REPORT ON THE LIVERPOOL CARE PATHWAY REVIEW, Department of Health (2013).

At the end of the following Executive summary, please see links to the narratives of two bereaved daughters who describe terrible, recent experiences of the continued implementation of Liverpool Care Pathway practice, despite the Review’s recommendation for termination of the Pathway by 2014. 

See also two nurses’ experience of a lethal ‘Care’ Pathway; successful efforts made to save a patient’s life and the hostile treatment received by another nurse – critical of the Pathway’s implementation.

Executive Summary of the Review of the Liverpool Care Pathway: More Care less Pathway (2013), Chaired by Rabbi Julia Neuberger.  

“Developed from a model of care successfully used in hospices, the Liverpool Care Pathway for the Dying Patient (LCP) is a generic approach to care for the dying, intended to ensure that uniformly good care is given to everyone thought to be dying within hours or within two or three days, whether they are in hospitals, nursing homes, or in their own homes. Because of substantial criticism of the LCP in the media and elsewhere, Norman Lamb MP, Minister of State for Care Support, asked Baroness Julia Neuberger to chair a panel to review of the use and experience of the LCP in England, to be kept independent of Government and the NHS.

The Review considered evidence from many quarters: written submissions from members of the public and health professionals with experience of the LCP, as well as professional bodies and other organisations; a review of academic literature; a review of relevant hospital complaints; and surveys of health professionals. The panel also met members of the public at four sessions, to hear directly from them their experiences of the LCP.

TERMINOLOGY

To understand better how criticisms of the LCP were arising, the Review panel considered the LCP within its wider context. This gave rise to some underlying problems of definition and terminology. ˜End of life can mean any period between the last year of life of a person with a chronic and progressive disease to the last hours or days of life. Unless this lack of clarity is addressed, there is the very real risk that a person deemed to be at the end of their life may be placed onto the LCP too early. The term pathway is clearly being misunderstood, being used to describe a very broad range of initiatives to provide care in the dying phase. It seems as though some doctors and nurses using the LCP are treating it as a set of instructions and prescriptions, which is not at all its aim. Furthermore, to the lay person, a pathway suggests a road leading somewhere.

Some relatives and carers have reached the conclusion that the pathway represents a decision on the part of clinicians, in effect, to kill their dying patients, when that is clearly not the case. The term Liverpool Care Pathway is extremely unhelpful and should be abandoned. Within the field of end of life care, the term pathway should also be avoided, the simple term end of life care plan being the suggested alternative.

A rapid evidence review of integrated care pathways for end of life showed there are specific gaps in evidence on the LCP, not least that independent, prospective testing of the LCP has not yet been carried out after nearly 10 years of its dissemination. Fully independent assessments of end of life care in England are required, focusing on the outcomes and experience of care, as reported by patients, their relatives and carers, as well as the quality of dying. Further research into the biology and experience of dying is needed.

LCP DOCUMENTATION

The LCP document is designed to replace the contemporaneous medical records written by the clinical staff. But because it exists as a separate record on top of the continuation notes, it seems it is easy for staff (not least those who had had little or no training) to believe that both the LCP document and the continuation notes had to be completed, when they had not. The Review panel heard many reports of the form having been filled in wrongly, for example including observations that the relatives or carers believed had not been made. There may have been reasonable explanations for this, but it provided resonances with the Mid Staffordshire Public Inquirys findings, and the Review panel recommends that the professional regulators must take stern action with individual doctors and nurses where there is evidence of the deliberate falsification of any document or clinical record, in order to deflect future criticism of a failure of care.

DIAGNOSING DYING

There are no precise ways of telling accurately when a patient is in the last days of life, and the LCP document acknowledges this. Given the difficulty of diagnosing when a patient is actually going to die, placing patients on the LCP can lead to considerable distress in relatives or carers when the patient does not die with hours or days, or recovers. Doctors and nurses must communicate with patients and relatives far more honestly about these clinical uncertainties. More use of prognostic tools and education and training in them is needed. More research is needed into improving the accuracy of these tools, where possible and where it is not, clear guidance and training is needed for doctors and MDTs on understanding and explaining the uncertain timings within the dying process.

