Sentenced to death on the NHS

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**Frazzled**

http://www.telegraph.co.uk/health/healthnews/6127514/Sentenced-to-death-on-the-NHS.html

Sentenced to death on the NHS
Patients with terminal illnesses are being made to die prematurely under an NHS scheme to help end their lives, leading doctors have warned.

By Kate Devlin, Medical Correspondent
Published: 10:00PM BST 02 Sep 2009

Comments 62 | Comment on this article

Under the guidelines the decision to diagnose that a patient is close to death is made by the entire medical team treating them, including a senior doctor Photo: GETTY
In a letter to The Daily Telegraph, a group of experts who care for the terminally ill claim that some patients are being wrongly judged as close to death.

Under NHS guidance introduced across England to help doctors and medical staff deal with dying patients, they can then have fluid and drugs withdrawn and many are put on continuous sedation until they pass away.

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As a result the scheme is causing a “national crisis” in patient care, the letter states. It has been signed palliative care experts including Professor Peter Millard, Emeritus Professor of Geriatrics, University of London, Dr Peter Hargreaves, a consultant in Palliative Medicine at St Luke’s cancer centre in Guildford, and four others.

“Forecasting death is an inexact science,”they say. Patients are being diagnosed as being close to death “without regard to the fact that the diagnosis could be wrong.

“As a result a national wave of discontent is building up, as family and friends witness the denial of fluids and food to patients."

The warning comes just a week after a report by the Patients Association estimated that up to one million patients had received poor or cruel care on the NHS.

The scheme, called the Liverpool Care Pathway (LCP), was designed to reduce patient suffering in their final hours.

Developed by Marie Curie, the cancer charity, in a Liverpool hospice it was initially developed for cancer patients but now includes other life threatening conditions.

It was recommended as a model by the National Institute for Health and Clinical Excellence (Nice), the Government’s health scrutiny body, in 2004.

It has been gradually adopted nationwide and more than 300 hospitals, 130 hospices and 560 care homes in England currently use the system.

Under the guidelines the decision to diagnose that a patient is close to death is made by the entire medical team treating them, including a senior doctor.

They look for signs that a patient is approaching their final hours, which can include if patients have lost consciousness or whether they are having difficulty swallowing medication.

However, doctors warn that these signs can point to other medical problems.

Patients can become semi-conscious and confused as a side effect of pain-killing drugs such as morphine if they are also dehydrated, for instance.

When a decision has been made to place a patient on the pathway doctors are then recommended to consider removing medication or invasive procedures, such as intravenous drips, which are no longer of benefit.

If a patient is judged to still be able to eat or drink food and water will still be offered to them, as this is considered nursing care rather than medical intervention.

Dr Hargreaves said that this depended, however, on constant assessment of a patient’s condition.

He added that some patients were being “wrongly” put on the pathway, which created a “self-fulfilling prophecy” that they would die.

He said: “I have been practising palliative medicine for more than 20 years and I am getting more concerned about this “death pathway” that is coming in.

“It is supposed to let people die with dignity but it can become a self-fulfilling prophecy.

“Patients who are allowed to become dehydrated and then become confused can be wrongly put on this pathway.”

He added: “What they are trying to do is stop people being overtreated as they are dying.

“It is a very laudable idea. But the concern is that it is tick box medicine that stops people thinking.”

He said that he had personally taken patients off the pathway who went on to live for “significant” amounts of time and warned that many doctors were not checking the progress of patients enough to notice improvement in their condition.

Prof Millard said that it was “worrying” that patients were being “terminally” sedated, using syringe drivers, which continually empty their contents into a patient over the course of 24 hours.

In 2007-08 16.5 per cent of deaths in Britain came about after continuous deep sedation, according to researchers at the Barts and the London School of Medicine and Dentistry, twice as many as in Belgium and the Netherlands.

“If they are sedated it is much harder to see that a patient is getting better,” Prof Millard said.

Katherine Murphy, director of the Patients Association, said: “Even the tiniest things that happen towards the end of a patient’s life can have a huge and lasting affect on patients and their families feelings about their care.

“Guidelines like the LCP can be very helpful but healthcare professionals always need to keep in mind the individual needs of patients.

“There is no one size fits all approach.”

A spokesman for Marie Curie said: “The letter highlights some complex issues related to care of the dying.

“The Liverpool Care Pathway for the Dying Patient was developed in response to a societal need to transfer best practice of care of the dying from the hospice to other care settings.

“The LCP is not the answer to all the complex elements of this area of health care but we believe it is a step in the right direction.”

The pathway also includes advice on the spiritual care of the patient and their family both before and after the death.

It has also been used in 800 instances outside care homes, hospices and hospitals, including for people who have died in their own homes.

