Living and Dying Well

The last few weeks have not been a particularly auspicious time to be a member of the British medical profession.

This month, it has been suggested that I regularly practice euthanasia. I’ve been accused of manslaughter and of murder. I’ve been told that I’m killing off elderly patients in order to meet my bed managers’ targets and that I will choose to end the life of people who I think are worthless.

Well, not me. Everyone.

There are a handful of journalists, who admittedly mostly work for the Daily Mail and are therefore not really journalists, who have declared war on the Liverpool Care Pathway and, mostly by association but also a little bit by calling us arrogant and high-handed, have also declared war on all doctors everywhere.

The Liverpool Care Pathway For The Dying Patient, or the LCP, is an integrated set of guidelines, developed based on the hospice model, that is used to improve the quality of life in the final few days and hours of a patient’s life. It is used in patients in  whom a diagnosis of dying has been made. If used correctly, it involves the stopping of most treatments and the starting of palliative medications where those are appropriate; the stopping of investigations and routine checks of heart rate, blood pressure, and so on; decisions being made about the appropriateness of fluid or nutrition based on whether those things will make a patient more comfortable rather than using them to artificially prolong their life; carrying out regular checks to ensure that the pathway is still appropriate and that no changes need to be made to it; and making sure that social and spiritual support, where wanted, has been made available to both the patient and their family. If a patient rallies and no longer appears to be dying – and the fact that this is a thing, both because doctors are sometimes wrong anad because sometimes miracles happen, seems to have become a huge source of scandal rather than the cause for celebration that I would hope it might be — the diagnosis of dying is reversed and the LCP is stopped.

It has been in use in the NHS for over a decade.

And, suddenly, kind of from out of nowhere, there are articles and the op-eds and the commenters who, honestly, to read them, you would think that Hitler was a fluffy bunny rabbit compared with British doctors.

I don’t take death nearly as lightly as they seem to think I do, and nor does anyone I work with. I am never less than saddened when one of my patients is given a terminal diagnosis and it is never anything less than a solemn thing when I go to pronounce someone dead or to see someone in the mortuary. The first time I was asked to start a patient on the LCP and the first time I was asked to pronounce a patient dead were on the same day, for the same patient, on my first weekend on call, when I had been a doctor for two weeks. I hadn’t eaten anything or stopped moving for ten hours, but I sat down in the doctors’ office on that ward and I cried buckets.

There is a body of opinion that says that it would support the use of the Liverpool Care Pathway in hospice medicine, which, they say, is where it was originally designed to be used, but think that it is inappropriate to use it in hospitals. But to do that would be to miss the whole point of the LCP — designed in a hospice,  yes, in a place where end-of-life care is done very well and where they never actually needed the LCP, but with the express intention of taking those principles of good end-of-life care and putting them into a format that could be easily used in hospitals, where end-of-life are has often been done terribly. It is disingenuous to suggest that a pathway that enables the good management of dying patients is useful in hospices, where 16% of cancer patients died in 2003; but that it is inappropriate for use in a hospital, where 55% of cancer patients died in 2003. I guarantee that those numbers would be even more skewed for non-cancer patients.

Professor Peter Millard, emeritus professor of geriatrics at the University of London and therefore a man who really ought to have known better, is quoted in the British Medical Journal this week as saying, “In practice, it’s time consuming on the people doing it, and it doesn’t seem that once a person is on it, they can come off it. It is not flexible enough to be changed or sophisticated enough to take into account that person’s particular circumstances.”

The LCP can be used well or it can be used badly. If it’s used well, it is a wonderful thing and highly flexible and, sorry, Professor Millard, but we do take patients off it. If it’s used badly, it’s a failure of education and training and communication and occasionally circumstance – and the answer to that isn’t to get rid of the LCP itself. And, yes, starting someone on the LCP is time consuming, but, you know, taking care of a dying person is time consuming and, if we’re doing it right, so it damn well should be.

I find the implication that I want my patients to die to be deeply deeply offensive.