Approaches like the LCP have made a valuable contribution to improve the timeliness and quality of clinical decisions in the care of dying patients, and plenty of evidence received by the Review shows that, when the LCP is used properly, patients die a peaceful and dignified death. But implementation of the LCP is sometimes associated with poor care. Although this report highlights significant difficulties with practice in care for the dying among some clinicians, those reading the conclusions of this Review should not respond, for fear of censure, by defaulting back to treating dying patients as though they are always curable.

DECISION MAKING

The Review panel heard many instances of both good and bad decision-making. Repeatedly, they heard stories of relatives or carers visiting a patient, only to discover that without any forewarning there had been a dramatic change in treatment. There now appeared to be no clinical care or palliative care, and the patient was unnecessarily or excessively sedated. Every patient diagnosed as dying should have a clearly identified senior responsible clinician accountable for their care during any out of hours period. Unless it is unavoidable, urgent, and is clearly in the patient’s best interests, the decision to withdraw or not to start a life-prolonging treatment should be taken in the cool light of day by the senior responsible clinician in consultation with the healthcare team. The practice of making such decisions in the middle of the night, at weekends or on Bank Holidays, by staff that do not have the requisite training and competence, should cease forthwith.

CONSENT

One of the central issues causing difficulty in the use of the LCP seems to be misunderstanding and uncertainty over whether deciding to implement the LCP is a treatment decision, requiring the patient’s consent or requiring the decision to be taken in the patient’s best interests if they lack capacity. In some cases, relatives and carers incorrectly consider they are entitled to decide whatever treatment their relatives receive, and in others clinicians fail to seek consent from a patient or consult the relatives and carers in a “best interests” assessment when treatment is being changed. The LCP is not a single, simple medical procedure, and so there is no legal requirement for consent to be sought before it is used. Some aspects of the LCP do not concern treatment, but others, such as medication changes, do. Patients, relatives and carers are always entitled to explanations of how decisions have been made and a chance to understand them, but all too often they have not been afforded that opportunity. The LCP documentation is deficient in making distinct and clear where the need for consent and explanation exist.

INVOLVEMENT IN THE CARE PLAN

Contrary to the intentions of the LCP documentation, submissions to this review indicated that a significant number of relatives and carers do not feel that they were involved in discussions about the care plan, or even offered the chance to be involved. Some relatives and carers were handed a leaflet without any explanation. Others were not told that their loved one was dying, which clearly contributed to their distress. It appears that a conversation with relatives or carers to explain the diagnosis, prognosis and uncertainties clearly had simply not taken place. The GMC’S guidance is clearly not always being followed in the care of the dying, and so the Royal Colleges need to review the effectiveness of training in shared decision-making that they provide to ensure competence is maintained across the education and training spectrum.

HYDRATION AND NUTRITION

Most of the submissions to the Review from relatives and carers that were critical of the LCP made reference to hydration and nutrition. Judging from these accounts, far too often the LCP advice on these is not being followed. The current version of the LCP does not go far enough to adjust the language of previous versions to advise that the default course of action should be that patients be supported with hydration and nutrition unless there is a strong reason not to do so. At the end of life, a person may become over-hydrated, and there is no moral or legal obligation to continue to administer and clinically assisted hydration or nutrition if they are having no beneficial effect. But there can be no clinical justification for denying a drink to a dying patient who wants one, unless doing so would cause them distress. In hospitals in particular, there appear to have been many instances demonstrating an inadequate understanding of the LCP’s direction on oral hydration. Refusing food and drink is a decision for the patient, not clinical staff, to make. The Review heard reports of patients being given drugs by a syringe driver so quickly that they rapidly became drowsy, and so unable to ask for something to drink. The offer of a drink was not discussed. The GMC has issued clear guidance on supporting artificial nutrition and hydration, but more is needed on supporting oral nutrition and hydration. The NMC, from which no equivalent guidance currently exists, needs to produce it for nurses as a matter of urgency.

SEDATION AND PAIN MANAGEMENT

The Review heard that, if a patient became more agitated or in greater pain as they died, they often became peaceful because the right drugs were given to them at the right time and in the right dose. But there were complaints that opiate pain killers and tranquillisers were being used inappropriately as soon as the LCP was initiated. Many hospital patients appear to be put on a syringe driver with morphine as the next step on the LCP, even if morphine is not the right drug, or pain relief is not is needed. Some relatives and carers were unsure whether this meant that the death had occurred naturally or if it was directly attributable to the drugs administered. It seems that at least some of the distress experienced could have been mitigated by better communication. Before a syringe driver is commenced, this must be discussed as far as possible with the patientâs relatives or carer, with the reasoning documented.

