End of life care through the eyes of a doctor and a patient

I was horrified to read the recent articles ‘Care? No, this is a pathway to killing people that doctors deem worthless’ and ‘3000 doctors putting patients on death lists that single them out to be allowed to die’ published in the Daily Mail. As a Specialist Registrar training in Elderly Medicine and a terminally ill cancer patient myself I have strong views on these issues both personally and professionally.

The Liverpool Care Pathway (LCP) is accused of being a ‘backdoor form of euthanasia’ and that we as doctors using it are deliberately hastening our patient’s deaths for sinister motives. In reality the LCP is simply a document we use when we feel a patient has entered the very final stages of life in terms of hours or days. It prompts us to have open discussions with relatives and if possible patients, to stop unnecessary medication, to discontinue futile medical interventions and to shift our focus of care to symptom control, comfort and dignity.

We are also accused of heavily sedating patients at the end of life. This is not the case. We use small doses of medicines such as morphine or midazolam to help relieve distressing symptoms such as pain, breathlessness or agitation. Studies of the use of medication prescribed to patients on the LCP have found that very conservative doses are used and patients are certainly not ‘heavily sedated’. My intention when prescribing at the end of life is wholly to relieve suffering and definitely not to hasten death.

Most patients on the LCP in my experience are too poorly to eat or drink, but where a patient is alert enough to swallow we certainly continue to offer them food and fluids in my hospital. They are not ‘starved to death’ as suggested in the first article. Sometimes we continue fluids subcutaneously if there are concerns about a patient suffering from thirst or if the family has very strong views on withdrawing artificial hydration. The problem with continuing intravenous fluids in these patients is that it involves inserting intravenous cannulae in order to administer them. This is painful, often very difficult and sometimes near impossible in patients that have been in hospital for a number of weeks. I know that when I reach the very final days of my life I certainly do not want to have multiple cannulation attempts and would much prefer that someone offered me good mouth-care to keep my lips and tongue moist.

The LCP is not a one-way road to death. In fact one in ten patients initially cared for on the pathway come off it because they improve clinically. We as doctors cannot accurately predict the future in all cases and much of what we do in Palliative Care is based on clinical experience and not hard science. Patients surprise us all the time and the key to providing good care in this setting is regular review and keeping an open mind whilst trying to communicate these uncertainties to the patient’s loved ones along the way.

When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier.

I’d also like to elaborate on the ‘death lists’ GPs have been accused of keeping again for sinister motives. These are more properly known as End of Life registers or in my area, the Gold Standards Framework (GSF). The idea is that for frail patients with multiple health problems or for people like me with life-limiting conditions GPs ask themselves the ‘golden’ question – ‘Would I be surprised if this patient dies in the next year?’ If the answer is no then they are entered on to the register and this sparks a cascade of service provision, discussions and care. For example, Advance Care Planning may be tackled so that patients can make their wishes known when preparing for the end of life. This includes very important decisions such as determining preferred place of care for death. The vast majority of people when asked where they’d like to die will say home but in reality most people die in hospital at present.

The GSF is essential, if GPs do not identify those patients requiring Palliative Care input how on earth can they focus care and services on the most needy? My name appears on the GSF and I am extremely comfortable with this. Although I am well, working and living a full, productive life at present there will come a time in the relatively near future when I am less well and I want this time to be properly planned for to enable me to achieve my end of life wishes. I fully believe the fact that I am flagged up as a patient who will need Palliative Care services will help me to die in the manner I want to. Therefore in my view End of Life registers are not about being ‘singled out to be allowed to die’ but more about allowing people at the end of their lives to die in the way they wish to.

Whenever end of life issues are discussed resuscitation always comes up as an emotive topic. I have witnessed numerous resuscitation attempts in a professional capacity and because of this experience from the earliest days of my illness I made my wishes clearly known that I did not want to have cardiopulmonary resuscitation in the event of me suffering a cardiac arrest.

The reality of resuscitation is that it is a brutal, undignified way to die with only a tiny percentage of patients surviving it and an even tinier proportion of these patients leaving hospital alive. Even when it does succeed in restarting someone’s heartbeat it does not take away their cancer or other underlying chronic disease. The panic and chaos surrounding a bed where a resuscitation attempt is happening is horrendous. Ribs are broken regularly during chest compressions and it can be difficult to obtain venous access to give drugs such as adrenaline so often patients are stabbed multiple times with needles.

The problem as I see it is that perhaps as a profession we do not communicate with patients and their relatives about this topic well enough. I personally think it should be routinely discussed as part of our clinical management plans. In my experience most older people do not want resuscitation and are quite happy to talk about it. Resuscitation is a treatment and we as doctors are not obliged to provide treatments that we feel are futile. However, the way we communicate this sensitively so that our rationale can be understood is of key importance.

One thing in life is certain; we are all going to die. We need to talk openly about it and plan for it properly. Tools such as the LCP and GSF help doctors to work with their patients to achieve this. It is a scary thought but accepting that not all illnesses can be cured, challenging both the societal taboo about dying and the expectation for eternal youth and health will mean many more people can achieve a ‘good death’ and in turn those left behind can grieve knowing their loved one had a comfortable and dignified end.

If you want to read more about my story my books ‘The Other Side’ and ‘The Bright
Side’ can be ordered from my website www.theothersidestory.co.uk. All
proceeds from sales of the books are being donated to the Yorkshire Cancer
Centre. You can also follow on Facebook www.facebook.com/theothersidestory
or on Twitter @GrangerKate.

169 thoughts on “End of life care through the eyes of a doctor and a patient

  1. Kate , brilliantly written and a timely input to this currently raging debate I am saddened reading the media view and am very pleased you have written this so articulately . Let us hope this brings some sense to this emotive topic. Stay well Kate .

