Dying the Liverpool Way
End of Life Care?... or Ending-Life Care?
DR GILLIAN CRAIG
I speak as a retired Consultant Geriatrician with a special interest in hydration at the end of life. I am not a palliative care specialist, but I have spent many years trying to persuade my colleagues in the hospice movement that hydration matters. Failure to maintain hydration results in death from dehydration within about a week. Water is a basic human need.
Some years ago I came upon the practice of sedation without hydration in the dying and was shocked. I resolved to do what I could to end the practice, and at the suggestion of the Editor wrote an article for the Journal of Medical Ethics to start a public debate. The story of that debate can be found in my book, No Water-No life: Hydration in the Dying.(1)
The initial response of palliative carers was helpful. Committees were convened behind the scenes and in 1997 the National Council for Palliative Care (NCPC) published some guidelines on “The ethical use of artificial hydration in terminally ill people.” These were published in the European Journal of Palliative Care - a journal that is rarely to be found in any postgraduate library in the UK.(2) I obtained a copy by writing to the publishers and discovered that the guidelines had been produced in response to my criticism. The guidelines stated categorically that:
• A blanket policy of hydration or no artificial hydration is ethically indefensible...”, and
Unfortunately, these broadly helpful guidelines were rapidly followed by another publication called Changing Gear - Managing the Last Days of Life in Adults.(3) This dismissed the topic of hydration in 6 lines, and took an entirely negative approach to artificial hydration, quoting in support of this view a paper by Ellershaw, Sutcliffe and Saunders, which in my view does not stand up to scrutiny.(4) However, Dr Ellershaw of Liverpool is now a professor of palliative care, with a key role in the NHS End of Life Care Programme. This programme was established in 2004 and involves health and social care organisations, primary care trusts, strategic health authorities and the Department of Health. Residential care homes for the elderly and nursing homes are being targeted, the aim being to improve the care of the dying, reduce emergency admissions and reduce transfers of patients from care homes to hospital at the end of life.
Three so-called “tools” are being promoted to achieve this end. They are called:
1. The Preferred Place of Care Document
The first of these records where the patient would like to die. It is a form of advance care planning that could have implications under the Mental Health Act if the patient loses capacity. The Gold Standards Framework is intended to promote collaborative working between GPs and specialist teams. The Liverpool Care plan will bring hospice-style care to dying patients in hospitals and in the community.
A revised version of Changing Gear published in November 2006 promotes the Liverpool Care Pathway. It was produced last year by a working group of eight people - mostly Liverpudlians, chaired by Professor Ellershaw. It seems to have been produced without wide consultation. The guidance highlights some principles for the care of people dying of malignant disease and non-alignment disease in hospitals, care homes, private residences and hospices, restates traditional palliative care dogma, advocates the use of powerful medication and syringe drivers according to hospice practice, and ignores the hydration debate.
Since it is notoriously difficult to predict how long a patient has to live, doctors should err on the side of life. A person who is sedated and subjected to the Liverpool regime is likely to die of dehydration within 6 or 7 days.
Comments and points of concern
1. Residents in the average residential home and nursing home differ in many ways from those in a hospice, so palliative carers should draw on the knowledge and skills of geriatricians, renal physicians and cardiologists, to achieve the best possible standard of care. Geriatricians should also take their community responsibilities more seriously.
2. Although many people want to die at home, the majority do not achieve this, because the patient needs in-patient specialist care. There must be flexibility for a change of plan if the clinical situation changes or relatives and carers cannot cope.
3. A White Paper “Our Health, Our Care, Our Say: A New Direction in Community Services” (2006) is said to stress that “training in palliative care which is recognised and accepted as an integral part of all good clinical practice, should be included in all health and social care professionals basic training, as all professionals across all settings will care for dying people at some point.” Such training is all very well if the palliative care principles take into account different schools of thought on issues as crucial as dehydration, but training that perpetuates long-held dogma is to be deplored.
4. Changing Gear has remarkably little to say about the value of hydration at the end of life. The guidelines fail to mention the work of Dr Robin Fainsinger and Professor Eduardo Bruera who pioneered the use of subcutaneous hydration in palliative care.(5) They offer subcutaneous hydration to all dying cancer patients who are dehydrated or at risk of becoming so, and by so doing reduce the incidence of distressing terminal delirium by 66%. That fact alone should be sufficient to persuade people that hydration matters.