ATTEMPTS AT CARDIOPULMONARY RESUSCITATION

The Review received evidence of conversations about attempts that were held sensitively, patients and their families and carers having felt both consulted and involved in the decision making. However, it also heard of very vague, snatched conversations, in which relatives and carers felt pressurised to give an opinion, the implications which were not made clear to them. Many people recounted that agreement not to attempt cardiopulmonary resuscitation had been taken by the clinical staff as a proxy for agreement to start the LCP, which is clearly unacceptable.

ETHICAL ISSUES

Some people believe that to implement the LCP is a way of deliberately hastening someone’s death, and this is understandable, given what the Review heard about poor communication between clinicians and patients, their relatives and carers about what was happening during the dying process. The Review panel is content, however, that the LCP entirely reflects the ethical principles that should provide the basis of good quality care in the last days and hours of a person’s life. Any attempt deliberately to shorten a person’s life is illegal, but there is no obligation, moral or legal, to preserve life at all costs.

The Review considered the issue of local financial incentives being applied per patient on the LCP, and concluded that this sort of incentive must cease in relation to any approach to care of the dying. Not only has it given rise to fears about hastening death for financial gain, but there is a very real risk that providing a payment for each patient implemented on the LCP, or equivalent approach, looks like an incentive to do so, rather than a means of providing sufficient resources for good quality and compassionate care to be provided.

WIDER ISSUES

In reviewing use and experience of the LCP, the Review identified a number of important issues that impact on the ability of the LCP and similar approaches to support high quality care of the dying. If these wider issues are not addressed, no amount of changes to particular approaches to care of the dying will help.

ENVIRONMENT AND EQUIPMENT

The review received little evidence on the facilities and environments provided for patients that were dying, and their relatives and carers. When it was mentioned by respondents, however, it was often the case that rooms were not available where patients and families could talk privately or to meet and confer with staff. Similarly, facilities and support for those bereaved were not always available.

ACCOUNTABILITY

Patients, their relatives and carers need to know who the senior responsible doctor in their care is. Dying patients must have a named consultant or GP taking overall responsibility for their care. If a medical practitioner is available, the responsible clinician role in the community could be held by a nurse, as long as he or she has the right competencies. The responsible clinician is not only responsible for the care of the patient, but bears some responsibility for their relatives and carers too. The name of a registered nurse responsible for leading the nursing care of the dying patient in a hospital should be allocated at the beginning of each shift, and this nurse should also be responsible for communicating effectively with relatives and carers.

Organisations providing care for the dying, in particular acute hospitals, must ensure that the right systems are in place to ensure they deliver consistently good care, and so, as a matter of urgency, the boards of these providers should give responsibility to one of its members for leading on the interests of the dying patient, their relatives and carers.

CARE WITH COMPASSION

During this Review, the panel heard of far too many instances where the commencement of the LCP has led to a withdrawal of care, in some cases with relatives and carers left to do the caring themselves as much as they could. Caring with compassion for people at the end of their lives should be the aim of all doctors, nurses and healthcare staff. Good care for the dying is as important as good care at any other time of life.

DOCUMENTATION

Many patients and their families felt as though they have lost control over what was happening to them. Involving patients, their relatives or carers in discussions about the care plan is an important way of restoring a sense of control. And good practice in documenting discussions and decisions is vital. Where a patient has no relatives or carers and so is unrepresented, the discussion about the care plan needs instead to involve a GP from their registered practice or their senior responsible community clinician, who may be a nurse. The panel recommends a system of shared care folders in hospitals, to which relatives and carers can contribute, as well as better integration of documentation in the community.

CARE OF THE ELDERLY

Evidence from relatives and carers strongly suggested that care of the dying elderly is of the greatest concern: the Review panel suspects that age discrimination is occurring, which is unlawful. Nor should old age be taken as a proxy for lack of mental capacity. Each patient lacking capacity, of whatever age, on the LCP or a similar approach, should be represented by an independent advocate.

AVAILABILITY OF STAFF AND EQUIPMENT

The availability of staff to care for the dying, both in terms of the number of staff and the level of competence, is of serious concern. The Review panel repeatedly heard stories of poor standards of basic care and a lack of staff and equipment over weekends and out of hours; this also prevented some people from being able to come home to die, as they wished. There were numerous reports of no access to the palliative care teams outside office hours and at weekends, both in acute hospitals and in the community. In some places there were separate teams for the community, the hospital and in hospices. Such fragmentation must not continue and, wherever possible, palliative care teams should combine to form integrated palliative care services.

