Download MANAGING MEDICINES IN THE LAST YEARS OF LIFE

Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
Managing Medicines in the Last Years of Life
Decision Support Guidance for Health
Professionals in North East London
September 2014
Commissioned by Tower Hamlets Clinical
Commissioning Group
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
St Joseph’s Hospice were commissioned to produce this guidance by the
Tower Hamlets Clinical Commissioning Group
Contributors
Many thanks go to all those who have contributed to the guidance as either authors or reviewers,
listed below in alphabetical order:
Jane Butler
Dr Tim Crocker-Buque
Dr Kate Crossland
Jaryn Go
Dr Abigail Wright
Prof Magdi Yaqoob
Nurse Consultant for Heart Failure
Queen Mary’s University of London (QMUL)
Staff Grade, St Joseph’s Hospice
Clinical Nurse Specialist Renal Supportive & Palliative Care Service
Barts Health
Staff Grade, St Joseph’s Hospice
Principal Clinical Lead, Tower Hamlets CCG
COPD Nurse Consultant, Homerton University Hospital NHS
Foundation Trust
Nurse Consultant, St Joseph’s Hospice
GP and Clinical Lead Medicines THCCG
Consultant in Palliative Medicine, St Joseph’s Hospice
QMUL
Consultant Neurologist, Barts MND Centre, Barts Health NHS Trust
GP Clinical Lead Last Years of Life, NHS Tower Hamlets Clinical
Commissioning Group
Consultant in Palliative Medicine, St Joseph’s Hospice
Clinical Lead for Dementia, Frail Elderly and Last Years, Months and
Days of Life, Newham CCG
Consultant in Palliative Medicine
Professor in Renal Medicine, Barts Health
Editor
Dr Anjali Mullick
Clinical Lead, St Joseph’s Hospice
Dr Ellie Hitchman
Dr Isabel Hodkinson
Matthew Hodson
Diane Laverty,
Dr Anna Eleri Livingstone
Dr Jonathon Martin.
Professor Allyson Pollock
Dr Aleksandar Radunovic
Dr Liliana Risi
Dr Hattie Roebuck
Dr Clare Thormod
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Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
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CONTENTS:
Introduction:
Managing Medication in the Last Years,
Months and Days of Life
Background
3
4-7
Top Tips:
Frail Elderly
8
Dementia
11
Diabetes
15
Chronic obstructive pulmonary disease
19
Heart Failure
25
Chronic Kidney Disease
28
Liver Disease
33
Cancer
36
Progressive longterm neurological conditions
40
The last days of life
47
Appendices
Useful resources
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Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
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Managing Medication in the Last Years, Months and Days of Life:
Local Consensus Guidance for Professionals
Can this guidance help you and your patients?
This guidance may be helpful if:




You are a health professional in the acute or primary care sector in North East London
caring for a patient suspected to be in the last years, months or days of their life due to
progressive incurable illness.
You are directly involved in prescribing for that patient or giving advice about prescribing.
The patient’s clinical condition is changing and you are unsure about the current benefit,
burdens and risks of their medication regime.
The patient has queries or concerns about their medication regime, including issues
around side effects or medication burden.
Aim of Guidance
To provide a practical approach to rationalising medications in the last years, months or days of life
in order to identify medications that may provide clinical benefit and avoid unnecessary medicines
that do not or where the balance of risk outweighs benefit.
The expectation is that this guidance is implemented within a context of working in partnership
with the patient and their family, with clear and open communication with the patient and their
family and across the multidisciplinary team.
We would encourage the use of Coordinate my Care to communicate relevant decisions about
medications in the section on ‘Ceiling of treatment’.
What this Guidance Contains



Background of the importance of appropriate prescribing in this patient group.
Factors to consider when prescribing for those in the last year of life
Top Tips for several diseases or situation specific categories written by local clinicians,
including:
o
o
o
o
o
o
o
o
o
o

Frail elderly
Dementia
Diabetes
Respiratory disease
Heart Failure
Chronic kidney disease
Liver disease
Progressive long term neurological conditions
Cancer
The last days of life
Signposting to relevant local and national guidance where available
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Background
Case Study
The following case study gives an example where decision making around medications may need
to take place for a lady likely to be in her last year of life


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90 year old Jane lives with her 68 year old daughter. Jane’s best days are when she is not
breathless from her COPD, when her diabetes is well controlled and when she is not
agitated from her dementia and depression (Her other diagnoses include Hypertension,
raised cholesterol and she is high risk for fracture of the femur on Dexa Scan)
Jane has had multiple episodes in hospital in the year before she dies but no clear
medication review is done or documentation sent to the GP
In the last year of her life, eight different GPs were involved in her care – but her records
show no documentation of her mental state or ability to make an advanced care plan
(neither in the community or nor during her stay in hospital)
In the last year of life she is on 14 different medicines listed below
Metformin
Glipizide
Salbutamol
Tiotropium [Spiriva]
Alendronate
Furosemide
Aspirin
Citalopram
Simvastatin
Amlodipine
Paracetamol
Quetiapine
Trazadone
Omeprazole
500mg bd
5mg od
2 puffs prn
2 puffs daily
70mg weekly
20mg od
75mg od
20mg od
40mg on
5mg od
1g qid
25mg am / nocte and 12.5mg pm
25mg am, 30mg nocte
20mg od
How might you approach a medication review for this lady?
What further information might help you with this?
There is a wide body of evidence to show that taking multiple medications (polypharmacy) is
common in older people and that this can cause adverse drug events and adverse health
outcomes 1,2,3. Although not all people in the last years, months and days of life are elderly, a
significant number of them are. Whilst there is limited evidence for younger patients with a short
life expectancy, it is possible that similar risk of adverse drug events and adverse health outcomes
also applies. In addition where there is short life expectancy the balance between quality of life and
the burden of treatment may well shift.
This guidance aims to enable healthcare professionals to identify appropriate medications that are
likely to give patients genuine benefit in terms of quality or length of life, and avoiding the use of
futile medications or those which are causing more harm than good.
Individualised care is paramount. This guidance does not aim to give ‘dos and don’ts’, but instead
provides professionals with a set of principles that can be applied in a wide variety of
circumstances. Shared decision making with patients is also essential, taking into account the
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patient’s goals, beliefs and values. Treatment targets in the palliative care population can include
life prolongation, prevention of morbidity and mortality, maintenance of current state or function
and treatment of acute illness4
PLEASE NOTE: This guidance is designed to cover management of medication only. Whilst some
sections refer to potential non pharmacological strategies for symptom management, practitioners
will need to consider these alongside the medication guidance outlined contained here.
Why might you need to rationalise the medication of a patient in the last years, months or
days of life?

Patients in the last years, months or days of life may have no opportunity to benefit from
medications that require several years to achieve a clinical benefit (e.g. statins to lower
cholesterol). They may have time to benefit from medications aimed at symptom relief such
as analgesics, even if close to death. 4,5

For people with comorbidities, both the comorbidities and the life limiting illness change
over time and therefore medication needs regular review.6 For example, progressive
illness can lead to changes in metabolism that may have an impact on drug metabolism 7

Patients can be vulnerable to the ‘prescribing cascade’, where an adverse drug reaction is
misinterpreted as a new medical condition and a new drug started, further increasing the
risk of adverse drug effects. The risk of a serious adverse drug interaction is greater than
80% when more than seven drugs are taken 4,6,8

