Catholic Medical Quarterly

The Journal of the Catholic Medical Association (UK)

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Catholic Medical Quarterly Volume 66(1) February 2016

Papers

Principles and Practice of Palliative Care:
Response of The CMA to the Draft NICE Guidelines.

Background:

NICE published draft guidelines on Palliative Care for consultation.
This is a modified and abridged version of the submission by the CMA.

The Neuberger Review:

The Neuberger Review ‘More Care, Less Pathway’ a review of the LCP (2013) recognised that “there is a notable tradition of good end of life care, as demonstrated by the hospice movement which is respected worldwide.”[1]

Nevertheless, there were a number of concerns over the Liverpool Care Pathway (LCP). The Review made a number of recommendations including the following. There should be personalised care plans with greater involvement of patients with their families and carers in decision-making and the there should be “an evidence-based and individualised care plan approach.”

Communication with patients and relatives should be improved. Senior clinicians should be responsible and accountable for individual patient care. The deliberate denial of fluids should be regarded as unacceptable and unethical. There is a need for more evidence-based care and research into the care of the dying and there should be better funding and provision for education and training in palliative care.

Recognising when a person is in the last days of life

"I think it is the worst possible management of any patient, no matter how strong, to give a concrete number of months or years. Since such information is wrong in any case, and exceptions in both directions are the rule, I see no reason why we even consider such information.”

“Our interviews have shown that all patients have kept a door open to the possibility of continued existence, and not one of them has at all times maintained that there is no wish to live at all.”

Dr Elizabeth Kubler-Ross[2].

One of our greatest worries is that the guideline still focuses upon the belief that the diagnosis of dying can be accurately and safely made. It is very clear that this is difficult especially in the case of dementia, heart failure and respiratory failure. The guideline therefore unquestioningly replicates one of the key failings of the Liverpool Care Pathway and suggests to clinicians that they can accurately and reliably make a diagnosis that someone is dying. Our view is echoed in the draft guidance which noted that “as the LCP documentation acknowledges, diagnosing imminent death is a far more imprecise science than people realise. An accurate prediction in non-cancer patients is particularly difficult. There are no precise ways of telling accurately when a patient is in the last days of life.”

Assessment of prognosis:
paucity of available and reliable data

The draft guidelines showed that there are a number of problems inherent in assessing prognosis. The most obvious is the paucity of studies. In the draft NICE consultation document 102 full text articles were assessed for eligibility but only 5 were selected for analysis. There were no GRADE scores for any of the studies. The available evidence was limited to studies in selected groups of known cancer patients admitted to palliative care units and undergoing palliative care treatment which may be expected to alter the profile of the prognostic factors under review. The pathophysiology of dying may be very different in different malignant diseases compared to non-malignant conditions. For example, respiratory parameters are more likely to be important in those with lung cancer, compared with ascites, jaundice and hyoalbuminaemia in those with gastrointestinal malignancy. None of the studies involved patients with chronic non­malignant conditions such as motor neurone disease, heart failure or dementia.

There are now over thirty prognostic scales or screening tools for predicting the risk of death in a variety of settings which depend on laboratory parameters, clinical observations and judgement to varying extents.

Inherent difficulties in the use of prognostic indicators

There are a number of inherent difficulties with the use of prognostic indicators. Prognostic tools apply to group statistics and do not take into account inter-individual variability. The extrapolation of group statistics to individuals introduces a further element of bias and subjectivity. The number of prognostic factors experienced will increase in any individual as death approaches, though not all patients will develop prognostically significant signs or symptoms. Patients may die suddenly and unexpectedly, for example, from a pulmonary embolus. The emphasis has been on correctly identifying those likely to die within a given period e.g. the draft NICE guidelines uses a period of three days. However, there will be both false positives – those thought likely to die who do not in fact die and false negatives – those who will in fact die but do not have the relevant prognostic signs. If treatment is predicated on prognosis it will be given to those who are falsely thought to be dying and might exclude those who are in fact dying but have not been identified using the prognostic tool.

