A 'pain-free' death - Oxford Academic

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A ‘pain-free’ death Fiona Hicks * and Elizabeth Rees Department of Palliative Care, Leeds Teaching Hospitals Trust, UK Background: The time around a patient’s death is often filled with sadness, but good medical and nursing care can provide comfort to patients and their carers at this critical time. For many, a ‘pain-free’ death is a priority although there are other aspects to providing good care at the end of life. Honest, open discussion with patients and carers about their wishes is an essential prerequisite to individualized care. Sources of data: Relevant literature was reviewed with regards to policy, education and delivery of end of life care. Areas of agreement: Pain management must be tailored to the individual with due regard to the route of analgesic administration in those unable to swallow, and consideration to the other circumstances surrounding a person’s care. All staff caring for dying patients should address pain as a priority in managing end of life care, to promote the best possible death for patients and prevent undue distress for carers and staff. Areas of controversy: This review has approached patient care at the end of life within current UK legislation, outlining what can be done to promote a ‘pain- free’ death. Debate continues about the role of euthanasia within end of life care and the use of analgesics and sedatives in pain management in terminal care. Growing points: There is a range of tools available to help staff to care for dying patients, such as the Liverpool Care Pathway (LCP) for the Dying. It is most effective when introduced as part of a wider system of staff education in relation to terminal care. Areas timely for developing research: Research into care of the dying will continue to be challenging. Priorities include; whether the use of tools such as the LCP improve the care patients receive, and the development of routine outcome measures including validated reports from patients and proxies. Keywords: pain/terminal care/end of life care/review British Medical Bulletin 2008; 88: 23–41 DOI:10.1093/bmb/ldn043 & The Authors 2008. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: [email protected] Accepted: November 4, 2008 *Correspondence to: Dr F. Hicks, Palliative Care Team, First Floor, Robert Ogden Centre, St James’ University Hospital, Leeds LS9 7TF, UK. E-mail: fiona.hicks@ leedsth.nhs.uk Published Online November 26, 2008 Downloaded from https://academic.oup.com/bmb/article/88/1/23/268203 by guest on 27 January 2022

Transcript of A 'pain-free' death - Oxford Academic

A ‘pain-free’ death

Fiona Hicks* and Elizabeth Rees

Department of Palliative Care, Leeds Teaching Hospitals Trust, UK

Background: The time around a patient’s death is often filled with sadness, but

good medical and nursing care can provide comfort to patients and their carers

at this critical time. For many, a ‘pain-free’ death is a priority although there are

other aspects to providing good care at the end of life. Honest, open discussion

with patients and carers about their wishes is an essential prerequisite to

individualized care.

Sources of data: Relevant literature was reviewed with regards to policy,

education and delivery of end of life care.

Areas of agreement: Pain management must be tailored to the individual with

due regard to the route of analgesic administration in those unable to swallow,

and consideration to the other circumstances surrounding a person’s care. All

staff caring for dying patients should address pain as a priority in managing end

of life care, to promote the best possible death for patients and prevent undue

distress for carers and staff.

Areas of controversy: This review has approached patient care at the end of life

within current UK legislation, outlining what can be done to promote a ‘pain-

free’ death. Debate continues about the role of euthanasia within end of life

care and the use of analgesics and sedatives in pain management in terminal

care.

Growing points: There is a range of tools available to help staff to care for dying

patients, such as the Liverpool Care Pathway (LCP) for the Dying. It is most

effective when introduced as part of a wider system of staff education in

relation to terminal care.

Areas timely for developing research: Research into care of the dying will

continue to be challenging. Priorities include; whether the use of tools such as

the LCP improve the care patients receive, and the development of routine

outcome measures including validated reports from patients and proxies.

Keywords: pain/terminal care/end of life care/review

British Medical Bulletin 2008; 88: 23–41

DOI:10.1093/bmb/ldn043

& The Authors 2008. Published by Oxford University Press.

All rights reserved. For permissions, please e-mail: [email protected]

Accepted: November 4,

2008

*Correspondence to:

Dr F. Hicks, Palliative Care

Team, First Floor, Robert

Ogden Centre, St James’

University Hospital, Leeds

LS9 7TF, UK.