About half of all deaths currently take place in hospital, making care of the dying a core duty of hospital trusts. Many of their patients would benefit from the skill and expertise offered by the palliative care team. Lack of funding may be the reason that patients report a lack of access to the hospital palliative care team in the weekends and evenings. Funding must be made available to make palliative care teams accessible at any time of the day or night, seven days a week, both in hospitals and in community settings.

COMMUNICATIONS

No matter how much effort is put into training clinicians in good communication skills, unless everyone in society – members of the public, the press, clinicians, public figures – is prepared to talk openly and honestly about dying, death and bereavement, accepting these as a normal part of life, the quality of care and the range of services for the dying, their relatives and carers will remain inconsistent. The Review panel strongly supports the work of organisations that promote public awareness of dying, death and bereavement. Unless there has been good communication between staff and relatives or carers, unnecessary misunderstandings and distress can arise. Care of the dying requires not only substantial technical knowledge and clinical skill, but above all it needs excellent communication skills. Adequate training and continued support is the key to getting this aspect of care right.

TRAINING

Health Education England, the GMC, the NMC, the Royal Colleges and provider organisations should all play a part in improving the training and continuous professional development of clinicians involved in caring for dying patients. Clinicians should be required to demonstrate proficiency in caring for the dying, doctors as part of each five-year cycle of revalidation; the principle of setting requirements to demonstrate proficiency in caring for the dying should also apply to nurses. There is no specific NMC guidance for nurses caring for patients at end of life or who are dying, although such guidance from the GMC exists for doctors. This may explain, at least in part, why the Review panel heard so many examples of poor quality nursing of the dying. The NMC must provide such guidance as a matter of urgency.

AN END OF LIFE CARE PLAN FOR EVERY PATIENT

The LCP is not being applied properly in many cases. Generic protocols, as the LCP has come to be seen, are the wrong approach. The Review panel strongly recommends the development of a series of guides and alerts reflecting the common principles of good palliative care, supplemented by technical guidance specific to certain disease groups.

These guidelines must be so designed that they are readily adapted for local use to meet the needs of individuals, in a similar way that examples already exist for the LCP. Use of the Liverpool Care Pathway should be replaced over the next six to 12 months by an end of life care plan for each patient, backed up by condition-specific good practice guidance.

A SYSTEM WIDE APPROACH TO IMPROVING END OF LIFE CARE

But adherence to guidelines cannot be enough: a system-wide approach to professional practice and institution provision, measurable and monitored, is required to bring about improvements in care for the dying. A strategic approach needs to be taken to the problem – a coalition of regulatory and professional bodies, NHS England and patient groups together setting clear expectations for a high standard of care for dying patients, as well as their relatives and carers.

Such a coalition could lead the way in creating and delivering the knowledge base, the education training and skills and the long term commitment needed to make high quality care for dying patients a reality. Under this approach, the CQC would collaborate with the professional bodies and patient groups in defining what good quality end of life care services should look like and then inspect against those standards. End of life care should be incorporated urgently into the new hospital inspection programme that the Chief Inspector of Hospitals will run. The CQC should carry out a thematic review of how dying patients are treated in all settings within the next year.

NHS England must use its full powers to work with clinical commissioning groups to address what are considerable inconsistencies in the quality of care for the dying, to drive up quality by means of considerably better commissioning practices than persist at present. Hospital provision in particular must from now on be commissioned and prioritised according to local need, to ensure that properly constituted multidisciplinary specialist services are available for support around the clock as a hub of expertise, support and training.

Unsurprisingly, this Review has uncovered issues strongly echoing those raised in the Mid Staffordshire Public Inquiry: notable among the many similar themes arising were a lack of openness and candour among clinical staff; a lack of compassion; a need for improved skills and competencies in caring for the dying; and a need to put the patient, their relatives and carers first, treating them with dignity and respect. In view of the Review panel’s serious concerns about the current state of care for the dying, it strongly recommends that the Government set improved quality of care for the dying as a priority for NHS England in the next Mandate. Given the very strong links between the vulnerability of older people and the quality of care for the dying, the forthcoming Vulnerable Older People’s Plan should include a strand on care for the dying, and NHS England’s contribution to it should also be specified as a priority in the NHS Mandate.