  2. I am totally supportive of this statement by the registrar. I read the report on the LCP in the press this weekend. I have been a qualified nurse for many years and work with the elderly and have been very involved in the Gold Standards Framework and very familiar with the LCP and end of life care. Nurses and Doctors are not inhumane, or Vets who can ‘put someone out of their misery’ there are protocols ethical issues, and registrations at stake.

    I feel that the recent press release has taken this totally out of context. It you are dealing with patients in the last stages of their lives it is a very sensitive and emotinal time for the patient, families and staff. What the press do not see or have evidence of, is the grateful thanks from many relatives and friends to say thankyou for getting things care right. This is what end of life care and the GSF is about. To obtain the GSF accredditation you have to achieve, and gain evidence from the workplace. Writing people off could not be further from the truth. It is allowing the inevitable to happen in a supportive manner, as nature intended. By using the LCP ‘guidelines’ set out by medical and nursing professionals gives nurses and Doctors tools to prompt ensuring that healthcare professionals deliver holistic care, ensuring symptoms are addressed, it even addresses fluids if appropriate. If the patient and family are familiar with the GSF, there will be an Advanced Care Plan in place, outlining what the patient wants, and do not want in their last days (most ask for symptom control).
    The healthcare professionals do not always get it right, but by using the GSF significant event analysis professionals can, and do evaluate on what went well and what could be done better – and goals to achieve better care for our patients. Perhaps those that have concerns should take an opportunity to actually observe what actually does happen on a broader scale ie hospitals and nursing homes maybe this may produce a different view.
    Annie Scott RGN Cornwall

  3. an inciteful and touching view on end of life care. As a a recently returned to practice nurse I have only seen the LCP a few times, and have to be honest have had my doubts. Not so much that i thought it was used for sinister bed freeing motives, but maybe did feel it was used inappropriately, too soon and those thoughts may have clouded my views and not let me think about it in more depth. Simply poo pooing it as pretty uncaring. However reading your thoughts have made me realise that although the cases i have seen it may have been used to quickly, my issues with it actually come from a lack of understanding about the LCP on my part on fellow nurses parts, lack of communication and and pained to say a lack of really good nursing care in those stages, ie adequate mouth care in absence of artifical hydration. This article has not only changed my views, byt my attitude and also my practice. Thank you.

  4. Wonderful article Kate. I think you are in a position to speak in favour of the LCP in a way that the rest of us can’t. I hope the mainstream press pick your comments up and take note. Stay well.

  5. I am in total support of this article …..I know what I would want when my time comes …..and I also know what I would want for my loved ones …to die with dignity .Well done Kate and thank you for giving me more understanding of the LCP .Although I have worked in nursing homes …for over 15 years and seen the LCP in practice I have also seen horrible undignified deaths .I am aware of the LCP and its contents and aims etc but I do feel I have a lot more understanding of the medical reasons behind it …so thankyou .Also as your friend …I hope more than anything …that when your time comes it is peaceful ..dignified and just how you wish for it to be xx

  6. Thank you for writing such a wonderful article. I have been very distressed by the idea that the public will think the LCP is bad. My sister and I were able to stay with our Mother when she was put on the LCP last year. She was treated with dignity and respect in her final hours and died a pain-free death. We were glad the doctors did not try anything heroic as she had an underlying uncontrolled cancer. It is very hard for hospital staff to know exactly when someone is going to die and most do their best. I would hate it if staff now feel they cannot give people a good death because of this hysteria.

  7. This is an example of the sort of thing written when a deeply thought out and sensitively planned policy is put in the hands of a filthy, lying journalist! People who will never let the truth get in the way of a good story! Sad that Dr Granger’s thoughtful and factual rebuttal will not get the exposure of the original distortion!

    • Couldn’t agree more. It appears that journalists shout the loudest about everybody needing to be held accountable, yet they are squirming like maggots on a hook throughout the Leveson enquiry and apparently consider it to be unfair!

  8. Interesting but not quite evidence based :). Jane Barton did a version of the LCP didn’t she. Amazingly she and her team got the definition of “dying” just that bit skewed. LCP has no definition of dying. The assessment is largely arbitrary. There is a body of research that suggests involuntary euthanasia exists [ Seale et al] and Death by Indifference and a large amount of research show that the NHS is discriminatory towards the elderly and disabled. At the very least, there should be an investigation into the true extent of involuntary euthanasia. I believe there is a total lack of insight if staff consider the LCP to be gold-standard and not open to criticism or challenge. The fact is given the arbitrary assessments on the word “dying”, there should be a investigation into the abuse of LCP.

    It is a sad fact of life that our culture concentrates more on ” good deaths” rather than ensuring that the best care is given in order to ensure people survive and lead good quality lives. I am not denying that good palliative care is required – but it still remains unlawful to commit involuntary euthanasia and that is a fact.

    • Firstly, a well written article.

      I presume your comment is based wholly on sarcasm or you did not either read the blog fully or have an understanding of the LCP. A decision to put a patient on the LCP is made on an individual basis. A combination of Evidence based practice and experience is used to give doctors and nurses an understanding of that disease in context with the patients underlying medical conditions where they conclude that this patient will not survive. The level of evidence that you have quoted is not comparable with this.

      The reason that the majority of these patients are elderly and some are disabled that are put on the LCP is due to the impact that this disease has on their physiological reserve. In my experience as a General Surgical Registrar I have never seen any evidence of discrimiation towards the elderly and disabled and am appauled that you can say that caring for patients in this way is euthanasia. There is a monumental difference between managing the symptoms that patients experience at the end of life and euthanasia.

      Your comments I am afraid show a lack of insight into what happens in hospital medicine and caring for patients with terminal disease. It is a fact of life that not all patients can be cured and as soon as that decision is made then support must be given in all other ways which is what the LCP is all about.