E-mail: fiona.hicks@

leedsth.nhs.uk

Published Online November 26, 2008D

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Introduction

‘How people die remains in the memory of those who live on,’ saidDame Cicely Saunders, founder of the modern hospice movement.

The importance that we should attach to the care of dying patientswas emphasized by Sir Nigel Crisp, Chief Executive of the NationalHealth Service in the UK when he said ‘Better care for the dyingshould become a touchstone for success in modernising the NHS’.1

Health-care professionals only have one chance to ‘get it right’ andensure dying patients receive excellent terminal care and loved ones arenot left with unnecessary traumatic memories. It is important we con-tinue to aim to improve the care of the dying to the ‘level of the best’.2

This was re-emphasized by Professor Mike Richards, NationalClinical Director for Cancer who wrote, ‘How we care for the dying’ isan indicator of how we care for all sick and vulnerable people. It is ameasure of society as a whole and it is a litmus test for health andsocial care services.3

Diagnosing dying

In order to be able to care appropriately for dying patients, a diagnosisthat the patient is dying needs to be made. Making such a diagnosis isan important but difficult clinical skill that requires experience in thefield and recognition of the complexity of such decisions. There can beunderstandable reluctance from staff to make the diagnosis if there isan element of uncertainty as to whether the patient’s condition mayimprove or if the cause for the deterioration is unknown. Such uncer-tainty should be communicated with the patient and their families inorder to maintain a good relationship and prevent false hope beinggiven. In the context of advanced illness, signs that a patient is dyingcan include: a change in colour, gauntness, diminished oral intake, dif-ficulty in taking oral medications, temperature change in the extremi-ties, poor concentration, disorientation, increasing drowsiness, beingbedbound and a reducing conscious level.

Pain in terminal illness

Pain is the most common and the most feared symptom of advancedmalignant disease,4 and a fear of dying in pain is common regardless ofdiagnosis. Although we know how many people die each year in theUK according to age and cause of death, we do not routinely recordhow many patients actually die in pain. It has been widely reported

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that terminally ill patients experience substantial pain although theprevalence varies between studies.5

In 2004 in England and Wales, there were over 500,000 deaths ofwhich 26% were due to cancer, 37% circulatory disease, 14% respirat-ory disease, 3% diseases of the nervous system and 20% from othercauses.6 Most deaths occur in NHS hospitals, with �18% dying athome, 17% in care homes, 4% in hospices and 3% elsewhere.3 In arecent review, pain was reported to be prevalent in the majority ofpatients with an advanced illness: 35–96% in cancer patients, 63–80% in AIDS patients, 41–77% in heart diseases, 34–77% in chronicobstructive pulmonary diseases and 47–50% in renal diseases.7

The high prevalence of pain in the dying could indicate poor qualityof care at the end of life, although this should be viewed with caution,as pain control alone is not the only quality indicator for a good death.Addington-Hall8 reported the differences in pain control in the last 3days of life according to bereaved relatives of cancer patients andfound that pain was completely controlled in over 70% of patients inhospices, .60% at home and in ,50% of patients in hospitals. Thereis clearly room for improvement in all settings but particularly withinthe acute hospitals.

A ‘Good Death’

Characteristics of a good death have been described by both patientsand health-care professionals as being pain-free/adequately symptomcontrolled, respectively.9 The consequences of a bad death because ofpoor pain control or other issues can result in a complicated grievingprocess and can cause an increased risk of morbidity and mortality forcarers in the bereavement phase.10 Staff groups can be left with feelingsof failure if they have been unable to control patients’ symptoms,leading to increased levels of stress and a feeling of guilt.

Cultural aspects of care at the end of life

It is important to understand that people hold different views on whatconstitutes a ‘good death’.11 For many people brought up in westernsecular cultures or Judeo-Christian traditions, a ‘pain-free’ death is animportant component of a good death. This may not be the case inother traditions such as Buddhism, where an emphasis on clarity ofmind may be more important or some Muslim traditions, where painmay be seen as a punishment to be endured.12 There is no substitutefor taking time to find out from patients and families about their

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beliefs and priorities for end of life care as assumptions based solely ona general knowledge of culture and religion are often inaccurate.13

