Liverpool Care Pathway - The Voice In The Wilderness

Where have all the old folks gone, long time passing...?





Features of opiate toxicity may be interpreted as un-controlled pain, leading to the administration of more opiate medication. The consequences are increased sedation, dehydration and further toxicity (O’Neill and Fallon, 1997).

Where have all the old folks gone, long time ago...?

This is from the Baker Report - Final version : October 2003 –

Agitation, confusion and myoclonic jerks occur as a consequence of opiate toxicity. These features may be interpreted as un-controlled pain, leading to the administration of more opiate medication. The consequences are increased sedation, dehydration and further toxicity (O’Neill and Fallon, 1997)

It’s been ‘snowing’ all over. Weaned on Barton's Wessex Guidelines and versed in non-verbal pain assessment the doting angels look at you - and interpret that non-verbal response accordingly.

Where have all the old folks gone...?

The pre-emptive prescribing of the LCP shares its origins with the GSF Surprise Question; they are both grounded in Barton methodology and the Barton Care Pathway trialed at Gosport...

On the basis of these sources of evidence, I have concluded that a practice of almost routine use of opiates before death had been followed in the care of patients of the Department of Medicine for Elderly People at Gosport hospital, and the attitude underlying this approach may be described in the words found in many clinical records – ‘please make comfortable’. It has not been possible to identify the origin of this practice, since evidence of it is found from as early as 1988. The practice almost certainly had shortened the lives of some patients, and it cannot be ruled out that a small number of these would otherwise have been eventually discharged from hospital alive.- The suppressed report of the Barton Care Pathway

The practice "almost certainly had shortened the lives of some patients"...

Gone to EoLC, everyone...

There are always consequences. A practice rolled out as policy will multiply those consequences. The statisticians did not get it wrong. It is time for justice to be served. The medics and the politicians must be hauled before the courts to face their accusers.

From the BMJ archives, 19 May 2008, a strong and consistent voice warns in relation to this practice rolled out as policy -

"... It matters not whether we discuss continuous deep sedation or a lesser degree of sedation. Any level of sedation, even a small dose of morphine in the frail elderly, can result in dehydration that may prove fatal if left untreated for days. Unfortunately palliative carers tend to overlook this basic fact. They prefer to discuss sedation and hydration as separate issues without linking the two in their minds. In doing so they are in danger of missing or evading the point, which is that sedation without hydration kills."

This voice is the voice of Gillian M Craig of the Medical Ethics Alliance. Her voice has warned, consistent and true, over the years.

This is Gillian M Craig on Pub Med, September 1994 –

This submission stirred some interest and debate to which the author responded with The Debate Continues. 

Her voice has been a voice in the wilderness. 

That original Pub Med article, 'On withholding nutrition and hydration in the terminally ill: has palliative medicine gone too far?', is more pertinent and relevant than ever and should be made required reading for those rolling out the EoLC programme...

Palliative medicine is a relatively new and growing specialty and the hospice movement is held in high esteem by the public. Some doctors, however, have reservations. There are dangers in grouping patients labelled 'terminal' in institutions, because diagnoses can be wrong. There is a risk that if all the staff in an institution are orientated towards death and dying and non intervention, treatable illness may be overlooked. Not everyone who is referred for terminal care proves to be terminally ill, and no physician should accept such a diagnosis without reviewing the evidence personally.

Certain policies that are practised in palliative medicine would be dangerous if applied without due care and thought. In particular the view that in the terminal phase of disease 'no form of artificial hydration or alimentation is undertaken, all measures not required for comfort are withdrawn, and no treatment-related toxicity is acceptable'. It is not uncommon for the elderly to be admitted to hospital in a seriously dehydrated condition, looking terminally ill. A treatment-orientated physician will rehydrate these patients energetically, often with dramatic results, in order to buy time in which to assess the situation carefully. A therapeutically inactive doctor would lose many patients for the sake of avoiding a drip. Two examples from my personal experience will illustrate this point.

Case 1
An elderly man was sent to hospital for terminal care with a diagnosis of carcinoma of the pancreas. He had indeed had a stent inserted at another hospital to relieve bilary obstruction due to tumour. However, his 'terminal' illness was due to a small stroke and uncontrolled diabetes mellitus. He recovered with insulin and intravenous rehydration and lived happily for several weeks more.

Case 2
An elderly man was admitted for terminal care but the geriatrician felt the diagnosis of cancer was not well established. The main problem was severe dehydration with ischaemic feet and severe pressure sores on the heels. With intravenous rehydration and intensive nursing he recovered and went home for 18 months.
It is important for the public to realise that most patients with terminal illness can continue to eat and drink as and when they wish. Only in the last days may they be too weak or tired to bother, in which case the lack of food and drink will not contribute to death. If dehydration develops under these circumstances it is a natural consequence of irreversible disease, and artificial hydration would not be appropriate.

Care has been downsized and those assessed for the one percent are earmarked for EoLC. The language of Newspeak is rife and the frail elderly are assessed according to the Lakhani Recommendations.

We are half way there...

The ‘one percent’ is not just a Death List; it is to be identified at an ‘early stage’ to sign up for ACP documents. This is an ongoing process of grooming to agree Advanced Directives and DNR plans. The document is a statement of what you can’t do, not what you can do; it is a charter of negative liberties.

EoLC Pathways typically withdraw treatments.

EoLC Pathways define artificial feeding and hydration as “treatment”.

Do you really want to be connected up to tubes...?

These issues are ‘sensitive’ ones and the groomer, also, requires appropriate grooming to advance them successfully.

Decisions about CPR are sensitive and complex and should be undertaken by experienced members of the healthcare team and documented carefully. - DNACPR Form 

Age UK volunteers are today being groomed trained to groom provide guidance to “vulnerable older people” to sign up for ACP documents.