      • Totally agree with you DK, can’t believe what was written above , I work in Neurology and Neurosurgery , where is discrimination against the elderly, we still operate on patients in there 80s and 90s.
        We use the LCP and relatives are involved , when used correctly the LCP is a wonderful pathway.
        The Daily Mail, scaremongering and Jeremy Hunt !!!!, no clear understanding of this pathway, at all.
        Kate you have written a wonderful article , I am a Night Sister , I and my colleagues fully support the LCP.

  9. Hurrah! Someone making sense of a very good policy ! I Recently noticed a bit of hesitance due to media spotlighting uninformed bias, therefore setting this policy backwards ! Anyone using such pathways just has to think how this could imply to their end of life pathway? So don’t be scared in to doing nothing as thats really benefits nobody! We’ve done this before. Communication is key & perhaps reflection on how well a sad situation was made tolerable?

  10. Having experienced episodes of severe dehydration and painful cannulations, I’d take the pain of cannulation 1000 times over the pain and other symptoms of dehydration and electrolyte imbalance. The pain of cannulation is a localised pain, the systemic symptoms of dehydration are grim and all-pervasive in my experience. Each to their own I guess.

    Serious sickness can provide experiential knowledge of symptoms, treatments and interventions that can’t be gained from reading a textbook or following a protocol. With the debate around the LCP, I feel that perhaps doctors are sometimes making value judgements about what’s ‘best’ for patients based on factors that are outside of the experiential frame of reference of most doctors, who generally have to be relatively healthy to stay in employment.

    Also I find it sad that more attention might be paid to the hydration needs of patients if families have strong views. What about patients who don’t have families to advocate for them? Who cares for their hydration needs?

    We know from reports into NHS care that some hospital patients are left with jugs of water that they are too weak to pour themselves, that the NHS is understaffed, that HCAs are in short supply, underpaid and overworked, that some nurses are so overloaded with paperwork that it precludes them from meeting patients’ basic needs and that some doctors feel that attention to basic needs like hydration is outside of their remit or an issue to be dealt with by nurses or HCAs.

    I am not sure that the LCP as it is implemented leaves patients much say in the hydration they receive, as I have noted that in relatives’ comments, dying patients’ requests for fluids were repeatedly declined and that the effects of dehydration were downplayed to families. I understand some patients actively refuse fluids or lose their thirst mechanism when dying, but this is not true for all patients, some of whom may be too weak to hydrate themselves or may not be able to swallow. If I’m going to be subjected to end of life care then I’d prefer it to be quick and humane as in the Netherlands or Switzerland rather than suffer days or weeks of enforced dehydration imposed on British patients.

    I’m just not convinced that this pathway is always implemented properly or implemented on people who are actually terminally ill as the media reports have demonstrated. And I am concerned for patients who don’t have any independent advocates, particularly those who are older or disabled – research has shown that patients in these groups face discrimination in the NHS. It would be interesting to compare the percentage of patients taken off the pathway who have families fighting for them, compared to those who don’t have family support.

    Please note that my comments are not a criticism of you personally. I believe from what you write that you are a good and thoughtful doctor and I’m sure that your patients have all been well-cared for. However, I do think that serious questions need to be asked about the quality of end of life care in this country and whether all patients’ end of life care needs are really being met.

    • You cannot compare the feeling of dehydration to the symptoms that a patient goes through in their last events of life. A patient who is dying will potentially have a range of symptoms which need to be managed in addition to the potential consequences of dehydration. In my professional experience, dehydration is not the patients nor the familes primary concern.

      • It was to my late wife. She was, to put it bluntly,terrified of dehydration. She had nursed her previous husband in his last weeks some years ago and her mother four years earlier before she was diagnosed terminal with breast cancer secondaries. She old me she above all else not to let the care team deprive her of water. In her final couple of days her brain mets left her unable to communicate. I told the nurses about her worries but they said she no longer had a swallow reflex so she would simply choke on water. The nurses and I dabbed her mouth with a kind of lollypop stick. She drifted in and out of consciousness but was not able to communicate. In many, many ways I believe her care was as very good but to this day I wonder whether she should perhaps have had a saline drip?

      • My husband was unconscious for 5 days and he was not given any IV fluid. I am not sure whether this is common practice at the Hospice. He was eating, drinking and talking although confused the day before he went unconscious. I still do not know why whether it was the LCP that put him out drastically as it not been explained to me.

    • Hydration within the LCP is a matter of symptom control, as detailed in the article. If patients are unconcious then fluids are often withheld as they will only prolong the inevitible and the patient will not suffer their omission. I have never seen conscious patients refused fluids, unless otherwise indicated. In the original daily mail article the lady had suffered (in her daughters words) “a massive stroke” with “speech problems”, implying swallowing would also be affected. Consequentially allowing her to eat would risk her choking on her food or developing an aspiration pneumonia, ensuring an unpleasant death with a patient struggling to breath with lungs full of infection. That is not to say mistakes were not made, as mouth care seemed to have been omitted. I also suspect that the distinction between fluid restriction for unconcious/aspiration risk reasons was missed by the nurses/HCA in this case and not communicated properly to the relative. It is also possibly the relative simply misunderstood the reasons for withholding fluids, which is a failure of communication on the medical team’s part.

      If someone is weak but feels thirsty or complains of a dry mouth then this is provided for within the LCP, contrary to daily mail reporting and your claims. I have never seen patient suffer on the LCP as a result of ‘days or weeks of enforced dehydration’. Furthermore, patients without advocates receive exactly the same consideration as those with vocal relatives. I have seen 2 elderly care home patients with disabilities and no relatives on the LCP who received exceptional, attentive nursing care as there were no relatives/carers present in their last hours. As a member of a caring profession there is little I find sadder than a person dying alone and I find the suggestion that we are looking for vulnerable patients to finish off using the LCP to free up bed spaces abhorant. Quite the contrary, in my experience I have often delayed starting the LCP beyond the point where relatives feel that a patient should just be left to die in peace, for fear of later accusations that we did not investigate or treat a reversible organic cause thoroughly enough. A legacy inflicted by the fear of litigation culture.

