"We believe that "people in the last days of life should be identified in a timely way and have their care commissioned, coordinated and delivered in accordance with their personalised care plan, including rapid access to holistic support, equipment and administration of medication". (NICE Quality Standard 13, 2011)"
Are SMART objectives used in
office and in industry really an appropriate tool and properly suitable for a
care setting?
"Rapid" implementation of LCP anticipatory drug
protocols allows no room for error. What methodology is it that may infallibly
determine a patient is "in the last days of life" ?
Small wonder Andrew Bridgen has described this as 'worrying.'
"how we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services" (EoLC Strategy, 2008)."
This statement in praise of LCP
infers that how we treat people as they leave this life is a measure of how we
treat people on their journey through it.
The fact is that how we are treating people on their
journey through life - unless coverage given to this is by newspapers has been
equally "wilfully misleading" - is, frankly, catastrophic! Perhaps
that litmus test holds true, then, for the LCP is also, frankly, catastrophic!
There have been reports that the awful, awful things reported to
have taken place, and to be taking place in the killing fields that are our
hospitals have been due to under-staffing and neglect of training. If
that is so, that may be because the End of Life Strategy has swallowed up
millions in funding and left little else in the kitty.
What does this tell us? Well, I know what it tells me.
The fact that this is The Marie Curie
Paliative Care Institute is also very
worrying. The Marie Curie
Paliative Care Institute is considered beyond criticism and
above reproach, and yet their words and their behaviour invite criticism.
This is The Marie Curie
Paliative Care Institute -
Latest news
Institute represented at ministerial Round table debate 26th November 2012.
There has been a lot of adverse media coverage about care being given to dying patients. MCPCIL continues to work with the DH, EoLC programme and other national bodies to improve the care and support given to all dying patients and their families. We believe that "people in the last days of life should be identified in a timely way and have their care commissioned, coordinated and delivered in accordance with their personalised care plan, including rapid access to holistic support, equipment and administration of medication". (NICE Quality Standard 13, 2011)
It is vital to continue this work as "how we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services" (EoLC Strategy, 2008). Please see further information relating to this below.
Press release 26.10.12
Recent media coverage has highlighted a number of examples where people have reported that care in the last days of life has not been of high quality. Several national organisations, co-ordinated by the National End of Life Care Programme, are to initiate projects to learn from people’s experiences so that improvements can continue to be made.
http://www.endoflifecareforadults.nhs.uk/news/all/learning-from-peoples-experience-of-last-days-of-life
Read the Joint Statement Consultant Nurse Palliative Care Reference Group Oct 2012, written in response to recent media coverage.
It is vital to continue this work as "how we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services" (EoLC Strategy, 2008). Please see further information relating to this below.
Press release 26.10.12
Recent media coverage has highlighted a number of examples where people have reported that care in the last days of life has not been of high quality. Several national organisations, co-ordinated by the National End of Life Care Programme, are to initiate projects to learn from people’s experiences so that improvements can continue to be made.
http://www.endoflifecareforadults.nhs.uk/news/all/learning-from-peoples-experience-of-last-days-of-life
Read the Joint Statement Consultant Nurse Palliative Care Reference Group Oct 2012, written in response to recent media coverage.
Letter from Minister
In a letter addressed to the Editor of the Daily Mail, Care and Support Minister Norman Lamb addressed the issues raised in the newspaper’s “wilfully misleading” coverage of end of life care. Follow the link below to read the Minister's letter of Friday 19th October 2012.
http://www.endoflifecareforadults.nhs.uk/news/all/norman-lamb-mp-responds-to-daily-mail-end-of-life-care-coverage
The link supplied requires a
passworded login.
Mr Lambs letter may be found on NHS National EoL here -
Norman Lamb MP responds to Daily Mail end of life care coverage
In a letter addressed to the Editor of the Daily Mail, Care and Support Minister Norman Lamb addressed the issues raised in the newspaper’s “wilfully misleading” coverage of end of life care. Writing on Friday 19th October 2012, the Minister’s letter reads:
Dear Editor
Your headline, ‘3,000 doctors putting patients on ‘death lists’’ (Thursday 18 October) is wilfully misleading.
