To avoid overuse of antibiotics under the impact of COVID-19, in March 2021 National Institute for Health and Care Excellence (NICE) published the COVID-19 rapid guideline which recommended that antibiotics are not indicated for preventing or treating COVID-19 unless there was an additional bacterial coinfection.

COVID-19 rapid guideline: antibiotics for pneumonia in adults in hospital

NICE guideline [NG173]Published date: 01 May 2020

Guidance
Tools and resources

Overview

1 Communicating with patients including on treatment and care planning
2 Tests to guide decisions about using antibiotics
3 Initial approach to antibiotic treatment choices
4 Assessing the ongoing need for antibiotics
5 Reassessment and specialist advice
6 Research recommendations

Share
Download guidance

Guidance

Next

The purpose of this guideline is to ensure the best antibiotic management of suspected or confirmed bacterial pneumonia in adults in hospital during the COVID‑19 pandemic. This includes people presenting to hospital with moderate to severe community-acquired pneumonia and people who develop pneumonia while in hospital. It will enable services to make the best use of NHS resources.

Where the new recommendations cover existing recommendations in the NICE guidelines on pneumonia (community-acquired): antimicrobial prescribing and pneumonia (hospital-acquired): antimicrobial prescribing follow the recommendations in the rapid guideline during the pandemic.

This guideline focuses on what you need to stop or start doing during the pandemic. Use it alongside your usual professional guidelines, standards and laws (including equalities, safeguarding, communication and mental capacity).

This guideline is for:

health and care practitioners
health and care staff involved in planning and delivering services
commissioners

The recommendations bring together:

existing national and international guidance and policies
advice from specialists working in the NHS from across the UK. These include people with expertise and experience of treating patients for the specific health conditions covered by the guidance during the current COVID‑19 pandemic.

NICE has developed these recommendations in direct response to the rapidly evolving situation and so could not follow the standard process for guidance development. The guideline has been developed using the interim process and methods for developing rapid guidelines on COVID-19. The recommendations are based on evidence and expert opinion and have been verified as far as possible. We will review and update the recommendations as the knowledge base and expert experience develops.

1 Communicating with patients including on treatment and care planning

1.1When possible, discuss the risks, benefits and likely outcomes of treatment options with patients with COVID‑19, their families and carers, including to help them:

make informed decisions about their treatment goals and wishes, including treatment escalation plans when appropriate
understand that COVID‑19 pneumonia is caused by a virus, so antibiotics are ineffective unless there is a bacterial co-infection.

1.2Find out if patients have advance care plans or advance decisions to refuse treatment, including 'do not attempt cardiopulmonary resuscitation' decisions.

1.3Use decision support tools (when available). Bear in mind that these discussions may need to take place remotely. Document discussions and decisions clearly, and take account of these in planning care.

1.4Provide patients, their families and carers with information that meets their communication needs (see NHS England's Accessible Information Standard).

1.5Discuss with patients, their families and carers about the options for enrolling in a COVID‑19 clinical trial.

2 Tests to guide decisions about using antibiotics

2.1Consider the following tests to help inform decision making about using antibiotics:

microbiological samples for routine culture and sensitivities (for example, sputum or tracheal aspirate sample, blood culture)
SARS‑CoV2 polymerase chain reaction assay (nasopharyngeal aspirate, nose and throat swabs, or a lower respiratory tract sample if obtainable); see Public Health England's guidance on COVID-19: which samples should be taken)
chest imaging (X‑ray, CT or ultrasound)
full blood count
legionella and pneumococcal antigen tests (urine sample).

2.2There is insufficient evidence to recommend routine procalcitonin testing to guide decisions about antibiotics. Centres already using procalcitonin tests are encouraged to participate in research and data collection (see section 6).

Procalcitonin tests could be useful in identifying whether there is a bacterial infection. However, it is not clear whether they add benefit beyond what is suggested in recommendation 2.1 to guide decisions about antibiotics. The most appropriate threshold for procalcitonin is also uncertain.

2.3Be aware that high C‑reactive protein levels do not necessarily indicate that the pneumonia is due to bacteria rather than COVID‑19.

Published data and clinical opinion suggest that many patients with COVID‑19 have raised C‑reactive protein levels, meaning that this does not necessarily indicate that there is a bacterial infection.

3 Initial approach to antibiotic treatment choices

When to start antibiotics
Antibiotic choice

3.1Be aware that:

When a patient first presents with suspected pneumonia, it is difficult to differentiate between COVID‑19 pneumonia and bacterial pneumonia on clinical features alone (see recommendations 4.2 and 4.3).
During the COVID‑19 pandemic to date most pneumonia has been viral. Evidence so far suggests that bacterial co-infection occurs in less than about 10% of patients with COVID‑19. But patients in critical care have an increased likelihood of bacterial infection compared with patients in other hospital wards or settings.
Because COVID‑19 pneumonia is caused by a virus, antibiotics are ineffective unless there is a bacterial co-infection.
Inappropriate antibiotic use may reduce their availability, and indiscriminate use may lead to Clostridioides difficile infection and antimicrobial resistance.

When to start antibiotics

3.2If there is confidence that the clinical features are typical for COVID‑19, it is reasonable not to start empirical antibiotics.

