If there's one thing you do this coming month, make this the first thing you do -
Please register your opposition here...
Wednesday, 31 August 2011
The coupling of the word “terminal” with sedation refers to the intention and effect, as does the use of “palliative” with sedation. The intention of terminal sedation is that the person dies from the action. The withdrawal of fluids and nutrition seems to be the method by which this is achieved. It is legally tolerated as part of a medical protocol that is unchallenged and, apparently, unchallengeable. This protocol is the Liverpool Care Pathway.
It is important to note that when a person is deeply and continuously sedated and hydration and nutrition is withdrawn, that the outcome is clear. This person will die of dehydration.
“The act of deep continuous sedation of a person, who is not yet nearing death, combined with the withdrawal of hydration and nutrition, when death by dehydration occurs — this is an act of euthanasia.
“In this circumstance, the death was not caused by the person’s condition but rather by the intentional decision to dehydrate the person to death.
“This is often referred to as ‘slow euthanasia’ because the death is intentionally caused by dehydration, and yet it takes longer to complete the act of euthanasia than giving a person a lethal injection….
“When a person is terminally ill and actually nearing death, the withdrawal of hydration and nutrition is not euthanasia because the person dies of their medical condition.”
It may be that the use of the word “terminal” in the context under discussion is designed deliberately to confuse. Those who promote doctor-assisted death or euthanasia often blur the natural and obvious distinctions by the use of emotive but otherwise meaningless catchphrases.
Early Terminal Sedation (ETS)
Victor Cellarius writes in the
Although terminal sedation has received widespread legal and ethical justification, the practice remains ethically contentious.…
It is clear that providing terminal sedation in combination with the withholding or withdrawing of life-prolonging treatments such as fluid and nutrition can foreseeably hasten death significantly.There are ethical justifications for the use of sedation in palliative care and thus it would seem that ETS is an ethically and legally acceptable practice.
However, what emerges from the literature is the repeated assertion that terminal sedation must be restricted to use in imminently dying patients — the ‘imminence condition’ — and that therefore ETS is unacceptable.
This restriction has taken on greater significance with the trend of palliative care to include the care of patients who are not imminently dying.
Continuous Deep Sedation (CDS)
Every year more than 1,000 people are admitted onto the wards at St Christopher's Hospice in Sydenham, South
. It is at the forefront of research and education in end-of-life palliative care. London
Dr Nigel Sykes, medical director at St Christopher's, said CDS can be appropriate for patients who become confused and deeply agitated - but only when nothing else can relieve their distress.
Research by Clive Seale, professor of medical sociology at Bart’s Hospital and the
We recognise that human suffering may lead someone to request euthanasia or assisted suicide, but we also recognise that these requests often represent a "cry for help". We need to care for the person, even when caring is difficult, and not kill the person who is difficult to care for.
In such usage, “terminal” would merely describe the person’s state, not the intended outcome of sedation. The author further confirms this by acknowledging the use of sedation in patients who are not imminently dying.
It is difficult and probably wrong to attribute motives to those who deliberately use the combination of sedation and the withdrawal of fluids and nutrition to hasten a patient’s death.
There is little doubt that sedated patients are probably a great deal easier to manage, and death by starvation or dehydration in such circumstances has a predicable time-line, whereas death from the underlying disease may not.
With an ageing population and increasing health care budgets, this sort of “nudge-nudge, wink-wink” approach to reducing costs must be a great temptation.