Harm caused by inappropriate prescribing can lead to significant cost and resource
implications for the NHS as a whole as a result of unnecessary hospital admission.
According to the National Prescribing Centre (NPC), in 2001, medication problems were
implicated in 5-17% of hospital admissions, with similar proportions of older people
experiencing adverse drug reactions. The estimated cost of medication errors at that time
equated to £500 million a year.1
Potential benefits for you and your patients:
In general terms, according to the National Prescribing Centre (NPC)9, medication review can have
the following benefits:
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Improving the current and future management of the patient’s medical condition
Opportunity to develop a shared understanding between the patient and practitioner about
medicines and their role in the patient’s management
Improved health outcomes through optimal medicines use
Reduction in adverse events related to medicines
Opportunity to empower patient and carers to be actively involved in their care and
treatment through the clarification of the goals of care
Reduction in unwanted or unused medicines
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Challenges in reviewing medication
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Clinical care frequently involves balancing the recommendations of multiple single disease
guidelines in people who have different conditions 10which can apply to patients with
palliative care needs.
Palliative care patients are often excluded from clinical trials, making applying evidence
difficult to this population.
Predicting rate of deterioration and prognosis may be difficult, particularly when deciding
whether to stop a medication with a long term benefit.
Undertaking a medication review
Given the potential benefits of rationalising medications for patients in the last years, months or
days of life, it is helpful to undertake a medication review
Who should do it?
It can be undertaken by any prescriber involved in the patient’s care. Communication and
coordination of care is essential and relevant professionals should be made aware if significant
changes to medication are made.
Any healthcare professional can suggest a medication review.
Approach to review
Patients should be central to the process. Goals of care6,7, both generally and with respect to
medications should be transparent and negotiated with consideration to personal, spiritual,
religious, and cultural beliefs whilst maintaining autonomy, self-worth, and social participation11,12
and communicated well across provider boundaries. With respect to goal setting, shared agenda
setting and goal follow up are the basis of ‘coproduction’13.
When should it be done?
Triggers for review:
- Change in terminal or comorbid condition 5
- Suspected or actual adverse drug reaction
- Burden now outweighing the benefit
- Patient or carer initiating review
- Routine review
How should it be done?
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initiate discussion with patient and families- may take place as one off or over time7
use the medication appropriateness index or similar tool to guide the review 4,5,14,15
when stopping medications taper gradually and monitor for withdrawal reactions 11
add in drugs that may be necessary e.g. for symptom benefit
frequent review and monitoring, 7,14 of impact of changes made and tailored to a patients
changing condition and treatment goals
The medication appropriateness index 10
This is a 10 question tool that can identify potentially inappropriate elements of prescribing4,15
1. Is there an indication for the drug?
2. Is the medication effective for the condition?
3. Is the dosage correct?
4. Are the directions correct?
5. Are the directions practical?
6. Are there clinically significant drug-drug interactions?
7. Are there clinically significant drug-disease/condition interactions?
8. Is there unnecessary duplication with other drugs?
9. Is the duration of therapy acceptable?
10. Is the drug the least expensive alternative compared with others of equal usefulness?
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The NHS Scotland Polypharmacy Guide 20125 has a similar framework with the following
additions:
 Is the medicine preventing rapid symptomatic deterioration?
 Is the medicine fulfilling an essential replacement function?
 Do you have the informed agreement of the patient/carer/welfare proxy?
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References:
1. National Prescribing Centre and National Primary Care Research and Development Centre
Modernising Medicines Management- A Guide to Achieving Benefits for Patients, Professionals and the
NHS (Book 1) 2002 cited on 23.09.12 available on
http://www.npc.nhs.uk/developing_systems/intro/resources/library_good_practice_guide_mmmbook
1_2002.pdf
2. Audit Commission A Spoonful of Sugar: Medicines Management in NHS Hospitals 2001 cited on
23.09.13 available from
http://archive.auditcommission.gov.uk/auditcommission/sitecollectiondocuments/AuditCommissionR
eports/NationalStudies/nrspoonfulsugar.pdf
3. Department of Health Medicines and Older People National Service Framework: Implementing
Medicines-Related Aspects of the NSF for Older People 2001 cited on 23.09.13 available from
http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_d
h/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4067247.pdf
4. Holmes H, Hayley DC, Alexander GC, Sachs GA Reconsidering Medication Appropriateness for Patients
Late in Life Arch Intern Med 2006;166:605-609
5. NHS Scotland Polypharmacy Guidance October 2012 cited on 23.09.13 available from
http://www.central.knowledge.scot.nhs.uk/upload/Polypharmacy%20full%20guidance%20v2.pdf
6. Stevenson J et al Managing Comorbidities in Patients at the End of Life BMJ 2004;329:909-12
7. O’Brien P Withdrawing Medications: Managing Medical Comorbidities Near the End of Life Can Fam
Physician 57(3):304-307
8. Rochon PA Gurwitz JH Optimising Drug Treatment for Elderly People: The Prescribing Cascade BMJ
1997;315:1096
9. National Prescribing Centre A Guide to Medication Review 2008 cited on 23.09.13 available from
http://www.npc.nhs.uk/review_medicines/intro/resources/agtmr_web1.pdf
10. Barnett K et al Epidemiology of Multimorbidity and Implications for Healthcare, Research, and
Medical Education: a cross sectional study Lancet 2012 DOI:10.1016.S0140-6736(12)60240-2
11. Rehabilitation in end of life management. Curr Opin Support Palliat Care 2010
www.ncbi.nlm.nih.gov/pubmed/20479642
12. Cumulative complexity: a functional, patient-centered model of patient complexity can improve
research and practice. J Clin Epidemiol. 2012. http://www.ncbi.nlm.nih.gov/pubmed/22910536
13. Coproduction of health and wellbeing outcomes: the new paradigm for effective health and social
care. March 2013 http://www.opm.co.uk/resources/coproduction-of-health-and-wellbeing-outcomesthe-new-paradigm-for-effective-health-and-social-care/
14. Steinman MA Hanlon JT Managing Medications in Clinically Complex Elders-There’s Got to be a
Happy Medium JAMA 2010 304(14) 1592-1601
15.
Hanlon, JT, Schmader KE, Samsa GP et al A Method for Assessing Drug Therapy appropriateness J
Clin Epidemiol 1992;45:1045-1051
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Top Tips: Frail Elderly Patients
 What are the common or significant health and symptom burdens for frail elderly
patients with in the last years, months and days of life?
In this guidance the term ‘frail elderly’ is used to mean older people with complex needs arising
from multiple comorbidities and decline in physical function due to the aging process
 memory loss
 reduced mobility with risk of falls, sometimes becoming bed-bound
 weight loss
 reduced dietary intake/progressive difficulty with chewing/ swallowing risking aspiration or
choking
 incontinence
 pressure sores
 infections; chest, bladder
 Types of medications commonly used in the frail elderly
Medication Group
Benefits
Anticoagulants:
Minimise risk of vascular
Aspirin/clopidogrel/warfarin events
Anti-hypertensives e.g. ACEI Minimise risk of vascular
events.
Statins
Hypoglycaemic agents
Bisphosphonates and
Calcium/ Vat D
Anti-depressant e.g. SSRI,
TCA
Heart failure medication
(see section 8 of this
guidance for more details)
Minimise risk of vascular
events long-term
Avoid symptomatic
hyperglycaemia
Reduce risk of fractures
Improve mood and quality
of life
Control of heart failure
symptoms
Risks/Burdens
Bleeding/gastric irritation
Monitoring INR if on warfarin
Symptomatic hypotension, electrolyte
disturbance requiring monitoring – may
need to consider dose reduction
Tablet burden
Hypoglycaemia particularly with reduced
oral intake
Gastric side effects, hypocalcaemia
and tablet burden
Interactions, (postural instability and
falls with TCAs)
Symptomatic hypotension, electrolyte
disturbance requiring monitoring – may
need to consider dose reduction
 Medications that may need stopping as overall condition deteriorates
Anti-coagulants – monitoring levels burdensome and invasive, increased risk of bleeding
Anti-hypertensives – as weight reduces, anti-hypertensives may no longer be necessary
Lipid lowering agents – tablet burden and aimed at modifying long term risk of further vascular
events
Hypo-glycaemic agents – aim should be keeping patient asymptomatic rather than trying to prevent
microvascular complications. Poor appetite and limited oral intake risks hypoglycaemia. Avoid oral
sulphonylureas if food intake is poor variable. (For further details on diabetes management see
section 9 of this guidance)
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Diuretics – renal impairment common in frail, older patients with reduced oral intake – risk of
toxicity/increased toxicity from other medication
Bisphosphonates – need to balance long term fracture prevention with risk of GI side effects
Anti-depressants – need to balance beneficial effect on mood with side effects such as
hypotension
Heart failure medication – consider stopping those which are solely for long term survival benefit ,
e.g. ACE inhibitors but continuing those which offer symptomatic benefit e.g. diuretics (see section
8)
 Medications that may need continuing as overall condition deteriorates
Main consideration will be route of administration if oral route inconsistent-consider other
routes such as transdermal or rectal
Analgesics
Laxatives/bowel intervention
Memantine if psycho-behavioural symptoms
 Medications that may need introducing as overall condition deteriorates
Main consideration will be route of administration if oral route inconsistent-consider other routes