There is a need to take into account not only individual variation but also disease trajectories. In practice, knowing the trajectory of different diseases and the changing condition of the patient are important in predicting the likely outcomes for individual patients. It is important to separate the natural history of disease from the effects of treatment on disease progression. This is particularly true of the effects of opiates and sedation on respiratory parameters , consciousness and oral intake.

Finally, the reliability of any diagnostic tool needs to be evaluated prospectively for different healthcare professionals in different settings. For example, are nurses more or less reliable than doctors, or are generalists more accurate than specialists?

Basing treatment upon need and not prognosis

“I would add that we should not “Give up” on any patient, terminal or not terminal. It is the one who is beyond medical help who needs as much if not more care than the one who can look forward to another discharge.”   Dr Elizabeth Kubler-Ross (On Death and Dying).

The three independent goals of medical practice are:-

• the treatment of disease and cure when possible,
• the relief of distressing symptoms and
• the restoration of physical, mental and spiritual function and wellbeing.

These are independent, though inter-related aspects of all medical practice and not restricted to terminal illness.

Traditional palliative care is based on the need to relieve distressing symptoms and to restore function, whether or not cure of the underlying disease is possible or appropriate. The LCP focused on the dying of the patient. Palliative care focuses on the living of the dying patient. The dying patient often has a great deal of living still to do precisely because they are dying.

Palliative care should be based upon the relief of symptoms and the needs of the individual patient and not merely on the premise that the clinician thinks someone is dying. The overarching principle is that treatment should be based upon need and not prognosis.

Clinicians should be aware that if a possible or likely death is predicted, then the care that is provided must be based both upon the palliation of symptoms and provision of appropriate care. Medical treatment and personal care should be based on a careful clinical assessment and tailored to the individual needs of the patient. Treatment is not indicated simply because someone is thought likely to die in the next few days[3]. The safest course in terms of patient outcome and the available evidence is that palliative care should be based upon need and not prognosis.

Communication, shared decision making and consent

Communication

The Guideline Development Group (GDG) acknowledged that “much of the distress and controversy surrounding the Liverpool Care Pathway could have been prevented by sensitive and timely communication between clinicians, relatives and other carers.”[4] The Neuberger Review high­lighted this as a “non-negotiable aspect of best practice in end of life care.”

Nevertheless, the GDG could find no studies “that elicited experiences or perceptions of the dying person” and there was one study “which interviewed bereaved carers and healthcare professionals about people that had died in acute hospital settings, about the general care they received including communication of prognosis.”[5] However, despite the paucity of studies on communication, there is no doubt from the last Audit of the Liverpool Care Pathway (NADH 20010/11) that the degree of communication about the Liverpool Care Pathway was poor.

The LCP appeared to be implemented without the consent of the patient or the knowledge or agreement of relatives in a significant proportion of patients. A large proportion of patients were either deemed to be ‘unconscious’ at the instigation of the LCP (45%) or were otherwise unable, or not given the opportunity, to give their consent. As many as one in 5 patients on the LCP had dementia either as their main diagnosis (4%) or as a significant co-morbidity (16%).

The GDG makes a number of recommendations regarding communication and shared decision-making.[6] We agree that communication is key to good palliative care and commend the recommendation of the Neuberger Review:

“Respectful treatment of the dying patient and the carers requires time to be taken over the difficult tasks of providing information, including the difficult task of delivering the news that the person is dying, understanding the person’s needs and capacity to assimilate bad news and providing the opportunity to reflect on that information and to ask questions. This should be a non-negotiable aspect of best practice in end of life care.”

We agree with the GDG that families and the chosen next of kin should normally be fully consulted . It is important to involve those that the person considers important to them so that they can be present when making decisions about their care[7]; to consider with the dying person and those important to them their stated preferences about their care[8] and whether the dying person or those important to them have any cultural, religious, social or spiritual preferences that should be considered.[9]

The GDG should also make it clear in the guidance that it is important for the doctor to make positive enquires as to whether the patient has appointed an attorney who may have the legal powers to make decisions for the patient i.e. donee of Lasting Power of Attorney (or Welfare Attorney in Scotland).