Wiley Online Library
Early terminal sedation (ETS) refers to palliative sedation in which deep, continuous sedation is combined with cessation of nutrition and hydration in patients capable of receiving life-sustaining nutrition and hydration, orally or parenterally. In the typical case, the patient is able to eat and drink sufficiently to sustain life, and the sedation given is deep enough to make eating and drinking, even with assistance, impossible. In uncommon instances, the patient may be receiving life-sustaining nutrition and hydration parenterally, for example through an intravenous line or a percutaneous feeding-tube, prior to sedation. The sedation itself is understood to be similar to that employed in deep, continuous palliative sedation – the patient is unrousable, but breathes without assistance. This treatment is ‘early’ in the sense that deep and continuous sedation is given before the patient's condition has reached a point at which it is unalterably and imminently fatal. The actual occurrence of this point will depend on what treatments are employed or rejected, and remains a matter of clinical judgement. But despite this dependence on clinical criteria, ETS is best understood temporally in the sense that it is given before the patient is, in the common clinical idiom, ‘actively dying’.
In contrast to sedation given to patients for whom hydration and nutrition is no longer life-sustaining, ETS will certainly hasten death and it is, in this regard, contentious.5 The central claim of this paper is that ETS is a distinct entity and should be treated clinically, ethically and legally as such. This point has recently been made by van Delden, but without explicit justification.6 The aim of this paper is therefore to strengthen the point. EST is best treated as neither completely analogous to terminal sedation given to the imminently dying nor completely analogous to euthanasia or assisted suicide.
This paper will introduce several specific claims:
Including -1) ETS is a contentious practice;
2) Seen as the sum of two parts – deep and continuous sedation given as palliation, and treatment refusal – ETS appears analogous to terminal sedation;
3) Seen as a whole differing from the sum of its parts, ETS appears analogous to assisted suicide or to euthanasia;
4) Notwithstanding the above analogies, ETS cannot be reduced to either analogy and remains in an ethical tension;
5) Understanding and treating ETS as a distinct entity is conceptually and ethically the best way to address this ethical tension.
Research by Clive Seale, professor of medical sociology at Bart's and the London School of Medicine and Dentistry, suggests the use of continuous deep sedation (CDS) across the
"The surprising thing was that in theDr Philip Harrison, a GP now based in
UK the prevalence of continuous deep sedation until death was very high indeed: 16.5% of all deaths." That is exceptional. That is twice as high as in UK Belgium and the . But while rates of CDS in the Netherlands appear to be rising, the corresponding use of euthanasia has declined, indicating that the one is replacing the other. Netherlands
He was put under CDS without being consulted, and so had no chance to say goodbye to his family. This sort of arrogant behaviour among LCP professionals is becoming almost commonplace.
"I don't know what the legal term is but to me it was as near to a form of murder that I had come across," he said. "I have never seen that in my medical practice before. I've seen euthanasia once, but I've never seen anybody being put to death without consent." Dr Harrison said he is concerned about what could be going on across the NHS in the name of caring and terminal sedation. The truth is, no one knows.
Being put to death with consent is euthanasia; being put to death without consent is, surely, by definition, MURDER!
Typically, in the Hospice setting, in the circumstance of the diagnosed terminally ill patient, the decision to cease hydration and nutrition is taken in the context that it is no longer ‘life-sustaining’ and to continue would be arduous and cruel because the patient is ‘actively dying’. The decision is not taken lightly but within the full moral implications of what is known as ‘futile’ treatment.
With the advent of LCP and its spread outside of the Hospice setting across the NHS and beyond, this decision is being made in more and more disregard and ignorance of its moral implications. Such lax disregard is contentious and worrying. The moral implications are actually being given little or no heed at all, the act of ceasing hydration and nutrition being but one of the processes and procedures of the end-of-life protocol itself, but one more step along the pathway.
The LCP-empowered nurses proceed with their duties oblivious of these weighty concerns. The pleas of family to reinstate and to provide hydration go unheeded. Relatives and loved ones are actually threatened if they attempt to intervene. Read more on this here - Hospital 'starved' elderly mother.
It is a disquieting outcome that such apparent short shrift for and lack of knowledge of the medical ethics behind such terms as ‘futile’ should be so widespread. This is entirely due to the Liverpool Care Pathway being implemented outside of its original context.
