Dutch research reflects problems with the Liverpool care pathway
BMJ 2008; 336 doi: https://doi.org/10.1136/bmj.39556.400370.80 (Published 24 April 2008) Cite this as: BMJ 2008;336:905
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Last week four doctors, an aristocrat with an interest in medical ethics and a lecturer in English literature published an open letter in the Daily Telegraph decrying the promotion of the Liverpool Care Pathway in moribund patients. [1] I believe this action warrants censure for needlessly creating distrust between patients, relatives and doctors.
The Liverpool Care Pathway has provided a means of ensuring dignified care for dying patients in numerous circumstances [2] and has secured widespread acceptance across the UK. [3] There is ongoing debate about some aspects of the pathway – particularly regarding terminal sedation [4] – however, the appropriate forum for such discussion is within the professional literature, not the popular press. With all due respect, Professor Millard et al. displayed staggering naivety in thinking that in the context of the trans-Atlantic debate on state provision of healthcare (one thinks of Governor Palin’s comments about ‘Death Panels’ [5]) their comments would be fairly reported. The Telegraph’s headline was ‘Sentenced to death on the NHS’: several hundred readers expecting their relatives to be denied basic medical and nursing care voiced their fears on the Telegraph website.
While the profession should value debate, it – along with all medical interventions - should always be tempered with consideration of unintended consequences. Unless we are to be offered a surprise defence of the doctrine of double effect, no medical professional involved in the provision of end of life care will thank Professor Millard et al. for this intervention.
[1] Millard PH, Cole A, Hargreaves P et al. Daily Telegraph (London), 3rd September 2009.
[2] Veerbeek L, van Zuylen L, Swart SJ et al. The effect of the Liverpool Care Pathway for the dying: a multi-centre study. Palliat Med 2008; 22: 145-51.
[3] Mullick A, Benyon T, Colvin M et al. Liverpool care pathway carers survery. Palliat Med 2009; 23: 571-2.
[4] Treloar AJ. Continuous deep sedation: Dutch research suggests problems with the Liverpool Care Pathway. Br Med J 2008; 336: 905.
[5] http://www.facebook.com/note.php?note_id=113851103434 (accessed 8th September 2009)
Competing interests: None declared
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I would like to reply to Dr Treloar’s criticism of the Liverpool Care Pathway. (Letters page, vol 336 26th April 2008)
The first criticism is that patients may not be about to die when they are put on the pathway. The criteria is that the patients consultant makes the decision that they are approaching the last 48 hours of life, together with other members of the multidisciplinary team, to the best of their ability. They will of course have already ruled out any treatable cause for the patients illness and established that their condition is indeed terminal. The four criteria on the front of the document are an added aid to making this decision, not the only one.(1) The patient then has ‘as required’(PRN) medication prescribed in order to address comfort issues and syringe driver medication should it be needed. This is done at this point to avoid any delay should the patient develop symptoms that PRN medication cannot address. Only then is syringe driver medication commenced. If the patient does not develop any symptoms then no medication is given, as with any other hospitalised patient having PRN medication prescribed. The staff using the pathway are trained to give the minimum amount of medication required to achieve the goals to keep the patient pain free and comfortable. Continuous deep sedation is not the ultimate aim of the pathway . Indeed, sedation has been found on occasion, to prolong life due to the slowing of metabolism at this time.(2)
Dr Treloar raises the issue of nutrition and fluids.(3) Once the patient is no longer able to eat and drink and they are considered to be in the last 48 hours of life, nasogastric or peg feeding and intravenous or subcutaneous fluids can actually cause more problems than they solve. They can lead to vomiting and increased respiratory secretions and lack of them does not always cause distress to the patient. This is something which should be considered on an individual basis and is not dictated by the pathway. Medical and nursing staff are encouraged to use their judgement if a patient is on the pathway for longer than normal or relatives are particularly distressed by withdrawing fluids. They can trickle in a minimal amount of subcutaneous fluid and ensure regular mouthcare to maintain patient comfort. The leaflets that accompany the pathway help to explain this to relatives and loved ones in a sensitive manner. (1)
Despite the evidence that the LCP is a collection of evidence based interventions, doctors are still reluctant to put patients on it; and yet if they rally after a rest and good symptom control they can come off the pathway – it is not a death sentence. Used appropriately the LCP is a framework of guidelines to aid doctors and nurses in giving the best end of life care to patients and their relatives. It is still necessary to utilise excellent communication skills when applying the recommendations to ensure that the aims of the pathway are clear. It is also an audit tool to ensure that the excellent care given is documented and auditable.
