This is Max Pemberton in The Telegraph -
I have often seen this happen; patients you are convinced will follow a clear, definable illness-trajectory prove you wrong. It's this unpredictability that makes medicine so fascinating; the fact that the body has a remarkable capacity to confound expectations. Even for those with a terminal illness, there can be no certainties. It's for this reason that I despair of the Government's new treatment pattern for palliative care. The "Liverpool Care Pathway" involves a series of tick-box assessments, which aim to assess the likelihood of death in patients deemed to be terminally ill in hospitals, nursing and residential homes.
Under these guidelines, being rolled out across England, patients can have fluid and drugs withdrawn while on continuous sedation until they die. In a letter to this newspaper last week, experts in palliative care raised concern about this system, highlighting that this approach can mask the signs of improvement. They argued that "forecasting death" is an inexact science. I think there is a valid argument for withdrawing treatment from patients in pain and distress and making them comfortable.
As doctors, we must be aware that actively treating someone can unnecessarily prolong suffering. For this reason there is no doubt that doctors need guidance on how to manage those patients with terminal illness. But any doctor knows that the decision to withdraw treatment is an incredibly complex one, involving professionals from a wide range of disciplines including a palliative care team, and can never be as simple as filling out a sheet on a clipboard. As frustrating as it is to those in power, medicine cannot be reduced to a series of tick-boxes. Things just aren't that simple. It's why medicine is talked of as being as much an art as a science. It operates in uncertainties and requires reflexivity, adaptability and judgement that a reductionist approach can never do justice to. A bureaucratic approach to medicine is that it stops professionals from thinking. It stops them from questioning their decisions and from seeing each patient as an individual. Not only does this result in dangerous complacency, it denies the wonder of the human body.
Finger on the pulse His grandfather's illness gives Max Pemberton an insight into the perils of tick-box medicine
The telephone rang. From the tone of my Gran's voice I knew immediately it was bad news. "The doctors have said they think he's going to die," she said quietly. "He's in intensive care but they think he won't last the night". I know that when doctors talk about someone dying then it there really isn't much hope.
My grandfather had been taken into hospital earlier that day with a distended abdomen. He was having difficulties breathing and had become increasingly confused. He had been admitted to a ward and arrangements had been made for him to have a scan that same day. He had been given a drink containing contrast medium that would make the image of his bowels clearer, but while he lay in the scanner he had vomited and inhaled it. He then rapidly developed pneumonia, making his breathing even worse. Blood tests had shown that the oxygen in his blood was dangerously low. He was now on intravenous antibiotics and high-flow, pressurised oxygen but was having difficulty tolerating the mask over his face, so the doctors had been forced to sedate him. Now his breathing had changed from being deep and laboured to short, shallow breaths. He was no longer struggling to get enough oxygen into his lungs.
The doctors, my Gran carefully relayed to me, warned her that this was because his body was now giving up and it was only a matter of time. My Gran didn't need to explain this to me, because I have seen it so many times before. This, I thought as I listened to her, is the typical pattern of how old people die. One thing after another, the body gets weakened, underlying problems hamper recovery, infection sets in, doctors do their best but it's futile. While personally it was devastating, medically, it was unremarkable. Any objective analysis based on medical knowledge would have assumed that my grandfather was about to die. But he didn't. He survived the night and by the morning, he had rallied. The next day, he was off the oxygen. The day after that, he was sitting out and eating some custard.
I have often seen this happen; patients you are convinced will follow a clear, definable illness-trajectory prove you wrong. It's this unpredictability that makes medicine so fascinating; the fact that the body has a remarkable capacity to confound expectations. Even for those with a terminal illness, there can be no certainties. It's for this reason that I despair of the Government's new treatment pattern for palliative care. The "Liverpool Care Pathway" involves a series of tick-box assessments, which aim to assess the likelihood of death in patients deemed to be terminally ill in hospitals, nursing and residential homes.
Under these guidelines, being rolled out across England, patients can have fluid and drugs withdrawn while on continuous sedation until they die. In a letter to this newspaper last week, experts in palliative care raised concern about this system, highlighting that this approach can mask the signs of improvement. They argued that "forecasting death" is an inexact science. I think there is a valid argument for withdrawing treatment from patients in pain and distress and making them comfortable.
