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St Christopher's Hospice Clinical Guidelines Anticipatory end-of-life care medication for the symptoms of terminal restlessness, pain and excessive secretions in frail older people in care homes Julie Kinley, Louisa Stone, Jo Hockley
death in that they gradually become Symptom control for people The term ‘frail older people' has more disabled (Lynn and Adamson, dying from advanced cancer can been defined as people over 75 2003). Their functional deterioration be complex and requires the use years of age with geriatric syndrome, particularly worsens in their final of several medications, including i.e. the presence of numerous year of life, when they can become morphine, which are often delivered chronic diseases and signs and much more dependent in terms by a syringe driver in the last days symptoms such as incontinence, falls, of activities of living (Lunney et al, of life (Twycross and Wilcock, 2011). cognitive impairment and reduced 2003; Costantini et al, 2008). Death Many frail older people also have mobility (Saavreda Muñoz and in frail older people can also be symptoms that require assessment Barreto Martín, 2008). However, relatively unexpected, e.g. frail older and management if they are to some older people are ‘frail' before people can die ‘suddenly' from silent be cared for in a dignified and the age of 75 years. Therefore, frailty pneumonia or quietly in their sleep compassionate manner, especially as in older people should generally be (Lynn and Adamson, 2003). they come to the end of their lives. associated with older people who However, whilst symptom presence have advanced, progressive, incurable Frail older people often have and severity in this population are illness and/or considerable health multiple morbidities, which may be often caused by multiple factors, and social needs (Department of complicated by varying degrees which interact, rather than a single Health, 2001).
of dementia/cognitive impairment aspect, frail older people often require (Rashidi et al, 2011). For example, significantly less parenteral medication The process of dying in frail Lievesley et al (2011) undertook than younger people (Rashidi et al, older people requiring 24-hour care a survey of all residents living in 2011). (Parenteral medication is the appears to differ from, for example, Bupa's UK care homes in 2009. The term that describes the introduction the process of dying in mid-life most commonly occurring disorders of a medication into the body via a from cancer (Hockley and Clark, were dementia (43.6%), stroke route other than the mouth, e.g. via an 2002). People dying with a cancer (20.2%), heart disease (20.6%) and infusion or injection.) diagnosis generally maintain high arthritis (18.3%). Although these functional capacity up until the final data are only from one care home Kinley and Hockley (2010) 3 months of life, when there is a provider, they provide an indication undertook a baseline review of 48 marked decline (Lunney et al, 2003; that the end-of-life needs of people nursing home residents' medication Costantini et al, 2008). However, dying in care homes may differ in their last month of life and found frail older people tend to follow from individuals dying of cancer. that, out of the 11 residents who a dwindling trajectory towards Therefore, when considering the had a syringe driver in the last days management of frail older people in of life, eight of the syringe drivers care homes, it is important that health were in place for less than 1.5 days. Julie Kinley, Research Nurse, Louisa professionals with a background in That indicates that in the last days of Stone, Practice Development Nurse for caring for people with advanced life, symptom control needs of older Care Homes, and Dr Jo Hockley, Nurse cancer do not impose their previous people may be more appropriately Consultant, Care Home Project Team, knowledge of symptom control on managed through the use of bolus St Christopher's Hospice, London. the frail elderly population without subcutaneous medication or rectal appropriate translation. suppositories (Kinley and Hockley, End of Life Journal, 2013, Vol 3, No 3 2010). Also, a concern reported medication in their last month of and relevant subject headings to in this baseline review was that as life (see above) expose the chosen topic: ‘older syringe drivers are rarely used in 8 To ensure that the anticipatory people', ‘elderly', ‘aging', ‘last days nursing homes, nurses working in medication advice for frail older of life', ‘end of life', ‘dying', ‘terminal these settings lack competence in people is supported by the best care', ‘terminally ill', ‘palliative setting up a syringe driver. available evidence.