5. Changing Gear fails to mention that subcutaneous hydration can be given in the patient’s home to prevent dehydration, fails to list thirst as a commonly reported symptom and considers it “best practice” to discontinue intravenous infusions in the last hours or days of life. This advice is dangerous, for it can be difficult to predict how long a patient has to live.
6. The National Council note that sudden deterioration over days should prompt a search for correctable causes... but fail to mention reversible factors such as dehydration, heart attacks, pulmonary embolli, severe constipation etc.
8. The National Council recognise that a patient’s condition can change very quickly and that regular and frequent assessment is needed... but they consider examination to be “rarely appropriate” in the last stages. However all doctors will know of patients who appeared to be at death’s door, who were found to have some eminently treatable condition when carefully examined by a skilled doctor. I have given some examples in my book... Careful clinical examination is a vital part of good medical care. Patients should not be deprived of such care. It is a little late to phone for the general practitioner after the patient has died!
9. We are told that Macmillan Cancer Support have developed a training programme entitled Foundations in Palliative Care intended specifically for care home staff. I have not seen this publication so can only hope that care staff will be trained and willing to recognise dehydration.
10. GPs and nurses in the community must be trained and willing to set up subcutaneous infusions, otherwise many old people will die prematurely of dehydration. The technique is not difficult. Baroness Ilora Finlay, a highly respected Professor of Palliative Care in Cardiff told members of the House of Lords that subcutaneous fluids are “remarkably safe.” You can give them in a patient’s home and hang the fluid bag from a picture hook. So why isn’t this done more often?
11. Palliative carers must work with colleagues in other specialties to ensure optimum care.
Hospital closures, bed-blockers and palliative care
We have a crisis in the NHS - a crisis that has been creeping up on us for 20 years. In the mid-80s long stay wards for the elderly and the elderly mentally infirm began to close and the occupants were transferred to private nursing homes in the community. Then whole hospitals closed. Now there is virtually no long stay provision in the NHS. Many private nursing homes have closed, overburdened by bureaucracy and forms. The rise in house prices made it more lucrative to sell up or move into the B&B business. When Social Service Departments were given control of the finance and assessment of patients - many people who needed nursing were placed in residential homes that were cheaper. Then many County and Borough Councils decided to close their residential homes as a cost-cutting exercise. So now the NHS cannot cope with the number of elderly people who need admission. Therefore the pundits have decided to reduce admissions through the NHS End of Life Programme.
In the old days the frail and elderly were cared for in care homes or long stay wards. The vast majority did not need the services of palliative carers, nor did they need morphine and sedatives. They needed good nursing and kind doctors who were trained in geriatric medicine.
If elderly people are to be denied access to hospitals, care in the community must be improved. Palliative carers and geriatricians must work together for the benefit of the frail elderly. The care given should be life supportive - not death orientated. Old people, like most hospice patients, want to live until they die.
The Gosport experience
Some years ago, events at Gosport Memorial Hospital in Portsmouth showed how dangerous palliative care protocols can be when applied inappropriately to people who are not dying.
Some suspicious deaths occurred on three rehabilitation wards and the police were called in. Police and expert witnesses expressed concern about inappropriate combined subcutaneous use of diamorphine, and two sedatives - midazolam and haloperidol. It turned out that these drugs were being prescribed in anticipation of need according to a palliative care protocol that was intended for use in a hospice. Anticipatory prescribing on the geriatric rehabilitation wards at Gosport was criticised by the Commission for Health Improvement. Clinical staff failed to recognise the potential adverse effects of these drugs, namely over sedation and death. There were no clear guidelines to prevent staff from assuming that the patients had been admitted for palliative care rather than rehabilitation.
If the Liverpool Care Pathway is used in care homes throughout the country, I predict that there will be many deaths due to inappropriate sedation without hydration. Sick elderly people tend to stop drinking and get dehydrated rapidly. If nothing is done they will die of dehydration in 6-7 days whether they have a terminal illness or not.
1. Terminal or palliative sedation is a danger area of medical ethics yet this dangerous practice is being promoted with Government backing, for use in hospitals, hospices, care homes, nursing homes and in private homes, if the patients are thought to be dying. Care Homes are being targeted, the aim being “to reduce emergency admissions and reduce transfers of patients from care homes to hospitals at the end of life.” (Changing Gear, Nov. 2007)
2. Palliative carers and geriatricians must work together for the benefit of patients.
3. District nurses and GPs must be trained to recognise dehydration and willing to take steps to rehydrate the patient by appropriate means.