Shared decision-making

“How people die lives on in the memory of those who live on.”   Dame Cicely Saunders

The Neuberger Review noted that “preventable problems of communication between clinicians and carers accounted for a substantial part of the unhappiness reported to us. Relatives and carers felt that they had been “railroaded” into agreeing to put the patient on a one-way escalator. We feel strongly that if acute hospitals are to deal with dying patients - and they will -whether or not they are using the LCP - they need to treat patients, their relatives and carers with more respect”.

The guidance makes only a brief reference to the involvement of family and friends in decision making. The GDG needs to highlight the importance of discussion with the mentally competent patient and with family and those important to the patient when they lack capacity to make decisions for themselves. It cannot be assumed that clinicians may make decisions on behalf of mentally incapacitated patients. Therefore it is essential to mention in the recommendations the importance of enquiring whether the mentally incapacitated patient has appointed a donee of Lasting Power of Attorney (or Welfare Attorney in Scotland) to make decisions on their behalf. The Neuberger Review recommended an independent advocate for those without relatives who lacked capacity.

Neuberger stated “For each patient on an end of life care plan that has no means of expressing preferences and no representation by a relative or carer, views on their care should be represented by an independent advocate, whether appointed under the Mental Capacity Act 2005, a chaplain, or an appropriate person provided through a voluntary organisation. This applies to people of whatever age who lack capacity”.[10]

There should be regular audit of the care of the dying which takes into account medical treatment, nursing care, spiritual support and the concerns of relatives and carers. We also agree with the Neuberger Review that “The National Institute for Health Research fund should fund research into the experience of dying. Research priorities must extend also to systematic, qualitative and mixed methods research into communication in the patient and relative or carer experience.”[11]

Consent

Consent to treatment is especially important in palliative care as in other fields of medicine and should always be sought in a timely fashion where the patient has capacity. As in any other field of medicine, consent should be ob­tained from patients for the diagnosis and treatment of their condition throughout the patient journey and not confined to the last few days of life. This is particularly true of palliative care where the needs and wishes of patients should be actively determined before the patient looses ca­pacity as a result of the underlying condition or treatment. Patient management should be holistic and address the medical, psychological and spiritual needs of the patient.

Decisions about palliative care must be made or supervised by senior clinicians who should be available for further help and advice as the patient’s condition changes. It must be clear to the medical team and relatives who is the named responsible consultant. The Neuberger Review recommended that “a named consultant or GP, respectively, should take overall responsibility for the care of patients who are dying in hospital or the community.”[12] Neuberger also recommended “the name of a registered nurse responsible for leading the nursing care of the dying patient should be allocated at the beginning of each shift. This nurse will be responsible also for communicating effectively with the family, checking their understanding, and ensuring that any emerging concerns are addressed.”[13]

It is clear that many patients were started on the LCP without their consent by virtue of not being aware of their diagnosis or the fact they were dying, because they were ‘unconscious’ or demented or because of the effects of medication which rendered them mentally incapacitated. It seems very unlikely that those in attendance would not have known the underlying diagnosis or that the patient was terminally ill at a time when they had mental capacity in a significant proportion of cases before the last few days of life. A failure to obtain informed consent for care towards the end of life, where consent could and should have been obtained, especially where it involves deprivation of conscious­ness through continuous sedation, raises the possibil­ity of assault. It also raises questions in relation to s.1(3) of the MCA which states that “a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success” and s. 4 (4) which requires that those trying to establish a person’s best interests must “so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.”

Palliative care is concerned with the living of the dying patient. Often those who are dying still have a lot of living to do. It is important to remember that the most important person on the ward round is the dying patient. We should never walk away from the dying patient ­ either metaphorically or literally.

Spiritual and holistic care

“When we face the worst that can happen in any situation, we grow.”  Dr Elizabeth Kubler Ross.