Many of the problems in the care of the dying highlighted in this report are due to poor understanding among clinicians of existing guidance in care for the dying, and an unwillingness to discuss with patients, their relatives and carers the prospect of death and the clinical uncertainties that accompany it. The Government must therefore ensure that its arms-length bodies collaborate with the clinical professional bodies and other key players in the system, and inject considerable funding into the system, to ensure that guidance on care for the dying is properly understood and acted upon, and tick-box exercises are confined to the waste paper basket for ever. The Review panel feels so strongly about this that it is going to continue to meet at its own expense and volition, to monitor closely what happens next in response to its recommendations”.

Crown copyright 2013 2901073 July 2013 Produced by Williams Lea

For the full report, please see the following link:

https://www.gov.uk/government/uploads/system/uploads/

attachment_data/file/212450/Liverpool_Care_Pathway.pdf

‘Post’ the LCP – there are still experiences of its ongoing use:

• One daughter whose mother, Hazel, was placed and died on the LCP process, unbeknown to the family, recounts her story here:

  https://www.thegracecharityforme.org/hazel-and-the-lcp

• Another daughter’s story about her father, Josef, placed on the LCP process, is reported here:

  Veteran condemned to die by the NHS: Doctors at leading hospital put great-grandfather with a chest infection on notorious ‘death pathway’ after wrongly deciding he could not be saved

• Hospital said: The WW2 veteran was dying, so he went on ‘death pathway’ 
• Watchdog said: No he wasn’t, and it was your lack of that care killed himÂ
• Josef Boberek was admitted to Hammersmith Hospital in West London
• He died days later after doctors withdrew his fluids and normal medication

By Jonathan Petre for The Mail on Sunday

PUBLISHED: 22:05, 23 July 2016 UPDATED: 03:57, 24 July 2016

‘Death Pathway’: Veteran Josef Boberek died days after being admitted to hospital with a chest infection

Doctors at one of the country’s leading hospitals condemned a veteran to die on a notorious ‘death pathway’ after they wrongly decided he could not be saved.

Great-grandfather Josef Boberek was admitted to Hammersmith Hospital in West London with a chest infection, but died days later after doctors incorrectly told his family that he was at death’s door and deliberately withdrew his fluids and normal medication.

Now an official health watchdog report seen by The Mail on Sunday has revealed that the pensioner would have lived and returned to his normal life had he received proper treatment and not been placed on the discredited Liverpool Care Pathway (LCP).

Mr Boberek’s daughter Jayne, who fought a three-year battle to uncover the truth, said last night: ‘My father was condemned to an unnecessary early death by the doctors. They had no right to take his life, and him away from me.’

The damning report by the Health Service Ombudsman found a litany of failings at the hospital, including:

• Doctors claimed Mr Boberek was suffering from terminal heart and kidney failure when he was not;

• Although he was frail, he would almost certainly have lived if he had been properly treated;

• He was not suffering from dementia, as stated in his medical notes.

In what is believed to be the first time hospital chiefs have publicly accepted that the LCP had ‘killed’ a patient, the Imperial College Healthcare Trust told Miss Boberek that ‘if the failings had not happened, on the balance of probabilities your father would have survived and returned to his nursing home’.

Mr Boberek died in June 2013, months before the LCP  in which dying patients are sedated while treatment is withdrawn  was banned by the Government following claims it was being abused, although critics say it persists under other names.

Miss Boberek did not commit her father to the Liverpool Care Pathway. Nevertheless, she found that registrar Dr Rather had authorised the protocol, and he told her it was the ‘best thing’ for him

A passage from the Health Service Ombudsman’s report on the case

The 92-year-old, who fled the Nazi invasion of his native Poland and fought with the British Army during the Second World War, was admitted to hospital from his Ealing nursing home on May 29, 2013, suffering from a chest infection.

The father of two, a former engineer, had made several similar visits and his daughter had no reason to believe this one was anything but routine.

A LICENCE TO KILL?

• The Liverpool Care Pathway was drawn up by doctors in the 1990s to ease the final hours of the terminally ill.

• It involved patients being sedated and deprived of food, fluids and life-prolonging medicine, frequently leading to death within 33 hours.

• It was abolished by the Government in 2014, amid evidence of ‘shocking’ abuses, though critics say similar techniques are still being used by doctors.