4. Anticipatory prescribing of drugs such as diamorphine, midazolam and haloperidol should not be permitted in care homes. If and when the need for such medication arises a doctor should be called to assess the patient and prescribe as necessary.
5. Flawed guidance prepared with inadequate consultation should not be accepted as a “body of medical opinion” in medical negligence cases.
Points made during post-talk discussions:
Correct use of palliative sedation
Dr Craig said that two Americans, Lo and Rubenfeld, writing in the Journal of the American Medical Association (JAMA) in October 2005, set out some guidance on the use of “palliative sedation.” They stressed that this must be carefully distinguished from euthanasia, and if correctly used, can be justified as a last resort if certain criteria are met, namely that intolerable symptoms cannot be relieved in any other way, the patient is at the point of death, and the intention is to relieve symptoms, not shorten life. (For further information refer to the JAMA article or read page 28 of Patients in Danger: The Dark Side of Medical Ethics. (6))
Accurate diagnosis is essential
Dr Craig said that in 1981 a rigorous study of 1,000 hospital post mortems showed that the main clinical diagnosis was not confirmed, or was only a subsidiary cause of death in 39% of cases. In half of these cases a different treatment would have been given had the diagnosis been known. Diagnostic errors rose from 22% in the under 45s to 53% in the over 75s. In 1991, a Royal Colleges Working Party Report indicated that 25% of patients who were thought to have died of cancer had died of something else, such as infections or clots in the lungs.
Given diagnostic fallibility we must not be too ready to stop active treatment. To say that a person is dying and to treat them the Liverpool Way without careful clinical assessment and a sure diagnosis could shorten life significantly. Old people are entitled to receive high quality medical care in hospitals, hospices and community settings.
Food and fluids as basic care
Dr Craig mentioned that Earl Howe, speaking in the debate on the Patients Protection Bill in the House of Lords in 2003, got very close to the heart of the matter when he said that
1. whether food and water should be regarded as separate and distinct from conventional medical treatment, and
2. whether the right of every patient, however ill, to receive food and water, should be protected in law (Hansard [HL] March 12th , 2003, col 1426).
Many people believe that the answer to the first question should be a resounding YES.
Application of the Liverpool Care Pathway in care homes
Dr Craig expressed her concerns, stating:
“If you say that a patient is dying therefore you will not examine him, that is not good medicine, it really isn’t good medicine.
“If the patient is somebody you have followed personally for many weeks and know all there is to know about the diagnosis, and their deterioration is clearly inevitable, and they have reached the end of the road - that is one thing.
“But if you don’t know the patient, and the GP going into the care home doesn’t know the patient and the nurses perhaps don’t know the patient very well, and the patient is suddenly found to be very ill in the care home, you can’t just say they are dying, and we will treat them as if they are dying, because they will then inevitably die.
“It is not good medicine, and it is one of the problems that in fact we can see happening in our hospitals. People are going in, perhaps with a stroke, or perhaps with some treatable condition like a urinary infection or a chest infection, and somebody says they are dying so all treatment is stopped, and they may not be given anything to eat or drink and they just deteriorate. We know of many of these cases. There are people in this room who can give examples of such cases....”
(1) No Water-No Life: Hydration in the Dying, Editor: Craig G.M., Fairway Folio 2005, pp.195. ISBN 0 9545445 3 6. Price: £15 + £2 p&p, from: Medical Ethics Books, PO Box 341, Northampton NN3 2WZ. (Cheques or International Money Orders payable to Medical Ethics Books.)
(2) Dunphy K. and Randall F., “Ethical decision-making in palliative care”, European Journal of Palliative Care, 1997; 4 (4), pp. 126-128.
(3) National Council for Palliative Care, 1997.
(4) Ellershaw JE, Sutcliffe J, Saunders CM, “Dehydration and the dying patient”, Journal of Pain and Symptom Management, 1995; 10, pp.192-197.
(5) Bruera E., Franco JJ., Maltoni M., et.al., Journal of Pain & Symptom Management, 1995; 10, pp.287-291.
(6) Editor Craig GM, Enterprise House, 2006. ISBN 978-0-9552840-0-7. Price: £18.50 + £2 p&p, from Medical Ethics Books, PO Box 341 Northampton NN3 2WZ. (Cheques or International Money Orders payable to Medical Ethics Books.)