This is not palliative care. This is not care in any shape or form. This is a conveyer belt deathway. When your time is deemed come by the LCP trained professionals, death will be induced. Dying will be a tidy affair, no loose ends; not fraught with the uncertain emotion of grief, but contextualised and sanitised.
has commented on this matter. (, August 6, 2011).
The issue of whether or not the provision of nutrition and hydration to patients should be considered as medical treatment and, therefore, subject at some level to the discretion of doctors, has come about only through the spread of LCP.
Following court action in
Ontario , it was ruled that doctors are required to obtain the consent of either the patient or a substitute decision-maker (such as the patient’s family or guardian) before withdrawing life-sustaining interventions. Canada
Italy’s parliamentary lower house voted 278-205 to pass a bill that forbids euthanasia or assisted suicide and also requires that patients not be denied life-sustaining food or fluid.
The newly enacted Italian law makes the necessary exception to feeding and hydrating in those cases when a patient is in the terminal stages of a terminal illness — this is, when the patient’s body is no longer capable of absorbing or processing food or water, making such life-sustaining efforts futile – ethically and actually - and even burdensome.
An article in the Glasgow uncovered almost routine starvation in Scottish aged-care facilities and estimated that up to 50,000 patients were dying in that manner in British public hospitals each year (
More recently, an article from pointed to the fact that patients are often being sedated and then deprived of food and fluids. The article reports that, for some patients, being put on this “pathway” becomes a self-fulfilling prophecy of death because the subsequent removal of basic sustenance actually contributes to or causes early death.
This coupling of sedation to removal of food and fluids is often referred to as “terminal sedation”.
This is a world away from merely sedating someone who is experiencing unbearable pain — that is, using sedation solely as a palliative tool with a clear palliative intention to relieve someone’s pain and symptoms. As a palliative tool, this is also used to give a patient respite from pain in circumstances where their underlying illness is not yet terminal.
Sedation in these circumstances, for a day or two, can give the pain a chance to subside. This affords the sufferer great relief. Patients, according to the stage of their disease, will often return to relatively normal conditions of life and, in the early stages, may even return home and resume receiving palliative outpatient services.
Clearly, that is not what is meant by “terminal sedation”.
Clearly, neither is palliative sedation at the end of the progress of a disease — in other words, when the patient is clearly dying. This type of sedation can be managed so that the patient has intervals when they are awake so that they can communicate with family and friends gathered at their bedside.
So, if there are a wide range of circumstances when sedation is appropriate, why are not all types of sedation simply called “palliative sedation”?
What is inappropriate is not always appropriate.
Friday, 26 August 2011
Liverpool Care Pathway demands a ‘diagnosis’ of onset of death to be made and that this be followed by induction. This will involve the withdrawal of ‘futile’ intrusions accompanied by the intrusion of opiates in order to inflict a condition of “medical futility”.
An End of Life Care - Symptom Control document from NHS Milton Keynes actually takes the form of a flowchart. This particular End of Life Care flowchart document, however, blindly ensures that the pathway to death is adhered to with a deterministic strictness that defies all logic.
In referring to particular cases or interventions as "futile", the technical meaning and moral weight of this term is not always appreciated. It is important to be clear about the meaning of the concept.
To build such moral criteria into processes and procedures whereby the decision to enact them depends not upon the criteria itself but upon other criteria used as a decision-making tool to embark upon those processes and procedures is a perilous course surely tantamount to folly. When the criteria used to embark upon this particular course - or pathway – are as general and all-purpose and ‘all things to all men’ as those specified below, then that is a folly rash beyond belief.
Cases abound where the prospective candidate for consignment along the Pathway presents with all the appropriate signs, ticks all the right boxes, and yet rallies and improves and survives. In such cases, the Pathway has become commonly – and jocularly - known as the Lazarus Care Pathway. All to often, however, the pathway is followed resolutely unto death.