      However, despite my disagreement with your opinions I welcome your comments, especially those regarding our attitutudes towards vulnerable patients. As a doctor the most suprising outcome from this situation is the realisation that yourself and many other people are deeply suspicious of our actions. I believe the main reason for this is that communication with families suffers as a consequence of excessive workloads and misinformation abounds. When time is dedicated to ensuring families properly understand reasons behind decisions and a concesus is reached, the upset documented in the daily mail article can be avoided. In addition to good explanations I feel that famillies often require more time to come to terms with the bad news that a relative will not survive than hospitals permit. In this respect I feel that conflict may still continue as the huge pressure on beds may influence whether a patient, who experience tells us will not survive, is given a further day of active treatment to appease a family struggling to come to terms, or whether we proceed as clinically indicated. The daily mail are actively advocating for the former. The relative in their article clearly interpretted the rapid acceptance by the medical team that her mother’s stroke was terminal as ‘writing her off’, rather than being a clinically indicated, consultant led decision. It is interesting to note the apparent contradiction in the daily mail’s demand, as in reality it amounts to serving the best interests of the relatives, not the patient; while simultaneously we are accused of lacking patient centred care. However, with the tabloid press publishing unbalanced, poorly researched and often factually incorrect articles it is perhaps little wonder the public do not trust us any more. I personally have received letters of thanks from families for the dignity and comfort we (and the LCP) provided their relatives in their last days. When will the daily mail offer to publish these?

  11. I have watched three people I love deal with death in the past twelve months.

    (1) My best friend. She had terminal cancer. She was in a lot of pain so had morphine Then she had constipation brought on by too much morphine. She was in deep misery and literally going crazy with both the morphine and the constipation. There is a way of dealing with this we were told: there is a special drug which controls the pain without causing constipation. It is expensive. The hospital would not normally buy it because of budget restrictions. We wrote down the name anyway. Then she was moved to a hospice. They are sooooo good in hospices aren’t they? They are all saints there. The hospice had a brilliant idea for dealing with the constipation and the confusion. They gradually reduced the drugs. They did not address the pain. The last time I saw my friend alive she could not speak but she was wordlessly pointing to her leg which hurt because of the tumour pressing on it. Nobody made any attempt to artificially keep her alive. She died a mismanaged death in misery anyway.

    (2) My 93 year old mother was kept in hospital because home was deemed unsuitable until, after being quite bright and bubbly for a bit (she’d been ‘pleasantly demented’ for 12 years. She was quite happy, well cared for at home and my father still adored her) she eventually contracted hospital acquired pneumonia. I got a telephone call saying she was ill in some unknown way, probably a heart attack and probably dying and given the dementia and all we didn’t want them to do anything to prevent her dying did we? When I saw her she was semi-conscious obviously in deep distress through dehydration as much as anything but she could not have ‘lollipop’ stick sponges to soothe her mouth because it had just been decreed that they were dangerous. Finally, and slightly reluctantly on urging from my brother and myself (we did not see dementia as deserving of a death sentence and knew my father would not) she was moved from the small local hospital to a bigger hospital. The ambulance people took one look at her and an antibiotic drip was set up as a matter of urgency in the ambulance. She was then diagnosed with pneumonia, not a heart attack at all and when I saw and spoke with her at that hospital, and after the antibiotics she was able to tell me quite coherently that she was now more comfortable and not in pain. She made good progress for a few days. Unfortunately the stress of the whole experience had proved too much and she died. I suspect the initial lack of interest and the late correct diagnosis did not help.

    (3) My father died two weeks ago. He was admitted with an old problem, choking due to a weak esophagus. Food got onto a lung and this caused an infection. Initially he could fight it, with antibiotics and then he could not. When he died he had had no food for nearly a week because he needed nasal feeding due to the choking problem. A doctor agreed that the lack of nutrition, although not initially an issue, was weakening his ability to fight the infection. There were numerous delays in inserting the tube and then there was another delay over a whole weekend, because things like that are not done at the weekend. I had him ask for a ‘small meal’ and was denied it. I understood why, and supported the decision but was expecting the promised tube to be inserted very soon. He died early on the day the tube was finally due to be inserted (A Tuesday) I was told that day that he would probably make better progress after the tube was inserted..

    I feel I have watched three casually, sloppily managed, deaths of three people I love in the past twelve months. I had to lower my head and concentrate on something else yesterday in order to avoid loosing my temper when I realised those around me where in the middle of one of those ‘Unless you insist otherwise they will keep you artificially alive in hospital when you are dying.’ conversations – triggered by my latest news but without knowing the full details. Someone even announced that she knew someone who had had ‘DNR’ tattooed onto her body, I know most of the people commenting above are health professionals, but, come on, three experiences in a year suggests to me that there is another side to this story and one we should not loose sight of. Come on now. How many people really are surrounded at the end by doctors and nurses trying to keep them artificially alive? From what I have seen, these days it is more a case of ‘Chance would be a fine thing.’ Can we please, please start to worry about the miserable deaths a lot of people in UK hospital suffer through care so casual it borders on neglect?

    • I’ve heard lots of stories of patients being … neglected is maybe too strong, but certainly their needs not really met whilst in hospital. I can also speak from personal experiance. Often attentive care is left to family to sort, and in some cases people die in more distress and discomfort than they should. There are two sides to each argument, and I think it depends on the individuals being treated, by whom and where. I fear a lot of problems come down to a lack of time and money. Sad 😦 Agree with Kate, but on the flip I think Julia’s experience is not isolated.

    • As a healthcare professional, it shocks me to read the experiences you recount (which as the relative of people who have been hospitalised and seriously ill, I know myself are not rare!) but especially to see that there is some excuse given to you for poor management of the dear ones you have lost.