such as transdermal or rectal
Pain
Buprenorphine patches, PR paracetamol/ diclofenac, if opioid naïve
and opioids required for acute pain – start low and go slow e.g.
diamorphine 1.25mg subcut PRN.
Breathlessness, anxiety or Lorazepam 0.5mg sublingual PRN (max 4mg in 24 hours),
agitation
midazolam 1.25mg subcut PRN
Respiratory secretions
Glycopyrronium 0.2-0.4mg subcut PRN, max 2.4mg in 24 hours
Nausea and vomiting
(depends on aetiology) metoclopramide 10mg subcut PRN (avoid in
Parkinsonism/
Parkinson’s
disease/
concomitant
bowel
obstruction), Cyclizine 25-50mg subcut PRN, Domperidone
suppositories 10mg PRN.
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Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
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 Key references:
1. Preventative medication use among persons with limited life expectancy. Maddison et al.
Progress in Palliative Care vol 19 no 1, 2011
 Useful resources
http://www.dementiapartnerships.org.uk/prescribing/improving-prescribing-ofantipsychotics/prescribing-guidelines/
http://www.rcpsych.ac.uk/pdf/Dementia%20Compromised_swallowing_guide_July_2010.pdf
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Top Tips: Patients with Dementia
 What are the common or significant health and symptom burdens for patients with
dementia in the last years, months and days of life?
 memory loss
 increasing problems understanding what is being said to them and what is going on around
them
 progressive loss of speech
 reduced mobility with risk of falls, sometimes becoming bed-bound
 weight loss
 poor initiation of eating/drinking requiring prompting or progressive difficulty with chewing/
swallowing risking aspiration or choking
 incontinence
 psycho-behavioural problems; agitation, hallucinations
 pressure sores
 infections; chest, bladder
 Seizures
 Types of medications commonly used in dementia disease
Non pharmacological approaches to managing dementia must be considered. There is emerging
evidence highlighting the potential harms of medications such as anti-psychotics. Please see the
NICE guidance to dementia revised in 20116
Medication Group
Anti-psychotics
(e.g. risperidone)
Indications
Benefits
dementiarelated
behavioural
disturbances –
(up to 6
weeks)
treatment of
persistent
aggression in
moderate to
severe
Alzheimer’s
dementia
unresponsive to
nonpharmacological
approaches
Minimise risk of
vascular events
Aspirin/anti-coagulation
Vascular
dementia
ACE Inhibitors or
Angiotensin receptor
blockers
Vascular
dementia
Statins
Vascular
dementia
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Minimise risk of
vascular events.
Manage cardiac
failure or
hypertension
Minimise risk of
future vascular
events
Risks and Burdens
increased risk of falls, stroke and a
small increased risk of death
Can cause neuroleptic crisis in Lewy
body dementia
Can be sedating
Bleeding/gastric irritation
Monitoring INR if on warfarin
Symptomatic hypotension, electrolyte
disturbance requiring monitoring –
may need to consider dose reduction
Tablet burden
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
review December 2014
Medication Group
Indications
Benefits
Risks and Burdens
Donepezil/memantine*/ Alzheimer’s
Rivastigmine/
dementia
galantamine
MMSE> 10
(*particularly
useful for
psychobehavioural
symptoms)
Hypoglycaemic agents
diabetes
some evidence
of slower
decline in
function and
cognition
Minimal tablet burden-most
preparations only 1 tablet od
Avoid
symptomatic
hyperglycaemia
Hypoglycaemia particularly with
reduced oral intake
Anti-epileptic
Seizure
control/ mood
lability
Prevent seizure
Interactions with other medication and
tablet burden
May need monitoring of blood test
depending on particular drug
Anti-depressant e.g.
SSRI
Low mood
Improve mood
and quality of
life
Interactions, postural instability and
falls
Risk of sedation- SSRIs less so than
TCAs
Risk of nausea and vomiting
Anti-muscarinic effects of TCAs- dry
mouth, blurred vision, arrhythmias and
urinary retention
Withdrawal syndrome if SSRIs stopped
abruptly
 Medications that may need stopping as illness progresses
Anti-hypertensives – consider tablet burden and if patient has enough time to benefit from
modifying long term risk of further vascular events
Anti-coagulants – monitoring levels burdensome and invasive, balance risk of bleeding with
prevention of stroke, venous emboli etc.
Lipid lowering agents – consider tablet burden and if patient has enough time to benefit from
modifying long term risk of further vascular events
Diuretics – renal impairment common in frail, older patients with reduced oral intake – risk of
toxicity/increased toxicity from other medication
Hypo-glycaemic agents – aim should be keeping patient asymptomatic rather than trying to prevent
microvascular complications. Poor appetite and limited oral intake risks hypoglycaemia. Avoid oral
sulphonylureas if food intake is poor or variable.
 Medications that may need continuing as illness progresses
Main consideration will be route of administration if oral route inconsistent-consider other routes
such as transdermal or rectal:
Analgesics
Anti-epileptics
Laxatives/PR bowel intervention
Memantine if psycho-behavioural symptoms
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 Medications that may need introducing as illness progresses
Main consideration will be route of administration if the oral route is inconsistent - consider other
routes such as transdermal or rectal
Pain
Breathlessness or anxiety
Restlessness/ Agitation
Respiratory secretions
Nausea and vomiting
Seizure management
Buprenorphine patches, PR paracetamol/ diclofenac, if opioid naïve
and opioids required for acute pain – start low and go slow e.g.
diamorphine 1.25mg subcut PRN.
Lorazepam 0.5mg sublingual PRN (max 4mg in 24 hours),
midazolam 1.25mg subcut PRN
Risperidone 0.25-1 mg per day (only licensed anti-psychotic for this
indication, risks of stroke) Olanzapine 2.5-5mg per day (both have
lower risk of extra-pyramidal side effects)
Glycopyrronium 0.2-0.4mg subcut PRN, max 2.4mg in 24 hours
(depends on aetiology) metoclopramide 10mg subcut PRN (avoid in
Parkinsonism/
Parkinson’s
disease/
concomitant
bowel
obstruction), cyclizine 25-50mg subcut PRN, Domperidone
suppositories 10mg PRN.
Buccal midazolam 10mg/1ml PRN
 Refer to end of life section for anticipatory prescribing
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 Key references:
1. The use of antipsychotic medication for people with dementia: Time for action. Sube
Banerjee. DOH Nov 2009
2. Donepezil and Memantine for Moderate-to-Severe Alzheimer's Disease. Howard R et al. The
New England Journal of Medicine 2012; 366:893-903.
3. Withdrawal versus continuation of chronic antipsychotic drugs for behavioural and
psychological symptoms in older people with dementia. Declercq T et al. Cochrane
Database Syst Rev. 2013 Mar 28;3.
4. Treatments and Prescriptions in Advanced Dementia Patients Residing in Long-Term Care
Institutions and at Home. Journal of Palliative medicine. Toscani F et al. Volume 16,
Number 1, 2013
5. Preventative medication use among persons with limited life expectancy. Maddison et al.
Progress in palliative care vol 19 no 1, 2011
6. National Institute of Clinical Excellence (NICE) and Social Care Institute for Excellence
(SCIE) Clinical Guideline 42 Quick Reference Guide. Dementia. London 2006 revised 2011
http://www.nice.org.uk/nicemedia/live/10998/30317/30317.pdf accessed 22.10.13
 Useful resources
http://www.dementiapartnerships.org.uk/prescribing/improving-prescribing-ofantipsychotics/prescribing-guidelines/
http://www.rcpsych.ac.uk/pdf/Dementia%20Compromised_swallowing_guide_July_ 2010.pdf
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Top Tips: Diabetes management for patients in the last year of life
 What are the common or significant health and symptom burdens of diabetes in
patients in the last year, months and days of life?
To note, patients with diabetes may have comorbidities requiring other medications. This
section focuses purely on diabetic management alone. Please refer to other sections as
necessary
 Metabolic decompensation and diabetes related emergencies
 Medication burden
 Restrictive dietary rules impacting quality of life
 Burden of blood sugar testing
 Goals of treatment
 Provision of a painless and symptom-free death
 Tailor glucose-lowering therapy to minimise adverse effects of diabetic medication
 Avoid metabolic de-compensation and diabetes-related emergencies:
o frequent and unnecessary hypoglycaemia
o diabetic ketoacidosis
o hyperosmolar hyperglycaemic state
o persistent symptomatic hyperglycaemia
 Avoidance of foot complications in frail, bed-bound patients with diabetes
 Avoidance of symptomatic clinical dehydration
 Provision of an appropriate level of intervention according to stage of illness, symptom
profile, and respect for dignity
 Supporting and maintaining the empowerment of the individual patient (in their diabetes
self-management) and carers to the last possible stage
Practical Measures:
1. Keep pre-meal glucose between 6-15mmol/L (minimise the risk of hypoglycaemia and
lessen the risk of development of metabolic decompensation)
2. Simplify regimes as much as possible. Insulin alone may be a simpler option than a
combination of tablets and insulin. Aim for a once daily insulin – commencing with 75%
total previous daily dose of insulin.
3. Enable patient choice over food – adjusting medication may be preferable to limiting
the diet but therapy will have to match small frequent meals.
4. Minimise invasive blood glucose monitoring
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 Types of medications commonly used in diabetes
Medication Group
Long acting insulin e.g.
Glargine, detemir
Benefits
Risks/Burdens
Avoid symptomatic
hyperglycaemia
Hypoglycaemia, Injections and need for BM
monitoring
Sulphonylureas e.g.
glibenclamide
Avoid symptomatic
hyperglycaemia
Metformin
Avoid symptomatic
hyperglycaemia
Hypoglycaemia as long acting and may not be
suitable if small meals are being taken.
Tablet burden
GI upset, acidosis, worsen appetite. Stop if
eGFR<30
Tablet burden
Intermediate acting
insulin e.g. Isophane
insulins
Short acting insulin e.g.
novorapid, actrapid
Gliptins e.g. sitagliptin
Pioglitazone
GLP 1 analogues e.g.
exenatide
Insulin sectretagogues
e.g. repaglinide
Hypostop
Glucagon
Avoid symptomatic
hyperglycaemia
Can be useful for
patients with NIDDM
taking regular small
meals
Short term resolution of
hypoglycaemia
Tablet burden
Administration difficulties
May not be effective in people with liver failure
IM Injection
 Reducing appetite