I want my patients to live. I want them to go home to their children and their grandchildren, whole and healthy, and to live long enough to forget that they ever knew a young doctor with glasses and a Geordie accent. It happens, sometimes, I hope. The days when I can hand over a discharge letter with a handshake and a smile and a teasing admonishment that I don’t want to see them again, those are good days.

But part of doing what I do is learning to accept that, sometimes, people die, and that, sometimes, there is absolutely nothing that can be done to change that, and that the only thing that can be done is to make sure that, when it happens, it’s with as much comfort and dignity as possible. There are good deaths and there are bad deaths. If you’ve seen a bad death, you won’t ever forget the difference. And the days when I know that a dying patient has slipped away painlessly and peacefully and with their family around them, those, through the tears that we don’t ever let fall in public, those are good days too.

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22 comments

    • My old Athens password has expired or else I would give you the links, but the two references I have to hand, both of which are easily findable through PubMed, are:

      Veerbeek L et al. The effect of the Liverpool Care Pathway for the dying: a multicentre study. Palliat Med 2008; 22: 145-151

      Paterson B et al. Introduction of the Liverpool Care Pathway for end of life care to emergency medicine. Emerg Med J 2009; 26: 777-779.

      I audited the admission of end-of-life patients to an inner city medical receiving unit two years ago, and I did a fairly broad literature review of the LCP as a part of that. I am doing a little more here than just blowing smoke out of my ass. The provision of evidence-based research for their viewpoint is, by the way, something that the so-called journalists who are scaremongering at the British public have yet to provide.

  1. Beth – A thoughtful piece. I guess you have put far more care and detail into this than the “Red Top” (so called) journalists. Having seen a close relatives in care go through end of life it is harrowing for everyone. In the later of the two I had no idea whether that person understood what I was saying as all bar automatic actions from the body had ceased.

    I have no idea what is best. What I am certain of is that we (by that I mean society) do not have the moral maturity to deal with the consequences of medical research and technology that can prolong life. In many, many cases those treated leave hospital on their own two feet and continue to live a long life. In a few cases the body is kept functioning when we have no idea what is happening to the soul.

    I feel for you and your colleagues as you do your best – and I mean your best – to cure those under your care, however in a few cases despite your best endeavours the patient will leave this world for the next.

    Do not despair and continue on your chosen career. I am sure you are great medic – in fact I will go a far to say that you are a great medic.

  2. Wow. I only wish we had the LCP here in the U.S.

    Perhaps the journalists could suggest doing what we do here instead. Take dying patients and put them in the ICU for days, maybe weeks at a time, keeping every last organ alive long after their brains are gone while attorneys, family members, and hospital staff try to figure out whether the health care proxy, the will, or the DNR/DNI signed at the nursing home has more authority, meanwhile bankrupting with the family with upwards of a $100,000 per day bill that will go the insurance company that won’t pay.

    Around 20% of Medicare (our national health care for seniors) dollars go to care within the last month of life, most of which does nothing to extend or improve the quality of that last month. I believe that our inability to let go and deal with death is the reason why medical bills are the number one cause of personal bankruptcy in the U.S. and one of the reasons why healthcare now takes up more of our federal revenue than anything else.

    Have those journalists come take a look at our health care system, our patients with Alzheimers with PEGs and trachs, and ask them how they would like themselves or their family members to die. It’s not our way.

    • Well said, Kelly. I really wish the US had clear guidelines related to when and how to transition to palliative care. The last time the issue was raised, we got all that “death panel” malarky, which just goes to show that irresponsible journalism and sensationalism exists on both sides of the pond. Those receiving early palliative care not only have a better quality of life but also live longer (http://www.nejm.org/doi/full/10.1056/NEJMoa1000678). From Beth’s links above, it looks like there is similar data from the LCP set.