It is therefore possible that problems with the LCP may be in the education in its use and interpretation rather than the pathway itself.
Sister Pamela Williams
Cancer Services
North Cheshire NHS Hospitals Trust,
Warrington, Cheshire.
Pamela.Williams@nch.nhs.uk
(1) Liverpool Care Pathway.(2006) http;//lcp-mariecurie.org.uk
(2) Kaldijian.L.C. Jekel.J.F. Bernene JL, Rosenthal. GE, Vaughan-Sarrazin. M. Duffy.TP. (2004) Internists attitudes towards terminal sedation in end of life care. Journal of Medical Ethics. 30,5,499-503.
(3) Treolar AJ. Dutch research reflects problems with the Liverpool care pathway. 2008; BMJ; 336: 905
Competing interests: None declared
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There are additional responses to this letter posted [1] under responses to the original editorial by Murray et al, from Fiona M Downs et al, Mary Knowles, Prof John Ellershaw as well as clarifications with an apology from Adrian Treloar.
[1] http://www.bmj.com/cgi/eletters/336/7648/781
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With 30 years' experience as a geriatrician, I always found it difficult to predict death, which is what is being sought here, in order to implement the LCP appropriately. While the LPC offers useful guidelines on the management of end-of-life symptoms, it seems to be rushing in with sedation and opiates without considering whether hydration and nutrition are also still valid treatment.
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Dr A. Treloar is right to draw attention to the potential dangers of inappropriate terminal sedation when patients are put on the LCP. They need to be properly assessed and regularly reviewed. Having drugs prescribed just in case should not make it more likely to sedate patients to death but with pressure on beds and financial pressure it is not inconceivable to see patients being sedated inappropriately. Patients in certain environments eg hospices may be more assured of this proper assessment and regular review than others in other areas eg nursing homes. We need to develop our palliative care services in the community.
Competing interests: None declared
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As a non specialist I contribute to this debate with hesitancy. Nevertheless, in spite of the laudable aims of the Liverpool Care Pathway to manage symptoms in the terminally ill and to stop all futile measures, I agree with Adrian Treloar and Mary Kiely that assessment of hydration is an important omission.
For some terminally ill patients dehydration may exacerbate other symptoms such as agitation or confusion. Correction of dehydration by the use of subcutaneous fluids may in some patients be helpful.1
The use of terminal sedation in the absence of proper assessment and correction of dehydration is bad medicine and at its worst (as in Holland) can be a substitute for euthanasia.
1 Fainsinger RL, Bruera E. When to treat dehydration in a terminally ill patient? Support Care Cancer 1997;5:205-11.
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Contrary to Dr Treloar's concerns, continuous deep sedation is not an instruction of the Liverpool Care Pathway (LCP). The anticipatory prescribing of drugs to be administered when, and only when, distressing symptoms develop, is at the heart of advance care planning.
However, some clarification may indeed be required. When we introduced an end-of-life care pathway in our Trust five years ago, we felt that the existing entry criteria for the LCP were too broad (many post-operative patients would also qualify!) and we therefore created our slightly amended Care of the Dying Pathway. Central to this are its initial three eligibility criteria: firstly, that the patient has advanced, progressive and life-threatening disease; secondly, and crucially, that reversible causes for the current deterioration have been considered and appropriately managed; and finally, that intensive treatments such as cardiopulmonary resuscitation and ventilation are deemed futile and inappropriate. We also allowed for the consideration of artificial hydration, where clinically appropriate, and highlight the importance of thorough assessment.
The majority of dying patients will not require deep sedation, but end-of-life care pathways are vital in guiding those doctors and nurses less familiar with, and confident in, the management of the terminal phase. In these days of reduced medical continuity in patient care, it is also essential that doctors continue to exercise clinical judgement when assessing patients whose condition is deteriorating.
Competing interests: None declared
Competing interests: No competing interests
Treolar’s misrepresentation of the Liverpool care pathway does a disservice to an initiative that has changed end of life care in the UK.(1) The pathway does not demand the use of sedation or opioids in all cases, only that these are available if distressing symptoms arise. This has ensured that thousands of dying patients do not wait for hours to have distress treated because of unavailable drugs. There is no requirement to set up a syringe driver in all cases, only if a regular antiemetic, opioid or sedative is needed. The pathway does not restrict the use of hydration or any other comfort measures that may be needed. Finally, even if sedation is needed, this is always titrated to the individual using the minimum needed, not ‘continuous deep sedation’ as Treolar claims.