Avoidance of dietary glucose may no longer be desirable
Best to avoid sulphonylureas if a type 2 diabetes patient only eating small meals,
consider repaglinide/nateglinide with dose adjusted according to BM
Be aware of increased risk of hypoglycaemia particularly in those with weight loss,
renal deterioration, liver impairment
 Loss of oral route


Type1 or Type2 insulin treated diabetes- a small dose of basal long acting insulin is
usually required
Type 2 not on insulin-check BM only if patient uncomfortable and administer insulin
only if BM >20 and patient symptomatic. If persistently symptomatic or raised BMs
then consider introducing a small dose of long acting insulin.
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 Managing the effects of steroids (prednisolone/dexamethasone)
Short courses<3 days may only require closer BM monitoring
Longer courses may require adjustment of glucose lowering therapy
Once daily steroids in the morning tend to cause a late afternoon or early evening rise in
glucose level which can be managed by a morning sulphonylurea e.g. gliclazide or morning
isophane (long acting) insulin e.g. insulatard or Humulin I.
Twice daily steroids – consider twice daily gliclazide or isophane insulin but risk of morning
hypoglycaemia. If hypoglycaemia is a concern once daily insulin glargine given in the morning
may be safer.
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 Key References:
1. Preventative medication use among persons with limited life expectancy. Maddison et al.
Progress in palliative care vol 19 no 1, 2011
2. End of Life Diabetes Care. A Strategy Document Commissioned by Diabetes UK July 2012
 Useful resources
http://www.leicestershirediabetes.org.uk/671.html
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Top Tips: patients with Chronic Obstructive Pulmonary Disease (COPD)
 Background
Two important factors to note at the outset:
 Prognostication in COPD is frequently uncertain.
 There is a degree of overlap between the active treatment phase of the illness and the
palliative phase (if such a phase is ever identified), but NICE guidelines1 are clear that
palliative approaches to symptom management should not be relied upon unless usual
medical approaches have been optimised. This document assumes that optimised care
(medications, pulmonary rehabilitation, education) has or is being given, where possible, and
that refractory breathlessness can only be diagnosed where other causes (e.g. pulmonary
embolus, infection) have been excluded.
The Gold Standards Framework prognostic indicator guidance for COPD2 has not been formally
validated but is in common use and may help to guide clinicians about which patients may be
nearing the end of life.3
Breathlessness Management in the Last Years and Months of Life
Treatment for severe breathlessness should primarily focus on non-pharmacological approaches,
including relaxation techniques, breathing control, use of a handheld fan, functional exercise,
provision of walking aids, psychological treatments and education.4,5 See information leaflet on
non-pharmacological breathlessness management.
Palliative medication (opioids, benzodiazepines) play a larger role when the patient is profoundly
breathless at rest, or is otherwise unable to engage in non-pharmacological techniques. You will
need to carefully balance the potential benefits, burdens and risks of any medication before
prescribing it.6 For example, bear in mind that benzodiazepines are potentially addictive and have
important side effects.
Communication with the patient, their family and important others (with permission), and between
professionals is the cornerstone of good quality care, including helping patients and carers know
what to expect as the disease progresses. Advance care planning may be appropriate for some
patients, as may spiritual care.
Time
frame
Last
years
Symptom
Breathlessness
Page 19 of 53
Intervention
Rehabilitative,
functional and
psychological
approaches
Details
Including pulmonary rehabilitation,
functional exercise, relaxation techniques,
breathing control, use of a handheld fan,
provision of walking aids, psychological
treatments and education
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
review December 2014
Time
frame
Last
months
Last
months
Symptom
Intervention
Details
Breathlessness
(only when
intractable and
warranted due to
severity)
Opioids*
Start at 1mg oral morphine solution once
per day, increasing by 1mg steps on a
weekly basis (i.e. 1mg BD, then 2mg
mane and 1mg nocte, then 2mg BD etc).
Convert to slow release oral morphine
when possible. Stop titration when the
patient experiences significant relief of
breathlessness.
Withdraw opioids if they are of no benefit.
Prescribe anti-emetics and laxatives.
Monitor for side effects and symptoms of
carbon dioxide retention.
It is unusual to go above a total of 10mg
oral morphine per day.
See reference (7) for further details.
Breathlessness
(when intractable
and especially when
in association with
panic attacks which
cannot be managed
using nonpharmacological
strategies)
Benzodiazepines* Start oral lorazepam† 0.5mg sublingually
PRN up to TDS.
This may be increased to maximum 4mg
per day.
Alternatively oral diazepam 2-5mg
(swallowed, not sublingually) nocte up to
TDS; may be given regularly.
*The recommendations above are using medications for unlicensed indications and/or by
unlicensed routes.
†Not all makes of lorazepam will dissolve sublingually; those made by Genus Pharmaceuticals do.
Dying of COPD
Clinical experience indicates that most people who die primarily of COPD do so in one or both of
two main ways:
(1)
They do not recover from an exacerbation of their COPD; this is usually unpredictable and a
person dying in this manner will often die while active attempts to treat the exacerbation
are in progress; given the unpredictability of survival following any given exacerbation this
is usually appropriate.
(2)
They deteriorate (i.e. increasing symptoms and decreasing function) over a period of time
to the point of death. This second mode of death is more predictable, in that there are
signs of deterioration over a period of time (see below), although judging when the moment
of death is near remains difficult. An exacerbation on the background of such prolonged
deterioration may prove to be the terminal event.
A third, very common, situation is where a patient has COPD, but dies of a co-morbidity.
What are the common or significant health and symptom burdens for patients with “end
stage” COPD in the last years, months and days of life?
It is not always clear when a person with COPD has ‘transitioned’ into the last months or days of
life and some research indicates that even the most severely affected patients (in terms of disease
parameters such as FEV1 and patient factors such as BMI) have a 50% chance of living more than
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three years.8 Therefore the best approach to symptom management is one in which there is close
collaborative working between primary care, respiratory medicine and, where needed, palliative
care.
Common symptoms include:
 Breathlessness, progressing from breathlessness on exertion to breathlessness at rest9,10
 Pain9,10
 Cough
 Functional decline
 Fatigue10
 Weight loss
 Low mood9,10
 Increasing anxiety10
 Respiratory tract secretions
Informal carers also carry a heavy burden.11
These symptoms increase over time towards death, and whilst none are certain indicators of death
in themselves, collectively they may signal that the person is dying. For example, a person with
COPD who has deteriorating health characterised by a history of three or more exacerbations
requiring hospital admission in the last twelve months, 2 who has refractory breathlessness at rest,
is increasingly frail, increasingly anxious, with declining mobility and weight loss may well be
nearing death. Even here, however, the spiral of decline may sometimes be halted and the patient
go on to have months of life.
Management in the last days-hours of life
Consider how your management of the person’s COPD may impact on any co-morbidities they may
have.
Medications that may need stopping as death approaches