Myths about morphine

Nearly all health-care professionals will be involved in caring for aperson in the last days of life at some point in their career although itmay only happen occasionally for some. This can be a challenging partof their role which is often compounded by myths concerning mor-phine. Fears about the use of morphine at the end of life remain preva-lent among patients and staff.5,14 For example, some people think thatthe use of morphine always causes tolerance and addiction or that asdeath approaches doctors may escalate the dose in order to hastendeath. These misconceptions can lead to difficulties in treating paindue to a resistance by patients and carers to accept the appropriateusage and required doses of morphine. Portenoy et al.15 addressed thisin a survey of opioid use at the end of life in a hospice population andconcluded that opioid doses titrated over time do not induce sleep orstop patients’ breathing. It is important that health-care professionalsare confident in this knowledge in order to be able to discuss suchissues with patients and carers.

Pain in children

Pain management in children at the end of life follows many of thesame principles, but is not the subject of this review. Further guidanceon prescribing can be found in the BNF for children.16

Assessment of pain

An essential prerequisite to good pain management in any context isthorough and accurate pain assessment. Dying patients may haveseveral different sources of pain. Where possible, each should beassessed, as treatment tailored to the sites and causes of pain is mostlikely to be effective.

Changes in pain at the end of life

The type of pain experienced by patients at the end of life variesaccording to the underlying diagnosis. Early attention to the diagnosisof pain syndromes during the palliative phase of a patient’s life will

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help with pain management during the dying phase, as the causes ofthe pain will have already been established. Patients and their doctorsoften associate a diagnosis of cancer with an expectation of pain, butpatients with other terminal illnesses, such as chronic respiratory dis-eases, report similar incidences.17 There is a body of evidence tosuggest that under-treatment of pain in patients with cancer and non-malignant disease remains a significant issue.5

As patients become increasingly frail towards the end of life, they maylose muscle mass and become less mobile which may cause musculoskele-tal pains to become more prevalent. Pain from pressure areas may alsobecome troublesome, even with excellent nursing management.Conversely, some pains may improve, especially those related to move-ment and exertion, such as angina or pain from osteoporotic fractures.

Types of pain

Nociceptive pain

Nociceptive pain occurs when there is mechanical, thermal or chemicalstimulation of peripheral nociceptors in skin, muscle, bone or connec-tive tissue. It is usually well localized to the area of damage. Examplesinclude pain from pressure sores, arthritic joints or bone metastases.

Neuropathic pain

Neuropathic pain is caused by direct damage to or disturbance of theperipheral or central nervous system. It is often described as shootingor burning and may be well or poorly localized with associated areasof decreased or abnormal sensation. Examples include compression orinvasion of peripheral nerves by cancer, or compression due to ver-tebral collapse.

Visceral pain

Visceral pain is usually a mixture of neuropathic and nociceptiveaetiologies caused by stimulation of nerve plexuses in the thoracic,abdominal or pelvic viscera. This may be due to stretch or compressionby tumour masses, intestinal obstruction/constipation. It is usuallypoorly localized.

Taking a pain history

Experience of pain is entirely subjective. As such, the pain history is theprimary source of information. In patients who have and retain the cogni-tive ability and verbal skill to describe their pain during the terminal

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phase of their illness, a detailed history can be taken. This should includethe site of pain, radiation, character, duration, severity, precipitating andrelieving factors. A medication history is also invaluable, outlining pre-viously effective or ineffective treatments and associated side-effects. Anexploration of the patient’s understanding of the cause of their pain andtheir wishes for treatment can help to guide future management. Specialcare should be taken for those with intellectual disability, as described ina review by Tuffrey-Wijne and McEnhill18 and the National Council forPalliative Care,19 and in the elderly.20

Use of care-givers as proxies

In the last days of life, it is not uncommon for patients to becomeunable to verbalize their pain. This may be due to a falling level of con-sciousness or development of delirium. Prior knowledge of the patient,their condition and previous pain can be very helpful. If a patient isadmitted to hospital or hospice at this stage, it is essential to get agood history from their previous care-givers, such as their GP, districtnurse, nursing home staff and/or family members. Several studies havelooked at the relationship of the assessment of pain and other symp-toms between the patient, family members and doctors to see if care-givers are reliable proxies in this context. Unfortunately, although thecorrelation on incidence of symptoms is good, in the assessment ofseverity of symptoms it is poor.21–23

Assessment tools

There are many tools that have been evaluated in the assessment ofpain, such as visual analogue scores, simple numerical rating scales,verbal rating scales, body charts and questionnaires such as the BriefPain Inventory.24 These are of limited value in the last days of life aspatients become more fatigued and less able to talk, although the useof simple numerical (0–10) or verbal (none, mild, moderate or severe)scales can be used to assess the effectiveness of treatment.