The GP End of Life Care register is no more sinister than other lists of those with diabetes or heart failure who need additional care. It is a way of making sure that planning so the patient’s wishes come first and ensuring that people are cared for with dignity and appropriately at the end of their life.
You also insist the Liverpool Care Pathway systematically denies treatment to those who are dying. Nothing could be further from the truth; it is simply about ensuring that patients receive whatever treatments are right for them in the final days and hours of their life. More than 20 leading organisations including the Royal College of GPs, Marie Curie Cancer Care, and Age UK have already jointly signed a statement supporting the Pathway and addressing your misrepresentation. I am copying this letter to them.
Almost three quarters of people say they would choose to be cared for at home, in their own bed. But just over half actually die in hospital. Your article was wrong to assert that NHS organisations are moving patients away from hospital in order to save money. By preparing an End of Life Care plan, patients have the best chance of having their wishes met – surely something everyone can agree is a good thing.
Despite the fact this work gives patients better care I am concerned about reports some doctors are not properly communicating with their patients. I cannot stress enough the importance of involving patients and families in their care. I have asked officials to look at how best we can ensure that this always happens. I will also be meeting patient groups to ensure that their interests are always paramount. I am very happy to discuss any of these issues directly with you.
Yours sincerely,
Care and Support Minister, Norman Lamb
Care and Support Minister, Norman Lamb
It is interesting to note that The Marie Curie
Paliative Care Institute and NHS National EoL page, in
quoting Mr. Lamb, seek to infer that his remarks concern the LCP. Actually,
they do not!
Mr. Lamb says:
"Your headline, ‘3,000 doctors putting patients on ‘death lists’’ (Thursday 18 October) is wilfully misleading."
Now, that really is misleading! And
most telling that neither Marie Curie nor the NHS are entirely trustworthy and
will use whatever devious means at their disposal to press their case.
A scientific article concludes this post below on the fallacies
of prediction and the meaning of “the last
hours or days of life”, the universe and everything.
The comments related to news of the GP Death Lists. GPs are
actually advised to employ such scientific methodology as to "Use their
intuition" and to "Ask the surprise question" in placing a
person on their death lists. May God help us, Mr. Lamb, if this is what your
Department is promoting and you may not.
This latest kerfuffle in the
newspapers is not new. The LCP has a bad reputation. This is why it is
constantly being 'amended' and 'updated' in order to bury its mistakes.
Here follows
comment from 2010, from the Medical Ethics Alliance -
NEWSLETTER - 4
Saturday, 13 February 2010 20:26
The Liverpool Care Pathway
There has been criticism of this pathway for the terminally ill in the national press. One letter, also signed by the MEA, pointed out that the pathway can be misapplied to the non dying with lethal effect and that diagnosing imminent dying is not an exact science. This was followed by many letters from members of the public which gave instances of relatives who had been put on the pathway and who survived for long periods when eventually removed, often after prolonged pleading with medical and nursing staff.
The pathway has been updated and now includes more references to training and discussion but has still left open one of the most contentious issues, namely whether fluids should be withdrawn, The MEA have consistently said that there are practically no circumstances when oral fluids should be stopped and we think that fluids should be given by other means where there is a danger of opiate derivatives and dehydration causing terminal delirium. We are also concerned about the use excessive sedation which deprives a patient of consciousness.
The result of this controversy is that some patients will refuse the Liverpool Care Pathway in an advance directive. We know of two organisations producing cards or bracelets refusing it.
The problem seems to have arisen because the pathway, developed in hospices for people with end stage cancer has been applied in other circumstances where imminent death is not inevitable.