The letter has also been signed by Dr Anthony Cole, the chairman of the Medical Ethics Alliance, Dr David Hill, an anaesthetist, Dowager Lady Salisbury, chairman of the Choose Life campaign and Dr Elizabeth Negus a lecturer in English at Barking University.

A spokesman for the Department of Health said: “People coming to the end of their lives should have a right to high quality, compassionate and dignified care.

"The Liverpool Care Pathway (LCP) is an established and recommended tool that provides clinicians with an evidence-based framework to help delivery of high quality care for people at the end of their lives.

"Many people receive excellent care at the end of their lives. We are investing £286 million over the two years to 2011 to support implementation of the End of Life Care Strategy to help improve end of life care for all adults, regardless of where they live.”

**Wrexasaur**

I am not going to say this is not true, but I am very skeptical about how it was spun.

Anyway, the public option is officially dead, and I no longer trust the current administration to know their ass from their head (insert political and corporate sponsorship here) , let alone fix anything... so the republicans won I guess. TKO!!!

I would like to see other views on this one though.

**Khornholio**

Ironic considered the right kerfuffle of Diane Pretty a few years back.

**Lapsed Pacifist**

Terrible article, some good comments:

"Sensationalist and one eyed headlines certainly sell newspapers. And the concerns were raised quite legitimately by a group of caring and knowledgeable clinicians. However, we need some balance here. I am a doctor working daily in the NHS with frail, vulnerable and often terminally ill people. Of course we should not be "writing off" patients who actually have treatable conditions. However, it is an unfortunate fact of life that many people do come into hospital close to the end of life with one or more end-stage conditions. When it is clear that someone is dying, all the evidence from work with older people themselves and their carers has shown that they want full and frank information, some choice and control and most of all they want to die free of pain and distressing symmptoms. The introduction of the end of life care strategy and the LCP has in my experience over a career of twenty years or more done more than anything to improve access to good end of life care and symptom control for older people and for those who dont have cancer. In short, it has done a great deal of good. The last thing anyone needs when they are dying is endless observations, blood tests, drips and investigations. They need a clear decision that the time is right to focus on their comfort and dignity. Most of us would hold up hospice care as a "gold standard" of good end of life care and the LCP attempts to introduce the same principles to hospitals. It has done a lot more good than harm. Whereas this article and headline will do a lot more harm than good by preventing people from receiving proper palliation or adequate and honest discussions about outlook. There are two slides to any moral slippery slope. The headline runs a risk of depriving people who really are dying from having a good death. Lets have some journalistic balance next time"

and

"Would this story be headlined & written as it is if it hadn't been for Sarah Palin's 'death panels' comment. I don't think so. It's shamefully overstated & is clearly targeting an online, American audience who are against Obama's health reforms instead of addressing UK readers. It's now being used widely to run down the NHS. Is that what Daily Telegraph editors wanted - I suspect yes.
The doctors are making a perfectly valid point about a very difficult area of clinical care, that of dealing with patients who are very close to death. This is common to all health systems. Sigh...I could go on, but the ridiculous distortions that are being bandied about about health care in the UK and US at the moment are just tiresome."

**Kilkrazy**

This was on Radio 4 this morning.

The professor had a valid point, which is that a clinical system designed for use in one situation should not be rolled out to a lot of other situations as a kind of car maintenance checklist.

Of course, a right-wing audience is meant to fixate on the misleading headline and go Social Healthcare = Teh Bad and ignore the points that the criticism of the system is coming from within the NHS, and that other social health services (Holland, Belgium) do not operate the same system.

**Polonius**

The actual article seems to state that while there was a protocol under which doctors were recommended but not mandated to remove medical care from immediately terminal patients they are now being recommended to not rely solely on suck a check list.

I guess I don't see any problems. End of life care is a touchy subject, and there are so many competing pressures: the wishes of the dying, the chances of actual recovery, the wishes of the family, and yes, cost issues.

Every family (except old money, I suppose) probably can remember a few generations back when medical decisions were made based on economics, or at least the chance of recovery was deemed too low to justify further resources spent.

That decision still needs to be made by the those footing the bill. The great risk with all socialized programs is that if there is no cost, there is no reason not to use it. You can talk about rationing and death panels all you want, but It's simply bad policy to dump money into terminal patients after a certain point. There's no set time to make that determination, but expecting every possible resource to be spent keeping the terminal alive is unwise, in my opinion.

**smiling Assassin**

Isn't that the utilitarian truth of the matter? Isn't that the glaringly obvious?

Patients who have little/no chance of recovery will be sidelined.

sA

**dogma**

Well, that was anti-climactic. I read the head line and expected to be annoyed, and then I read the article and discovered a well-reasoned attack on check-box medicine.

The author didn't even attempt to draw the conclusion that the NHS should be abolished. The only time they chose to make a comparative statistical reference the line was drawn between the two best national health systems in Europe.

