Monday, 12 October 2009

For whom the bell tolls


Back in Victorian times, death was never far from people’s thoughts thanks to the diseases and poor medicine of those times. You can see evidence of this in old sepia photos of sombre matronly women (including Queen Victoria herself) posing in their widow’s weeds.

Back in those days the grim reaper was rushed off his feet, stalking homes up and down the land to carry off people of all ages thanks to afflictions such as typhoid, tuberculosis, smallpox, diphtheria and cholera.

Indeed, so afraid were some Victorians that they might be pronounced dead and interred without having properly expired, that some of them had bell pulls fitted in their coffins. They did this so that should they wake up having been buried with indecent haste, they could pull on a cord and summon help to dig them out of the ground before they suffocated.

Happily those days are long gone and today’s talk is of euthanasia to help ease the plight of the terminally ill. This is the medical profession’s unofficial way of making sure you’re fully expired and no longer living before being committed to the ground. Because of this, today's coffins are no longer fitted with bell pulls or whatever the modern equivalent might be: such as a mobile phone or a BlackBerry for Twittering one’s resurrection to all and sundry.

So what brings me to this rather macabre subject? Well it’s the news that the NHS now has its own version of euthanasia to make sure you’re completely expired. This procedure is innocuously called  the Liverpool Care Pathway Plan. If you ever find yourself in a hospital and the doctors and nurses start whispering and asking the student nurse to fetch the care pathway manual, you can safely assume you’re about to be decommissioned. Usually you’ll be unconscious and in no state to argue the toss.

If you are ‘Liverpooled’ you can expect to have your food supply withdrawn and your antibiotics stopped as you’re allowed to gently slip away. However, the alarming fact about this unofficial form of euthanasia is that some 3% of patients who experience the Merseyside Murder are ungrateful and thoughtless enough to survive and go on to make a full recovery, in some cases going on to enjoy years of extra life.

This all sounds a bit chilling to me. I think we may have to start kitting out coffins with some sort of hi-tech bell pull as the Liverpool Care Pathway Plan gains in popularity at a time when the cash-strapped NHS is sorely in need of more beds.

So whatever you do, may I suggest you contact your solicitor and have your will amended to include a clause insisting you’re buried with a fully charged mobile phone on a decent network and loaded with plenty of credit?

Unfortunately, if you’ve opted for cremation all I can suggest is that you get a quote for a sprinkler system or carry a pocket fire extinguisher with you.

30 comments:

  1. Apparently the surge in cremation popularity was caused by these fears - including the report of grave diggers opening coffins and finding scratch marks on the inside of the lid...

    almost as creepy as the "Care Pathway" wtf?

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  2. You have an advantage over us on the outside in that you have time to find and read such articles. May I ask where you got that story from as I'd be interested in reading it in it's entirety?

    Ta

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  3. What, seriously, The Care Pathway, that is seriously weird, nearly as weird as bell pulls in coffins, what are they TM.

    I would like to have a humanist green burial please, in the woods, under a gorgeous tree, music, some Eminem and The Killers, could I have my iPod, laptop, mobile included, oh and my green eyeliner and mascara, some jelly babies, box of Thornton's toffee, Brazil nut, also my fav book, Alexander Solzhenitsyn Gulag Archipelago, and a couple of oranges, thanks very much.

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  4. Davet30: More info here http://www.timesonline.co.uk/tol/life_and_style/health/article6869646.ece

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  5. I read this in The Times as well and found it shocking. Note: I am from the Netherlands, where they are supposedly euthanasia-happy. The experience of a friend of mine shows that that there are many 'paths' to be trodden before it is granted - and rightly so.

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  6. I'm going to read that article too. In all the discussion of Euthanasia, it's rarely recognised that it is, in effect, already practised here through decisions about care. While I've never had a preference about what happens to me when I'm dead, a friend of mine insists she wants to be cremated as she wanted to make sure she was dead. Perhaps this fear isn't so far-fetched after all.

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  7. Wow, I never knew something like this exists.

    At the moment in Germany we have the discussion the other way round. Here "active help to die" (aktive Sterbehilfe) is forbidden and there is some discussion going on to legalize it in some form, but I hope never in the way, that a doctor can decide when it's time to go.

    Actually this strongly reminds me of an episode of Star Trek Voyager that's called "Critical Care".
    In short the doctor is on a planet were the treatment you receive depends on your TC (treatment coefficent). If your value to society is low (becauseof education, work, age, etc) then you just get basic treatment and with a great chance you won't survive it.

    Hopefully the politicans there never see this or they might get strange ideas....


    Hope you get well enough to never be on this plan...

    Antje

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  8. I've just come back from reading the article you refer to. Even though I was aware that decisions were made that could be described as euthanasia, the article shocked me. The fact that it took 4 days for family to persuade doctors to feed their relative when she was sitting up and talking. Those without family to speak for them are so vulnerable.