Leopards may not change their spots, but leopards are not people. Even Saul saw the light on the road to Damascus and, whilst prejudice has blinkered Dr. Saunders vision such that, like Priest and like Levite, he averts his gaze, not wishing to see what has befallen the innocent traveller upon the Pathway, Mr. Lamb may yet redeem himself and not betray those he has courted and encouraged to trust him.
If not then, alas, for whither went Government of the people,
for the people, by the people that government may tread with impunity and, with
art and with artifice, connive to crush the will of the people via such
grooming strategies employed by the NCPC and by blatantly imposing its
policies in secret such that we are subject to what is, effectively, a
compulsory protocol imposed upon us without our knowledge, without our
permission and against our will?
This is Dr. Sam Herman -
Like hell "one or two mistakes should not be allowed to discredit it"!
I took the Hippocratic Oath to preserve life, not to end it. My ethical duties as a physician are clear: a) do no harm (primum non nocere); b) advance only that which is good for the patient; and c) respect the judgment of the patient or patient representative after full disclosure and discussion of risks vs. benefits. Nowhere in the version of the Hippocratic Oath I took does it say "defer to the morons in the federal government to tell you what to do with a patient".Is there any Brit doc worth their metal ready to stand up and say that?
Concluding article from Catholic Medical
Quarterly -
Catholic Medical Quarterly Volume 62(4) November 2012
THE DANGERS OF ABANDONMENT OF EVIDENCE-BASED MEDICINE IN THE USE OF THE LIVERPOOL CARE PATHWAY.
PATRICK PULLICINO, PROFESSOR OF CLINICAL NEUROSCIENCE, UNIVERSITY OF KENT, CANTERBURY, KENT, UK
Abstract:
Evidence-based medicine is increasingly regarded as the gold standard of clinical care. The Liverpool Care Pathway (LCP) is a pre-specified “care plan” used for patients who are judged to be “in the last hours or days of life”. 29% of patients in National Health Service (NHS) hospitals currently die on the LCP. The median time to death on the LCP is 33 hrs. A review of the literature reveals that there are no published criteria that can predict death within this time frame. The lack of an evidence-base for institution of the LCP makes it a form of assisted death rather than a care plan. The personal judgment of the physician and other medical team members about perceived quality of life or low likelihood of a good outcome are is probably central in the decision to put a patient on the LCP. There are likely many patients who have been killed by this pathway who could have lived substantially longer. The LCP is also likely to negatively affecting doctor-patient relationships and have a negative effect on medical care, particularly of the elderly, in NHS hospitals.
Introduction
Before a patient is commenced on the Liverpool Care Pathway (LCP) a determination has to be made that the patient is in “the last hours or days of life”[1] The purpose of this paper is to estimate the accuracy of a determination that a patient is within “the last hours or days of life”. Firstly, I will review the accuracy and limitations of prediction and prognostication of survival. Secondly I will attempt to determine what being “in the last hours or days of life” means and the basis for this determination. Thirdly, I will review the factors that are associated with withdrawal of care. Finally, I will discuss the implications of the LCP for the care of patients.
Prediction
Prediction is different from prognostication.[2] Prediction is a point estimate of survival time by a clinician. A prediction is at best an educated guess and often incorrect. The agreement between actual survival and predicted survival is poor (weighted kappa 0.36) even in terminal cancer patients.[3] Statistical models are no better at giving point estimates of survival time than clinicians. Using a statistical prognostic index, in 272 patients with lung cancer, 49% of clinicians’ predictions and 52% of statistical predictions were in “serious error” (life span overestimated by 100% or underestimated by 50%).[4]
Prognosis
Prognosis is a statistical range of survival times based on assessing the patient’s survival by use of a previously published prognostic scale. Prognostication has limited accuracy. Survival is frequently over- or under-estimated and only about 25% of survival estimates are correct to within one week.[3]
The majority of prognostication research has been done in cancer patients, with advanced disease with a high likelihood of being fatal within a relatively short time. Non-cancer diagnoses have a less predictable course making prognostication more difficult. Neurological disease has to include a separate prognostication for meaningful cognitive recovery if the patient survives, which complicates prognostication. Every patient is unique with personal characteristics that affect their outcome.[5]
The Palliative Prognostic Score (PaP) is the most frequently used survival score for “terminally ill” cancer patients. However, at least 50% of the score is subjective and based on a clinical prediction of survival and depends on the experience of the rating clinician. The PaP has been validated to divide patients into 3 distinct risk groups. The median survival for the groups are: 76 days, 32 days, and 14 days. The matching 30 day survival probabilities are 87%, 52%, and 17%.[6] A short term prognostication index that includes a nomogram for probability of survival at 15 days was inaccurate in up to 32% of cancer patients.[7] In this study, in a quartile (99 patients) of mean survival 10 days, over 10% survived much longer, with survival up to 200 days.