care', ‘palliative therapy', ‘drugs', ‘medications', ‘pharmacological', The process of dying in the frail The guideline does not address ‘anticipatory medication', ‘crisis older population is not thought to every symptom that may be medication', ‘pharmacokinetics', be painful (Worcester, 1940). In experienced by frail older people ‘pharmacological', ‘pharmaceutical', the authors' experience, many frail who are dying in care homes and ‘nursing homes', ‘long term care', older people in care homes have does not intend to replace national ‘long term facilities', ‘homes for died without needing an opiate and and local palliative care guidelines the aged', ‘health services for the indeed often required no medication that are currently in use. Specifically, aged', ‘residential care', ‘elderly at all. If a person has had codeine/ the aim of the guideline is to care'. Selected articles were paracetamol for symptom control highlight best practice with regard to examined and relevant citations such as arthritic pain, then often an the pharmaceutical management of obtained. The inclusion criteria equivalent transdermal patch is all three common symptoms that may were: empirical papers, including that is necessary. However, it is stil affect frail older people in their last systematic reviews; expert opinions good practice for all care homes to days of life — terminal restlessness, and clinical guidelines; palliative care ensure that parenteral medication is pain and excessive secretions drug formularies; papers relating available in anticipation of residents (Hockley et al, 2004). It is anticipated specifically to the pharmaceutical developing symptoms in the last that it will be of relevance to GPs, management of terminal restlessness, days of life. Anticipatory medications care home managers and nurses, pain and excessive secretions at are generally administered when district nurses and community the end of life in frail older patient the resident can no longer swallow specialist palliative care teams with a populations (aged 65+ years). (Amass and Allen, 2005). Such remit for care homes. Studies not specifically reporting on medication should be ordered into anticipatory end-of-life medication the care home to ensure that there It is recommended that the for the symptom control of terminal is no delay in responding immediately guideline be used in practice restlessness, pain or excessive to any symptom should it occur. alongside an end-of-life guidance secretions in frail older people were tool, such as the integrated care plan excluded. In addition, reference Anticipatory prescribing for the symptoms
for the last days of life for residents books (i.e. Oxford Textbook of of terminal restlessness, pain and excessive
in care homes (an adapted version Palliative Nursing, Dementia: From secretions in frail older people
of the LCP) (Hockley et al, 2004), Advanced Disease to Bereavement The guideline presented in this the Gold Standards Framework in and the Palliative Care Formulary) article relates to the use of Care Homes minimum care protocol were examined for information on anticipatory medication at the end (Badger et al, 2007; Gold Standards the specific medications highlighted of life in frail older people. It is the Framework, 2009) or the LCP (The within the literature searched. updated version of a previous St Marie Curie Palliative Care Institute Whilst this was not a systematic Christopher's Hospice guideline Liverpool, 2009). It must also be literature review and the data were for anticipatory medication for frail noted that if symptom control is not ranked, the search did reveal older people dying in care homes problematic, further advice should that there is little evidence on this that has been in use since 2010. always be sought.