In our experience, families will usually want to see that people die in a way that is compatible with their life-long faith. For example, many will have specific hopes that sacraments, prayers or other rituals will be offered as they are dying. The spiritual care of the dying person is crucial. We recommend the updated NHS Chaplaincy Guide­lines..[14] In our submission we suggested that there should be an additional section:

“Spiritual care should be offered to all who are dying. Friends, relatives and those who are important to them should also be involved wherever possible. Clinicians should therefore refer those who have a faith and who it is thought would want spiritual care to the relevant priest, pastor or minister of religion. The guidance of the Chaplaincy service, who have special expertise in issues relating to the pastoral care of the dying, should be sought at an early stage. We recommend the NHS Chaplaincy Guidelines (2015) for further help and assistance in this important aspect of care and compassion for the dying.”

Provision of hydration and nutrition

The GDG questioned the overall validity of the evidence available due to the risk of bias in the study design in all papers and the imprecision of a large proportion of the outcome measurements. They noted that the randomised clinical trials (RCTs) were terminated early due to recruit­ment or financial problems and were therefore underpow­ered.[15] (p152). We also agree “that a trial of assisted hydration should more readily be started when there is uncer­tainty that a person is dying and might recover but is currently unable to take oral fluids. This would be important to prevent death from dehydration in a potentially reversible condition.”[16]

The third Cochrane review on the provision of hydration by Good and colleagues was repeated in 2014.[17] Six studies were identified including three RCTs (222 participants) and three prospective controlled trials (360 participants). The authors concluded that the small number of studies and heterogeneity of the data meant that a quantitative analysis of the data was not possible. However, qualitatively one study showed that sedation and myoclonus scores improved in the intervention group and another study showed that dehydration was greater in the non-hydration group. However, some symptoms related to fluid retention e.g. pleural effusions, peripheral oedema and ascites worsened with hydration. The other four studies did not show significant differences in out­comes between the two groups. The authors concluded that “there are insufficient good-quality studies to inform definitive recommendations for practice with regard to the use of medically assisted hydration in palliative care patients”.

The studies are difficult to interpret because of their heterogeneity, short duration and reporting of data. In particular, the amount of oral intake and details of fluid balance were often missing. For example, in the latest study by Burera (2013)[18] the oral intake in the two groups was simply not documented which is a significant omission in a study to examine dehydration.

The GDG group were broadly in agreement with the Cochrane Reviews. They noted that “the experience of the GDG was that there is benefit in some circumstances, such as in the case of managing thirst or managing delirium caused by dehydration, this was not captured by the evidence.”[19] The GDG also noted that patients “may develop symptoms of dehydration including dry mouth, thirst, confusion and agitation, particularly if there are associated conditions such as hypocalcaemia and opioid toxicity due to impaired renal clearance. This can cause considerable distress to the patient and those important to them particularly if hydration is not adequately assessed and managed.”[20]

The GDG recognise the importance of opioid toxicity due to impaired renal function.[21] Morphine and its metabo­lite (morphine 6 glucuronide which is also pharmacolog­ically active) accumulate in the body, especially if the patient is becoming dehydrated (as the active metabolite is excreted in the kidneys). The issue of increased midazolam toxicity due to accumulation of the drugs and its active metabolite in those who are dehydrated or oliguric has also been recently recognised.[22]

The GDG concluded that the management of hydration in the dying person should always be individualised and be provided wherever possible by oral means.

We disagree with the view regarding the use of laboratory tests, that “there was not always additional benefit to performing these tests in the last days of life. They agreed that the principle should be that these tests not be routinely undertaken as hydration status could be assessed clinically.”[23] The GDG does state that if laboratory test results are available they may guide decisions around assisted hydration but no recommendation was made as this was considered to be outside the remit of this guideline. We feel that a proper assessment of hydration is important which may require both a clinical and laboratory assessment. Many sick elderly patients will not complain of thirst even when dehydrated. Indeed, symptoms of dehydration may include confusion, agitation and delirium which are well recognised in healthy individuals who become dehydrated. Laboratory tests may indicate dehydration and deteriorating renal function and also alert the clinician to the increased susceptibility of dehydrated patients to the effects of opiates and sedatives.