As patients near death you can expect that they will become unable to manage handheld
inhalers
In those patients in whom it is clear that they are dying consider stopping treatments, including
antibiotics, oxygen, nebulisers and non-invasive ventilation (NIV) if they are within hours of
death, particularly if unconscious. At this point such treatments have little symptomatic benefit,
may be considered to have no reasonable chance of success in meeting physiological aims,
and may unnecessarily prolong the dying process.
Seek senior support for stopping such treatments, particularly NIV, if you are not confident
about how to do this.
Medications that may need continuing as death approaches

For many patients it may be unclear whether they are at the end of their lives or not, and they
may be appropriately undergoing active attempts to treat an exacerbation. Under these
circumstances it is important to consider whether a combination of both active management of
the disease and palliative approaches to symptoms should be instigated.
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

Many of the routine medications for breathlessness and other symptom management should
be continued for as long as they have benefit, for example, nebulisers may have a role in
relieving breathlessness until very near the end of life.
However, you should also consider the negative impact of any treatments being given, for
example, the reduced ability of a patient to say last words to loved ones while on NIV or the
impact (negative or positive) on surviving family members of seeing their dying relative
attached to an oxygen mask.
Medications that may need introducing as illness progresses

For patients who are severely affected by symptoms (such as breathlessness at rest) despite
optimised non-pharmacological and medical approaches (including the correct management of
co-morbidities such as heart failure), it may be appropriate to use additional medications
aimed at reducing symptoms.
Time
Symptom
Intervention
Frame
Last Days Breathlessness Opioids*
(exact
timing
depends
on
clinical
situation,
ceilings
of
treatment
and
treatment
goals)
Details
For patients who are unable to swallow the use
of a syringe driver should be considered.
Convert to diamorphine from the existing opioid
dose in the usual way.
If opioid naïve start at a low dose (e.g.
diamorphine 5mg per 24 hours by continuous
subcutaneous infusion - CSCI) and titrate as
needed.
Continue anti-emetics and laxatives as
indicated.
It may sometimes be necessary to give PRN
doses of subcutaneous diamorphine at the
usual dose relative to that in the syringe driver.
Last Days
Breathlessness Benzodiazepines* Similarly midazolam may be given by syringe
driver. Starting dose depends on previous
benzodiazepine use and other factors such as
fear, but a reasonable starting dose is 5-10mg
per 24 hours CSCI.
Titrate according to response.
It may sometimes be necessary to give PRN
doses of subcutaneous midazolam at the usual
dose relative to that in the syringe driver.
Last Days
Secretions
Anticholinergics*
Glycopyrronium may be given as a
subcutaneous PRN dose (0.2-0.4mg) and/or as
CSCI in a syringe driver, starting at 0.6mg per
24 hours up to a maximum total (CSCI + PRN
doses) of 1.2mg per 24 hours.
*The recommendations above are using medications for unlicensed indications and/or by
unlicensed routes
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A note on evidence




Nonpharmacological interventions are the most effective approaches currently available to
palliate breathlessness in the mobile patient.4
Increasingly the evidence is pointing towards the harms of long term opioid and/or
benzodiazepine use, which should therefore only be used:
 if other approaches have failed
 if symptom severity warrants their use
 and after informed agreement on the part of the patient (or best interests decision).
There is little evidence to support the use of benzodiazepines for breathlessness, 12 but
anecdotally they appear useful, particularly where anxiety/panic attack is a marked feature.
There is some evidence in support of opioid use, but evidence specific to very severe COPD
(including those who retain carbon dioxide) is lacking.3 Caution is therefore required.
Key messages







All care should be patient focused and individually tailored.
Prognostication of patients with advanced COPD is challenging and frequently uncertain, but
this shouldn’t detract you from planning for the future with your patients.
It is often appropriate to manage symptoms palliatively while actively managing the disease,
such as during an exacerbation.
Management of breathlessness in the last years and months of life should focus on nonpharmacological approaches in the first instance.
A combination of symptoms and health burdens may indicate that a person with COPD is
approaching death.
When a person is dying of COPD management aims to optimise symptom control & comfort,
and support the patient, family and important others through the dying experience.
Management may involve a combination of continuing, stopping or introducing appropriate
treatments.
Clear, open communication between patient, family and important others, and all health
professionals, involved is key to supporting a ‘good death’.
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 Key references:
1. National Clinical Guideline Centre. Chronic obstructive pulmonary disease: management of
chronic obstructive pulmonary disease in adults in primary and secondary care. London:
National Clinical Guideline Centre, 2010.
2. http://www.goldstandardsframework.org.uk/cdcontent/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%2
02011.pdf Accessed 9th October 2013
3. Boland J, Martin J, Wells AU, Ross JR. Palliative care for people with non-malignant lung
disease: Summary of current evidence and future direction. Palliat Med 2013;27:811-6.
4. Booth S, Moffat C, Burkin J, Galbraith S, Bausewein C. Nonpharmacological interventions for
breathlessness. Curr Opin Support Palliat Care. 2011;5:77-86.
5. Bausewein C, Booth S, Gysels M, Higginson IJ. Non-pharmacological interventions for
breathlessness in advanced stages of malignant and non-malignant diseases (Review).
Cochrane Database of Systematic Reviews 2008, Issue 2. Art. No.: CD005623
6. General Medical Council. Treatment and care towards the end of life: good practice in decision
making, 2010
7. Booth S, Moffat C, Burkin J. Cambridge Breathlessness Intervention Service Manual.
Addenbrookes’s BIS Press, http://www.cuh.org.uk/breathlessness (2012).
8. Celli BR, Cote CG, Marin JM, Casanova C, Montes de Oca M, Mendez RA, Plata VP, Cabral HJ.
New Engl J Med 2004 ;350 :1005-12.
9. Elkington H, White P, Addington-Hall J, Higgs R, Edmonds P. The healthcare needs of chronic
obstructive pulmonary disease patients in the last year of life. Palliat Med 2005;19:485-91.
10. Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced
cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain
Sympt Manage 2006;31:58-69.
11. Simpson AC, Young J, Donahue M, Rocker G. A day at a time: caregiving on the edge of
advanced COPD. Int J COPD. 2010;5:141-51.
12. Simon ST, Higginson IJ, Booth S, Harding R, Bausewein C. Benzodiazepines for the relief of
breathlessness in advanced malignant and non-malignant diseases in adults (Review).
Cochrane Database of Systematic Reviews 2010, Issue 1. Art. No.: CD007354.
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Top Tips: patients with Heart Failure
 The common or significant health and symptom burdens: last years, months & days of
life