topic. That which was found was The guideline was updated for the predominantly expert opinion. following reasons: Literature search strategy
8 The medication guidance in the The following electronic databases Liverpool Care Pathway for the were searched on 20 December, The guideline addresses the Dying Patient (LCP) (The Marie 2012, for articles reporting on the management of terminal restlessness, Curie Palliative Care Institute use of anticipatory medication pain and excessive secretions in Liverpool, 2009), whilst generic, in the last days of life for older/ the last days of life, specific to frail was felt to be more orientated frail people: Medline, Cumulative older people. Where there was to specialist palliative care as Index to Nursing and Allied Health no evidence for this population, opposed to the frail older Literature (CINAHL), Embase and the evidence was taken from the populations living in care homes the Cochrane Library. The search cancer literature with caution. The 8 To take account of Kinley and was limited by language (English recommendation for frail older Hockley's (2010) baseline review language) but not by date. The people is to ‘start low and go slow' of 48 nursing home residents' search strategy used free-text words (Travis et al, 2001). End of Life Journal, 2013, Vol 3, No 3 i) Terminal restlessness
Anticipatory medication for terminal restlessness and supporting evidence
Terminal restlessness can occur in the last hours/days of life and may present as fidgeting, tossing Supporting evidence and turning, thrashing or agitation, involuntary muscle jerks, yelling or = Haloperidol is an antipsychotic recommended for moaning (Travis et al, 2001). hyperactive terminal restlessness (Travis et al, 2001) = Avoid completely in residents with Lewy body dementia and/or Parkinson's disease (Pace et al, 2011) 1. Rule out and treat any = Dose: subcutaneous (s/c) haloperidol 0.5 mg reversible causes such as a full (Pace et al, 2011) bladder, constipation, dyspnoea, discomfort, pain or existential = Midazolam is a sedative, anxiolytic and anticonvulsant causes (Travis et al, 2001). (Travis et al, 2001) 2. The treatment for terminal = Dose: s/c midazolam 2.5–5 mg is suitable for short-term restlessness is then sedative sedation (Travis et al, 2001; Pace et al, 2011) (Travis et al, 2001). There are = Diazepam is a sedative, anxiolytic and anticonvulsant three possible options and choice (Travis et al, 2001) should be based on clinical = In an agitated, moribund patient, rectal solution diazepam condition (Table 1). (5–10 mg) may be useful (Twycross and Wilcock, 2011). However, this recommendation is related mainly to cancer patients and not frail older people. Therefore, in this population, a lower dose may be adequate PresentationA frail older person in the last days of life may be unable to express pain. Many will be unconscious or semi- conscious. It is important to consider potential causes of pain and observe Anticipatory medication for pain and supporting evidence
the resident's behaviour and body language (e.g. frowning, grimacing, drawn face, tense, agitated, noisy/fast Supporting evidence breathing). Assessment charts such as the Pain Assessment in Advanced = For mild pain, use a non-opioid. Paracetamol is a centrally Dementia (PAINAD) scale (Warden acting analgesic and has antipyretic properties et al, 2003) or the DOLOPLUS-2 (Watson et al, 2011) scale (Lefebvre-Chapiro, 2001) can = Dose: paracetamol suppositories 0.5–1 g be useful tools. It is important to (maximum 4 g/24 hours) remember that people, especially = Paracetamol can be used even if the patient is taking frail older people, can have more than one type of pain (Prommer and Ficek, 2012). = Morphine is the opioid of choice for both cancer and non-malignant pain (Prommer and Ficek, 2012) = Dose: s/c morphine 1–10 mg PRN (as required) (or 1/6th The analgesic and its dose will of the 24-hour dose). This is the starting rule of thumb to depend upon the resident's previous help titrate PRN analgesia to response (Pace et al, 2011) analgesic use and clinical problems, = +/- paracetamol as an adjuvant (Watson et al, 2011) e.g. many residents will have renal = Continue with patches, although additional PRN medication impairment. Physiological changes in the older person may mean that drugs can have a longer duration Note that patches have slow onset of action and can take of action than would normally be buprenorphine/ 12–24 hours after initial application before a steady state is expected (Chau et al, 2008). In reached (Pace et al, 2011; Watson et al, 2011; Prommer and opioid-naïve residents the lowest opioid dose is recommended (Table 2). It must also be remembered that End of Life Journal, 2013, Vol 3, No 3 pain may not be solely physical, but can have emotional, spiritual and social aspects, which should always be addressed where possible (Kumar Anticipatory medication for secretions and supporting evidence
and Allcock, 2008). With regard to dose-equivalents Supporting evidence for strong opioids (British National Formulary, 2013), readers should Dose: s/c glycopyrronium 200 mcg. Does not cross blood– refer to the European Association Glycopyrronium brain barrier and therefore is less sedative (Pace et al, 2011; for Palliative Care (EAPC) evidence- Watson et al, 2011) based recommendations (Caraceni Dose: s/c hyoscine butylbromide 10–20 mg. Less sedative than et al, 2012), and palliative care hyoscine hydrobromide as does not cross blood–brain barrier medicine information (Twycross (Pace et al, 2011; Watson et al, 2011) and Wilcock, 2011; British National Formulary, 2013). It should be noted that differences of opinion regarding Suction is not usually effective dementia and/or Parkinson's doses remain within the literature. and can be distressing for the disease; or intramuscular (i/m) However, dose ratios should be person (Pace et al, 2011). Whilst a cyclizine 25–50 mg (can be regarded as estimates and be used dry mouth is common at the end painful); or domperidone as guides. In prescribing for frail older of life, the use of anticholinergic suppositories 10 mg people, where there is a range, the medications can potentiate dry 8 Breathlessness: star ting dose lowest dose should be used. The mouth and therefore regular mouth for opioid-naïve residents is individual patient's medical condition care must always be carried out s/c morphine 1.25 mg PRN (as must be taken into consideration (Pace et al, 2011). Some residents required) (4–6 hourly).