Behavioural assessment of pain or distress

For patients who are unable verbally to express or describe their pain,observation of behaviours must be relied upon. Skilled, multi-professional assessment with input from close family and friends canbe very helpful. Non-verbal cues such as crying or grimacing however,cannot distinguish pain from other causes of distress. There are toolsthat have been developed to help in such situations.25,26 Treatment

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may need to be empirical with attentive review of its effectiveness onthe behaviours exhibited. Clear documentation of this is essential forcontinuity of care among staff members.

Physical examination

For patients in the last stages of life, a routine, full examination maynot be necessary, but examination focussed on finding the cause ofpain can inform management. This should be done on all patients,asking patients where possible to report areas of pain and tenderness,but also looking for facial grimacing and withdrawal responses inthose patients unable to vocalize. Special attention should be given toassessment of pain from pressure areas, pain on movement and thepatient’s mouth, which may become dry and sore.

Investigations

Most dying patients will not need investigation before managing theirpain.10 Many will have had previous X-rays and scans that may revealthe likely cause of their current pain and these do not need repeating.

Pain thresholds

Co-existent symptoms, such as nausea and vomiting, or fear andanxiety, may lower a patient’s ability to cope with their pain. Goodend of life care should address the whole person, in the context of theirfriends and family, rather than treating physical pain in isolation.27

Pain management

Towards the end of life priorities for treatment and care often change.Although patients may be willing to cope with the side-effects of treat-ment while hoping for cure or prolongation of life, when the dyingphase is reached, treatment should largely be aimed at immediatecomfort.28 Good pain management is therefore a priority for most.

Interventional methods of analgesia, such as nerve blocking tech-niques, radiotherapy or orthopaedic interventions are rarely appropri-ate at this stage, although where possible treatment should be directedat the cause. This may include immobilization of a fractured limb orpainful joint, pressure relieving mattresses to reduce incident paincaused by turning and good mouth care.

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In the last days of life, many patients become unable to swallow theiranalgesics. For those with enteral feeding tubes, their usual drugs maybe continued but for most, alternative methods of administration areneeded.

There are many formulations for convenient parenteral adminis-tration of analgesics for nociceptive, somatic and visceral pains, butoptions for the management of neuropathic pain are more limited.

Use of drugs beyond licence

As with much prescribing in palliative care, many of the drugs rec-ommended for pain management at the end of life are used outsidetheir product licence. Care should be taken to ensure that such pre-scribing is done in accordance with published best practice and thatpatients are appropriately informed in discussions on their medicaltreatment. This has been addressed by a position statement from theAssociation for Palliative Medicine of Great Britain and Ireland andthe British Pain Society.29

General principles of pain management for dying patients

The plan for terminal care should be discussed with patients and theirfamilies/carers wherever possible. Drugs not directly needed to promotecomfort may be discontinued.30 Expressed priorities for care should beunderstood and recorded. For most this will include a ‘pain-free’ death.9

Pain in dying patients tends to be constant and therefore requires regularor continuous analgesia. Exacerbations of pain on movement and turningshould be anticipated and managed pre-emptively with supplementaryanalgesia. In addition, pain may escalate as death approaches and pre-scriptions should include ‘as required’ breakthrough analgesics to enablenursing staff to respond promptly should pain occur. As a general rule,the dose of breakthrough medication should be equivalent to one-sixth ofthe daily around the clock opioid dose. For example, a patient receiving acontinuous infusion of 30 mg of subcutaneous morphine over 24 h wouldrequire a breakthrough dose of 5 mg.

Patients with good pain control, now unable to take oral medication

Patients not on opioids

Many patients, especially those dying from non-malignant disease mayhave little background pain. They may be taking simple analgesics such

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as paracetamol, or nothing at all. A prescription for a small dose ofopioid, such as morphine 2.5–5 mg as required,31 would allow prompttreatment should pain occur, but may not need to be used (Fig. 1).

