Tuesday, 20 November 2012

Where does the Pathway lead?

There are concerns in Jersey over a controversial end-of-life care system, where dying patients are denied food and water for days.  The Liverpool Care Pathway is a recognised model of care during the final stages of life, designed to ease suffering. But in the UK, many families have spoken out against the Pathway, saying they were not informed that their relative had been put on the regime. Now some Islanders are criticising the method of care as cruel and unethical.

Islander Alan Booth says doctors forced his wife, Sue, to die, by withdrawing food and water for two days, without the family's consent. Although Sue had battled breast cancer for 7 years, she'd been told her cancer was under control. Alan Booth says, "The doctors murdered my wife. She didn't die naturally, she didn't die of cancer. She was put on a Pathway which is designed to kill. That was professed to be 'care'." "Her lips were dry and cracked and her tongue was completely solid - she was completely dehydrated. It was very disturbing to see her like that." Although the words Liverpool Care Pathway were not used by doctors in this case, withdrawing food and water is a common method of that system. The Health Minister says she cannot comment on individual cases - but she does say the Pathway regime would never be used without the consent of family members. (0)

But it has been used without consent of family members, and that's clear from evidence emerging in the UK. Why should Jersey be immune?

There are lost of conflicting reports about the LCP, with various cases such as that cited about showing that the care is not what people might expect. The Telegraph reports that:

Some 1,300 have signed a letter in support of the procedure, which is meant to help staff give terminally ill patients the most comfortable last few days of life. (1)

But there are clear problems over informing relatives about this, which doesn't surprise me, as the above anecdote shows that the procedure can be very distressing to family members. Whether or not it helps the patient, the need to press ahead may lead to shortcuts being taken, and it's not the first time this kind of practice happens:

The Liverpool Care Pathway was developed in the 1990s by Marie Curie Cancer Care for terminally ill cancer patients. It has been adopted for use in general hospitals and rolled out rapidly throughout the NHS. However, an audit by Marie Curie and the Royal College of Physicians last December found in six per cent of cases, patients or their families were not told of the decision to use the LCP. (1)

And of course, there is also an incentive to hospitals in terms of financial rewards, which is never a good thing:

During the recent debate it has also emerged that most hospitals in England are being given financial rewards worth millions of pounds to place patients on the LCP, a situation described as "absolutely shocking" by critics. However, many doctors say these incentives are merely a reflection of how the NHS works and nothing more sinister. (1)

"A reflection of how the NHS works" seems a very poor answer to this kind of practice!  The drive for the MMR, whatever you may think of the controversies which surrounded that, was also driven by financial rewards.

Tunbridge Wells Community Health Council in Kent found that, while the doctors supported parents' right to refuse the controversial triple jab, they feared failing to meet official targets on vaccination would mean a loss of income that could have a serious impact on their practices....GPs earn higher payments for immunisation, but only if 70 per cent of their child patients are given the full range of vaccines, including MMR. (2)

It certainly seems a very bad practice to do this. After all, if a medical practice is a good one, shouldn't that be sufficient reason for doctors to want to do that? It would seem proper to ensure that if the practice is more expensive than its alternative, then some kind of recompense be provided so that doctors do not decide on the matter of cheapness, but on what is best. In the case of the MMR, however, the inducement was for a triple jab which was clearly more financially cost effective than the single jabs, so that certainly didn't apply. The ethics of providing an incentive is very shady indeed.

What of the LCP? The danger is that parts of it can be taken - including overlooking family consent - because it is a cost effective option which gives hospitals extra funds by its use.  In other words, what is set out in principle to help patients and their families may mutate into a practice which takes those parts that are easy to follow, but ignore those parts which are just as important, but harder and more costly. What started off with the most noble of intentions can become a way of easing the elderly who are dying out of hospitals to gain more bed space. A cancer specialist has made this criticism:

Professor Mark Glaser said the pathway - in use across the NHS as a way to ease the suffering of the dying - is employed by Health Service managers to clear bed space and to achieve targets that bring more money to their hospitals....'It's not really active or passive euthanasia, it's negligence. But it is right that all the managers want the bed space and they will take down drips weeks earlier to get people out. That is a scandal.' (3)

It is in many ways, a slippery slope to euthanisia, as many patients die soon after being put on the LCP:

A centrepiece of the NHS programme for 'end-of-life care', it involves removing life-saving treatment from patients considered to be dying. Commonly, patients are heavily sedated and tubes providing nutrition and fluid are removed. Typically a patient dies 29 hours after being put on the pathway. But families have complained that loved ones have been put on the pathway when they were not dying and senior medical figures have said it is impossible to predict when a patient will die. (3)

Writing in "The Human Life Review", Wesley Smith looked at some of the statistics involved:

16.5 percent of patients who died in 2007-08 expired while under "continuous deep sedation," i.e., an artificial coma. That figure struck me as exceedingly high. I have spoken to several hospice professionals about "palliative sedation," as it is sometimes called, and all claimed that it is rarely necessary to treat pain or to relieve other distressing symptoms. And in those few cases in which a patient must be rendered unconscious, the measure is undertaken so late in the disease process that it is generally not the cause of death.(4)

This raises the suspicion that more dying patients are rendered unconscious in the U.K. due to the Pathway than would be warranted if each patient were treated based on his symptoms. If so, the Pathway protocols may be being applied in some cases without regard to proper proportionality of dosing based on each patient's need, and without adhering to Hippocratic standards of individualized care - both of which are important ethical concerns. Indeed, this practice raises the suspicion that the Liverpool Care Pathway may have become a platform for backdoor euthanasia. (4)

He also raises the spectre, which anecdotal cases demonstrate to be the case in some instances that "while it is suitable for patients who do have only days to live, it is being used more widely in the NHS, denying treatment to elderly patients who are not dying."