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  9. TM, I think some hospitals, including yours have a similar plan - the Catering Care Pathway - and all patients are on it. Instead of withholding food, they serve up gloop and slop that is so unappealing you do the job for them. If it wasn't for Mrs TM, friends and the panini angel I think you would have faded away long ago.

    Evidence is here:
    http://hospitalfood.tumblr.com/
    It's not too difficult to spot which ones are running the plan and which are clearly doing their best to please the patients' palates. (Bottom of page 4 is a corker!)

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  10. Read the Timesonline article, oh this is quite dreadful, the lady being left to starve to death, how appalling is this, starved to death, isn't this supposed to be a terrible way to die.Is this a plan perhaps to get rid of patients.

    My beloved dad a couple of years ago, was in a hospice, he had stomach cancer, a doctor came in and asked about resuscitation, and if he had a heart attack would he want to be taken to a hospital to be revived, dad of course is lying there listening to this, the doctor was giving mum all the information, and dad's weak voice suddenly said " don't speak to my wife, speak to me, I am a person ", the doctor seemed quite stunned, and turned to dad, who told him he did not want to be resuscitated, he wanted to die peacefully, which he did five days later.

    Perhaps some doctors should ask patients what they want, instead of treating them as morons, who are unable to think for themselves.

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  11. We had the same situation as Ann last year at home with my Dad. He had pancreatic cancer but was still able to speak for himself. I went mad at the doctor when he was outside but he just shrugged and said well he will be dead soon. When I took the prescription that he gave me to Boots which had end of life pathway that pushed me close to the edge.

    Just to have a rant about another thing that I was told this morning. Did you know a doctor on call at night gets £170 per hour plus a taxi and driver to take him to calls. God that money could be spent better in other areas. If I could overhaul the whole system I wouldn't half make some changes.

    Sorry, hope your leg is feeling a bit better today.

    Ruth

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  12. Liverpool - hardly a name that inspires any confidence for selfless probity in action.

    One thing, though, to nick your tyres while you're just nipping into the offie for a bevvie, quite another to steal your life away when you're not looking.

    All part of the Guvment cunning plan to cut NHS costs. One moment of weakness, death by enforced starvation, and that's another freed-up bed.

    'Logan's Run' remember? We're getting close. Won't mind though as long as I get to bag Jenny Agutter first.

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  13. It is just a change of spelling really. You go from being Cherished to Cheried whilst everyone says "sh".

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  14. The Liverpool Care Pathway is not to 'bump' patients off, it is to ensure that patients recieve proper pallative care, (turning, mouth care, medication) and its all documented in the care plan, so that we dont have 100 care plans for every thing the patient needs.
    -Student Nurse

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    1. what a load of student tosh have you been vigorously taught to preach it, its worse than the death camps in world war 2 when adolf was the shipman then. its inhumane and should be abolished without any enquiry all the facts are out with the doctor whistleblowers.

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  15. I recently lost my father to parkinsons disease-june yhis year and he was put on the Liverpool Care Pathway and yes he recieved proper pallative care the regular turning, mouth care and medication. It still took him five days to pass away and belive me watching someone you love pass away so slowly is not something I would wish on my worst enemy. Each Day or night as we all took turns to be by his bedside to see a little more of the light gone from his eyes, eyes that still recognised his family and responded to our voices was without doubt the worst experience of my life.

    I don't really know what the answer is but for us anything that would have ended my fathers suffering and yes our suffering too would have been a godsend.

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  16. Dear 'Student Nurse',

    The offence of 'criminal naivety' is not one recognised in statute sadly. If it were, you'd be up for a five stretch.

    Whatever the honest intention of its devisers to deliver humane care for people in the last days of terminal cancer only, it has been seized on by hospitals and doctors for use with any patient they determine is likely to snuff it for any reason.

    Whilst with many cancers it is largely unproblematic to determine correctly when the last days are coming, no doubt your course teaches you that with most illnesses such a judgement is at best tricky to call rightly, with the risk of shall we call them 'false positives' - people written-off as moribund who could and should survive.

    In such circumstances, the use of the LCP becomes a death sentence, not a means of managing dying. If you are not, then you should be aware of this story. It is not unique:

    http://www.telegraph.co.uk/health/healthnews/6298866/Terminally-ill-grandmother-left-to-starve-by-doctors.html

    Nul point too I fear for confusing palliative with terminal care. If I might refer you to a BMJ letter 'what I wrote' some years back when living for the first time sub umbra mortis, you'll I hope get my meaning:

    http://www.bmj.com/cgi/eletters/330/7492/611

    Palliative care, for you as a nurse, can and perhaps should begin the moment some poor befuddled fellow - like me today - pitches up for his first CT scan second time around, scared sh1tless and utterly out of his emotional depth. A kindly glance and a welcoming, understanding word can be as truly palliative as any comprehensive, objective and utterly impersonal Care Plan when he beyond all medical hope and help.