  3. I think there are some big primitive fears behind the journalism. One really big fear is that of death – death is ‘an awfully big adventure’ and because we know nothing of what lies behind it, it remains terrible for us – even more so as many of us do not see it as commonly as in the past. I’ve seen it more often than many, one reason being I keep animals, most of whose lives are shorten than human life usually is. I think it is no accident that the only one of my relatives unhappy to be an organ donor is also the only one unfamiliar with how bodies change after death. But for many, it is only the rare death of an older adult which gives death a face. The path to it is mysterious, and many fear asking doctors questions, and if they do ask, many do not understand the answers.

    The other great fear, perhaps more primitive than the fear of death, is the fear of thirst. The idea of being thirsty and unable to call for water is a terrible fear, and I suspect that that above all drives objections to LCP. I further suspect that those who have not (as I have) sat by the beds of the dying who refused all drink do not realise how towards the end all desires fail.

    It is no good feeling hurt by the insults of immature commentators. The thing is to help them to an understanding. But how can we help people grow up, and face their mortality?

    We need classes on ‘how to make a good death – dying and what happens’ I don’t know who would teach them, and those who most need them would run in fear. The medical profession lacks the time to teach about it. The church can only help those who hear her. Vets do have knowledge and respect and a little more time but only reach those who have animals, and even then their association with euthanasia may make them suspect.

    • It’s not that I’m hurt by them — after all, if I were hurt by the Daily Mail then I would spend my time being little else — so much as that I’m angered by them.

      I think that you’re right about there being some big primitive fears at play here, the fear of thirst being a big one — the LCP, applied properly, does not deny water to people except in cases when it is clearly the best thing, and, when I say the best thing, I mean that aspiration pneumonia is a horrible way to die. Sadly, this is the kind of thing that plays on those fears absolutely. I could tell stories that would make your hair curl about how this has made it so frustratingly much harder for people I know to do their jobs and to do the best by their patients, and I think that that maybe pushes this over the line from immature commentators to irresponsible journalism.

  4. Beautifully put. I for one hope that if my time comes in a way that requires LCP, you will be there, if not to be my physician, but to advise the physician in whose hands my llife remains.

  5. The Daily Mail gave a voice to the patients or relatives of patients who were inappropriately put on the LCP. Therefore this was not irresponsible journalism, The Daily Mail wasn’t the only newspaper to follow this story, the broadsheets followed it too. Then TV stations followed it and BBC radio followed it. Maybe you’d feel a bit differently if it happened to one of your loved ones.
    What happened to exploring both sides of an argument?
    I’m an SRN, I’ve been nursing for 39 years. I’ve sat with dying patients, I’ve never refused a patient water if he/she had a swallow reflex. A friend who is a Dr insisted her mum, who was on the LCP continued to have IV fluids when she was dying. My brother was on the LCP, we contacted the Daily Mail, if you’d care to read his story. He was considered to have had ‘a cerebral event and is in renal failure, he won’t recover.’ Wiping his dirty, dry lips with a wet paper towel lead to him trying to suck water out of the paper towel because he was so thirsty. I started giving him water with a pipette to make sure he had a swallow reflex, then he became conscious enough to drink with a straw. The family had to fight with the consultant to get IV fluids started. My brother had fluid resuscitation and went home.
    What about the issue of consent? Consent by patient, implied consent, consent whilst under the influence of opiates or benzodiazepines or consent by relatives who may not even be the next of kin?

    You don’t know if you are withholding fluids what the outcome might or might not be especially if you are giving opiates and benzodiazepines as well. You don’t know, however clever you think you are. Urgent reviews are needed. None of my family will be put on the LCP.

    The sheer arrogance of your point of view is that you think you are right, you don’t have one iota of doubt. If one life is inadvertently lost as a result of the misuse or inappropriate use of the LCP then that is one life too many.