Patients already on opioids

For patient on opioids, it can be safely assumed that their current doseshould be continued in some form. If their pain is managed with atransdermal preparation, such as fentanyl or buprenorphine, thisshould not be altered.

Fig. 1 Flowchart for the management of pain in patients unable to take oral medication atthe end of life.

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For those taking oral opioids, an alternative route is needed and sub-cutaneous medication is usually preferred. It is advisable to continuethe type of oral opioid prescribed and convert it to subcutaneous use asthis is less likely to cause loss of pain control as the change is made.Thus, patients on oral morphine should be prescribed a continuousinfusion of subcutaneous morphine or diamorphine (Fig. 1). Those onoral oxycodone should be prescribed a subcutaneous infusion of oxy-codone. All opioids are more potent through the subcutaneous route asthey undergo first pass metabolism in the liver. For dose equivalents, astandard text such as the BNF or Palliative Care Formulary should beconsulted.32,33 This is not an exact science as the bioavailabilty of oralopioids, especially morphine, shows a large inter-individual variation.For patients on large doses, conservative conversions may be used forthe continuous infusion, supplemented by subcutaneous bolus doses ofone-sixth of the daily dose as required. Advice from specialists in painor palliative care should be sought. If more than two extra doses arerequired in a 24 h period, they should be added to the infusion toensure good, continuous pain control and the breakthrough prescrip-tion adjusted accordingly.

Neuropathic pain

Two of the most common co-analgesics used for neuropathic pain,gabapentin and amitriptyline cannot be given parenterally, althoughcarbamazepine can be given by suppository and dexamethasone bysubcutaneous infusion. For many patients who are now less mobile,neuropathic pain is adequately managed with standard opioids alone.For those taking gabapentin or amitriptyline, a decision is needed as towhether neuropathic pain has been of sufficient severity to require con-tinued medication during the dying phase.

Two drugs that have been used by subcutaneous infusion in this situ-ation are clonazepam34 or ketamine,35 although the evidence base isnot extensive and these are best used on specialist advice. Methadonehas also been shown to be effective for neuropathic pain,36 but itscomplex pharmacokinetics make it unsuitable for non-specialist use inthis context.

Musculoskeletal pain

Musculoskeletal pain may increase or diminish during the dying phaseas patients are less mobile, although attention must be paid to pressurearea care and pain on movement. For some, a continuous infusion ofopioids will be sufficient, but for those with severe pain, alternativesmay be needed. Diclofenac may be given in suppository form if that isacceptable to the patient. It can be irritant if used subcutaneously byinfusion and ketorolac may be the preferred alternative. Both should be

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used only on specialist advice as side-effects of renal impairment andpeptic ulceration may outweigh the analgesic benefit achieved.37

Patients with new or uncontrolled pain

Establishing the cause of any new pains is important before embarkingon management as interventions such as positioning or providing spiri-tual support may be more effective than escalating analgesia.

Patients not on opioids

Patients not previously taking opioids should be started on a low dosegiven subcutaneously as required until comfort is achieved. Morphineis usually the drug of choice (Fig. 1). Once pain relief is achieved, thiscan be converted to a continuous infusion of equivalent dose over 24 h.

Patients already on opioids

For patients already taking opioids, an assessment should be made asto whether there is a problem with absorption of their usual dose (e.g.vomiting) or whether they have escalating pain. For the former, astraight conversion to a subcutaneous infusion will suffice, although abolus dose equivalent to one-sixth of the daily dose should be given inaddition to gain immediate control. For patients with escalating pain,bolus doses of opioids will be needed as required until pain control isachieved. It is usual to increase the dose by increments of 1/4 to 1/3each time. When pain control is achieved, a syringe driver should beset up with an infusion containing the equivalent 24 h dose used. Insuch difficult circumstances, specialist advice may be required.

Neuropathic pain

New neuropathic pain is unusual in the dying phase but if it has beendifficult to control before, it can continue to cause a managementproblem. The drugs listed before may be tried but this situation islikely to require specialist advice.