      I am a junior doctor and I regularly work nights and weekends. Naso-gastric tubes can be inserted by most junior doctors, and in some hospital trusts many nurses are also trained to do them. Perhaps your father required a PEG tube which is different. Nonetheless, whether parenteral feeding or NG feeding… these /can/ be done over the weekend or at night. If I am passed on by the normal team that somebody needs an NG tube, I would go and do it, weekend or not, and I cannot imagine that this is not the case in other hospitals. A weekend shouldn’t be an excuse to neglect a patient’s care, and if it is, then please take it up with the hospital in question, because it’s not right that things like this happen. 😦

      The story of your friend in pain is also shocking. Constipation and pain are two very common problems in the terminally or very seriously ill, and a palliative care team should at the very least be capable of addressing those appropriately, even if not solve the problem! It sounds as if your friend did not even receive the appropriate management.

      It appalls me that people (including professionals) believe that having a life-limiting condition means one should stop treating those problems that /can/ be treated. I am thankful that the team I work with does not think this way. This reminds me of a 94-year-old lady who came to us twice, once with sepsis from a bladder infection and once with a heart attack, and both times whenever we would cannulate her she would scream at the tourniquet and tell us that we should let old people like her die… but each time we’ve brought her back to good health and she has gone home safely. Being old and on the gradual slope to death should never mean we stop treating what could be treated, and I regret that those you have lost did not meet with the care they needed.

    • Dear Julia
      I offer my condolences at your recent losses and as a doctor your experiences are all too familiar to me. I would like to briefly offer a perspective based on my experiences of similar situations to answer some of concerns. My comments are made in general terms as it would be inappropriate to pass judgement on situations where I was not present. Nevertheless, you have had some particularly negative experiences and I hope these comments may provide some helpful insight to the other side of the coin.

      1. This case highlights the difficulty of managing analgesia in terminally ill patients. The reality is that medical science is not perfect and the best opiate pain killers can have awful side effects. While it is not possible to know whether your friend’s analgesia could have been better optimised the situation often develops where patients and doctors are stuck between a rock and a hard place when balancing medication and side effects. However counter intuitive it may be, if the balance of symtoms experienced swings towards constipation being more distressful than pain, analgesia may be reduced. This is obviously distressing for all concerned and requires careful discussion with patients and relatives to understand where patient priorities lie and ensure that the limtiations of treatment are understood. It is an uncomfortable truth, but sometimes it is just not possible to make someone comfortable. What is unexceptable is where medics do not bother to try, but from the sounds of it the hospice palliative care team at least considered what level of analgesia was most appropriate.

      Regarding the expensive drug, I assume you are talking about methylnaltrexone. This blocks the effect of morphine on the gut so alleviates constipation when used with morphine. It costs over £30,000 per patient per year, in other words a senior nurses salary. The decisions regarding prescribing expensive drugs are made above the heads of doctors on the ward, who would naturally want everything possible for their patients. The PCTs have to walk the ethical minefield of balancing the needs of the individual with the needs of the many.

      2. I appreciate this situation may be extremely difficult to come to terms with as you clearly feel there was a misdiagnosis which caused her death. It is not possible to know if this was the case, suffice to say that every doctor has been in the position of not knowing if a patient has a lung problem caused by the heart or an infection. The fact she was essentially well and waiting on social care provision is particularly tragic and not unfamiliar. There simply are not enough social workers or care agencies to cope with demand and funding is woefully inadequate. Unfortunately this is out of the medical teams hands and is major source of frustration for us all. You seemed to question the need for care in the first place and your mother clearly had a very caring home. Unfortunately the medical team’s duty of care to the patient often conflicts with a family’s desire to get their relative home. Once a frail elderly patient is in hospital we have a duty to ensure their safety at home post discharge. This is not as easy as it sounds and often elderly relatives cannot be put in the position of acting as a carer by us. However caring and well intended, the reality is that someone in their 80s will struggle to manage a partner if they fall (among other issues), consequentially care packages have to be put in place to prevent problems occurring.

      I agree with you that dementia should not be viewed as a death sentence but would like to reassure you that creating a Do Not Resuscitate order is not a death sentence. DNRs are intended to avoid undignified, futile resuscitation attempts. In the event of an 80 year old with a pneumonia arresting the triggering factor will be a body that has exhausted its physiological reserve. By doing chest compressions and shocking a heart we will not correct this underlying problem, consequentially a DNR is entirely appropriate. Comorbidities contribute to the decision on whether a DNR is signed, but only so far as to determine the futility of attempting resus. The above article is entirely correct in that very few people survive resuscitation, especially the elderly. In general terms a DNR does not mean treatment is being withdrawn, rather that if nature continues to take its course despite treatment, intervention would be futile. I sympathise with your anger about the DNR discussions as it is essential these issues are handled correctly and not infrequently they are not.

      Finally, I too lament the banning of pink lollipop sponges but the reality is that someone, somewhere chewed the end off and choked on it resulting in them being outlawed without a similar replacement.

      3. Again this situation is very familiar, often concerning patients who have had strokes in the past and are now being fed at the risk of choking/aspirating food as you describe. In my experience long delays are often incurred in decision making processes for feeding tubes due to the complex ethical questions involved. In general terms if a patient can no longer safely swallow and has little chance of recovering from this it reaches a point where ethically we have to decide whether artifical feeding is appropriate. The nutritional team stance is frequently that artificial feeding is not advised as the patient has reached the end point of an irreversible disease process. These decisions are not taken lightly as essentially we are accepting that a patient will eventually aspirate, likely leading to their death. As a result long delays are incurred waiting for nutrition team referrals etc while we reassure ourselves that the decision to feed or not to feed is correct, although it should be considered that artifical feeding also carries its own morbidity. I agree, the patient in the middle is the one who suffers because meals are refused to avoid further aspiration and we must make every effort that timely decisions are made and acted upon.

