fluids and it literally burnt up her kidneys and she ended up on dialysis. (Mom too had an episode like #15's mom after a dialysis - but went home).

Even from the beginning, every time she went to hospitals, they would ask her for a DNR Do Not Resuscitate - my mom was wise enough to say NO. She wanted to live even if others did not want to see her continue. I always thought a DNR was only something for after a person died naturally, now I know different. It can be a "flag" for some in "health care" to hurry along or create a person's end.

Also, from the beginning, they wanted to give her new and experimental drugs, but she said she only wanted the drugs that had proven to work for her type of cancer.

All throughout her illness she wanted to be treated as a patient, she always wanted to live. There were many times in hospital that she went down hill and could have died. Sedatives and drugs can make a person look and be worse than what they truly are. My dear sister was smart, reviewed mom's type of care and used the NO word often.

Many times proved the best place for mom to be was at home - or later when mom got so weak and could barely walk, was in my sister's home (she had a down-stairs bathroom).

She died there on her granddaughter's fifth birthday.

If #9 had seen my mother in hospital on those numerous times over those years, he would have thought for us to put her out of her misery.
17

Regret,

21/07/2008 14:02:38
But mom always bounced back and went home and enjoyed each and every day as much as possible with the sun shining through the window, having home cooked food, talking with family and holding her grandchildren.

I night before she died, she had to go to hospital for a scan of her head. On the way back home it was dark and Mom enjoyed seeing the Christmas lights and baby Jesus in a manger.

In the middle of the night after going to the bathroom and returning to bed, something burst - the cancer had spread.

No one should impose death on another nor anything else. People should not assume that one is suffering just because they themselves are uncomfortable viewing the situation.

People should write down how they would like to be treated if they can not communicate, but remember - when a person can not communicate is when the ones who want to see the person dead will have the greatest power over the vulnerable uneducated family. Drugs can be given to make the person worse and hasten or cause death while health care people say it is for comfort or whatever.

It has become a sad world. All we need is honesty. But do certain ones in power in the health care industry love control so much as to impose death on whom they choose? It is not their right to choose death for another - but they will if you do not catch on to their game.



18

Red Tower,

Dunoon 21/07/2008 15:20:20
#17 Before we get into a debate about whether or not the NHS can afford to pay for cancer treatment i.e. whether or not the nation can afford to pay for cancer treatment, we should ask many other questions. For example can we afford to replace Trident? Can we afford to participate in illegal wars? Can we afford to expand colleges that churn out worthless degrees? (e.g. 20% of those qualifying from Glasgow School of Art cannot find work and less than 20% can get jobs that are even peripherally related to Art.) Can we afford to let MPs vote themselves expensive perks? The list is endless. But all need to be answered before we talk of withdrawing funds from Cancer treatment.

No, there are a lot of questions that need to be answered
19

Kitti Kat,

PA 21/07/2008 19:26:24
I pray to God that we NEVER get a national health system where some doctor, politician, bureaucrat, etc. can decide to with-hold any drug that may lengthen my time on earth.Since Prof. Smyth hates America because of our methods for treating cancer patients, for heavens sake KEEP him over there and don't let him set foot here. It should be the patient and doctor who decide, the PATIENT always given the right to either take a new drug or not to. Yes, I may be a wimp who doesnt ' want to "go" - who really does? However, I should be the one to decide when to stop or take drugs that may buy me some time.
20

Poetess50,

21/07/2008 20:19:59
TAF:
Antifa is right. And I say this as an African-American who left the US to move the UK 6 years ago. I had a good job in the States, with health insurance, but you will know the American system of health insurance DOES NOT COVER EVERYTHING, and the co-pays for treatement & prescriptions were outrageous. I've had 2 serious illnesses back-to-back since I moved to the UK, and my care was not only stellar, it was FREE. Unlike the US, where they shuttle you around if you can't produce that coveted health insurance card. And again - unlike the US - I was treated with dignity & compassion, I was listened to, which doctors in the US don't tend to do if you're black. Read the studies on the disparities in health care for black & white Americans. I can honestly (& happily) say I've experienced none of that BS on this side of the pond!
21

,

21/07/2008 23:10:53
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,

21/07/2008 23:18:02
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,

21/07/2008 23:24:16
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portnoi,

Wetaskiwin 22/07/2008 05:52:04
When will the health profession stop the nonsense of taking away hope. Teach people how to live with cancer, not how to die, dying takes care of itself. it would be a whole different story if they were the one with cancer.Koebler-Ross did no one a favor with her stages of dying, she in the end succumbed to cancer. With hope people have had miraculous cures, I have witnessed a few.

 

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