As doctors, we must be aware that actively treating someone can unnecessarily prolong suffering. For this reason there is no doubt that doctors need guidance on how to manage those patients with terminal illness. But any doctor knows that the decision to withdraw treatment is an incredibly complex one, involving professionals from a wide range of disciplines including a palliative care team, and can never be as simple as filling out a sheet on a clipboard. As frustrating as it is to those in power, medicine cannot be reduced to a series of tick-boxes. Things just aren't that simple. It's why medicine is talked of as being as much an art as a science. It operates in uncertainties and requires reflexivity, adaptability and judgment that a reductionist approach can never do justice to. A bureaucratic approach to medicine is that it stops professionals from thinking. It stops them from questioning their decisions and from seeing each patient as an individual. Not only does this result in dangerous complacency, it denies the wonder of the human body. On paper, my granddad was about to die. In reality, against all the odds, he rallied and although he's still in hospital, is doing very well. He's probably reading this now. Get well soon Gramps.
This is the homogenised Max Pemberton in The Telegraph -
What follows is a lesson in how a skilled journalist may be 'all things to all men' and present a different interpretation by saying the same thing.
The Liverpool Care Pathway leads away from pain
The media scare over the controversial care pathway could jeopardise access to a comfortable death
7:58PM GMT 04 Nov 2012
Over the past few weeks, I have been reading about the Liverpool Care Pathway (LCP) – the “death pathway”, as it has been called – with increasing concern. I have professional and personal experience of this aspect of medicine, and the reports of people whose loved ones have been placed on this pathway, only to rally and survive, have left me deeply worried.
The stories evoke plenty of chilling allegations, of doctors and nurses turning their backs on patients at the very moment we would hope they would be fighting for them. It seems a perverse inversion of what we believe the medical profession is there for – that people are surviving in spite of doctors, not thanks to them.
But that’s not what scares me. I’m worried about what I read not because of what it suggests is happening in hospitals, but because I know what the repercussions of the recent media frenzy will be and, frankly, I dread them.
To give you some background: I have worked in geriatrics both before and after the LCP became widely used. I have seen the difference it has made to the way doctors and nurses manage people who are dying, and the amount of needless suffering it has reduced. That some hospitals have been “paid” for putting people on this pathway, as reported, sounds grotesque, but the payment is recognition of what clinical consensus deems best practice.
It is also simply a product of the commodified health-care system that now exists, in which every procedure is given a price. It is the payout structure by which hospitals receive their income.
From a professional perspective, I have seen how the LCP means that people no longer have to be afraid of dying. But I also have personal experience because both my grandparents have been on it.
A few years ago, my grandfather was taken into hospital with a distended abdomen. He was having difficulties breathing and had become increasingly confused. He had been admitted to a ward, and arrangements made for him to have a scan that same day. He was given a drink containing a contrast medium that would make the image of his bowels clearer.
While he lay in the scanner, he vomited and inhaled the liquid. Soon after, he developed pneumonia, making his breathing even worse. It didn’t improve, and changed from being deep and laboured to short, shallow breaths – a bad sign: he was no longer struggling to get sufficient oxygen into his lungs.
We were all prepared for the worst and, indeed, the doctors, assuming he was dying, placed him on the Liverpool Care Pathway. But, defying everyone’s expectations, he rallied. The next day, he was off the oxygen. The day after that, he was sitting up and eating custard. He celebrates his 91st birthday later this month.
Now, I have real concerns about clinical decisions being reduced to a series of tick-boxes. It prevents professionals from questioning their decisions and seeing each patient as an individual. But this doesn’t mean the Liverpool Care Pathway is wrong or bad. The simple fact is that the pathway is not a one-way street. Its use is constantly reappraised and evaluated, which is why my grandfather is still here with us today. Once it became apparent he was improving, his medical management was changed.
While doctors should feel free to use protocol and guidelines, they shouldn’t feel constricted by them. And this is what scares me.
The media furore has been fuelled, in no small part, by religious groups ideologically opposed to medicine’s interference in the process of dying. But their intervention will make doctors and nurses less confident in actively managing death and more reticent about using the LCP, with more people suffering as a result.
In future, doctors who use a palliative care pathway will be more wary of deviating from it because they will feel more secure and protected by adhering to policy. But this will mean less responsiveness to a patient’s changing circumstances.
The LCP was an attempt to ensure access to a dignified, painless and comfortable death. My grandmother was put on it last year and died shortly afterwards. It was a peaceful death and I couldn’t have asked for anything better. She had been haunted by watching her mother die of throat cancer in agony, confused and fighting for breath, and it was a relief to be able to reassure her that this wouldn’t happen to her.
That this kind of death might be denied to people due to unfounded fears is what scares me. When my time comes, I want there to be a Liverpool Care Pathway.
Will the real Max Pemberton please stand up?
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