Mr Boberek was prescribed antibiotics for the infection and three litres of fluid from an intravenous drip because he was dehydrated, a common condition. His daughter said that, within a few days, the doctors considered him almost well enough to go home, but she had become concerned because he was not eating or drinking properly.

What she did not know until she examined his medical notes months later was that, for an unknown reason, her father had received only one of the three prescribed litres of fluids.

After five days in hospital, Mr Boberek was becoming drowsy and confused, but his daughter was reassured by doctors who said they would give him a further two litres of fluid – though she later found he had been given less than a quarter of that.

A week after his admission he was vomiting and, the following day,  June 6, Miss Boberek told the specialist registrar, Dr Arshad Rather, who was the most senior day-to-day doctor on the ward, of her concerns.

Later that evening a junior doctor told her that her father had developed a further infection and that his organs were failing, and gave her the strong impression that even if he recovered from the infection with another dose of antibiotics, his heart and kidneys were giving out. Doctors at Hammersmith Hospital in West London, incorrectly told Mr Boberek’s family that he was at death’s door and deliberately withdrew his fluids and normal medication

COMMENT: OLD SHOULD NEVER BE DENIED TREATMENT 

Comment by Professor Patrick Pullicino – Consultant Neurologist

Placing sick elderly patients who are diagnosed as ‘dying’ on end-of-life regimes where they are deprived of fluids is an ongoing scandal in the NHS and must not be allowed to continue.

The Ombudsman has just produced a report damning the failings of care in the case of Josef Boberek, who they admit would probably have survived but for the doctors’ erroneous interventions.

The importance of Mr Boberek’s case is that it is the first time an NHS trust has publicly acknowledged that they erred in making a diagnosis that a patient was ‘dying’. They also admitted they gave the patient inadequate fluids and that if they hadn’t made these errors, he would probably have been discharged alive. The failings in this case were the two main concerns of the 2013 Neuberger Report, which recommended the phasing out of the LCP: that there is no precise way of diagnosing if someone is dying and that patients should be supported with hydration and nutrition unless there is a strong reason not to.

These two lessons have not, however, been learned, since recent NICE guidelines continue to insist on diagnosing who is dying without providing any objective ways to do this. They also state that withdrawing fluids does not hasten death. Now that one of the top NHS trusts has admitted it was wrong to diagnose dying in Mr Boberek’s case and to withhold fluids, it is important that the findings are the impetus for ending the intentional dehydration of sick elderly patients in the NHS.

Elderly patients must not be intentionally dehydrated for any reason. A way to stop this is for NHS trusts to be required by the Care Quality Commission to report any instance of a patient not having fluids for more than 24 hours and to institute significant penalties. In addition, a diagnosis of ‘dying’ must never be allowed to be the basis for limiting care.

Otherwise, it is too easy to make a self-fulfilling prophecy in a patient who, like Mr Boberek, could be saved with more hydration and more care.

She was later told by the Ombudsman there was no evidence that her father had a new infection, let alone any serious decline in his heart or kidney functions.

She said: ‘It was presented to me as a dire situation, very bleak.

‘I later found out that by the time I was told this he had been 29 hours without oral fluids and three days without his prescribed IV fluids, and his usual medication for various conditions had been stopped.’

Miss Boberek reluctantly agreed to delay the antibiotics, which she was told could do more harm than good, but did not commit her father to the LCP. Nevertheless she found out the next day that registrar Dr Rather had authorised the protocol, and he told her it was the ‘best thing’ for him.

Mr Boberek, whom she described as looking exhausted, soon became unconscious and he died the following day.

Miss Boberek remained suspicious, however, about the claims that her father’s heart and kidneys had been in their worst-ever condition. She requested his medical notes and when they arrived after 60 days, parts were missing, obscured or inaccurate, such as a statement that he was suffering from dementia – but they did show his heart and kidneys had been worse eight months earlier.

In response to her questions, the trust said her father’s consultant Dr Edward Dickinson, now retired, had concluded that the treatment was ‘in line with the best principles of palliative care’.

She complained again, and in a second letter in January 2014 she was told by the trust the case had been reviewed by Dr Catherine Urch, the NHS London co-clinical director of end of life care.

The trust said: ‘Although the dying phase is not always clear, Dr Urch has specified that in your father’s case, sadly, it was clear.’

