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William Oddie FAITH Magazine January-February 2013

Dignified Dying: Formula or Friendship?

Recent discussions about the so-called Liverpool Care Pathway have raised questions for Catholics, not about whether or not the LCP is being used by some practitioners as a sort of euthanasia by the back door (since it looks to me as though in some cases it clearly has been), but about how exactly we are to confront it. A plausible case can be made for it. Some of its defenders are undoubtedly decent and compassionate people. The LCP is intended, so they say, to ease the last hours of dying patients to save them the suffering caused by invasive treatment. One defender, on the Today programme, claimed, with every appearance of sincerity, that they are simply doing what the hospice movement does: this is the introduction of real palliative care into the geriatric mainstream.

Its critics say that it is a way of hastening patients' deaths: and the evidence really does seem to be that this is often the case. Typically, it involves patients being sedated and then denied nutrition and fluids by tube. There are around 450,000 deaths in Britain each year of people who are in hospital or under NHS care. About 29 per cent - 130,000 - are of patients who are on the Liverpool Care Pathway (LCP).

According to Professor Patrick Pullicino, far too often elderly patients who could live longer are placed on the LCP which has now become, he says, an "assisted death pathway" rather than a "care pathway". He cited pressure on beds and difficulty in nursing confused or difficult-to-manage elderly patients as factors. He has also recounted how he has personally intervened to take patients off the LCP who later went on to be successfully treated.

Now, another ingredient has been introduced into the mix: a financial incentive for hospitals to get as many elderly patients as possible on to the LCP. In some cases, it is claimed, hospitals have been set targets that between a third and two-thirds of all deaths should be on the pathway. It is also alleged that at least £30m of taxpayers' money has been given to hospitals over the last three years to achieve this objective. Professor Pullicino comments: "Given the fact that the diagnosis of impending death is such a subjective one, putting a financial incentive into the mix is really not a good idea and it could sway the decision-making process."

There can be little doubt that some patients have not in fact been dying at all when they were put on the LCP and that they have then been starved and dehydrated to death as a result. We know, because of those who somehow escape, usually as a result of their relatives' horrified intervention (that is also how we know how often old people are put on the death list without consultation). Consider the story of 82-year-old Patricia Greenwood, who was put on the Liverpool Care Pathway by doctors in Blackpool, who removed all her feeding tubes and drips. Then her family, who had not been consulted, gave her water, which effected the beginning of a remarkable recovery. Now she is planning to go on a world cruise.

The excellent Melanie Phillips recently wrote a piece [http://www.dailymail. co.uk/news/article-2225009/The-medical-professions-lethal-arrogance-Liverpool-Care-Pathway.html] questioning the LCP. She had received many letters, containing alarming accounts of what had happened to elderly relatives. "One woman, for example, wrote that her father suffered a severe stroke caused by a blood clot in his brain. 'All fluids were removed from him and we were told he was in the final phase of his life,' she wrote.

"'All we were told was that there was no hope for him; it was a matter of time before he died. Eight days later,
he opened his eyes and proved everyone wrong by pulling round. Two years on from this he is back at home, although in a wheelchair and with some loss of speech.'

"Another woman's 85-year-old mother was admitted to hospital with an infected gall bladder. The following day doctors told her, to her shock, that her mother was gravely ill and had no chance of survival. The doctors, who included three consultants, told her that if she did not agree to the Pathway she would be adding to her mother's distress and misery. She signed the form - only to be horrified subsequently to find her mother highly disorientated, agitated and distressed from lack of fluids and treatment.

'"I compelled the nursing staff to restore hydration and medications, or take full responsibility for the outcome if they failed to. I also took matters into my own hands by feeding her natural yogurt, soft foods and spooning water into her - something which was to continue until she was released three days later, having been restored to full health, cracking jokes and saying goodbye to those who were unfortunately left probably to suffer the same fate."

Is Melanie Phillips simply being sensationalist? She has been accused, she says, by more than one doctor of "deliberately sensationalising the issue in order to sell newspapers". To that "cynical end" she had "set out to terrify dying patients and their relatives". There are also genuine palliative care specialists who think that some press coverage has been sensationalist, so here, in the interest of fairness and balance is Heather Richardson, of the organisation Help the Hospices.