    • Kathleen, I’m not at all sure where you’re getting the idea that I don’t have “one iota of doubt”. In this blog post and comment thread, I have said twice that what I am saying about the LCP only holds water if it is used correctly. I have said that the LCP can be used badly and have said (admittedly by implication) that more education, more training, and better communication is needed in order to correct that. And I have said flat out in my fifth paragraph that sometimes doctors are wrong. But my intention in writing this had never been to present both sides of an argument — my intention was to present the opposing side of the argument that has been presented over and over and over again by the Daily Mail. If they had drawn attention to the fact that the LCP, like any other medical guideline, can be used incorrectly and inappropriately, then I wouldn’t be calling it irresponsible journalism. They haven’t done that. They have said that the LCP is without question a form of euthanasia and that doctors are putting people on it to meet bad managers’ targets, they have (repeatedly) called it a pathway to death, and they have used the phrase “to bump off elderly patients”. Now, I don’t believe that any of those things are true and I think to write them in a national newspaper is in fact irresponsible journalism.

      The BBC, the Daily Telegraph, and the BMJ have all at least attempted to present some form of balance, which is why I’m picking on the Daily Mail.

      I am, as an FY1, never the person to make a decision to start patients on the LCP. That is a decision that, in my clinical practice of all of three months, has always been taken by doctors who have many more years of experience than I do.

      However, I have, as an FY1, seen several patients on the LCP who have been on IV fluids because they were more comfortable on them than off them. I have never seen a patient on the LCP denied oral fluids, and the only time they should be is if there is an evident risk of aspiration pneumonia. The LCP itself does not deny either of those things to patients.

      A number of people have obviously had terrible, terrible experiences when their relatives have been put on the LCP. I am truly sorry for the experience that you had with your brother. Do I think that the LCP is perfect? No, I don’t. But I do think that it is a good guideline based on solid principles and that, until we have a perfect one, we shouldn’t be throwing the one we do have out but should be improving education and training on how to use it properly and improving our communication with patients and families. If you treat an ischaemic stroke with thrombolysis, it carries a risk of haemorrhagic transformation — which just goes to show that no guideline is perfect and that there is always a risk of getting it wrong, but we didn’t stop treating stroke, we looked at ways to minimise the risk. There are no certainties in medicine, ever, and to pretend that there are would be incredibly disingenuous of me.

      You say that none of your family will be put on the LCP. You are perfectly entitled to say that. But, given the choice, I would want to die on the LCP, and I am entitled to say that too.

  6. PS have just noticed you are an FY1. I have much more experience of caring for dying patients than you have. I would never let a dying patient suffer neither would I withhold his/her basic biological or physiological needs as per Maslow’s (1954) hierarchy of needs.

  7. Kathleen, as the mother of Beth, I take great offence at the inferred comment made by you that my daughter would let a dying patient suffer. She is a caring, compassionate young woman and would always, ALWAYS, put the needs of her patients first. She is also the least arrogant person I have ever met. I sincerely hope you never nurse me in my last few hours on this earth.

  8. Linda I haven’t said she would let a dying patient suffer. I wouldn’t let a dying patient suffer either. I would hope they would consent to the treatment they were receiving which isn’t the case with most, if any patients on the LCP. Lots of hospitals are not using the LCP correctly, lots of patients have fluids withheld and lots of patients will die of dehydration. And that is euthanasia, if someone dies before they are due to die that is euthanasia. I took my 48 year old brother off the LCP, I gave him fluids and he regained consciousness. I insisted he was given IV fluids. he told his consultant what he thought of him. he lived another 5 weeks with his five children so when his death was being hastened and all comfort withdrawn he was not dying, he died 5 weeks later when it was his time to go!
    I haven’t said your daughter isn’t a caring, compassionate person or a good Dr. I didn’t say that your daughter was arrogant but that I felt her point of view, the general view of a great majority of the medical profession is arrogance.
    If I were to nurse you Linda I would be as professional as your daughter is. I would not let you die of dehydration, this is what is happening over and over again in so many cases and it would have happened to my brother if I had not rescued him. It is happening to other people’s loved ones too. Why can’t you understand that?

    • And someone somewhere else is suffering needlessly because they haven’t been. Not all patients are as fortunate in their family as your mother obviously is.

      Clearly, we have different opinions on this and could argue it back and forth forever.

      If you are interested in reading it, some of the evidence base for my point of view is linked further up the comment thread.

  9. Pingback: 2012 in Review | The Road Less Travelled


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