‘Diagnosing’ death is a difficult – precarious – enough task for a professional experienced in the care of the terminally ill, as those professionals at the Marie Curie Hospice in Liverpool will themselves attest. When doctors and nurses in hospitals and care homes across the NHS are expected to come to such decisions in enacting The Liverpool Care Pathway with the non-terminally ill, tragic outcomes are bound to occur.
The Liverpool Care Pathway was designed as a hospice-based care protocol for the terminally-diagnosed cancer patient; it is increasingly being used for patients who are deemed to be in the last days of life irrespective of diagnosis. Like a creeping plague, its spread is becoming global.
The LCP is intended to be ‘evidence-based’. Even so, recognising that a patient is dying is not at all as straightforward and clear-cut matter by any means. Even so, in practice, the clinical team simply have to ‘agree’ that the patient is ‘dying’.
Two of the following ‘signs’ are looked for -
- The patient is bed bound
- The patient is semi-comatose
- The patient is only able to take sips of fluid
- The patient is no longer able to take tablets
Once the patient has been diagnosed as ‘dying’, the LCP-trained nurses feel it makes documentation more accurate and less time consuming. LCP-trained nurses actually favour this and find it rewarding. The dying process becomes a controlled and predetermined procedure.
In fact, it is flawed at the outset for, once enacted, the LCP replaces all other forms of documentation.
In fact, it excludes all other possibilities but that of the predicted scenario.
In fact, it makes ‘dying’ a tidy matter, much as induction makes birthing a tidy matter, less fraught with nuisance and the unexpected.
In fact, the LCP is no more than that - death by induction.
In fact, NHS funding is actually tied to implementation of the LCP via the CQUIN payment framework of the Department of Health. Thus, cash-strapped Business Managers will make a determined effort to inflict the LCP across the wards and ensure that its processes and procedures are adhered to without fail and without question.
The LCP is a legal document that every member of the LCP team works with. It has three main sections:
1. Initial assessment
2. Ongoing assessment
3. Care after death.
With implementation of LCP, practice for the prescribing of ‘as required medication’ (PRN) for patients deemed ‘dying’ of non-malignant disease has changed dramatically. The LCP actually prompts the prescription of PRN medication. Prior to implementation, patients with non-malignant disease rarely had PRN medication prescribed for pain, nausea and vomiting, agitation or respiratory tract secretions (RTS). Post-implementation of the LCP, patients with non-malignant disease had PRN medication prescribed routinely.
This prescription and administration of PRN medication for patients with non-malignant disease is perceived by clinical staff as being one of the major achievements of LCP.
However, whilst individual palliative care of patients with non-malignant disease may warrant prescribing of PRN medication to ease suffering, that must be an individual medical decision made by the clinician to deal with the situation and cannot be a blanket approach to every situation.
It demands the skill of the clinician, for "there is art to medicine as well as science" (Hippocratic Oath); it is what separates the good doctor from the outstanding doctor, the ordinary and mediocre from the exceptional and remarkable, for care is motivated by empathy and compassion, not by process and procedure.
That is the soul and art of Medicine.
Thus, these potential candidates, these intended victims - by commission of treatment started and by omission of treatment withdrawn – are set adrift across the Styx and the LCP replaces Charon to ferry them on their journey, whilst the opiates of forgetfulness and oblivion replace the waters of Lethe and they depart finally this, their earthly existence.
Liverpool Care Pathway –Its aims and purposes
Dedicated nurse professionals, keen to advance their nursing careers and add LCP to their portfolio of skills, become blinkered by the tunnel-vision concept of LCP. LCP is a bandwagon and industry which is swamping rational thinking to the contrary with the charge of denial of the basic human right of high-quality death. These dedicated nurse professionals stand in awe of its self-admiring plaudits and its blinkered logic.
From the day of conception, from the day of birth, every day is a bonus, for every day is a day along the pathway of life that brings us one day closer to our eventual, inevitable demise. It is, or should be, the task of Healthcare to provide assistance along that pathway, to provide one more day and to protect and to provide assistance and guidance to avoid the obstacles and the impediments along the way.