Pharmacological interventions

(i) Pain

The use of opiates for pain is well established and supported by several Cochrane reviews. The guidelines emphasise that “the management of pain in the last days of life should follow principles of pain management used at other times.”[24] Indeed, the GDG chose “not to make any specific recommendations about pain management in different patient groups and suggested the clinician should follow the normal prescribing practices present at any other time of life.”[25] However, people with dementia may be very sensitive to morphine.[26] We agree that pain management strategies should follow the principles of pain management used at other times. However, we would also point out that there are a variety of specialised pain relief strategies which tend not to emphasised but which are evidence based e.g. nerve block techniques.

(ii) Breathlessness

Use of opiates

Opiates are widely used for breathlessness. However, it is of interest that there was a Cochrane review by Jennings and colleagues on the use of opiates for the palliation of breathlessness in terminal illness which has been with­drawn as it is now out of date and could be misleading.[27] Therefore, whilst opiates are still used in breathless patients, further evidence is awaited with interest.

Use of benzodiazepines

A Cochrane review in 2010 by Simon and colleagues[28] tried to determine whether benzodiazepines relieve breathlessness. They identified 200 participants with advanced cancer and COPD. They concluded that "There is no evidence for a beneficial effect of benzodiazepines for the relief of breathlessness in patients with advanced cancer and COPD. There is a slight but non-significant trend towards a beneficial effect but the overall effect size is small. Benzodiazepines caused more drowsiness as an adverse effect compared to placebo, but less compared to morphine.”

The review supported “the use of benzodiazepines only if other first-line treatments, such as opioids and non-drug treatments, have failed”. There is still an urgent need for more studies to find better ways to relieve this burdensome symptom in patients with advanced diseases. The studies comparing the use of oxygen versus room air and with the use of morphine or hydromorphine were regarded as of ‘very low’ quality.

The GDG examined 3 studies for breathlessness. The two examining the effects of oxygen and opiates were regarded as being of ‘very low’ quality. In the third study, the GDG considered that there was moderate and low quality evidence to suggest that a combination of morphine and midazolam was beneficial compared to the use of either intervention alone. This effect was more apparent at 24 rather than 48 hours. This view was not shared by the Cochrane Reviews. There was no evidence concerning survival outcomes in any of these studies. The paucity of information on the management of breathlessness is striking and in identifying 3 studies for analysis the GDG had examined 144 articles on pharmacological interven­tions. Simon et al had excluded 74 out of 79 reviews for the Cochrane Review.

The GDG was therefore right to consider non-pharmacological management of breathlessness and to try and identify and treat reversible causes of breathlessness e.g. pulmonary oedema. Whilst not recommending the routine use of oxygen for breathlessness in the absence of hypoxaemia, the GDG did recommend consideration of an opioid, benzodiazepine or combination of the two even though there was no UK marketing authorisation for this indication whilst recognising that monitoring “would minimise the risks of clinical harm in using these medications.” We are concerned that NICE has not been more cautious in recommending drugs for unlicensed indications in the absence of a sound evidence base. The hallmark of good prescribing is a sound evidence base. In the absence of such evidence we would suggest NICE should be more cautious in its recommendations.

(iii) Nausea and vomiting

The GDG notes that “there is no evidence-based guidance on best practice in the pharmacological management of nausea and vomiting in the last few days of life and current practice has been extrapolated from our knowl­edge of treating these symptoms at other stages of illness in different diseases.”[29] Nevertheless, the GDG reviewed three randomised controlled trials which examined the effects of octreotide and hyoscine butylbromide. The clinical evidence showed that octreotide was more clinically effective than hyoscine butylbromide in one study and less clinically effective in another. Two of the studies were small and the third had a high attrition rate. Not surprisingly, the GDG noted that there “was currently wide national variability in the management of nausea and vomiting in the last days of life. They were particularly surprised that a recent national audit of care for the dying adults in hospitals found that cyclizine was the most commonly prescribed antiemetic given. In the GDG’s opinion this drug had lower efficacy compared with others, was often poorly tolerated by people at the end of life, is incompatible with many other drugs in a syringe driver and is frequently associated with site reactions if administered subcutaneously. No evidence was identified for cyclizine and no recommendations were made.”[30]

In the Cochrane Reviews, there was no clear evidence of benefit for levomepromazine,[31] haloperidol,[32] or droperidol.[33] There is a lack of good quality evidence for the use of anti-emetics and antipsychotics for nausea and vomiting. We would emphasise that good practice in prescribing should be evidence-based wherever possible. We agree that non-pharmacological methods of treating nausea and vomiting should be considered (but not only in the last few days of life). There should be a search for reversible causes and drug toxicity and the use of nasogastric suction considered for bowel obstruction.