every time there is a drug or dose may still continue to have ‘bubbly' change. The dose equivalents for breathing, despite optimal use Conclusion
morphine that St Christopher's of anticholinergic medication. Medications for terminal restlessness, Hospice uses in clinical practice are Repositioning can be effective in pain and excessive secretions need detailed at the end of the guideline. some cases, e.g. positioning the to be anticipated and appropriately patient in a semi-prone position prescribed to ensure distress in iii) Secretions
to encourage drainage or, if the last days of life is prevented the secretions are the result of and a dignified death achieved. pulmonary oedema or gastric reflux, Specialist palliative care has Where secretions have gathered in positioning in an upright or semi- developed guidance for the control the upper airways and oropharynx, recumbent position (Wee and Hillier, of symptoms at the end of life for noisy, moist, ‘bubbly' breathing is 2009; Twycross and Wilcock, 2011). people dying from cancer. However, heard (Pace et al, 2011; Watson et al, palliative care principles relating to 2011). This condition is not thought Residents' relatives/loved ones people dying from cancer need to to be distressing for the patient need to be reassured that the be modified for people dying from but can be unsettling for relatives secretions are not thought to non-malignant disease and, in (Watson et al, 2011). Excessive distress the dying person (Wee et al, particular, frail older people dying secretions usually occur when 2006a,b; Pace et al, 2011). from multiple morbidities. EOLJ
dying patients are unconscious or too weak to expectorate and are A detailed copy of our medication guidance considered a clinical indicator that Although not the remit of this set can be found at: http://www.stchristophers.
death may soon occur, i.e. hours or of guidelines, other less common days (Wee and Hillier, 2009). symptoms for frail older people at the end of life include nausea and vomiting and breathlessness. St The guideline was developed in Treatment needs to commence early, Christopher's Hospice best-practice association with nurse managers i.e. as soon as there is any sign that advice with regard to anticipatory from participating care homes, secretions are occurring. It is easier prescribing for these symptoms is a local Macmillan GP advisor, to stop secretions from forming and the pharmacist and medical than to remove those that have 8 Nausea and vomiting: team at St Christopher's Hospice, developed. There are two possible subcutaneous (s/c) haloperidol London. It was updated in January options and choice should be based 0.5 mg (avoid completely in 2013 and review is planned for on clinical condition (Table 3). residents with Lewy body January 2015.