    I should, and do, know.

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  17. Oh look - more sensationalism from someone who has nothing better to do.
    I am sorry I am not a troll just someone who can see what is happening here...
    When someone is dying.... when they are in extremetis they are NOT hungry. What you are doing is sensationalising the caring reaction to a normal event.We all die...

    To get to the stage where you need a care pathway needs to be discussed by your doctor, nurses, highly skilled palliative care team. The patient and family are also involved. Despite what TM would have you believe it is a huge huge decision and not one made lightly.
    A few more misconceptions....

    When you stick a drip up on a patient that is dying, you are filling them full of fluid - their kidney's cannot expel it and they tend to get very chesty - this makes them bubbly and affects their breathing... then you have to give drugs.
    ORRRR they are incontinent so you have to pass a urinary catheter - hardly dignifying but that is better than moving every 30 minutes, a patient who finds moving painful. So you are not quenching their thirst. Let me tell you, the one thing that dying people suffer from is a very dry mouth - they don't need drips, they need mouthcare.
    And I will tell you something else as well - there is not a clinician alive who would begrudge a dying person a cup of tea.... it is called feed at risk - even if they are not safe to swallow, they are still allowed it for their comfort.

    Now I am a professional and i have questioned the inappropriate use of care pathways,,, that is my job. And sometimes they have been removed from a patient.
    But you TM know mothing about the ins and the outs of ethical dilemmas - I know I will be absolutely slaughtered on here but it saddens me that you are doing this.
    Please stick to hospital food. Palliative care is complex and not how you are painting it at all - it is not funny, it is not to be trivialised and sensationalised.
    So 3% survive..... that means that 97% had the right treatment - but in true journo style lets forget the facts for sensationalism.

    And BTW both my parents are dead - my mother had a very large stroke and died at home in her bed. Had I have gone YOUR way and worried about feeding her and OMG suppose she recovers, she would have died in a hospital corridor with a catheter, drip, the lot.
    That is not what she wanted....
    My dad died in hospital and he did not have a drip for 5 days - he did not die of starvation - he did not die of thirst..... he died because it was his time.
    I have to go now... this has upset me so much and once again the nasties will come out :(

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    1. what a load of crap how long have your kidneys had an effect on breathing i am glad i am not your patient.

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  18. As you so rightly point out, I'm a journalist and I don't understand the finer points of palliative care. However, I don't have any agenda. I'm neither pro nor anti-euthenasia as it's not been something that so far has affected my life. I'm genuinely sad that you're upset but I don't think it does you credit to tell me to stick to writing about hospital food. This is a technique often used by people with entrenched views who want to shut down debate.

    Now, I may not know much about the subject, but I daresay as the debate unfolds I will learn more. But please don't look for motives that don't exist. I was simply appalled that some people were being consigned to these pathways sometimes inappropriately.

    I'm sure that you are the sort of person who would argue against capital punishment because of the risk of even one innocent person being executed by the state. And yet you seem quite happy for 3% of those placed on the pathway to die unnecessarily if 97% do receive the correct treatment.

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  19. Strange ain't it that we argue against capital punishment for murderers lest one innocent person be hanged, yet are content to allow LCP to condemn to death any number of people who could and should survive? Is not one, one too many?

    Let us be utterly clear here - the diagnosis that a patient's prognosis is imminently terminal is not an exact science.

    Let us also be scarily honest here - the Guvment cannot afford to keep people alive who might die sooner rather than later.

    Let us be ruthlessly factual here too. The LCP was only designed for people who are their last days of cancer, when they were so consumed with the disease no other possibility exists.

    So why then has it become the standard for all illnesses?

    Think on that before judging it to be a good thing.

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  20. The Liverpool Pathway is ok - in theory. Quite often it works ok in practice. When people get to a certain point their body does shut down and drips and the like aren't appropriate. The trouble is that the pathway has been broadened, so to speak, for people that actually shouldn't be on it. And at the root of that is the Mental Capacity Act and 'best interests' legislation; also the fact that the MCA reclassified food and fluids provided by intraveneous means as 'medical treatment' as opposed to 'basic care'. This meant that a medic could remove food and fluids in the same manner as medical treatment. The MCA is also the piece of legislation that was at the root of the controversy about Kerrie Wooltorton who was allowed to die in hospital without treatment after she had taken a dose of antifreeze. She had pinned a 'do not resuscitate' note to her chest and then phoned an ambulance, but the doctors didn't treat her because advance directives are now legally binding.
    Sorry, going on a bit here. If you want to know a bit more about this debate, you could do worse than look up Dr Grumble; also have a look at Witchdoctor, who has been gathering all the posts and comments on this subject