To take a decision to sedate a person, without hydration, until he/she dies is a very dangerous policy medically, ethically and legally. No doctor's judgement is infallible when it comes to predicting how close a patient is to death. To say that it is a matter of days, and to treat by this method, is to make the prediction self-fulfilling. I know of a patient who died after at least seven days of sedation without hydration - how much longer would he have survived with hydration? Diagnostic errors can also occur. A reversible psychosis or confusional state can be mistaken for terminal delirium, aspiration pneumonia for tracheal obstruction, obstruction due to faecal impaction for something more sinister, and so on. The only way to ensure that life will not be shortened is to maintain hydration during sedation in all cases where inability to eat and drink is a direct consequence of sedation, unless the relatives request no further intervention, or the patient has made his/her wishes known to this effect. If naturally or artificially administered hydration and nutrition is withheld, the responsible medical staff must face the fact that prolonged sedation without hydration or nutrition will end in death, whatever the underlying pathology. Even a fit Bedu tribesman riding in the desert in cool weather, can only survive for seven days without food or water.

The judgement regarding hydration and nutrition in the Bland case was clearly swayed by the patient's irreversible brain damage, although the law as to killing is unaffected by the victim's mental state. It would be extremely dangerous to extrapolate the legal decision made in this case to other clinical situations. The legality or otherwise of withholding hydration and nutrition from the dying has not been tested in the courts in the United Kingdom. 

Despite the differences in mental state, pathology and life expectation between a terminally ill sedated patient and one with a persistent vegetative state, the key issues are similar. Are you, by withholding fluid and nourishment, withholding the means of sustaining life? In short are you killing the patient? The answer I fear in some cases could be YES. In some terminally ill patients, especially those who are rendered unable to swallow by heavy sedation, failure to hydrate and nourish artificially could be judged an unlawful omission. The question of intent is important and the principle of double effect, and other medico-legal issues are relevant. However, doctors who deliberately speed death could face the prospect of life imprisonment. Clearly the legality of prolonged sedation without hydration is highly debatable yet this treatment is regarded as ethical and compassionate by senior and respected specialists in palliative medicine. If a dying patient is treated in this way there may be reasonable grounds for doubt as to whether the patient died of the treatment or the disease. It is our duty and our privilege as doctors to sustain life, not to shorten it. Euthanasia must remain illegal, and practices that seem tantamount to euthanasia must be exposed.

The consensus in the hospice movement seems to be that rehydration and intravenous fluids are inappropriate in terminal care. Dehydration is even considered to be beneficial in patients with incontinence! This is a weak argument to justify withholding intravenous fluids. Therapeutic anuria may be the ultimate cure for incontinence but the side-effect is death. Those who have coped with incontinence without a catheter in the past can be nursed without a catheter to the end, if that is their wish. Rehydration should not influence this aspect of care. Hospice staff also argue that a drip makes it more difficult to turn a dying patient in bed, yet they are happy to give analgesics by subcutaneous infusion when necessary, and occasionally use a drip in patients with hypercalcaemia. To those of us who use drips frequently on acute medical, surgical and geriatric wards, these arguments do not carry much weight. Setting up a drip or a subcutaneous infusion is a simple and straightforward procedure that rarely causes the patient discomfort or distress. Many dehydrated patients look and feel a lot better when they are rehydrated. If the staff in hospices used drips more, they would not have to find so many reasons for avoiding them.

If hydration and nutrition are withheld, the attendant staff must be sensitive to the effect this may have on the family and friends. Some say that a patient should be comatose, so as not to experience thirst, before it is morally acceptable to withhold or withdraw intravenous fluids. It is widely assumed that a terminally ill patient is not troubled by hunger or thirst but this is difficult to substantiate as few people return from the grave to complain. Thirst may or may not bother the patient. Concern about thirst undoubtedly bothers relatives.

 

They will long to give their loved one a drink. They may sit by the bed furtively drinking cups of tea, taking care to make no sound lest the clink of china is torture to the patient. Anyone who has starved for hours before an anaesthetic will sympathise with dying patients who seem to thirst and starve for days. Nurses are taught that moistening the patient's mouth with a damp sponge is all that is necessary to prevent thirst. Relatives may not be convinced. It may well be that sedation relieves the sensation of hunger and thirst. If there is evidence to this effect it would be helpful for the relatives of dying patients to be told about it.

It has been said that the family must request no further medical procedures before treatment can be withheld and that the previously expressed wishes of the patient or current family must predominate over those of staff. Staff who believe strongly that intravenous fluids are inappropriate should not impose their views on knowledgeable or distressed relatives who request that a dying patient be given intravenous fluids to prevent dehydration or thirst. To overrule such a request is, in my view, ethically wrong. The only proviso would be if the patient had, when compos mentis, specifically said that he/she did not want a drip under any circumstances.

No relatives should be forced to watch a loved one die while medical staff insist on withholding hydration. This has happened to my knowledge. Such an experience is deeply disturbing and could haunt a person forever. Is all this agony worth it for the sake of avoiding a drip? I think not.

As Rabbi Lionel Blue said recently of theology: 'Even more important than your views is the kindness with which you hold them, and the courtesy with which you treat those who oppose you'. The same could be said of the issues explored in this paper. People who hold strong views in this difficult and emotive area of palliative medicine should hold them kindly and with sensitivity. At the end of the day there should not be the slightest grounds for suspicion that death was due to anything but the disease. Unless this can be guaranteed, the public's faith in doctors in general, and in the hospice movement in particular, will be ill founded.

Further reading -

Liverpool Care Pathway - The Perception Of Dying And The Perception Of the Dying

Liverpool Care Pathway - When The Prescription Is EoLC