SUFFERING THAT SHOULD HAUNT EVERY DOCTOR

YOU would think that the withdrawal of something as obviously wrong, flagrantly inhumane and at times downright cruel as the Liverpool Care Pathway would be a victory for common sense. But not a bit of it.

Nor can the axing of the controversial care programme — under which terminally ill patients were routinely deprived of food and water and kept under heavy sedation until their accelerated death — be described as a victory for politicians, or even for the medical profession to which I’ve otherwise been proud to belong for more than 40 years.

No, the withdrawal of the LCP, the demise of which was confirmed yesterday when new draft guidelines were published by the National Institute for health and Care excellence (NICe), was a victory for press freedom and for the Daily Mail in particular.

ever since the first alarming reports began to emerge that the care pathway, introduced into the NhS in 2010, was not working as its well-intentioned architects had planned, the Mail has been tireless in exposing those shortcomings — which often resulted in the most appalling suffering for elderly and seriously ill patients — and accelerating the LCP’s end.

It’s difficult to believe that three years ago, when virtually every medical institution in the country was wholeheartedly endorsing the LCP and eulogising about its alleged benefits, the only real voices of opposition came from the Medical ethics Alliance, which I chair; Professor Patrick Pullicino of Kent University, who once described the LCP as an ‘ assisted death pathway’; and the Mail.

Without our persistent and vocal opposition, I am convinced that a reluctant coalition government would never have appointed Baroness Julia Neuberger to conduct a thorough review of the pathway, nor accepted her recommendation that it be phased out and replaced by a system of individual and — I do so hope — compassionate care.

The NICe guidelines are certainly much needed. Lady Neuberger’s recommendation was made in 2013, but nothing immediately replaced the LCP and there is anecdotal evidence that hospital doctors have been resorting to its methods without acknowledging it by name.

Only last week, for instance, I was contacted by a man concerned about the treatment his mother, in her 80s and seriously ill in hospital, was receiving. he told me she had been given no water for eight days and her tongue was now so dry and shrivelled it resembled a walnut.

That’s a description which haunts me and should haunt every doctor — be they junior, consultant or GP — involved with the care of elderly and seriously ill patients: a civilised country should simply not be treating them like that.

The thirst craving is primitive, powerful and desperately painful, which is why I’m so pleased that one of the core NICe recommendations is that a patient’s hydration and nutrition requirements be reviewed every day, along with their medication. Gone for ever, one hopes, are the days when, under the LCP, an elderly and sick patient effectively died of thirst.

The LCP was introduced with the most laudable of intentions — to improve care of the terminally ill and take away the pain and fear of impending death — but it failed on many levels, not least when it was revealed that hospitals were being financially rewarded for the number of patients dying while on the LCP.

There were integral flaws. The LCP’s origins were in the hospice movement and its main care recommendations were designed for cancer patients. But the care that’s best for a terminally ill cancer patient is not the same as that for someone dying of renal failure, obstructive pulmonary disease or congestive cardiac failure.

The NICe recommendations are quite right in advocating personalised care — there cannot be another one-size-fits-all approach like the LCP — but far more research needs to be done, as Lady Neuberger recommended, to find the best palliative care for different terminal conditions. The one disappointing aspect of yesterday’s announcement from NICe is that it didn’t refer to the need for such research.

A more flexible approach is needed for others reasons, too.

Medicine is a complex business and doctors do make mistakes. As a retired paediatrician, I painfully recall telling a distraught mother that her child would not last the night. The child lived another four months, and I am profoundly sorry for misleading her mother.

But I know I am not alone . every doctor can tell you a story like that, and the case of Abdelbaset al-Megrahi reinforces the point. The convicted Lockerbie plane bomber was released on compassionate grounds in 2009 when cancer specialists gave him three months to live. But he didn’t die until May 2012, nearly three years later.

Predicting life expectancy — indeed, even determining whether a patient is terminally ill — is a complex business. The LCP, however, which soon became an oversimplified, box-checking protocol followed rigidly by doctors either relieved not to have to make difficult decisions or too inexperienced to do so, made no allowance for that.

Time and again, the Mail’s coverage exposed cases of patients who weren’t terminally ill being placed on the LCP, and who either died prematurely and unnecessarily or recovered only after the intervention of concerned relatives.

One elderly woman, I recall, was put on the LCP after being admitted with an infected gall bladder. Fluids and nutrition were withdrawn.

Sensing her mother’s distress, her daughter began spoon-feeding her yogurt and water. She then watched in amazement as her mother made a full recovery, started cracking jokes and was fully discharged just three days later. Under the LCP, she would probably have been dead within a week.

Small wonder the LCP was described as back-door euthanasia. It ignored some of the everyday miracles of medical life — stroke victims improve, cancer sufferers stabilise. But not if they are on the LCP.

And now — hurrah! — it has gone for good, replaced by for-now draft guidelines that talk the right sort of talk: personalised care, good communications, daily reviews and decisions shared between the patient, medical staff and relatives. But these won’t be put into practice until a final version is published in December. There is the potential for backsliding — overworked doctors and nurses love a simple protocol, and neither the medical profession nor the Press can rest easy yet.

In the meantime, until the guidelines are turned into best practice, people will continue to grow old, get seriously ill and approach the end of their lives. So what can relatives do to ensure their loved ones get the best possible care?

FIrST, they must ask doctors the difficult but vitally important question: are you certain my mother/father, husband/ wife is dying? If the answer is yes, they must then ask the doctors to guarantee that their relative will be kept hydrated. Then ask the medical team to guarantee that any sedation used won’t take away consciousness unnecessarily or remove their ability to communicate.

One of the many good things to come out of the hospice movement is the idea that ‘the last week of life can be the most important week of life’. That must not be taken away by excessive sedation just to make life easier for medical staff.

Finally, relatives should ask the question the LCP always failed to address: will you change the management of the patient if their condition improves? They’re doctors, for goodness’ sake. The answer has to be a resounding ‘yes’. But too often, under the inflexible, boxticking LCP, it wasn’t.

None of us likes the idea of dying, and most of us don’t like talking about it. But the more we turn away, the more likely it is that something resembling the LCP will return under another name. This cannot be allowed to happen.

Thanks to the Mail and the new NICe guidelines, an era of compassionate and personal palliative care is finally on its way. Now all we have to do is stay on our mettle and makes sure it arrives.