In 2007-08 16.5 per cent of deaths in Britain came about after continuous deep sedation, according to researchers at the Barts and the London School of Medicine and Dentistry, twice as many as in Belgium and the Netherlands.

Automatically Appended Next Post:

Polonius wrote:There's no set time to make that determination, but expecting every possible resource to be spent keeping the terminal alive is unwise, in my opinion.

And morally questionable. For every story about a person who gets taken off care prematurely, there's another about an individual being denied the right to refuse care; especially in the absence of a living will.

**Polonius**

I know it's one of the more conentious parts of the the health care proposals here, but giving people information about death and dying and the costs and the benefits would be helpful.

It's one thing for a doctor to tell a family that their relative has a small chance of recovery, it's another if they know that that the resources used to persue that recovery could be used in other ways.

I'm not sure I'd want that laid on people in the moment (nobody wants to decide on care for a loved one while guilted about how many vaccinations the money saved could buy), but if people simply knew the costs it might have an impact.

**Kilkrazy**

Out of interest, what happens in such cases in the USA?

I know there are no death panels. Are terminal patients life supported until the money runs out?

**Polonius**

Kilkrazy wrote:Out of interest, what happens in such cases in the USA?

I know there are no death panels. Are terminal patients life supported until the money runs out?

Well, not really.

No hospital can deny care based on an inability to pay. They can try really hard not to, but if you're dying in a hospital and are broke, they will do whatever they can to keep you alive. They bill what they can to medicare (elderly health care) or medicaid (poverty health care), but the rest is simply eaten by the hospitals. Now, absent a family or insurance, it's unlikely that the indigent are going to get every possible bit of care, but they are cared for. The default rule is to administer medical care unless directly told not to be the next of kind (or a person with durable power of attorney for medical care).

If that all sounds like socialized health care to you, you're not alone. It's here, it's just very scattered and ineffecient.

**Kilkrazy**

What happens if your family has heaps of cash? Does the hospital just spend all the money until it's gone, then put you on the cheapo plan?

**Polonius**

Kilkrazy wrote:What happens if your family has heaps of cash? Does the hospital just spend all the money until it's gone, then put you on the cheapo plan?

In the short term, there really is no cheapo plan. In the long term, things get more complicated, because a person that has a long term disability will qualify for social secuirty, the elderly all have Medicare which covers 80"% of care, and medicaid helps the poor, including elderly with the last 20%.

What this means is that the people that get screwed most under the current system are those people that are young, without disabilities, lack health insurance, but have incomes and/or assets. So, if you're kid is hurt, and you either don't have insurance or you've maxed out your plan, yes, the expectations is that you drain your resources before you get any real assistance.

**Wrexasaur**

Dogma wrote:And morally questionable. For every story about a person who gets taken off care prematurely, there's another about an individual being denied the right to refuse care; especially in the absence of a living will.

I would call a 1:1 ratio just a teency bit hyperbolic

.

In all honesty, we live on a rock... and we have the ability to do some relatively amazing things. In a perfect world (a possible world) these problems would not be much of an issue. You still cannot deny the fact that some people are just going to die, that does not mean they deserve to by ANY stretch of the imagination. Beyond this we all die, it is one of the more comforting facts that life can offer you directly, coming to grips with that is the only way to solve this problem.

You can throw money at a poodle, but making a great dane requires more than a poodle and a bit of cash.

**dogma**

Wrexasaur wrote:
I would call a 1:1 ratio just a teency bit hyperbolic .

It happens more often than you'd think. There isn't as much hoopla surrounding it because "Man wants to die, doctors won't let him" doesn't have the evil overlords vibe that everyone loves so much. Though if you think back to Kevorkian and the euthanasia issue the comment starts to seem more balanced.

There's also the Christian bias against suicide.

**Wrexasaur**

Do doctors have the right to force people into spending their life savings trying to live an extra week? This is on the extreme of course, but those kind of actions can utterly destroy entire families.

Everyone has the right to die with dignity, and I think this is about as far as I can go without sounding like a terrible monster. On the other end of the spectrum people do have the right to try and stay alive, but limits on this are obviously linked to the ability to actually do so.

If I were a vegetable, I could care less what happens to my body (just bury it at some point please

). In earnest, I see no point in spending money on myself when that same money could be used to help hundreds of children fight off a cold that could actually kill them; or provide sex-education to areas stricken by poor parenting and crime. The same amount of money could buy someone a house, or keep an entire family fed in a third world country with thousands to spare. The same amount of money could be used to save baby seals and the like... you get the point.

Preventative healthcare is by far superior than extended life care and the like. Besides preventative being an action we all take subconsciously AND by choice, I see no better way to apply resources in a medical economy.