      You will no doubt have your own opinions on the ethics of feeding decisions. I simply wanted to highlight how enormously complex apparently simple issues can become. I cannot know if the delays your father experienced were due to a decision making process or lack of resources to insert the tube. Waiting a week for a PEG feed is not uncommon and is a consequence of stretched resources. In most cases a week delay does not cause undue harm. However, in the cohort of patients with swallowing problems who are often nutritionally poor prior to admission the cost will be greater.

      In conclusion I really sympathise with your experiences and in no way wish to make excuses for anyone involved or undermine your concerns. I just hope I have illustrated that healthcare in an ageing population can be extremely complex and on occasions a satisfactory outcome for all is impossible to achieve. For anyone reading this with relatives in similar situations my strongest advice would be to adopt a collaborative approach with medical teams to better understand what is going on and the challenges that are faced. When addressing complaints in the past I have found that misunderstanding/poor communication lies at the heart of most problems. I appreciate that at times it is difficult to find a doctor to talk to but in almost all situations concerns can be addressed, even if all we can achieve is a greater understanding of an impossible situation.

  12. Hi Kate
    Thank you for this professional and personal statement – a much needed rebuttal to the hysteria of our media. Would that they practised honest communications themselves. Thoughts and best wishes to you.
    David

  13. Your article is extremely good on what the LCP is and how it should be used. The problem is that it is not always used in the way its designers intended or relatives would have wished.

    I am a whole-hearted supporter of the LCP, but it is indisputable that there have been a few cases of severe misuse of it – or, if you prefer, poor End-of-Life Care. The one bad apple turns the whole barrel. The answer is not to trumpet all the instances of good EOLC, but to ensure that those whose understanding of how to follow the LCP is flawed, or whose tendency is to cut corners are re-educated.

    I am no fan of the Daily Mail, but in this case they have done the NHS a favour by pointing up cases of poor practice in the NHS. It is up to the NHS to put its house in order.

  14. You don’t know me, I don’t know you, and I’ve just stumbled on this via a link from a retweet. But I am glad I have and will pass it on myself as it clarifies very carefully and sensitively the crass mis-representation we have recently seen in the press. We should all remember one thing above all else: everyone dies and by its very nature the process of death is not predictable but uncertain, often messy, and varies from person to person. Our society pretends that everyone’s life could be further prolonged if only they got the right care. Not so. Let us all accept that and only then can we work together more carefully to help the process of dying be “better”. Thank you so much for writing and publishing this.

  15. As the debate rages today it has been nice to see your comments Kate both as a health clinician and as a patient. As a specialist oncology nurse I agree that communication is key and that advance directives have a place in palliative care, involving patients and their families at an early stage so as to avoid any upset or problems at a later date.

    Sending you my very best wishes

    jo

  16. The Newspaper who published the original article should be ashamed of themselves. They obviously have no insight into this sensitive subject what so ever. The media need to be well informed before they write such articles as they don’t realise that the mis-information they publish will potentially cause pain and suffering for hundreds of people. I think the newspaper involved need to appologise on national television.

    Thank you to Dr Kate Granger for taking the time to prepare such well written and comprehensive response. I do not normally voice my opinions on forums but this is somthing I feel strongly about. My Fiance is a McMillan nurse and I have a daily insight into patients who die with and without the Gold standards Framework and Liverpool Care Pathway. Patients who are put onto the LCP can come off again, it is not a death list. It helps people to have a dignified and more comfortable death. My Fiance helps people on the pathways by preparing them to die, this is not a nice subject but someone has to do it. She regurlalry comes home in tears when she sees people who have died in severe pain unecessarily. McMillan nurses have many roles, amongst them is to arrange a ‘just in case box’ which is a box of commonly used pre-prescribed drugs which are kept in the patients house and are to be administered in an emergency. These include drugs to help a patients sleep, to help with pain, to dry up chest secretions and anti sickness drugs. The truth is that society as a whole is not regularlay exposed to end of life care and don’t understand what patients go through. Cancer at the end of life is absolutley terrifying. Patients without these drugs can experience pain like nothing they will have ever felt before in their lives and pain which we cannot even imagine. They are not sedating patients they are helping them to have a comfortable, dignified death at home with their family around them rather than on a trolley at AnE.

    I really do think that by mis-informing the public the newspaper involved has done real damage here to public opinion and they should be held accountable just as Dr Rob Wakefield was held accountable for mis-informing patients about the MMR vaccine causing autism.

  17. thank you for this debate

    having seen it from both sides of the fence as both a hospice nurse and a daughter who cared for her dying father I can sympathize with the variety of responses. I have seen both good and bad uses of the LCP and end of life registers.

    I do believe strongly that the LCP when implemented well (including sensitive discussing and regularly reviewing) is absolutely fundamental to dying well. In these circumstances it increases the likelihood of appropriate natural dying and reduces the risk of bad dying. However I do believe that to make a difference there needs to be enough education to health and social care professionals to understand the context of its use as well as how to use it. Families also need support to understand what the process is all about and to be empowered to be able to say their views and thoughts as part of the ongoing caring in the dying process. The LCP or end of life regsiters are not a tick lists to death when implemented well.

    I see huge amounts of compassion from doctors and nurses in hospitals and the community trying to do the right thing (and yes not always getting it right) with the LCP and welcome a public debate about these issues.

    as a society we should be caring and compassionate to the sick and vulnerable (including the dying) and should have more openness about what we do well and what we don’t so so well in order to continue to strive to make things better.

  18. Superb and poignant piece by a doctor who is well aware what it feels like from both sides of the stethoscope. How many can say that? There is nothing Kate writes which jars with my own experience.