Musculoskeletal pain

New musculoskeletal pain is not unusual in this context as musclewasting can cause strain on joints and immobility can lead to stiffness.Good nursing care is essential. Topical NSAIDs such as piroxicam gelcan be effective.

Pain from wounds

Skin breakdown in pressure areas and surgical wounds can cause sub-stantial local soreness. When wound healing is unlikely, the pain from

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such areas can be well managed with topical morphine gel appliedunder a non-adhesive, occlusive dressing.38

Special considerations on route of administration

Nursing homes

Although the ‘gold standard’ for pain control in dying patients whoneed opioids is often seen as providing analgesics as a continuous sub-cutaneous infusion through a syringe driver, this may not always be thebest or safest method. Some nursing homes who do not have frequentuse for these devices, may struggle to keep their staff appropriatelytrained in their use. As such, it may be preferable to use analgesics inthe form of transdermal patches, suppositories or regular 4 hourlyinjections.

Patients own home

Where there may be concerns about patient safety or diversion of drugsin the community, alternative routes of analgesic provision may berequired.

Patients on high dose opioids

Patients requiring substantial doses of subcutaneous opioids mayencounter problems with the volume of infusion needed for subcu-taneous use and bolus doses. This is particularly true for oxycodoneand morphine. Diamorphine is available for use in the UK and may bepreferable because of its high solubility, but specialist advice may berequired before conversion.

Patients with organ failure

Many patients suffer from some degree of organ failure towards theend of life. Renal failure has the most significance in practice.Morphine and diamorphine are converted to active metabolites that arerenally excreted and therefore accumulate in renal failure causing tox-icity. This may occur with only slightly raised creatinine and careshould be taken in this population. Codeine should be avoided as it isconverted to morphine and accumulates in the same way. In practice,generalists usually manage this situation by reducing the morphinedose and prolonging the dosing intervals. Oxycodone may be safer, butrequires dose reduction and should be avoided in severe renal failure.39

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Buprenorphine, fentanyl or alfentanil40–44 may be used safely butspecialist input is advised.

Management of opioid side-effects

Respiratory depression

For patients who have been on long-term opioids, respiratorydepression is not a problem, except in the case of overdose. Carefuldose titration, especially when switching between opioid drugs andpreparations should avoid respiratory depression. It should be notedthat drowsiness usually increases during the dying phase and breathingmay become slower and more erratic. If opioid overdose is suspected,conservative management is usually all that is necessary, reducing oromitting the next dose of opioid, or stopping the infusion and restart-ing it at a lower dose. Naloxone should only be considered if the res-piratory rate is ,8/min, the patient is barely rousable and/or cyanosedand the cause is thought to be opioid related rather than the underlyingterminal condition. Use of naloxone may precipitate severe pain andagitation.45

Constipation

Constipation is almost universal in patients taking opioids and thoseon long-term opioids will have been taking aperients. When theybecome unable to swallow, it is likely that time is short and that symp-tomatic constipation will not arise. If symptomatic constipation is sus-pected, rectal measures should be considered.

Nausea and vomiting

For patients new to opioids, �30% will suffer from nausea and vomit-ing. Many others may have the symptom related to their underlyingcondition. Prescribing antiemetics as required in anticipation of thisand including them in the subcutaneous infusion for those affected istherefore advised. A broad spectrum antiemetic such asLevomepromazine 6.25 mg once daily, repeated as necessary up to adose of 25 mg/day would be a good first choice.

Myoclonic jerks

Myoclonic jerks are not uncommon in dying patients and may reflectaccumulation of excitatory opioid metabolites, especially in patientswith renal failure on morphine or diamorphine. This may be distressingfor patients and families and a switch to an alternative opioid may benecessary.

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Terminal agitation

Terminal agitation describes the observed behaviour of a patient who isno longer able to verbalize the cause of their distress. It is likely to bemultifactorial. The causes should be sought where possible andreversed. Delirium is common in dying patients and may be distressing.It is best treated with Haloperidol, starting at 1.5 mg/day, either as asingle injection or as part of a subcutaneous infusion. For somepatients, the cause cannot be defined or reversed and sedation is necess-ary, as described in Fig. 2.

Use of tools to improve end of life care

Improving the care of the dying has been highlighted as a key priorityin a number of national guidance publications in the UK over recentyears. The publication of a National End of Life Strategy in 20083

highlights the importance the Government has placed on improving thecare that the dying receives within our society.