Deterioration – progression to stages NYHA 3-4
Multiple co-morbidities, often due to vascular disease
Multiple episodes of decompensation (fluid overload), increasing in frequency & severity
Increased number of hospital admissions (decompensation & symptom control)
Increased physical symptoms – pain, breathlessness, cough, dry mouth, anorexia,
constipation
Increased psychological symptoms – fear, anxiety
Possible poor insight and understanding that they are dying from their illness depending on
information given and previous experiences of acute treatment in the past
 Types of medications commonly used in heart failure disease
Medication Group
Indications
Diuretics
(Furosemide, Bumetanide,
Bendroflumethiazide)
Reduce fluid
overload
ACE Inhibitors
(Ramipril, Lisinopril,
Perindopril, Enalapril,
Captopril)
Prognostic
medication.
Lightens the
workload of the
heart
Reduces
dyspnoea
Relax muscle in
blood vessel
walls - increase
blood flow
Prognostic
medication.
Lightens the
workload of the
heart
Reduce
hypertension
Reduce heart
rate
Nitrates (Isosorbide
Dinitrate) & vasodilator
(Hydralazine)
combination
Angiotensin 2 receptor
blocker (ARB)
(Candesartan, Irbesartan,
Losartan, Valsartan)
Beta blocker
(Bisoprolol, Atenolol,
Carvedilol, Nebivolol)
Aldosterone antagonist
(Spironolactone)
Page 25 of 53
Reduce fluid
overload
Control K+
levels
Benefits
Risks and Burdens
Reduce oedema &
improve symptoms
(especially
shortness of
breath)
Improves
symptoms &
functional capacity
Hypotension causing dizziness
Electrolyte imbalance requiring
monitoring
Urinary frequency
Diuretic resistance
Renal impairment
Electrolyte imbalance requiring
monitoring
Hypotension requiring monitoring
May lessen
dyspnoea
May relieve chest
pain
Headaches
Nausea & vomiting
Improves
symptoms &
functional capacity
Renal impairment
Electrolyte imbalance requiring
monitoring(hyperkalaemia)
Hypotension requiring monitoring
Dizziness
Dizziness
Hypotension
Bradycardia
Not to be used in true asthma as may
make asthma worse
Can impact on diabetic control and mask
symptoms relating to hypoglycaemia
Can be problematic if withdrawn abruptly
Hyperkalaemia requiring monitoring renal
function
Diarrhoea
Gynaecomastia
Improves
symptoms &
functional capacity
Reduce oedema
Help to control
potassium levels
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
review December 2014
 Medications that may need stopping as illness progresses
Drug
Nitrates
Beta blocker
ACE inhibitor
ARB
Vasodilators
Digoxin
Rationale for stopping
Very limited role in advanced heart failure
Worsening dyspnoea or fatigue
Concurrent illness causing hypovalaemia
Concurrent illness causing hypovalaemia
No symptom response to change in regime
Needs individual assessment as to stage of
palliation, may still provide some relief of
awareness of heart beat.
 Medications that may need continuing as illness progresses

Diuretics – symptomatic relief of fluid relief (discomfort, lymphorrhoea, cellulitis, unsightly)
 Medications that may need introducing as illness progresses








Opioids – pain & dyspnoea (NB: Consider renal function re: choice of opioid)
Benzodiazepines – anxiety, dyspnoea
Nebulised saline – cough
Anti-emetics – nausea & vomiting
Laxatives - constipation
Anti-depressants – depression
Saliva stimulants- dry mouth
End of life care drugs – see section on the last days of life
 Key messages




Ensure arrangements are made to discuss and turn off any implantable cardioverter
defibrillators (ICD) if appropriate.
Reduce tablet burden
Consider ability to take medication /alternative routes
Oxygen has minimal therapeutic benefit in chronic heart failure
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 Key references:
1. Scottish Partnership for Palliative Care (2008) Living & Dying with Advanced Heart Failure:
a palliative care approach. Edinburgh.
2. NICE (2010) Management of Chronic Heart Failure in Adults in Primary & Secondary care.
NICE, London.
3. Johnson M. & Lehman R. (2006) Heart Failure & Palliative Care: a team approach.
Radcliffe Publishing, Oxford.
 Useful resources
St Joseph’s Hospice, Mare Street. 020 8525 6000
Barts Health, The London Chest Hospital, Heart Failure Team 020 8983 2239
British Heart Foundation, Medical information or support 0300 330 3311
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Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
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Top Tips: patients with Chronic Kidney Disease (CKD)
 This guidance is intended for those with CKD Stages 4&5 (i.e. eGFR<30mL/min/1.73m2)
Contents:
Table 1:
Table 2:
Table 3:
Suggested approach to Reducing Medication burden in CKD patients with a poor
prognosis: produced jointly by St Joseph’s Hospice and Professor Magdi Yaqoob,
consultant nephrologist, The Royal London Hospital (Barts Health).
Symptom Control Guidelines for patients with End Stage Renal Failure in the community
(eGFR<15): outlines the common symptoms and suggested ways of managing them
Managing patients in the last few days of life (terminal care)
What are the common or significant health and symptom burdens of patients with CKD in
the last years, months and days of life?
Patients with end stage renal failure can be highly symptomatic1. See Table 2
What might affect prescribing decisions in renal patients?
How the renal failure is being managed
Patients approaching the end of life due to advanced renal disease, fall into the following groups:
 Those managed conservatively without dialysis (death usually at eGFR approx. 5mL/min)
 Those who elect to stop dialysis (death usually within 8-10 days2, unless dialysis was
commenced within previous 3-6 months – when residual renal function may be greater)
 Those identified as deteriorating despite dialysis (NB the prognosis for CKD patients on
dialysis remains much reduced; at 65yrs, life expectancy on dialysis is 3.9yrs - compared to
the usual life expectancy of 17.2yrs in an age matched population).
Other comorbidities


Most CKD patients require several different medications due to the presence of co-existing
conditions, (e.g. hypertension), which if well controlled slows renal disease progression.
The mean burden is 9.7 tablets per day. There is increasingly recognition that as the
number of tablets increases, adherence falls3.
The patient’s prognosis




Predicting when renal patients are approaching the end of life can be challenging
Cardiovascular disease is common & may cause sudden death.
For older patients on dialysis, prognosis tends to be reduced with: being non-ambulatory,
underweight, albumin <35g/L, co-morbid conditions (CCF, IHD, diabetes, COPD, PVD, CVA
or cancer)4. Other associations are a CRP consistently >15, repeat admissions, & the
presence of Erythropoiesis Stimulating Agent refractory anaemia (requiring >18,000 units
per week).
The ‘surprise question’5 is also often used by renal teams to identify patients, whom the
team would not be surprised in the event that they died within the next 6-12 months.
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Table 1:
Suggested Approach to Reducing Medication Burden in CKD Patients with a
Poor Prognosis
MEDICATION
GROUP
INDICATIONS
RISKS/
BURDENS
BENEFITS
ADVICE
Lipid Regulating
Drugs
e.g. Simvastatin
Cardiovascular
disease is common.
Max dose Simvastatin
10mg po od if
eGFR<30
Anti-platelet effect
Myositis
Rhabdomyolysis
Reduce risk of
cardiovascular events
with long term use
Stop early in End Of Life Care
(EOLC) –when prognosis felt
>several months/ year
Gastric irritation
Reduced risk
cardiovascular events
Cinacalcet
Secondary
Hyperparathyroidism
Nausea
Anorexia
Reduced renal
osteodystrophy
Vitamin D analogues
Renal hydroxylation &
activation of Vitamin
D does not occur
High blood pressure
Hypercalcaemia
Reduced renal
osteodystrophy
Stop early unless vascular
stents are in situ – when advise
continue
Can develop generalised aching
from renal bone dx so continue
if tablet burden manageable.
Stop fairly early – prognosis of
months
Postural
hypotension
Falls
Controlling blood
pressure helps (i) slow
deterioration of renal
function (ii) reduce risk
of cardiovascular
events
Review. Loosening BP control
appropriate if prognosis months,
espec if tablet burden high or
side effects. (150-160/ 60-90
acceptable)
ACE inhibitors can slow
progression of renal dx & good
Aspirin
Anti-hypertensives
NB May be prescribed
for angina,
check indication
3
Phosphate Binders
(e.g. Calcichew,
Adcal)
Hyperphosphataemia
Taste bad, high
tablet burden
Erythropoiesis
Stimulating Agents
+/- Iron (IV or po)
Renal anaemia1–
target Hb between
10-12g/dL
Ferritin >100ng/ml&
<800ng/ml
Correct metabolic
acidosis if serum
bicarb <20mmol/L
Increase BP
Require s/c
Injection
Sodium Bicarbonate
Proton Pump
Inhibitor/ Ranitidine
Diuretics
Diet
Advice given by renal
dieticians can reduce
symptoms
Page 29 of 53
High incidence of
reflux/ gastritis in
CKD
Fluid overload
Reducing
(i) Salt intake can
reduce fluid overload
(ii) Protein intake can
reduce many uraemic
symptoms
Can exacerbate
fluid overload/
CCF. Dose
variable.
Dehydration
Reduce absorption of
phosphate
High phosphate may
cause or exacerbate
pruritus
Reduce fatigue
Improve quality of life
Improve appetite
patient adherence . Can cause
hyperkalaemia, if K>5.5
discontinue.
If oral intake poor stop, if eating
well continue. Consider Alu-cap more palatable, cheap.
Continue unless not benefiting
(ie Hb<9 despite EPO>18,000
units/week). Treat Hb with PRN
transfusions.
Slows progression of
CKD, lowers potassium
level, improves
appetite
Stop dyspepsia
Reduce risk of GI
bleed
Stop late – when unable to take
orally. Also stop if bicarb
consistently >30mmol/l.
Diuresis improves
oedema/pulmonary
oedema
Assess fluid status, likely to
need unless dehydrated Risk
that should fluid accumulate,
difficult to offload with low EGFR
(i) Salt intake aim 5 gm./d. (ii)
Modest reduction of protein
intake to 0.6 gm./kg body
weight. If intake already low
consider supplementation of
keto acids via renal dieticians
Continue until last days.
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review December 2014
Table 2: Symptom Control Guidelines for Patients with End Stage Renal Failure in the Community (eGFR<15)
Symptom
Common Causes / Comments
Dyspnoea
61%i
Fluid overload (Pulmonary oedema)…………………………………………………………………………………………...
Metabolic Acidosis…………………………………………………………………………………………………………………….
Pain
Bone/joint
pain 58%i
Muscle
cramps 50% i
Vomiting/
Nausea 26% i
Agitation
Itch 74% i
Restless legs
48% i
Anaemia – Hb level can sometimes decrease rapidly causing dyspnoea………………………………………
Avoid NSAIDs* (only give if necessary for pain control AND patient close to dying)
Consider the underlying cause of pain (e.g. peripheral vascular disease, renal osteodystrophy etc)
If prescribing opioids advise:

Start a low dose of opioid

Avoid slow release preparations of opioid

Increase usual dose interval as half-life maybe significantly prolonged (e.g. give prn)