(iv) Agitation and anxiety

Despite the widespread advocacy of benzodiazepines and antipsychotics such as haloperidol and levomepromazine in the Liverpool Care Pathway, this is not evidence based and the review by Candy et al (2012) concluded: “There remains insufficient evidence to draw a conclusion about the effectiveness of drug therapy for symptoms of anxiety in adult palliative care patients. To date no studies have been found that meet the inclusion criteria for this review. Prospec­tive controlled clinical trials are required in order to establish the benefits and harms of drug therapy for the treatment of anxiety in palliative care.”[34]

Hirst and Sloan concluded their review (in 2002) by stating: “Despite a comprehensive search no evidence from randomised controlled trials was identified. It was not possible to draw any conclusions regarding the use of benzodiazepines in palliative care.”[35]

The draft NICE guidance suggests a trial of a benzodi­azepine[36] and an antipsychotic[37] for anxiety and agitation despite the poor evidence base for the use of benzodiazepines and antipsychotics . Nevertheless we agree that possible sources of anxiety and agitation should be sought e.g. metabolic disturbance and psychological causes.[38]

(v) Respiratory tract secretions

Anti-secretory drugs such as glycopyronium and hyoscine are used for respiratory secretions. Approximately half of those relatives and friends who witness it, as well as hos­pital staff, find the noise of 'death rattle' distressing. Nev­ertheless, Dr Bee Wee and Hellier (2008) concluded: “In our original Cochrane review, we concluded that there was no evidence to show that an intervention, be it pharmacological or non-pharmacological, was superior to placebo in the treatment of noisy breathing. This conclusion has not changed.” [39]

Despite the absence of evidence for their efficacy and even though they have no marketing authorisation for this recommendation, glycopyrronium and hyosocine are recommended.[40]

We agree that non-pharmacological measures should be considered to manage pharyngeal secretions and that medication should be stopped if it is not helpful or causing side effects.[41] The guidelines do not specifically mention suctioning, positioning and physiotherapy.

Conclusions regarding Pharmacological Interventions in Palliative Care

“You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die.”  Dame Cicely Saunders

We recognise that pharmacological interventions may be necessary for the alleviation of distressing symptoms. However, prescribing should be evidence based as a matter of good clinical practice wherever possible. As the GDG and Cochrane reviews demonstrate, the evidence base for many of the pharmacological interventions currently in use is often lacking with the exception of the use of opiates for pain control. Nevertheless, opiates, benzodiazepines and hyoscine can cause sedation. In those who contacted us about the use of these medicines, it is clear that there is a real concern that having started them, relatives and friends see their loved ones become comatose and die. For those who are dying the last few days with their loved ones are very precious. Loss of conscious awareness can deny patients the opportunity to be with friends and family when they are dying.

While it is often essential that medication is given as part of appropriate symptom alleviation, care must be taken to avoid unnecessary use of drugs which cause patients to be deprived of their conscious awareness as they die. Balancing the control of symptoms with avoiding over-sedation should be a clear priority. Patients should die peacefully but also be allowed to live well until they die with those who are dear to them.

Anticipatory Prescibing

We are concerned at the prospect of anticipatory prescribing, which would appear to allow the introduction of pre-prescribed medication by insufficiently senior staff for what others might regard as inadequate reasons. It appears to presuppose that the senior person in charge of the case may not be available for a relatively long periods of time. As the draft guidelines express it, the danger is of “injudicious administration and prescription of medication by inexperienced staff, possibly unfamiliar with the person” however careful the original prescriber has been[42]. Anticipatory prescribing must not be allowed to substitute for proper ongoing assessment and care for the patient. We do not accept that anticipatory prescribing should be ‘as early as possible’ but rather should be limited to the period of 24 or 48 hours before the likely need, and then only when there is expected to be a serious and significant delay in obtaining the medication (for example in general practice over a weekend when chemists may be shut).