It is good to see palliative care in print, but more care is needed to ensure this describes current practice.
References
1) Treolar AJ. Dutch research reflects problems with the Liverpool care pathway. 2008; BMJ; 336: 905.
Competing interests: None declared
Competing interests: No competing interests
Adrian Treloar in his letter in the BMJ 26/4/08 misunderstands the fundamental premise of the Liverpool Care Pathway (LCP). A patient is only put on the pathway once it is recognised they are dying imminently, ie within hours to short days. (1) In this context and in this time frame, the evidence does not support that artificial hydration or nutrition has a role to ease symptoms and suffering and may, in fact, add to it. (2) In keeping with the National Council for Palliative Care’s guidance on artificial hydration and nutrition, that a blanket policy either for, or against, the use of artificial hydration and nutrition at the end of life is ethically indefensible, an individual can justify maintenance of artificial fluid or nutrition within the LCP, which would then be documented as a variance. As part of good care, patients will be supported to maintain oral fluids/food as long as they can, but as part of the dying process, this ability will be lost. The prime focus for patients and those close to them is that they are comfortable, supported and treated in a dignified way. The proactive prescribing of medications for comfort is essential to ensure that any symptoms that develop are swiftly managed, with only so much medication, targeted to the symptom, as is needed. If medication is given in the absence of symptoms, this is poor practice to be challenged. Syringe drivers are only a mode of delivery when the oral route is lost. Some patients die without the need for syringe drivers.
Deep sedation is not recommended as part of the LCP and is not usual practice in UK Palliative Care teaching. Sedation can be a feature of symptom management, but is not the prime aim. Hence morphine will be used to treat pain or breathlessness, glycopyrronium to treat bubbly secretions, haloperidol to treat nausea or agitation/delirium, midazolam to treat distress etc. The majority of patients do not need large doses of these medications to achieve the necessary symptom control. In a study from St Christopher’s Hospice, dose increases in sedative medication at the end of life were not associated with a shortened survival. (3)
The key assessment is the identification of dying. The focus of care is then clarified and the LCP provides a structured format to achieve this. It is unhelpful to raise concerns about hastening death by deep sedation or denying hydration and only fuels misunderstanding and fear. The introduction of the LCP must be supported by a comprehensive teaching programme and the structure of the tool supports regular evaluation and audit.
The LCP is not a fete acompli to dying and occasionally patients get better and come off the pathway. In the acute general hospital I work in, where we have supported over 300 patients on the LCP, this has occurred on 14 occasions.
This is an essential time to be effective clinicians. Poor experiences of dying will resonate in relatives’ memories. The LCP supports clinicians to get it right.
References:
1. Marie Curie Palliative Care Institute. Liverpool Care Pathway for the dying patient (LCP), 2008. http://www.mcpcil.org.uk/liverpool_care_pathway; 2. C Campbell, R Partridge. Artificial Nutrition and Hydration. Guidance in end of life care for adults. The National Council for Palliative Care, May 2007. 3. Sykes N and Thorns A; The use of opioids and sedatives at the end of life. Lancet Oncology; 2003 May;4(5):312-8.
Competing interests: None declared
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The role of the media in health care design
The public, patients and carers need to be involved in the design of healthcare, and the involvement of national newspapers[1] in discussing the Liverpool Care Pathway (Palliative Care Guidelines) is to be welcomed.
However reasonableness doesn’t sell newspapers. Prof Millard’s letter to Daily Telegraph[2] is a case in point. Half-truths and non-sequiturs are presented as a cogent argument, and one has to wonder what point the group of authors are trying to make – is it that their unquestioned authority is under threat?
Let’s debate this pathway with full disclosure – what happened beforehand, what merits this new pathway brings, and what are the inherent risks. Let’s recognise that everyone should have an equal point of view, that doctors and nurses aren’t the ones dying or losing a loved one. But let’s above all be honest. Sincerely
REFERENCES
1 “Briefing: Fatal Decisions” by Helen Brooks; Sunday Times 6 Sept 2009 accessible at http://www.timesonline.co.uk/tol/life_and_style/health/artic le6823241.ece
2 “Dying Patients” by PH Millard, Anthony Cole, Peter Hargreaves, David Hill, Elizabeth Negus and Dowager Lady Salisbury; eletters Daily telegraph 3 Sept 2009 accessible at http://www.telegraph.co.uk/comment/letters/6133157/Dying- patients.html
Competing interests: None declared
Competing interests: No competing interests