Inform patient and relatives of signs of opioid toxicity (drowsiness, confusion,
myoclonus) & to call doctor should these occur. Early clinical review necessary.
Oral opioids: Risk of accumulation and toxicity as all undergo renal excretion.
Topical opioids: Fentanyl patches – inactive metabolites, minimal renal excretion but potent so
avoid in opiate naïve patients. Buprenorphine patches may also be safe but evidence is limited.
Injectable opioids: Alfentanil and Fentanyl are s/c drugs of choice. Short half-life when given prn
(approx1hr). Diamorphine/morphine - risk of accumulation. See table on page 4 on managing
pain in terminal care.
Uraemia (Nausea is prevalent, constant queasiness)
Gastric Stasis (Post prandial intermittent nausea, early satiety, vomiting relieves nausea)
Maybe sign is beginning to enter terminal phase. Exclude other causes: e.g. sepsis, urinary
retention, drug side effect, consider hypercalcaemia (CorrCa>2.8mmol/L) or opioid toxicity.
Common in ESRF. Exacerbating factors:
(1) Dry skin …………………………………………………………………..
(2) High serum phosphate (>1.5mmol/L)……………………………………………………………………………………
(3) Iron deficiency (Ferritin<100 / MCV<80 / Transferrin sats<20%) - consider IV iron*
Worse at night, moving legs relieves sensation. Common in ESRF.
Anaemia exacerbates restless legs, as does iron deficiency – consider checking bloods.
Neuroleptics/ tricyclics also exacerbate – can these be stopped?
Constipation
35% i
* Please contact renal team for advice:
Or symptom control/ terminal care advice:
Page 30 of 53
Management
If patient distressed administer midazolam 2.5mg s/c stat. Electric Fan (or breeze) on
patient’s face can help alleviate dyspnoea.
Furosemide -dose required may be high: max 250mg orally/24hrs*. Consider adding
Metolazone 2.5mg po alt days*. To monitor response can check daily weights (no more
than 1kg weight loss/day). If poor response after 1 week furosemide can be given s/c
by syringe driver over 24hrs to aid absorption*. If appropriate, weekly U&Es, LFTs, Cl &
serum bicarbonate check.
Check bloods to confirm – if serum bicarbonate <20 mmol/L prescribe Na bicarbonate
500mg po tds* Recheck bloods to assess response 1 week later.
If Hb<6gm/dl admission for transfusion may be appropriate*
1st step: Paracetamol 1g po tds
2nd Step: Paracetamol 1g po tds PLUS
- For intermittent pain: Either Tramadol IR 50mg po prn max bd OR oxycodone IR
(Oxynorm) 2.5mg po prn max 8-12 hourly. Cautiously titrate Oxynorm dose every few
days according to response*.
-for constant pain: Buprenorphine 7 day patch 5mcg /hr. NB this is equivalent to approx
5mg of oral oxycodone total dose in 24hrs.
3rd Step: Paracetamol 1g po qds plus Fentanyl 72 hour patch 12mcg/hr. NB this is
equivalent to 20mg of oral oxycodone total dose in 24hrs, so is potent.
If pain sounds neuropathic or due to muscle spasm consider clonazepam 0.5mg po od
as an alternative to opiates.
Leg cramps may be benefited by Vitamin C 250mg & Vitamin E 400mg po nocte (or
quinine).
Haloperidol 0.5-1mg po/sc od max tds (start with low dose, risk of drowsiness)
Metoclopramide 5mg po/sc tds (max 15mg/24hrs)
If no treatable cause found Haloperidol 0.5-1mg po max bd +/- Lorazepam 0.5mg po/sl
max bd
Regular emollient (e.g. Diprobase topically bd). Hot baths & alcohol can exacerbate itch.
Adjust phosphate binders*.
Itch can be resistant to anti-histamine: (1) Chlorphenamine 4mg nocte-sedative effect
may help sleep (max tds) +/-Ranitidine 150mg po bd (2)Or Ondansetron 4-8mg po max
bd often effective-but NB s/e is constipation (3) Or Pregabalin 25mg po nocte
Clonazepam 0.5mg po nocte.
Senna 15mg od & Lactulose 10-20mls max tds
If needed, switch lactulose to Na Docusate 200mg max tds.
BLT Renal supportive care nurses Mon-Fri 9-5pm (tel 07920595266) Out of hours – contact on call renal registrar via BLT switch (02073777000)
Contact St Joseph’s Hospice team tel 0208 5256000 (On call junior doctor & consultant available for telephone advice 24/7).
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
Table 3: Managing Renal Patients in the Last Few Days of Life (terminal care)
In the last few days of life7, the patient will not be undergoing dialysis & the recommendations below
allow for this. Many patients will not be well enough to swallow oral medications, most of which can
be discontinued, as the focus is on comfort.
Subcutaneous medication for symptom control can be given PRN or, if needed regularly, via a
syringe driver. The reduced blood brain barrier and protein binding of medication in CKD leaves
patients sensitive to sedating & cerebral side effects. As a result, low doses of medication should be
used initially, the response assessed & if necessary titrated carefully.
Symptom
Comments
Suggested Management
Nausea/Vomiting
Avoid Cyclizine- risk of arrhythmias if
co-existing cardiovascular dx
1st line Haloperidol 0.5-1mg po/sc nocte
max tds
2nd line Levomepromazine 2.5mg s/c
max bd
Excess respiratory
secretions
Reduced dose of Glycopyrronium in
CKD
Avoid Hyoscine hydrobromide (cerebral
side effects of sedation or paradoxical
agitation)
Consider reversible causes - urinary
retention/ incontinence, examine for
signs of pain. Are medications
contributing? Low lighting/ music may
help calm the patient.
Alfentanil - minimal renal excretionideal for syringe driver use. PRN
Alfentanil effect will be short lived half-life 1-3hrs.
Oxycodone IR can be given PRN for
pain, effect maybe prolonged - renal
excretion. Not recommended for
syringe driver use - risk of drug
accumulation.
Fentanyl or buprenorphine patches can
continue at end of life, if already
prescribed, minimal renal excretion.
Glycopyrronium 200mcg s/c PRN max tds
Glycopyrronium 600mcg s/c over 24
hours via syringe driver
Terminal
restlessness/
agitation
Pain
1st line: Midazolam low dose 2.5-5mg
PRN max 4hourly. Assess effectiveness.
2nd line: Levomepromazine 2.5-5mg s/c
max bd
Suggest discuss dose of alfentanil
needed with renal or palliative care
teams.
(contact details page 3)
For patients needing low dose analgesia
(i.e. previously taking paracetamol qds)
suggest:
Alfentanil 0.5mg s/c over 24hrs via
syringe driver
And/Or for PRN medications:
Oxycodone injection 1mg s/c prn max
qds.
Or Oxycodone IR (oxynorm) 2mg po prn
max qds if able to swallow.
Recommended Reading
British Journal of Hospital Medicine 2012; Vol173, no 11, p640 ‘Supportive & palliative Care for
People with End Stage Renal Disease’ J.Hussain, L.Russon.
Page 31 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
 Key References:
1.
Journal of Palliative Medicine 2007; 10, no 6, 1266 ‘Symptoms in Advanced Renal Disease:
A cross sectional survey of symptom prevalence in stage 5 CKD managed without dialysis’ F.
Murtagh, J.Addington-Hall, P.Edmonds et al.
2. Advances in Chronic Kidney Disease 2007; 14, No4, p379 ‘Dialysis Discontinuation: Quo
Vadis?’ Murtagh F, Cohen L, Germain M.
3. American Journal of Nephrology 2011; 34:71 ‘Regimen Complexity & Prescription
Adherence in Dialysis Patients’ L.Neri, A.Martini, V.Andreucci.
4. Annals of Internal Medicine 2007; 146:177-183 ‘Octogenarians and Nonagenarians
Starting Dialysis in the United States’. Kurella M, Covinsky K, Collins A, Chertow G.
5. Palliative Medicine 2011, 25:382 ‘Using the Surprise Question Can Identify People with
Advanced Heart Failure & COPD who would Benefit from a Palliative Care approach’.
S.Murray, K.Boyd.
6. www.kdigo.org Kidney Disease Improving Global Outcomes – Guidelines on Renal Anaemia
7. Palliative Medicine 2009;23:103-110. ‘Symptom Management for the Adult Patient Dying
with Advanced Kidney Disease: A review of the literature & development of evidence based
guidelines’. C.Douglas, F.Murtagh, E.Chambers, M.Howse, J.Ellershaw
Page 32 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
Top Tips: patients with Liver Disease
 What are the common or significant health and symptom burdens for patients with end
stage liver disease in the last years, months and days of life?
Decompensated disease
o
o
o
o
o
o
Encephalopathy
Bleeding
Ascites/oedema
Spontaneous Bacterial Peritonitis (SBP)
Renal Failure
Jaundice
Ongoing symptoms
o
o
Pain
Itch
Types of medications commonly used in liver disease
Medication
Group
Laxatives,
particularly
lactulose
Diuretics
Propranolol4
Prophylactic
antibiotics
Vitamin
supplements
Rifaximin
Indications
Benefits
Prevent
decompensation
Prevent
decompensation
Control oedema +/ascites
Prevent variceal
bleeding
Prevent SBP
Control symptoms
Prevent WernickeKorsakoff syndrome
Prevent osteoporosis3
Prevent
encephalopathy
Prevent complications
Risks and Burdens
Prevent bleeds
Diarrhoea
Flatulence
Cramps
Lowered BP
Increased urinary frequency
Lowered BP
Prevent infection
Diarrhoea
Medications that may need stopping as illness progresses:
 Once the oral route is not possible, if medication was felt to be controlling symptoms consider
an alternative route e.g. furosemide via syringe driver
 As end of life approaches, focus shifts to symptom management rather than long term
prevention
 Propranolol, prophylactic antibiotics, vitamins and rifaximin may be appropriate to stop, after
a discussion about an individual patient’s risks, benefits and burdens
 Diuretics may need to be stopped e.g. if BP becomes too low. Other measures to control
breathlessness from oedema can be used
 Laxatives may become difficult to take as the persons approaches the terminal phase. Rectal
measures may be needed to maintain bowel function
Page 33 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
Medications that may need introducing as illness progresses
 Analgesia- possible causes of pain include abdominal distension, musculoskeletal pain from
reduced mobility.
 Anti-emetics- possible causes of nausea include abdominal distension, deranged electrolytes
 Diuretics- as oedema/ascites worsen
 Anti-histamines/other agents to control itch- if jaundice develops
Medications that may need continuing as illness progresses
 Once the oral route is not possible, if medication was felt to be controlling symptoms consider
an alternative route e.g. furosemide via syringe driver
Key messages
 The risks, benefits and burdens for medication use in liver disease should be considered on
an individual basis.
 When new medication is introduced consider risk of precipitating encephalopathy and
introduce cautiously and titrate upwards
 Medications that may cause encephalopathy include those that cause sedation (e.g. opioids,
benzodiazepines), hypokalaemia (e.g. diuretics, corticosteroids) or constipation (e.g. opioids)2
 Consider that renal function may become impaired
 Consider creating an Advance Care Plan to cover how to respond to decompensated disease
e.g. in event of major haemorrhage
Page 34 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
 Key references:
1.
Getting it Right: Improving End of Life Care for People Living with Liver Disease. Feb
2013. NHS National End of Life Care Programme
2.
Palliative Care Formulary
3.
BSG guidelines on the management of osteoporosis associated with chronic liver disease
J D Collier, M Ninkovic, J E Compston Gut 2002;50(Suppl I):i1–i9
4.
BSG guidelines on the management of variceal haemorrhage in cirrhotic patients – 2000
R Jalan, P C Hayes
Page 35 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
Top Tips: patients with Cancer
 What are the common or significant health and symptom burdens for patients with end
stage cancer in the last years, months and days of life?
Cancer can produce local effects depending on where it has originated.
This guidance touches on the general effects commonly experienced as disease progresses:
Pain
Breathlessness
Nausea and vomiting
Constipation
Insomnia
Anxiety
Depression
Fatigue
Loss of appetite
Weight loss
Risk of Deep Vein Thrombosis
 Types of medications commonly used in end stage cancer1,2,3
Medication Group
Analgesics e.g.
Paracetamol
NonSAIDs
Opioids
Neuropathic
agents
E.g. antiepileptics, antidepressants
Indications
Pain
(strong opioids
may also
improve
perception of
breathlessness)
Benefits
Relieve pain (which
may improve other
factors such as
functional ability and
mood )
Risks and Burdens
NSAIDs- renal toxicity and risk of
CVA and MI long-term, check renal
function regularly
Opioids:
Common initial- nausea and
vomiting, drowsiness
Common ongoing - constipation,
dry mouth, nausea and vomiting
Less common
Neurotoxicity-e.g. myoclonus,
hallucinations
Urinary retention
Rare
respiratory depression
Anticipate side effects such as
constipation and nausea and
prescribe necessary medications
to prevent or treat
Anti-epileptics- some drugs such
as phenytoin need plasma levels
and monitoring of other
parameters – check individual
drug
Drugs such as pregabalin and
gabapentin can have similar side
effects to opioids
Page 36 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
Medication Group
Indications
Benefits
Anxiolytics
Benzodiazepines
e.g. Lorazepam,
midazolam
Laxatives :
Bulk-forming
Isphagula husk
(e.g. fybogel)
Softeners:
Docusate Sodium
Liquid paraffin
Stimulants:
Senna
Osmotic:
Lactulose
Movicol
Treatment of
anxiety
Relief of anxiety
(e.g. anxiety associated
with breathlessness)
Sedation
Occasionally paradoxical
worsening of anxiety
Prevent or
manage
constipation
Prevent or manage
constipation
Over-laxation leading to diarrhoea
or faecal incontinence
Antidepressants
e.g.
Treatment of
depression
Cramps (especially stimulants)
Flatulence
Isphagula- need adequate fluid
intake or risk of obstruction
Improve mood, may
improve pain, sleep
and function
Tricyclic (TCAs)
Selective
Serotonin
Reuptake
inhibitors (SSRIs)
Poor appetite
Corticosteroids
Page 37 of 53
Increased appetite and
enjoyment of food
Possible non fluid
weight gain with
progestogens
Progestogens
Anticoagulants:
Warfarin
Low Molecular
Weight Heparin
TCAsDry mouth
Blurred vision
Cardiovascular- tachycardia,
arrhythmias
Urinary retention
SSRIs- withdrawal reactions if
stopped, can be sedating but less
so than TCAs, nausea and
vomiting, risk of suicidal
behaviour
Serotonin
noradrenaline reuptake inhibitor
(SNRIs)
Appetite
stimulants:
Risks and Burdens
DVT
Treatment and
Prevention of DVT
(non cancer
related e.g. AF,
prosthetic heart
valve etc.)
(Prevention of arterial
embolic events such
as stroke)
SNRIs- as SSRIs, weight gain can
occur with some
No survival benefit
Corticosteroids: Fluid retention,
mood disturbance, thrush, steroid
induced diabetes, delicate skin,
insomnia addisonian crisis if use
longterm and stopped abruptly
Progestogens: risk of thromboembolic events
Risk of haemorrhage
LMWH heparin preferable to
warfarin in those with unstable
/progressive cancer due to
increased risk of bleeding with
warfarin and difficulty in stabilising
INR
Heparin induced
thrombocytopenia
Burden of INR monitoring on
warfarin
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
 Medications that may need stopping as illness progresses
o
Drugs with aim of long term prevention of a problem as prognosis shortens e.g. statins
o
Drugs where burden starts to outweigh benefits- will partly depend on the patients views
on risk and benefits e.g.
Haemorrhage on anticoagulants
Diabetes cause by steroids
Hypotension and dizziness on diuretics
Oral medications may need stopping or substituting when a patient finds it more difficult to swallow
in the last few days or weeks of life- see end of life section
 Medications that may need continuing as illness progresses
Analgesics- if analgesics have been routinely needed during the course of the illness, an analgesic
regime is likely to be needed up until death- see end of life section
Drugs such as laxatives are often needed on an on-going basis to prevent constipation, particular if
regular opioids being taken
 Medications that may need introducing as illness progresses
Depends on symptoms- adjuvant medications for pain e.g. .neuropathic agents may be needed if
pain becomes more complex as cancer progresses
Page 38 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
 Key References:
1. British National Formulary 66 September 2013-March 2014 BMJ Group and the Royal
Pharmaceutical Society of Great Britain London 2013
2. Watson, M Lucas, C Hoy, A Back, I Armstrong, P Palliative Adult Network Guidelines 3rd
Edition London
Anglia, Kent and Medway, Mount Vernon, Northern Ireland, South East
London, South West London, Surrey, West Sussex and Hampshire, Sussex Cancer Networks
and Palliative Care Cymru Implementation Board, 2011 .
3. Twycross R, Wilcock A, (Eds) Palliative Care Formulary 4th Edition Nottingham
Palliaitivedrugs.com 2011
 Useful resources
http://www.macmillan.org.uk/Home.aspx
Page 39 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review
December 2014
Top Tips: patients with Progressive Long Term Neurological Conditions (LTNCs)
 Life limiting progressive neurological conditions could include the following:



Neurodegenerative;
E.g. Motor Neurone Disease (MND), Parkinson’s disease (PD) and Friedreich’s Ataxia (FA)
Neuroinflammatory;
e.g. Primary progressive Multiple Sclerosis (MS)
Neuromuscular
E.g. Duchenne Muscular Dystrophy, Spinal Muscular Atrophy
 What are the common or significant health and symptom burdens of progressive
neurological conditions in patients in the last year, months and days of life?
Depending on the type of condition, the following may occur:







Pain
Nausea and vomiting
Breathlessness
Drooling
Anxiety and depression
Cognitive changes
Spasticity





Increasing disability
Swallowing difficulties
Communication difficulties
Bladder and bowel dysfunction
Skin breakdown
Things to consider when managing medicines for neurological patients
 Patients and carers are often experts in disease and medication management 1
 Non -pharmacological interventions can be used to control symptoms e.g. botulinum toxin for
excessive drooling or spasticity, psychological support for anxiety or depression, physiotherapy for
postural control and repositioning
 An Advanced Decision to Refuse Treatment (ADRT) or advance statements may exist that are
relevant to medicines management
 Many patients are maintained on finely tuned management routines, e.g. bowel/bladder,
spasticity, which if disturbed may lead to increased morbidity and distress, and may take weeks
to re-establish1 You may need to liaise with their neurology nurse or consultant for specialist
advice when making changes
 The oral route for administering medication may be lost prior to the terminal phase- consider
early if gastrostomy is appropriate
Parkinson’s Disease (PD)
Given the complexity of drug therapy in PD, specific drug therapy is not outlined here but this
guidance signposts you to a summary document on drug therapy published by PD UK if you need
further information
Page 40 of 53
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review December 2014
Types of Medications Commonly Used in Progressive LTNCs: (adapted from Radanovic et al 2007)2
MEDICATION GROUPS
ACCORDING TO SYMPTOM
Treatment for cramps:
BENEFITS
Baclofen
Tizanidine
Dantrolene
Memantine
Cannabis extract (MS only)
NON PHARMACOLOGICAL ALTERNATIVES
Relief of cramp
Tablet burden or time taken to put through
gastrostomy
Toxic in over-dosage with risk or accidental
fatalities
Physiotherapy
Physical exercise
Massage
Hydrotherapy
Reduction in
spasticity
Reduction in tone leading to increased disability
Physiotherapy
Hydrotherapy Cryotherapy
Quinine sulphate
Spasticity:
RISKS AND BURDENS
Sedation
May help pain if
related to spasticity
GI disturbance
May make passive
movement easier
Dry mouth
Mood disturbance
Hepatotoxicity (Dantrolene and Tizanidine)
May effect ability to drive
Needs careful withdrawal of Tizanidine due to
potential rebound hypertension and tachycardia
Excessive watery saliva:
(drugs with antimuscarinic
effects)
Atropine
Hyoscine hydrobromide
Hyoscine butylbromide
Hyoscine Scopoderm
Glycopyrronium
Amitriptyline
Page 41 of 53
Reduction in excess
saliva
Overly dry mouth
Any tenacious secretions may become more
tenacious if also problematic
Other anti-muscarinic effects;
Blurred vision
Cardiovascular- tachycardia, arrhythmias
Urinary retention
Home suction device
Dark grape juice
Sugar-free citrus lozenges
Nebulization
Steam inhalation
Botox injections into parotid glands
Irradiation of the salivary glands
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review December 2014
MEDICATION GROUPS
ACCORDING TO SYMPTOM
Tenacious saliva and
bronchial secretions:
Carbocisteine
Pain:
Paracetamol
NSAIDs
Opioids
Neuropathic agents
E.g. anti-epileptics
BENEFITS
RISKS AND BURDENS
Thinning of tenacious
secretions making it
easier to suction or
for patient to selfclear
Patient gets thinner secretions that they are still
unable to clear-choking sensation
Relieve pain (which
may improve other
factors such as
functional ability and
mood )
NSAIDs- renal toxicity and risk of CVA and MI
long-term, check renal function regularly
Risk of peptic irritation and GI bleed
Opioids:
Common initial- nausea and vomiting,
drowsiness
Common on-going - constipation, dry mouth,
nausea and vomiting
Less common
Neurotoxicity-e.g. myoclonus, hallucinations
Urinary retention
Rare
respiratory depression
Anticipate side effects such as constipation and
nausea and prescribe necessary medications to
prevent or treat
Anti-epileptics- some drugs such as phenytoin
need plasma levels and monitoring of other
parameters – check individual drug
Drugs such as pregabalin and gabapentin can
have similar side effects to opioids
Page 42 of 53
NON PHARMACOLOGICAL ALTERNATIVES
Home suction device
Assisted cough insufflator-exsufflator
Rehydration (jelly/ice)
Reduce use of dairy
products/alcohol/caffeine
Butter
Positioning
Complementary therapy
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review December 2014
MEDICATION GROUPS
ACCORDING TO SYMPTOM
Constipation
Laxatives :
Bulk-forming
Isphagula husk (e.g.
fybogel)
Softeners:
Docusate Sodium
Liquid paraffin
Stimulants:
Senna
Osmotic:
Lactulose
Movicol
BENEFITS
Reduce painful or
distressing
constipation
RISKS AND BURDENS
Over-laxation leading to diarrhoea or faecal
incontinence
Hydration
Increased fibre intake
Cramps (especially stimulants)
Flatulence
Isphagula- need adequate fluid intake or risk of
obstruction
Urinary urgency/frequency
Antimuscarinics e.g.
tolteridine, oxybutinin
Reduce symptoms of
urgency and
incontinence
See Excessive watery saliva:
section
Nausea and vomiting
Antihistamines e.g.
Cyclizing
Phenothiazines e.g.
prochlorperazine
Levomepromazine
Prokinetic:
Metoclopramide (D2
antagonist, 5HT4 agonist)
Domperidone (D2
antagonist)
Reduce nausea and
vomiting
Check individual drugs:
Risk of parkinsonism and dyskinesias-in PD use
Domperidone as does not cross blood brain
barrier but risk of gynaecomastia
Lowering of seizure threshold
Page 43 of 53
NON PHARMACOLOGICAL ALTERNATIVES
Review fluid intake
Bladder retraining
Pelvic floor exercises
Botulinum toxin
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For review December 2014
MEDICATION GROUPS
ACCORDING TO SYMPTOM
Depression
Tricyclic antidepressants
Selective Serotonin reuptake inhibitors (SSRIs)e.g. citalopram, fluoxetine
BENEFITS
Improve or stabilise
mood
TCAs- see notes on amitriptyline above
Improve sleep
As previously outlined in table
Benzodiazepines e.g.
Lorazepam, midazolam
Sedation
Occasionally paradoxical worsening of anxiety
Breathlessness
Opioids e.g. morphine to
reduce perception of SOB
Benzodiazepines-(e.g.
Lorazepam ,
midazolam)indicated for
any anxiety associated with
SOB
Page 44 of 53
Psychological support
Counselling
Comfort
Sleep hygiene
Tricyclic antidepressants
e.g. amitriptyline
Anxiety:
Benzodiazepines
NON PHARMACOLOGICAL ALTERNATIVES
SSRIs- withdrawal reactions if stopped, can be
sedating but less so than TCAs, nausea and
vomiting, risk of suicidal behaviour
SNRIs- as SSRIs, weight gain can occur with
some
Serotonin noradrenaline reuptake inhibitor (SNRIs)duloxetine, mirtazepin
Insomnia:
RISKS AND BURDENS
Improve anxiety e.g.
anxiety related to
breathlessness
Improve sensation of
breathlessness
See insomnia section above
Psychological support
Counselling
See insomnia section above for
benzodiazepines
Breathing techniques
Physio
Psychological support
Complementary therapies
See pain section for opioids
Managing Medicines in the Last Years of Life – Decision support guidance: Commissioned by THCCG: For
review December 2014
 Review of medications as illness progresses
Think ahead.
Loss of oral route
If loss of oral route is anticipated long term feeding options need to be consider early, before the
oral route is lost. All the groups of medication listed may prove useful even fairly late on in
disease, to achieve good symptom control. A speech and language therapist may have advice
about how to preserve oral route for as long as possible and which formulations are most useful.
If converting medication from oral route to gastrostomy route, take care that drug can safely go
down the gastrostomy without causing blockage or damage of gastrostomy tube or drug/drug
interactions in the gastrostomy tube
Subcutaneous medication or transdermal medication may be useful if the oral route is lost and
there is no gastrostomy in situ (refer to last hours of life). Examples include:
 transdermal opioids for pain relief- fentanyl, buprenorphine
 use of rotigotine patch (dopamine agonist) in Parkinson’s Disease
For guidance in the terminal phase see section 10 of these guidelines
 Key messages
Symptom control in patients with LTNCs is often multifactorial and complex- medication
changes need to be made in this context, involving the patient and carers where possible,
seeking specialist advice when necessary. Think ahead if you are aware the oral route may
be lost as result of the condition
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
Key references:
1. Royal College of Physicians Consensus Guidance to Good Practice Long- term
Neurological Conditions:
Management at the Interface Between Neurology,
Rehabilitation and Palliative Care London 2008
2. Radunovic A, Mitsumoto H, Leigh PN. Clinical care of patients with amyotrophic lateral
sclerosis. Lancet Neurology 2007;6:913-925
 Useful resources
http://www.pharmacy.cmu.ac.th/unit/unit_files/files_download/2012-0326HandbkOfDrugAdminiViaEnteralFeedingTubes%201stEd_WhiteAndBradn.pdf
Handbook of Drug Administration via Enteral Feeding Tubes Bradman V, White R
Pharmaceutical Press 2007 Date accessed 09.09.13
http://www.parkinsons.org.uk/content/drug-treatments-parkinsons-booklet
Drug treatment for Parkinson’s August 2012 Parkinson’s UK Date accessed: 09.09.13
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Top Tips: care for people in the Last Days or Hours of Life
 What are the common or problems for people in their last few days or hours of life?
The following tips are intended to guide care of patients with a progressive incurable illness
who are deteriorating due to their condition. Reversible causes of deterioration should be
considered and treated if appropriate.
General condition
Diminishing mobility and increasing dependency
Diminishing conscious levels
Decreased ability to swallow with diminished interest in food and drink
Possible symptoms
Excess respiratory tract secretions
Pain
Restlessness and agitation
Breathlessness
Nausea and vomiting
 Approach to prescribing as illness progresses-loss of oral route
As a person approaches the end of life, it will be become increasingly difficult for a patient to
take medications by mouth. Some patients have other means of receiving medications (e.g.
through a gastrostomy, trans-dermally or via an intravenous cannula). At the point where the
person is approaching death, a medication review is helpful (see medication appropriateness
index in background section of this guidance).
 Key considerations for a medication review at the end of life
Given that the patient is now dying:
Is the medication likely to be of symptom benefit if continued?
Is the medication causing harm?
Can it be given in its current form or does this need to be changed to a suitable alternative if
available?
Will there be any withdrawal symptoms if a medication is stopped and if so how will these be
managed if they occur? e.g. anxiety on withdrawal of antidepressants
 Patient and carer involvement



Patients (if possible and appropriate) and their carers need to be informed of the
changes to the persons health and why the medications are being reviewed
Patients (if possible and appropriate) and carers need to understand the intended
benefit/outcome of each medication prescribed
Concerns or anxieties around medication regimes for dying patients are common and
need to be explored and addressed
e.g. fear of opioids, misperceptions of syringe driver
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 Does the patient need a syringe driver?
If the patient has lost the oral route, a syringe driver may be needed to deliver a continuous
infusion of medication, depending on the circumstances, to replace the function of particular
oral medications that can longer be taken by the patient.
If a patient has routinely received oral medication to manage any of the ‘possible symptoms’
outlined above, e.g. regular opioid analgesia for pain, or a regular antiemetic, this may need
to be converted to a suitable alternative via a continuous subcutaneous infusion
If the patient has not needed regular medication for any of the ‘possible symptoms’ outlined
above then it may not be appropriate to commence a syringe driver, but instead a range of
medications should be prescribed and available in anticipation of symptoms, in case they
develop, to avoid unnecessary delay in symptom control.
 Anticipatory prescribing
Medications should be prescribed in case they are needed for the possible symptoms
outlined above. Medications for symptom control will only be given when needed, at the right
time, with no more than is needed to control the symptom 1. Specialist palliative care advice
may need to be sought for patients on complex medication regimes, or who have other
problems such as renal or hepatic impairment which may affect choice and dose of drug.
If no previous need for medications for the following symptoms, consider prescribing the
following, checking that they are suitable for the patient you are caring for2,3:
Pain
Breathlessness
2.5-5mg morphine sulphate sc prn, given no more than 1
hourly
morphine sulphate as above
Restlessness or
agitation
Respiratory secretions
midazolam 2.5mg-5mg, sc prn
Nausea and vomiting
metoclopramide 10mg sc prn , max 30mg/24 hours
glycopyrronium 0.4mg sc prn, max 2.4mg/24hours
Or hyoscine hydrobromide 0.4mg sc, max 2.4mg/24 hours
Specialist palliative care advice may need to be sought for patients on complex medication
regimes, or who have other problems such as renal or hepatic impairment which may affect
choice and dose of drug.
Ongoing review
-
If patients need several extra doses of as required medications, with good effect on
symptom control, considering commencing or adding to a syringe driver
If as required medication is ineffective and patient remains symptomatic, reassess the
possible cause of the problem and seek specialist advice if necessary.
 Key messages
o
o
Medicines management is an important part of end of life care
Impending or actual loss of oral route warrants a medication review
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o
o
Patients and carers should be kept informed of any changes made
Specialist advice may be needed from St Joseph’s hospice if symptoms fail to
improve despite medication.
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 Key references:
1. Marie Curie Palliative Care Institute Liverpool Liverpool Care Pathway Version 12 2012
2. Twycross R, Wilcock A, (Eds) Palliative Care Formulary 4th Edition Palliaitivedrugs.com
2011 Nottingham
3. Back, I Palliative Medicine Handbook 3rd Edition BPM Books 2001 Cardiff
 Useful resources
http://wales.pallcare.info/ (open access national Welsh Palliative Care Guidelines)
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APPENDICES:
Useful Resources:
Link to Stevenson J et al Managing Comorbidities in Patients at the End of Life BMJ
2004;329:909-12:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC523125/
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