End of Life Journal, 2013, Vol 3, No 3 Conflicts of interest: None declared
of Care for all People Nearing the End Rashidi NM, Zordan RD, Flynn E, of Life. The National GSF Centre, Philip JA (2011) The care of the Funding: No funding was sought
very old in the last three days of life. to support the development Journal of Palliative Medicine 14(12):
of these guidelines Hockley J, Clark D, eds (2002) Palliative Care for Older People in Care Saavedra Muñoz G, Barreto Martín MP Acknowledgements: We would like
Homes. Open University Press, Milton (2008) Frail elderly and palliative care. to thank Dr Victor Pace, Dr Nigel Psicothema 20(4): 571–6
Sykes, Dr Emma Hall and Dr Louise Hockley J, Watson J, Dewar B (2004) Gibbs (medical consultants) and Bridges Initiative Project Phase 2: The Marie Curie Palliative Care Margaret Gibbs (pharmacist) at Developing Quality End of life Care Institute Liverpool (2009) The St Christopher's Hospice, London, in Eight Independent Nursing Homes Liverpool Care Pathway for the Dying for their consultation in the Through the Implementation of the Patient (LCP): Core Documentation. process of putting together the Adapted Liverpool Care Pathway for The Marie Curie Palliative Care updated guideline and the guidance the Last Days of Life. St Columba's Institute Liverpool Hospice, Edinburgh Travis SS, Conway J, Daly M, Larsen Kinley J, Hockley J (2010) A baseline P (2001) Terminal restlessness in the review of medication provided to nursing facility: assessment, palliation, older people in nursing care homes and symptom management. Geriatric Amass C, Allen M (2005) How a ‘just in the last month of life. International Nursing 22(6): 308–12
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Aged, the Dying and the Dead. 2nd edn. Framework to Enable a Gold Standard Springfield, Baltimore, Ill End of Life Journal, 2013, Vol 3, No 3 GUIDE TO DOSE EQUIVALENTS FOR MORPHINE
Equivalent doses for strong opioids remain an area of controversy. The table below shows the equivalents used by St Christopher's Hospice in clinical practice with no known adverse outcomes. It must be stressed that all ratios are estimates and are to be used only as a guide. Also, in frail older people, where there is a range, the lowest dose should be used to start and the individual patient's medical condition taken into consideration every time a drug change is made Approximate equivalent oral Approximate equivalent morphine injection
morphine (po = by mouth) (s/c = subcutaneous) 2.5 mg 4-hourly po 1.25 mg 4-hourly s/c 7.5 mg 4-hourly po 2.5–5 mg 4-hourly s/c Co-codamol 30/500 5–10 mg 4-hourly po 2.5 mg 4-hourly s/c N.B. These doses are less 10 mg 4-hourly po 5 mg 4-hourly s/c than the contents of one 5–10 mg 4-hourly po 2.5–5 mg 4-hourly s/c ampoule (10 mg in 1 ml) Oxycodone (OxyNorm) 5 mg 4–6 hourly 10 mg 4-hourly po 5 mg 4-hourly s/c Oxycodone SR (OxyContin) 10 mg 4-hourly po 5 mg 4-hourly s/c Patches (check British National Formulary (BNF) for frequency of patch changes, as it varies between the three families of patch)Buprenorphine (BuTrans) Codeine 8 mg 4-hourly po N.B. Dose too low Change patch every 7 days: dose Codeine 15 mg 4-hourly po to be compared with increase not less than every 3 days Codeine 30 mg 4-hourly po N.B. In end-of-life care it is generally best to continue Buprenorphine (Transtec) 5–10 mg morphine 4-hourly po 2.5–5 mg 4-hourly s/c an existing analgesic patch Change patch twice a week 10–15 mg morphine 4-hourly po 5–7.5 mg 4-hourly s/c and if in pain additionally 15–20 mg morphine 4-hourly po 7.5–10 mg 4-hourly s/c give the appropriate PRN dose of codeine Fentanyl (e.g. Durogesic) 2.5–5 mg morphine 4-hourly po 2.5 mg 4-hourly s/c or morphine (the same as a 4-hourly dose) Change patch every 72 hours 5–10 mg morphine 4-hourly po 2.5–5 mg 4-hourly s/c 15–20 mg morphine 4-hourly po 7.5–10 mg 4-hourly s/c 20–30 mg morphine 4-hourly po 10–15 mg 4-hourly s/c Higher dosages of fentanyl exist — but if these are required specialist palliative care referral is indicated QDS = four times a day; BD = twice a day; PRN = as required End of Life Journal, 2013, Vol 3, No 3

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