Literature Search
A MEDLINE search was conducted with search words “terminally ill” and “prognosis”. 405 citations were returned and these were reviewed for relevance to prognostication in a very early time frame. The shortest prognostication time found for a heterogeneous cancer/non-cancer population was for survival less than 1 week using the Palliative Performance Scale.[8]
The “Last Hours or Days of Life”
The LCP states that the patient has to be in “last hours or days of life”[1]. The median time to death on LCP was 33 (12-79) hours and was identical in the first two audits of the LCP.[9] I was not able to find any research published that addresses prognostication within this very short survival time scale.[5] The LCP does not in fact attempt to use any published prognostication index to determine eligibility for the pathway. For this reason, being “within the last hours of days of life” is a prediction not a prognostication.
Clinical factors that are associated with withdrawal of care.
In an international study of 851 patients in 15 Intensive Care Units, the main three factors that were associated with withdrawal of mechanical ventilation were: physician prediction of survival likelihood <10%, (HR:3.5 [1.4-8.8] p0.002), physician prediction of severely impaired cognition (HR:2.5 [1.3-5] p0.002) and physician perception that the patient did not want life support (HR:4.2 [2.8-6.8] p<0.001). Age, prior functional status, severity of illness or organ dysfunction did not independently predict outcome.[10] In an accompanying editorial it was stressed that the 3 major factors deciding withdrawal of care were subjective judgments of the physician. A concern was raised that physician biases about a patient are relayed to the family and that this affects what family members say about preferences, creating a self-fulfilling prophesy.[11] In a study of factors deciding withdrawal of care in patients with intracerebral haemorrhage,[12] patients who had surgical removal of the haemorrhage were treated more aggressively and had better outcomes despite a similar size of intracerebral haemorrhage and degree of coma to non-surgical patients. The most important prognostic determinant was the level of support provided. Patients in a traditionally “high mortality risk” category could have a reasonable outcome if treated aggressively. Practitioners tend to be overly pessimistic in prognosticating outcome based upon data available at the time of presentation. It was concluded that withdrawal of support in patients felt likely to have a poor outcome leads to self-fulfilling prophecies.
Case of Patient put on the Liverpool Care Pathway.
The patient was a 71 year old man with history of prior left frontal cerebral haemorrhage and infarct and subsequent seizures. He had a degree of vascular cognitive impairment. He was walking only with assistance and living with a supportive family. He was admitted under my care with generalized, followed by persistent focal motor seizures. Confused, agitated, hallucinating and aggressive at times, he developed pneumonia and became febrile, noisy and needing one-on-one nursing.
I found him deeply unresponsive on a Monday morning and was told he had been put on the LCP over the weekend after a consultation between the doctor covering and the head nurse. He was on morphine via a syringe driver. The relatives were distressed and told me they had not agreed. I removed the patient from the LCP despite significant resistance. The seizures came under control and four weeks later the patient was discharged home to his family. He needed extensive support with wheelchair, ramps, commode, cot-sides, hoist and community nursing. He was admitted 3 months later for gastrostomy tube insertion. Fourteen months after he was first put on the LCP he was admitted to a different hospital with aspiration pneumonia. He was febrile, despite antibiotics, drowsy and on 95% oxygen and not improving. A best interest meeting between doctors, a nurse and a physiotherapist decided to put him on the LCP and the patient died 5 hours later.