The report by the Ombudsman on June 29 this year told a very different story, concluding ‘there is no evidence to support the trust’s explanation that Mr Boberek was immediately dying on June 6’.

It added: ‘His hydration had been inadequate and there is no evidence he was encouraged to drink fluids… There is no evidence that his [heart and liver] had deteriorated to terminal levels… There is no evidence he needed any more antibiotics or that the clinical situation had changed on June 6.’

It added: ‘We cannot say how much longer Mr Boberek would have lived. However, in our view, if the failings had not happened, he would not have died at this time.’

In a letter to Miss Boberek earlier this month, trust chief executive Dr Tracey Batten admitted the trust should have provided more hydration and oral fluids. She said the trust was sorry it had made ‘a number of incorrect diagnoses’ and ‘incorrectly told you that your father was dying and placed him on the Liverpool Care Pathway’. She added ‘Please accept my unreserved apology that this happened and for the emotional impact that this has caused you.

‘Our complaint responses were not supported by evidence and, if the failings had not happened, on the balance of probabilities your father would have survived and returned to his nursing home.’

Miss Boberek, who has refused an offer of compensation, said: ‘Until recently I had a lot of rage in me, constant rage. I feel that has gone now that I have got some of the answers. But I do feel anger. I feel most of all I don’t want this to happen to others.’

Calling for all the doctors involved to be held to account, she added: ‘I don’t think it is relevant whether they did it on purpose or by accident or through incompetence or they just couldn’t care less. That doesn’t matter.’

A number of families at hospitals across the country have complained to the police that their loved ones were unnecessarily put on end-of-life regimes, though none of those cases has been resolved.

NURSING EXPERIENCE OF THE LCP:

‘Care’ of the Elderly:  A Nurse’s experience of a Care Pathway. (Sally Carson, RGN, SCM)

On a return to practice course at Bangor University, I had a placement on a busy acute elderly care ward. The nursing staff with their dedicated carers were very hard pressed work wise.  The target for discharge was thirteen days. Consequently, on admission, discharge was discussed.

On one shift, I was instructed to monitor side-ward patients, one of whom had a Nil by Mouth sign above her bed. I overheard the Consultant instructing the House Doctor to inform the relatives that this lady was not responding to treatment, had developed pneumonia and so treatment was being withdrawn. The relatives and the patient were NOT consulted nor were they told that ‘treatment’ included food and drink.

The dear old lady was rational and able to talk. As she had a naso-gastric tube, I gave fluids via this route and noticed an improvement in her vital signs. On confessing to the senior staff nurse, of my disregard for the instruction not to give fluids, she admitted that she had also done the same. I fed the patient some ice cream and jelly, which she devoured eagerly.

The House Doctor appeared with the mediation chart and told me he was writing her up for diamorphine. I asked why, because she was in no pain and I informed him that her condition was improving (no doubt the fluids had relieved her symptoms somewhat and reduced her temperature, but did not mention the fluids nor the food. He walked away without writing the prescription. Next day the lady was returned to the main ward and two days later was discharged to a Nursing Home.

If the fluids had not been given and the Diamorphine HAD been given, she would have died within the time of her supposed discharge date.

Another lady who was side-warded at the same time, but not in my care, died on the day the other patient mentioned went to the Nursing Home, both just inside the thirteen-day deadline.

I concluded that the only reason why she and others like her, were side-warded was because they could not be discharged quickly enough, so they were being exterminated.

Paediatric Care: A Nurse’s  experience of a Care Pathway.

A Paediatric nurse has summarised her experience of trying to reconcile the LCP with ethical nursing practice and the concept of doing no harm:

“I think this is best summed up as a feeling of complete ‘moral distress’, due to not being able to give children fluids and watching children suffer effects of dehydration and potentially dying from dehydration before the natural disease process, feeling powerless to help with this, despite raising concerns. Overwhelming concern that your patient is being over sedated and dying too soon as a result and with no way back for patients should things turn around, (as can sometimes happen). Alongside over-sedation, further distress results for nurses with a system where there are no upper limits on morphine doses. The nurse suffers the effect of giving extremely high doses of morphine/sedatives not knowing whether the dose they give will potentially end the life of the patient. As a nurse I wanted to care for the dying child, giving them a drink when they needed it, relieving their suffering with pain relief without the terrible burden of whether we are crossing the fine line between where palliative care end and euthanasia begins. I also had to endure being treated very badly for raising concerns about the LCP in the workplace”.