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  21. Here's the Witchdoctor;

    http://witchdoctor.wordpress.com/2009/10/10/the-right-to-live-the-right-to-die/

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  22. And here's Dr Grumble;

    http://drgrumble.blogspot.com/

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  23. Anonymous at 22.44, I have no wish to 'slaughter' you but have to say that you are being grossly unfair to TM. Surely it is obvious that he has NO agenda with regard to end-of-life pathways? There have been some very disturbing stories emerging about over use of the Liverpool plan and there is no point trying to deny it. Having said all that I am sorry that you are upset, losing parents is always heartbreaking, whatever the circumstances, there is no easy way through it.
    I don't understand the need for this 'plan' anyway. In ye good olde days family doctors often used to help patients in extremis on their way, usually by doing no more than being slightly less than careful with the morphine dosage and quite right too. Two of my grandparents went this way, as was their freely expressed wish, much to the relief of their offspring who had watched them suffer for far too long. I believe the process was known as 'snowing' and I profoundly hope that there are still doctors out there who are prepared to show this mercy to their patients. My fear is that they are getting fewer, having just had to try and help my dearest friend through the horror of watching her father die, very slowly, as a result of just about all care being stopped after a totally arbitrary decision by hospital staff without any consultation with the family whatsoever. There was nothing 'palliative' about his death, and certainly no 'care'!

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  24. TM - where have I accused you of having an agenda or motives?

    Now I don't think the LCP is the be all and end all and I would agree that in some cases it IS being used inappropriately. As I have said, I have intervened when I have felt it has been used inapppropriately.
    Perhaps I can only speak locally then because where I work the only people who can put a person on the pathway is the skilled and experienced palliative care team . I suggest you look at the End of Life Strategy before you comment any more.
    You have an enormous responsibility here - it appears to me a lot of people are reading your blog and taking it as Gospel, well thats up to them. As far as I can see I am the only one who is actively challenging you and again NOT because I have any hidden agenda but because I genuinely am distressed to see palliative care sensationalised in this way.
    You can say that you are highlighting an important issue but with all due respect, it is not helpful to do it in this way.

    Peter - the LCP has NOT become the standard in all illnesses but lets be clear here.
    People do not only die from cancer, they die from stroke, chronic heart disease, chronic obstructive pulmonary disease. There are diseases that are terminal and are just as horrific.

    Lets take dementia for example. How many of you reading this know that dementia is a terminal illness . People do die from it - it is not a disease that you can recover from.
    In the very end stages, the person forgets how to eat and drink, often they lose the ability to swallow as well. They forget how to live...It is horrific for all concerned and there is a strategy being written to care for these people.

    Death is a part of life - sometimes doctors prolong death not life. I agree there should be more thought when implementing the LCP.
    But sensationalising it here. making trite remarks about "finding yourself in hospital and the doctors asking the student nurses to fetch the LCP manual" is not funny.

    Really really isn't.

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  25. Yes death is a part of life and we will all die and leave people very sad. I nursed my Aunt at home because she didn't want to die in hospital. She ate no more than a mouthful of anything but at least I could make anything she fancied. The nurses and doctors were fantastic and very supportive to me too, I needed it as it was horrible knowing she was not going to get better. In the end the only thing I could do for her was keep putting lip salve on her lips and wiping them with a damp tissue. The LCP was used in the correct manner and with total agreement of medical staff and us, we asked for it and it was discussed.

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  26. Thank you anonymous - when the rather "with hold food and fluids" is used, it usually means that the person will not be fed artifically but it may well be that they can have little bits and pieces to orally eat and drink but that would not sustain life.
    If you want further clarification, I suggest that Dame Cecily Saunders excellent book is read.

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  27. @ anonymous 05.34

    "[dementia] is not a disease that you can recover from.
    In the very end stages, the person forgets how to eat and drink, often they lose the ability to swallow as well. They forget how to live [...] a strategy being written to care for these people."

    Even if patients forget how to eat and drink, surely the body still suffers from hunger and thirst, (hunger pangs, weakness, dehydration).

    Having no siblings or children to oversee things, I dread the thought of being placed on such a plan at the end of my life. It seems so cold and uncaring. If there is no chance of recovery, I really hope there will be a compassionate clinician willing to up my dose of morphine instead.

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  28. if the liverpool care pathway is so good why have i seen three professors and loads of doctors in this work saying its wrong, plus you have enquiries taking place with government ministers in my eyes something is definately not right , it should be exterminated itself, how can you expect a patient to improve, when starved and poisoned with seduced comas ie morphine, medazolum and other opiates, it should not be when the doctor says its time to die its down to the patient, stop saving money and playing gods and doctor shipmans its a disgusting implementation, after thousands have been murdered it will be stopped unfortunately.

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