Ms Richardson says [http://www. helpthehospices.org.uk/media-centre/ press-releases/hospice-care-and-the-liverpool-care-pathway/ ] that "recent media coverage around a small number of distressing stories has been sensationalist and at times inaccurate", and that "it risks causing unnecessary distress to people at one of the most vulnerable times in their lives and may even prevent people from receiving the care that they need".

Maybe she is thinking of apparently sensationalist headlines like "Three thousand doctors putting patients on death lists that single them out to be allowed to die". Read the article itself [http://www.dailymail.co.uk/health/ article-2219351/Three-THOUSAND-doctors-putting-patients-death-lists-single-allowed-die.html] and see what you think. It all looks believable enough to me.

It also has to be said that though Heather Richardson is herself clearly bending over backwards to be fair to the LCP, what she says at greater length doesn't look as though she is wholly convinced that the medical practitioners who operate the LCP are entirely competent or even that they are not quite often just blundering around. The give-away passages are in my italics:

"Help the Hospice 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.

"We believe everyone should have access to the best possible care at the end of life, whoever they are, whatever their illness and wherever they are dying. The LCP has gone a long way to help achieve this.

"But there is still a long way to go to ensure high-quality care is available to all. We urgently need to build on the palliative care training which is currently available to health professionals and in particular to those who are unfamiliar with the LCR

"It is also important that professionals in palliative care work together and with families and carers to build the evidence base for the LCP and its impact."

There is now (or so we are told) to be a Health Department inquiry into the LCP, and the Health Secretary, Jeremy Hunt, said in November that he plans to make it a legal right for patients and their families to be informed of end-of-life care decisions, as part of changes to the NHS Constitution. Well, that is something, I suppose. But is it enough? The medical profession has an advanced capacity to carry on doing exactly what it was doing. Will it really pay any attention to this here-today-and-gone-tomorrow politician?

It is important to understand, it seems to me, that the LCP should be considered unacceptable under all circumstances, not simply for Catholics but universally, since it is based on an ideological notion about the end of life, a pressing of all supposedly dying patients into a predetermined pattern of treatment involving the withdrawal of food and hydration (itself an unacceptable procedure under all circumstances) and not on an evidence-based assessment of the needs of individual patients. Once on the LCP, the patient will die: that decision has been taken.

An article by Professor Pullicino in The Catholic Medical Quarterly (November 2012) eloquently explains exactly why the LCP isn't wrong simply because in some cases there is no consultation: it is necessarily wrong, in the nature of things and under all circumstances. Here is his concluding paragraph, but the whole article [http://www.cmq.org. uk/CMQ/2012/Nov/LCP-Pullicino.html] ought to be read, marked, learned and inwardly digested:
 

"There is no scientific evidence to support a diagnosis that a patient is in 'the last hours or days of life'. The LCP does not in fact rely on scientific evidence to determine initiation of the pathway. The lack of an evidence-base for initiating the LCP makes it an Assisted Death pathway rather than a 'care' pathway. Since there are no objective criteria for initiating the LCP, the criteria used are likely subjective biases of the team that make the decision to put the patient on this pathway. As ... research shows, physician biases often underestimate the chance of a good outcome. The physician relays a poor outlook to relatives, making a determination of a poor outcome into a self-fulfilling prophecy.

"If we accept to use the LCP we accept that euthanasia is part of the standard way of dying in the NHS. The LCP is now associated with nearly a third of NHS deaths. Very likely many elderly patients who could live substantially longer are being killed by the LCP including patients with 'terminal' cancer....

"Starting a patient on the LCP, is an abandonment of evidence-based medicine in a critically ill section of the hospital population. This goes entirely against the gold standard of modern clinical care and is likely to have very serious ramifications, not only for the patients put on the LCP but for the practice of medicine in NHS hospitals.

"The LCP is already altering the natural history of disease and in this way negatively affects mortality statistics. Nursing of elderly patients who are on the LCP, in proximity to those in whom evidence-based medicine is determining care, is confusing to junior medical staff and nurses alike. Junior staff and nurses are also vulnerable in terms of their careers and may find it more difficult to voice ethical concerns they feel.

"Use of the LCP is likely to have negative effects on elderly patients, in particular, who are not on the LCP and to undermine the doctor-patient relationship. The LCP needs to be abandoned in favour of evidence-based medicine in all patient groups including those with terminal cancer." [My italics]

What more needs to be said?