The LCP actually removes the individual responsibility for care. It is a pathway of death. Adherence to a LCP flowchart eliminates that accountability demanded by personal clinical decision-making. Shirking personal accountability in favour of the team approach to diagnosis that LCP provides denies the patient the option of an alternative to its predictive, ‘measurable’ outcomes.
The LCP can be discontinued it is claimed, for example if a dying patient improves, but as is logged in newspaper and on news bulletin, blogged as anecdote on discussion board and in discussion group, the pathway is, generally, a one-way street of no return.
The misguided and the malicious, each sees in the LCP an opportunity.
It presents the possibility to mechanise and sanitise existence into a more bland and acceptable version for the one. It removes accountability and responsibility from the equation. Everything is reduced to the fine print of practice and procedure. Even grief itself becomes a predetermined outcome.
For the other, at a personal level, an unwanted and unwelcome ‘nuisance’ may be removed without risk of disapproval or deprecation, neatly slotted into an acceptable ‘care’ environment under the kind ministrations of the recognised LCP protocols. At another level, healthcare in general and geriatric healthcare in particular has more finite and predictable outcomes; forward-planning becomes a less worrying, less onerous task in the management of its financial consequences.
This last may be the most certain of its aims and purposes.
Thursday, 25 August 2011
In pursuit of our cause, we have been ignored, lied to, and our petitions have actually been returned ‘refused’ by Royal Mail! The Healthcare Commission report readily owned up to actual falsification of the documented record and listed a litany of failures.
The provision of hollow apologies from faceless administrators and to be informed that ‘learnings’ have been taken; the knowledge that recommendations have been made and that these have been required to be put into force - for example, in the dispensing of analgesics – this is not enough. In fact, this last recommendation only bears out what was observed to be the case, that my mother was plied with morphine!
The dismissive manner in which some of our complaints were dealt with left us aghast. The matter of the damage to my mother’s hearing aid was ‘remedied’ by the setting in place of a new procedure by which patient’s personal effects would be logged and documented on a special form drawn up especially for that purpose. A copy of this form was even provided to us for our apparent approval.
How may a hearing aid, a device essential for verbal communication to proceed satisfactorily or at all, be classed as just ‘patient property’ and how did the damage occur? That is no matter of any account, apparently.
We were advised by both The Parliamentary and Health Service Ombudsman Service and the Healthcare Commission that they are unable to achieve disciplinary action against individual members of staff. They recommended that we take our complaint to the Nursing and Midwifery Council (NMC) if we wished to pursue that outcome.
The complaint resided with the NMC for almost a year and a half before we were presented with the following gobbledegook of a response:
We are not empowered to undertake a general investigation into the performance or conduct of unnamed individuals at a particular institution or organisation where it is said that there have been general failings on the part of that institution or organisation or its staff in general.
Our hopes that justice might prevail were trounced because those responsible for this act of death by induction (murder) were following guidelines set out and laid down by the hospital trust as policy. Thus have they escaped the jurisdiction and oversight of any regulatory body.
We had suspected and quickly realised that there was some policy set in place. It took nearly four years for us to learn via PALS that this policy goes by the name of the
Liverpool Care Pathway.
The Pathway is a set of processes and procedures put in place not for benefit of the patient but to protect the practitioner!
A Catalogue of Catastrophic Failure
To withhold the truth is a lie by omission and is as much a lie as if a lie were actually told - a lie by commission. Surely, public servants, those entrusted to administer public institutions, would never be involved or permit themselves to be involved in such deviousness?
Executives, managers, administrators, both in the NHS and those bodies with oversight of the NHS, at every and whatever level, are when all is said and done public servants, paid from the public purse. And yet, in our dealings with those we petitioned, we did encounter only deviousness and artifice.