The Liverpool Care Pathway: Conclusions
There is no scientific evidence to support a diagnosis that a patient is in “the last hours or days of life”. The LCP does not in fact rely on scientific evidence to determine initiation of the pathway. The lack of an evidence-base for initiating the LCP makes it an Assisted Death pathway rather than a “care” pathway. Since there are no objective criteria for initiating the LCP, the criteria used are likely subjective biases of the team that make the decision to put the patient on this pathway. As the above research shows, physician biases often underestimate the chance of a good outcome. The physician relays a poor outlook to relatives, making a determination of a poor outcome into a self-fulfilling prophesy.
If we accept to use the LCP we accept that euthanasia is part of the standard way of dying in the NHS. The LCP is now associated with nearly a third of NHS deaths. Very likely many elderly patients who could live substantially longer are being killed by the LCP including patients with “terminal” cancer, as the above research shows. Factors like pressure of beds and difficulty with nursing confused or difficult-to-manage elderly patients cannot be excluded as biases towards initiating the LCP. /p>
Starting a patient on the LCP, is an abandonment of evidence-based medicine in a critically-ill section of the hospital population. This goes entirely against the gold standard of modern clinical care and is likely to have very serious ramifications, not only for the patients put on the LCP but for the practice of medicine in NHS hospitals. The LCP is already altering the natural history of disease and in this way negatively affects mortality statistics. Nursing of elderly patients who are on the LCP in proximity to those in whom evidence-based medicine is determining care, is confusing to junior medical staff and nurses alike. Junior staff and nurses are also vulnerable in terms of their careers and may find it more difficult to voice ethical concerns they feel. Use of the LCP is likely to have negative effects on elderly patients in particular, who are not on the LCP and to undermine the doctor-patient relationship. The LCP needs to be abandoned in favour of evidence-based medicine in all patient groups including those with terminal cancer.
REFERENCES
- The Liverpool Care Pathway Core Documentation at: http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/LCP_V12_Core_Documentation_FINAL_(Example).pdf
- Workman SR. Prediction versus prognosis. CMAJ. 2010; 182:176
- Glare P, Virik K, Jones M et al. A systematic review of physicians' survival predictions in terminally ill cancer patients. BMJ. 2003; 327:195-198
- Henderson R, Keiding N. Individual survival time prediction using statistical models. J Med Ethics. 2005; 31:703-706
- Lau F, Cloutier-Fisher D, Kuziemsky C et al. A systematic review of prognostic tools for estimating survival time in palliative care. J Palliat Care. 2007; 23:93-112
- Pirovano M, Maltoni M, Nanni O et al. A new palliative prognostic score: a first step for the staging of terminally ill cancer patients. Italian Multicenter and Study Group on Palliative Care. J Pain Symptom Manage. 1999; 17:231-239
- Feliu J, Jimenez-Gordo AM, Madero R et al. Development and validation of a prognostic nomogram for terminally ill cancer patients. J Natl Cancer Inst. 2011; 103:1613-1620
- Harrold J, Rickerson E, Carroll JT et al. Is the palliative performance scale a useful predictor of mortality in a heterogeneous hospice population? J Palliat Med. 2005; 8:503-509
- National Care of the Dying Audit Hospitals Round 2 at: http://www.mariecurie.org.uk/Documents/HEALTHCARE-PROFESSIONALS/Innovation/generic-NCDAH-round-2-final-report-0210.pdf
- Cook D, Rocker G, Marshall J et al. Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit. N Engl J Med. 2003; 349:1123-1132
- Drazen JM. Decisions at the end of life. N Engl J Med. 2003; 349:1109-1110
- Becker KJ, Baxter AB, Cohen WA et al. Withdrawal of support in intracerebral hemorrhage may lead to self-fulfilling prophecies. Neurology. 2001; 56:766-772
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