    My main concern is the GSF for our patients. I am a GP in a practice with a large number of elderly, many residing in care homes. Many of the frail elderly in the care home do not live more than 12 months. Most of the fit elderly (often with moderately severe dementia) live several years; there death is often a surprise. Not a surprise that these often lovely old folk die, but it is the timing which cannot be predicted.

    It is much more difficult to predict who will die in the next 12 months and my colleagues and I feel very uncomfortable making such a forecast. So much so that we have not signed up to the GSF in our area because (a) it is wrong to make money from such forecasts (b) it is disrespectful for our patients to place them on a “death list”.

    All citizens have the right to compassionate care and proper resources when they are frail and/or very ill. It is immoral and unethical, in my opinion, to focus palliative care services only on those who are on the GSF. If one of my patients falls terminally ill, I expect to be able to call on my local community nursing team to coordinate the appropriate response so the patient dies well.

  19. I too feel infuriated by today’s press on this subject. From a professional and personal perspective the NHS does more for their end of life patients than any other country in this world . That care is provided with compassion , care and complete respect and dignity for the patient, their family and carers. The UK press should be ashamed of issuing such statements .. They can only set the service back to a state of fear to practice best care .

  20. What good sense and from the heart feeling. Thank you for publishing this very personal and important subject. I wish you well x

  21. My mother died in october 2011 she was admitted into the A&E department of the local hospital, she was given 24hrs to live and put on the LCP, she was drugged with morphine, she survived for 13 days and at no time was she offered food, drinks or anything , she was totally confused, her mouth was black on the inside because of dehydration, her lips went back and teeth dropped, this is not dignified care it is utter neglect, a very respectable 77 year old lady , no signs of dementia, she did not deserve to die this way , she died at 220pm on the thursday her death was not certidied untill 18.00 hrs and she was pre on the same day , prepared for mortuary at 20.10pm
    there is nothing dignified, we as a family lodge a complaint to the hospital on the grounds of neglect and to date have had no response 13 months ago, i would not encourage a loved one to take the LCP, a very bad option in my opinion

    • Jjanet’s (Janet’s?) experience with her mother sounds horrific. Unfortunately, after my experiences over the past twelve months (involving three different hospitals, two in Wales, one in Birmingham and a Macmillan hospice) I can well believe it. As Jill says, this is the flip side of things – and it is a very ugly one. I do not know whether any of my loved ones were put on the LCP, but in the light of this discussion I will be trying to find out. This is not about witch hunting, and looking for individuals to blame. The trouble is that in an understaffed and underfunded NHS (and the charity sector is not necessarily all that hot either from what I have seen) these things are happening and, from what I have seen, they are not being talked about enough. Any voices raised are still (as here) being drowned out by what seems to be fast becoming a very vociferous LCP lobby. I am not convinced of the virtues of LCP at all. It sounds to me like an extension of exactly the kind of thing that my poor father (a geriatrician working in what was then a small specialist geriatric hospital) frequently argued against, over many years. However, setting my doubts aside, even if LCP is potentially a wonderful way of caring for the dying.in our struggling system can help to legitimise a certain kind of behaviour, or to put it more bluntly it leaves the way open to serious abuse, as Jjanet’s story shows. I wish we could spend a little less time obsessing about whether or not we are wrongly trying to keep people alive and more on worrying about what seem to be becoming the increasingly murky horrors of how many people are now dying in hospital: without food, water, pain relief or family and friends around them.

      Jjanet also raises the issue of warning that someone is dying. In my mother’s case we were told the next morning. In my father’s case we were told half an hour before – too late to do anything: it was obvious to us that he was not in a good state when we visited that evening, but no-one suggested that the end might be close. In the case of my friend, her daughter was able to say in a visitor’s room and to be with her mother at the 3 am end (good). Exhausted daughter and friends were also then faced with a demand to find a funeral director to remove the body within hours because the room was needed and there was no place to store the body (bad.)

      I am sorry that the writer of this blog is facing this awful worry about her own impending death. Hopefully, as a recently working health professional herself she will receive better treatment. However, I think she needs to consider the possibility of the ‘flip side’ of so called palliative care, as well.

  22. I feel humbled to read this and really hope it helps people understand the LCP and other issues surrounding end of life better. Sending my very best wishes to you Dr Granger 🙂

  23. Couldn’t have put it better myself.
    Stick that in your pipe Daily Fail. Though sadly few of their regular subscribers will actually get to read this!

  24. Like others I think this an insightful and timely piece. I think good end of life care is one of the greatest services we can provide to our patients and their families

  25. LCP is on my Board agenda today, I shall take a copy of your blog to inform the discussion, Thank you for such a clear and cogent piece.

  26. As a Registered Paramedic, I deal with death on a daily basis, it does not make me a sad or a hard person infact anything but. I find it an absolute privilidge to ‘see someone out of the world’, myself and my crewmate have our own personal standards – often getting ourselves in to trouble as we have been ‘on scene’ too long – often making tea, comforting loved ones, ringing the undertaker etc. For me, I much prefer to be called when it is too late as I too believe that resuscitation is a brutal and undignified way to die and when my time comes I certainly don’t want to go through it. When it comes to DNAR’s and living wills for terminal patients it becomes a whole different ball game. JRCALC (guidelines we work to) suggest we should make our own clinical judgements (if the patient is terminal with no advanced directive) but our Service policies and procedures advise the opposite – it is a very grey area, the threat of punishment for making a wrong decision always overhangs us.
    I have a particular interest in end of life procedures and believe that the LCP (when used correctly) is the right way to a ‘good death’ but I also think that communication with both patients and relatives is the fundamental key to getting it right.
    The publishing newspaper should be ashamed and ‘bad news sells papers’ is truly the term to be used here, it would be interesting to have feedback from families who’s relatives have been on the LCP to learn a true and legitimate opinion.
    Dr Kate – I wish you all the best and hope that when you can fight no more that your wishes are followed.