The so-called ‘complaints process’ set in place, which we followed resolutely to obtain information and resolution to our concerns, was arduous, irksome and tiresome. Many times, we reached our wits end untangling the convolution of lies and misleading responses we received.
We have stated previously that this did not begin as a complaint, but that it has become one. We were well justified in asking: Were Dr Shipman’s misdemeanours also raised by family or friends and were their concerns also dismissed, in like frivolous fashion, by PCT and Healthcare Commission alike? Our own experience would suggest this to be the case.
In The Independent, it was reported that an inquiry into the Mid-Staffordshire NHS Foundation Trust reported last year that at least 400 patients may have died due to neglect and poor care.
The chief NHS regulator has apologised for missing clues to appalling levels of care at Stafford Hospital that developed into the worst health service scandal for a decade. Can any apology be apology enough? She is plainly clueless!
How many failings make a serious failing? How many serious failings make a major failing of care?
How on earth may failings continue until they are virtually the routine unless they are not ‘failings’ at all but, in fact, the routine of policy?
To be informed that failings have been acknowledged and that learnings have been taken is insufficient and inadequate and too late.
We need to know that those responsible have suffered stern rebuke; that they have offered contrition and remorse for what they did do and regret for what they did not. Only then may we walk away from this. Only then can come closure.
Sunday, 21 August 2011
Hippocratic Oath: One of the oldest binding documents in history, the Oath written by Hippocrates is still held sacred by physicians: to treat the ill to the best of one's ability, to preserve a patient's privacy, to teach the secrets of medicine to the next generation...
Written nearly 2,500 years ago, the Oath is the most famous text in Western medicine,
It is a duty incumbent upon every medical person to protect life and to do no harm. And yet, there has long been a policy set in place across the NHS that the misguided and the malicious have applied to make no great effort to intervene to preserve life, but to let them go and even to help them on their way. This policy is now set in stone through the Liverpool Care Pathway. Once diagnosed as dying, death by induction under the protocols of the LCP will proceed.
The Hippocratic Oath
I SWEAR in the presence of the Almighty and before my family, my teachers and my peers that according to my ability and judgment I will keep this Oath and Stipulation.
TO RECKON all who have taught me this art equally dear to me as my parents and in the same spirit and dedication to impart a knowledge of the art of medicine to others. I will continue with diligence to keep abreast of advances in medicine. I will treat without exception all who seek my ministrations, so long as the treatment of others is not compromised thereby, and I will seek the counsel of particularly skilled physicians where indicated for the benefit of my patient.
I WILL FOLLOW that method of treatment which according to my ability and judgment, I consider for the benefit of my patient and abstain from whatever is harmful or mischievous. I will neither prescribe nor administer a lethal dose of medicine to any patient even if asked nor counsel any such thing but perform the utmost respect for every human life from fertilization to natural death and reject abortion that deliberately takes a unique human life.
WITH PURITY, HOLINESS AND BENEFICENCE I will pass my life and practice my art. Except for the prudent correction of an imminent danger, I will neither treat any patient nor carry out any research on any human being without the valid informed consent of the subject or the appropriate legal protector thereof, understanding that research must have as its purpose the furtherance of the health of that individual. Into whatever patient setting I enter, I will go for the benefit of the sick and will abstain from every voluntary act of mischief or corruption and further from the seduction of any patient.
WHATEVER IN CONNECTION with my professional practice or not in connection with it I may see or hear in the lives of my patients which ought not be spoken abroad, I will not divulge, reckoning that all such should be kept secret.
WHILE I CONTINUE to keep this Oath unviolated may it be granted to me to enjoy life and the practice of the art and science of medicine with the blessing of the Almighty and respected by my peers and society, but should I trespass and violate this Oath, may the reverse by my lot.
A widely used modern version of the traditional oath was penned in 1964 by Dr. Louis Lasagna, former Principal of the Sackler School of Graduate Biomedical Sciences and Academic Dean of the School of Medicine at Tufts University:
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment andtherapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.