Equality Impact Assessment

We are concerned about several issues missing from the Equality Impact Assessment which can affect clinical practice.

Vulnerable people and people with cognitive impairment

We are deeply concerned that the equality impact assess­ment fails to note the risks that vulnerable people (including, but not limited to, people with learning disabil­ities, very frail patients and those with dementia and other forms of cognitive impairment) face as a result of care at the end of their lives. The Equality Impact Assessment needs to be enlarged to include specific reference to these groups and to state how the risks are to be mitigated. Once again, this requires strong clinical leadership to ensure the needs of these patients are met appropriately and sensitively.

Patients with no family members or advocates

Those with no family members, attorneys or advocates are at greatest risk as they die. The guidelines recommendation of the anticipatory use of potent sedatives before symptoms merit their use means that those who are weak, alone or frail may well be at increased risk of poor care, over-sedation and death by dehydration as was seen so often with the LCP. The guidance needs to consider how to safeguard against this, so that people can be comfortable but also prepare appropriately for death, whilst not being unduly deprived of consciousness.

Mental Capacity Act 2005

There needs to be clear reference to where the Mental Capacity Act applies and must be considered by clinicians. This should include guidance about seeking second options and assuring that treatment decisions are taken at an adequately senior level. It is important to make positive enquires as to whether the patient has appointed an attorney who may have the legal powers to make decisions for the patient.

Need for research

The Neuberger Review noted that “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”. The Italian study by Costantini and colleagues compared the use of the Liverpool Care Pathway in an Italian context (LCP-I) against current best practice by specialised Palliative Care Teams (PCTs) in Italy and concluded that “the LCP-I programme seemed not as good as that provided by Specialised Palliative Care Teams PCTs.”[43]

There is a need for research into the biology of dying, communication, pharmacological and non-pharmacologi­cal interventions in palliative care as well as specific palliation procedures.

CONCLUSIONS.

‘You matter because you are you and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.’ Dame Cicely Saunders

Patient management should be holistic and address the medical, psychological and spiritual needs of the patient.

Palliative care should be based on the patient’s needs rather than the perceived prognosis which is at best a subjective judgment.

The focus should be the relief of symptoms and where possible should include the restoration of mental and physical function and psychological and spiritual wellbeing.

Further research is clearly needed and should be compared to best available practice.

Whilst there should not be financial incentives and targets for placing patients on an ‘end-of-life’ pathway, there should be appropriate funding made available for training of healthcare professionals in palliative care.

Good communication with the patient is fundamental to all clinical practice. Discussion of the patient’s condition and treatment with relatives should not be a substitute for dealing with the patient directly. Communication with relatives and carers is especially important in the care of the dying. However, this should always be done in a timely manner and with the consent of the patient unless the patient lacks capacity.

Good palliative care requires good communication and timely intervention. It must start early as the patient’s condition and circumstances become clearer and should not be confined to the few last remaining days of life. Consent to treatment is necessary in palliative care as in other fields of medicine and should always be sought in a timely fashion where the patient has capacity regarding the diagnosis and treatment of their condition throughout the patient journey. This is particularly true of palliative care where the needs and wishes of patients should be actively determined before the patient looses capacity as a result of the underlying condition or treatment. Treatment plans should be endorsed by senior medical personnel who should be available for further help and advice as the patient’s condition changes. Palliative treatment should be evidence-based wherever possible. Hydration and nutrition should not be withheld or withdrawn with the intention and purpose of bringing about the death of the patient. This is both unethical and unlawful.

The whole approach has been based on the understanding that a person is an indivisible entity, a physical and a spiritual being.[44] It is particularly important that health­care professionals attend to the spiritual needs of the dying and help to arrange the appropriate pastoral care.