    • I am also a state reg paramedic.I do believe the LCP is a good thing however I have a story of my own to share. Having recently lost my father suddenly and unexpectedly in hospital I do think this pathway may sometimes be introduced to a patient/family far too soon. My dad age 77 was being treated for ca lung and had undergone very successful radiotherapy treatment. He had had a recent bout of diarrohea and had virtually stopped eating. I got him admitted to our local A&E at 2245hrs, he was admitted to a ward at 0215 hrs and I was informed by the duty doc at 0800hrs that morphine and midazolan were being prescribed. I really don’t understand why they were prescribing these drugs for him at such an early stage and at the time they still did not know why he had deteriorated so quickly. Needless to say, there is now going to be an inquest. He passed away suddenly at 0915hrs. The morphine and midazolan were never actually administered but I ask myself why they prescribed these drugs in the first place so soon after him being admitted onto the ward with a very positive prognosis from the oncologist only the day before. I wonder. I do actually agree with the pathway and believe it allows a dignified and painfree death. My best wishes to Dr Kate. x

  27. A succint and persuasive argument. From what I’ve seen and heard in the media, all the cases where there have been issues have arisen from circumstances where the LCP is being inappropriately and/or incorrectly implemented. The very first page of the document requires a member of the MDT signing that they have discussed the plan with the patient and/or loved ones. As you state, it is difficult to predict exactly how things may progress but that initial discussion should explain this, and that constant review and communication are essential. As one respondent has said, a futile, distressing, painful and traumatic resuscitation should be the last thing anyone would wish for a dying loved one and the reasons for precluding this must always be honestly discussed, no matter how difficult and challenging that may be…

  28. I think we ought to bombard the Daily Mail website with this excellent article. I’m an HCA in the UK and we try our hardest to make sure that all patients are comfortable in their final days. I’ve certainly seen no abuse of the LCP on my ward.

  29. As a junior doctor who has recently been covering medical (including HDU) on my own over a few nights, I thank you for this article. Many of my patients who were obviously dying and whom the day team had clearly decided were to be palliated, were not put officially on the LCP because of the furore that has been raging about it. It puts everybody in a difficult position because these patients are not appropriately flagged up, as a consequence, and there is often delay in getting hold of the relatives at the moment where they pass away, and other issues around the care these patients receive near the end of their life.

    Although some people clearly have misused the LCP… the bad publicity it is getting has made a lot of people suffer who would otherwise not have.

  30. What an truly, inspiringly written account of the ideals of the LCP and GSF. Having myself worked as a GSF coordinator, and now a trained RGN in a palliative setting, I have first hand experience of the benefits of these tools. The malicious, incorrect reports by the Daily Mail should be exposed as nonsense.
    Patients are assessed on individual cases, to assume that all palliative patients are placed onto the LCP is a misinterpretation. Scare mongering will only lead to backward steps in patient care in those nearing end of life.
    Well done on voicing your opinion, you have the support of myself and plenty other colleagues!
    Best wishes
    June

  31. Kate, thank you so much for your insight, both as a patient and physician. You truly are an advocate and inspiration for all.
    May your words reach many for reassurance, comfort, acceptance and openness.
    The LCP is a wonderful tool – long may it continue to aid all concerned (patient, family, carer) to experience a ‘good’ death.
    I wish you well and delight in the fact that you are a compassionate, empathetic doctor who can educate and touch so many.
    Once again, thank you and may you be cared for the way you so obviously care for all.
    With all best wishes,
    Senior staff nurse, acute elderly ward

  32. What an excellent article. Well written, accurate and passionate. As a GP with a particular interest in End of Life care I was saddened and angry about the recent misrepresentation to the public of what the LCP is. This article needs public attention. Have you written to all the major newspapers?

  33. Fantastic article Kate. Fair play.
    Although I’m not medically trained, my wife is, and I find it outrageous that people think such a thing and also that the media are that shallow to believe the story, let alone print it. We have one of the best, if not, the best health service in the Western world. Why the hell would our medical professionals dream of doing something as unprofessional as to euthanize someone and risk their career in doing so.
    We should spend time praising our hard working medical professionals not trying to stab them in the back

  34. Kate- I could kiss you! After a difficult day of dealing with the fallout from the ill informed press articles, your blog gives a reassuring and insightful account of the LCP. I truly believe and witness every day, the improvements to end of life care that the LCP brings.

    To hear stories from families where patients haven’t died well is heartbreaking and should be investigated at a local level however we should never blame the LCP for this. In my experience of more than 25 years specialising in palliative care in hospice and hospital, I am acutely aware of the determination within healthcare professionals to provide compassionate care at the end of life and that this remains a very firm priority.

    I wish, like many others who have commented, that your thoughts could be published in a way that reaches a mass audience. We need a strong and credible advocate right now who is prepared to challenge the media but more importantly inform the public. Only after that happens can we truly begin to debate, reflect and learn (from the good and bad experiences).

  35. This is such a wonderful article to read. After a horrid experience this weekend in circumstances exactly designed for the LCP and trying to involve relatives in end of life care, but having relatives refuse to accept us putting the patient on the LCP because they “read the Daily Mail” and “know what you are really doing” – I am just desperate for some real understanding and insight of the LCP to be put out into the public domain, and not just amongst healthcare professionals.

  36. I am a junior doctor, and when the 1st daily mail article was published I was horrified at the picture it painted of doctors and nurses trying to free beds by putting patients on a death pathway. I found it deeply offensive both personally and to my profession. I have never seen it used in that way in any hospital I have worked in. Still, melanie phillips managed to use the responses of doctors to write a second article, suggesting that the fact that doctors defended the pathway is “chilling”.
    Thanks Kate for your unique perspective on the LCP from the physician and patient point of view.

  37. Pingback: Is the Tide Turning in the End-of-Life Care Debate? | binscombe.net

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