In September this year, a very prudent call for investigation was made by the Archbishop of Southwark who wrote to the Secretary of State for Health urging him to launch a "thorough and urgent investigation" into the controversial care pathway:

"It does seem to me that a thorough and urgent investigation needs to take place, examining the evidence on which the criticisms that have been made of the LCP rest, so that conclusions can be reached as to whether any corrective action is needed." Archbishop Smith added: "If the allegations that are being made can be substantiated, there is serious cause for concern either that the LCP is in some way structurally unsound and needs to be modified or that some doctors and nurses are failing to implement the guidelines as intended. "Equally, if the allegations are without substance, dying patients and their loved ones are at risk of being caused needless anxiety as a result of which they may well seek to avoid treatment and care from which they would benefit."(5)

And Dr Anthony Cole, the Catholic chairman of the Medical Ethics Alliance, said: "The LCP is inherently hazardous and it is also unnecessary. Excellent end of life care can be delivered without referring to the LCP framework. It is time for an inquiry by the Department of Health into how the LCP is actually operating."

In October 2012, the Department of Health rejected the Archbishop's call for an enquiry issuing a bland restatement that nothing was wrong, and the LCP was best practice. But in November 2012, barely one month later, in a U-turn typical of the UK Goverment, Jeremy Hunt ordered an inquiry into the Liverpool Care Pathway, and says patients and relatives must be consulted. Heather Richardson, a supporter of the LCP says she:

 "believes that the LCP has played an important role in improving the experience of people who are dying and we support the use of this tool where staff have been trained appropriately in its application. (6)

But as William Oddie, writing in the Catholic Herald points out, "where staff have been trained appropriately in its application" is something that is very questionable at the moment.

There are also serious concerns raised by the Medical Ethics Alliance. They say that "The Statement supporting the Liverpool Care Pathway from the National End of Life Programme was published under multiple signatories. We have a number of serious reservations and questions about the working of the Liverpool Care Pathway." Among other matters they note the following:

"The Liverpool Care Pathway .is not a treatment".

This statement belies what actually happens once a patient is signed up onto the LCP. The fact that morphine, midozelam and glycopyrrolate are prescribed makes the LCP a treatment protocol.

  "The Liverpool Care Pathway .is.a framework for good practice."

In the twenty-first century all good clinical practice is evidence based. Good clinical practice has always traditionally involved a close doctor-patient relationship  and the management of symptoms in the best interest of the patient, as and when they arise. The LCP is more than a framework. It is a pathway that takes the patient in the direction of the outcome presumed by the diagnosis of impending death. The pathway leads to a suspension of evidence based practice and the normal doctor-patient relationship

"The Liverpool Care Pathway does not..hasten death."

It is self evident that stopping fluids whilst giving narcotics and sedatives hastens death. According to the National Audit 2010-2011, fluids were continued in only 16% of patients and none had fluids started.

The median time to death on the Liverpool Care Pathway is now 29 hours. Statistics show that even patients with terminal cancer and a poor prognosis may survive months or more if not put on the Liverpool Care Pathway.

Your statement fails to mention the relief of symptoms at all. We think this is a serious omission. The question of consent is not mentioned either. (7)

And Dr Anthony Cole, Chairman Medical Ethics Alliance, writing to the BMJ notes:

An open letter to NICE calling for central monitoring of complaints from relatives over the implementation of the LCP was not even acknowledged.  Blanket assurances that the it conforms with "gold standards" or "quality statements" will no longer suffice. It clearly does not do so. (7)

(0) http://www.channelonline.tv/channelonline_jerseynews/DisplayArticle.asp?ID=502468
(1) http://www.telegraph.co.uk/health/healthnews/9659561/Doctors-defend-Liverpool-Care-Pathway-as-dignified-way-to-die.html
(2) http://www.dailymail.co.uk/health/article-156664/Children-parents-refuse-MMR-jab-dropped-GPs.html
(3) http://www.dailymail.co.uk/news/article-2227863/Cancer-expert-treated-Mo-Mowlam-brands-Liverpool-Care-Pathway-corrupt-practice-British-medicine.html
(4) Hazardous Pathway, Wesley Smith,  The Human Life Review. Volume: 35. Issue: 4 Publication date: Fall 2009.
(5) http://www.catholicherald.co.uk/news/2012/10/19/state-rejects-archbishops-call-for-review-of-care-pathway/
(6) http://www.catholicherald.co.uk/commentandblogs/2012/11/09/jeremy-hunt-orders-an-inquiry-into-the-liverpool-care-pathway-and-says-patients-and-relatives-must-be-consulted-but-will-the-doctors-pay-any-attention/
(7) http://www.medethics-alliance.org/

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