Patients dying from illnesses other than cancer have often been referredto as the disadvantaged dying. However, over the last 10 years there hasbeen a move towards ensuring that all patients regardless of diagnosisreceive good quality care in a place of their choice at the end of life.This is reflected in the numbers of National Service Frameworks46–48

published which highlight the need for good terminal care.Within the NICE Guidance on Supportive and Palliative Care49 it is

acknowledged that care given to dying patients in hospitals, at home andcare homes can be below standard. The NICE guidance addressed thisby suggesting that, ‘Provider organisations should ensure that managedsystems to ensure best practice in the care of the dying are implementedby all multi-disciplinary teams’.49 One such way to undertake this issuggested to be the implementation of the LCP for the Dying.

The Liverpool Care Pathway

The LCP50 has been developed to transfer the hospice model of careinto the acute hospital setting, and was primarily developed for usewith dying cancer patients. It has now been adapted for use with allterminal illnesses. It is a multi-professional document which guidesstaff on best practice for end of life care when a diagnosis of dying hasbeen made (Table 1).

The LCP has become an accepted and almost standard tool for careof the dying in hospitals. It is also widely used for patients at home,hospice and care homes. It incorporates guidance on all areas of care,

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including comfort measures, anticipatory prescribing (Figs 1 and 2) dis-continuation of inappropriate interventions, psychological care, spiri-tual care and family support. The LCP empowers generic health-careworkers to provide optimal care to dying patients.51

The LCP advocates that all patients are prescribed analgesia pre-emptively regardless of whether they are experiencing pain. This enablesthe nursing staff to act autonomously and deliver care promptly according

Fig. 2 Flowchart for the management of terminal restlessness.

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to a change in a patient’s condition. For patients who are already receiv-ing analgesic regimens it recommends conversion to an injectable formfor use when the patient is unable to take medications orally.

Gold standards framework and preferred priorities for care

Advance care planning forms part of the Gold Standards Framework(GSF) which is a model aimed at improving the communication betweenpalliative care patients, their families and health-care professionals toensure patients wishes are identified and planned for in advance.52 Thisincludes the provision of medications for pain control in the event of apatient developing pain at home and discussions with patients aboutwhere they would prefer to be cared for at the end of life.53

Education

Failure to recognize or acknowledge that a patient is dying can hindergood terminal care. This can be due to a lack of education about care ofthe dying and assessment of symptoms at the end of life.49 Within theNational End of Life Strategy 2008, a need for education for all staffgroups caring for the dying has been highlighted as a national priority.

The NHS Knowledge and Skills framework (KSF)54 2004 clearlydefines and describes the skills and knowledge that NHS staff shoulduse in their work in order to deliver a high quality of care. The NHSKSF has been developed to ensure services are developed to meet theneeds of users and the public better by investing in the development ofall members of staff. The framework encourages staff to develop

Table 1 The multi-professional team have agreed that the patient is dying.

Name.........................

Signature ...................Date.........................

In all cases the following four statements must have been agreed to by a senior member of the

patient’s medical team and the staff nurse co-ordinating the patient’s care

1. The patient has a known irreversible life-threatening illness of any aetiology.

2. Reversible causes for the patient’s current deterioration have been considered and appropriately

managed.

3. Intensive care and resuscitation have been discussed by the team and have been deemed to be

inappropriate for the patient.

4. There is day by day deterioration.

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knowledge relevant to their post continually throughout their careerand is assessed annually in an appraisal according to the standardsagreed for each individual post.

The KSF does not apply to medical staff, but recognition of dyingand management of the terminally ill patient are included in theFoundation Competencies for all doctors in the UK. The Royal Collegeof Physicians has emphasized the need for this to be enhanced fordoctors of all grades and specialties, in their report ‘Palliative CareServices, Meeting the Needs of Patients’.55

Conclusion

Pain management is an important part of good terminal care.Systematic education for staff caring for patients at the end of life,alongside the use of recognized care pathways and access to specialistadvice and intervention, should make this possible for most patients.Providing the care to enable a ‘good death’ can be a highly rewardingpart of medical practice and provides the backdrop to enable thebereaved to grieve appropriately.

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