3.3Empirical antibiotics should be started if there is clinical suspicion of bacterial infection, including characteristic symptoms and localised chest findings. A neutrophil count outside the normal range or lobar consolidation on chest imaging may suggest a bacterial infection but their absence does not exclude it. When a decision to start antibiotics has been made:

Start empirical antibiotic treatment as soon as possible after establishing a diagnosis of pneumonia, and certainly within 4 hours.
Do not wait for microbiological test results.
Start treatment within 1 hour if the patient has suspected sepsis and meets any of the high-risk criteria for this outlined in the NICE guideline on sepsis.

Antibiotic choice

3.4To guide decision making about antibiotics, use:

antibiotic prescribing table 1 for patients with suspected community-acquired pneumonia (that is, pneumonia that has developed before or within 48 hours of admission)
antibiotic prescribing table 2 for patients with suspected hospital acquired pneumonia (that is, pneumonia that develops 48 hours or more after admission and that was not incubating at admission).

3.5When choosing antibiotics, take account of:

local antimicrobial resistance data and
other factors such as their availability.

3.6For patients who are already taking an antibiotic that was started in the community for suspected pneumonia:

review the antibiotic choice and
change the antibiotic in line with antibiotic prescribing table 1, if appropriate.

3.7Give oral antibiotics if the patient can take oral medicines and their condition is not severe enough to need intravenous antibiotics.

3.8Seek specialist advice on antibiotic treatment for patients who:

are immunocompromised
have a history of infection with resistant organisms
have a history of repeated infective exacerbations of lung disease
are pregnant
are in critical care.

**Table 1 Antibiotics for people 18 and older with suspected community-acquired pneumonia**
Empirical treatment	Antibiotics and dosage (oral doses are for immediate-release medicines)
Oral antibiotics for moderate or severe pneumonia	Options include: Doxycycline: 200 mg on first day, then 100 mg once a day Co‑amoxiclav: 500 mg/125 mg three times a day with Clarithromycin: 500 mg twice a day In severe pneumonia, and if the other options are unsuitable: Levofloxacin: 500 mg once or twice a day (consider the safety issues with fluoroquinolones)
Intravenous antibiotics for moderate or severe pneumonia	Options include: Co-amoxiclav: 1.2 g three times a day with Clarithromycin: 500 mg twice a day Cefuroxime: 750 mg three or four times a day (increased to 1.5 g three times a day if infection is severe) with Clarithromycin: 500 mg twice a day In severe pneumonia and if the other options are unsuitable: Levofloxacin: 500 mg once or twice a day (consider the safety issues with fluoroquinolones)

See the BNF for appropriate use and dosing in specific populations, for example, for hepatic impairment, renal impairment, pregnancy and breast-feeding, and when administering intravenous antibiotics.

There are no validated tools to assess the severity of community-acquired pneumonia in the context of the COVID‑19 pandemic; severity should be based on clinical judgement.

Consult a local microbiologist for alternative options, including for pregnant women.

If there is a penicillin allergy, avoid using co‑amoxiclav and use cefuroxime with caution.

For safety issues with fluoroquinolones, see the Medicines and Healthcare products Regulatory Agency advice. This covers restrictions and precautions for using fluoroquinolone antibiotics because of very rare reports of disabling and potentially long-lasting or irreversible side effects affecting musculoskeletal and nervous systems. Warnings include: stopping treatment at the first signs of a serious adverse reaction (such as tendonitis), prescribing with special caution for people over 60 years and avoiding coadministration with a corticosteroid (March 2019).

**Table 2 Antibiotics for people 18 and older with suspected hospital‑acquired pneumonia**
Empirical treatment	Antibiotics and dosage (oral doses are for immediate-release medicines)
Oral antibiotics for non-severe pneumonia when there is not a higher risk of resistance	Options include: Doxycycline: 200 mg on first day, then 100 mg once a day Co-amoxiclav: 500 mg/125 mg three times a day Co-trimoxazole: 960 mg twice a day (see the BNF for information on monitoring of patient parameters) If the other options are unsuitable: Levofloxacin: 500 mg once or twice a day (consider the safety issues with fluoroquinolones)
Intravenous antibiotics for severe pneumonia (for example, symptoms or signs of sepsis or ventilator-associated pneumonia) or when there is a higher risk of resistance	Options include: Piperacillin with tazobactam: 4.5 g three times a day, increased to 4.5 g four times a day if infection is severe Ceftazidime: 2 g three times a day If the other options are unsuitable: Levofloxacin: 500 mg once or twice a day(use a higher dosage if infection is severe; consider the safety issues with fluoroquinolones)
Antibiotic to be added if meticillin-resistant Staphylococcus aureus infection is suspected or confirmed (dual therapy with an intravenous antibiotic listed above)	Vancomycin: 15 mg/kg to 20 mg/kg two or three times a day intravenously, adjusted according to serum vancomycin concentration. Maximum 2 g per dose (see the BNF for information on patient parameter and therapeutic drug monitoring) Teicoplanin: Initially 6 mg/kg every 12 hours for 3 doses intravenously, then 6 mg/kg once a day (see the BNF for information on patient parameter and therapeutic drug monitoring) Linezolid: 600 mg twice a day orally or intravenously (with specialist advice only; see the BNF for information on monitoring of patient parameters)

See the BNF for appropriate use and dosing in specific populations, for example, for hepatic impairment, renal impairment, pregnancy and breast-feeding, and when administering intravenous antibiotics.

There are no validated tools to assess the severity of hospital-acquired pneumonia in the context of the COVID-19 pandemic; severity should be based on clinical judgement.

Consult a local microbiologist for alternative options, including for pregnant women.

If there is a penicillin allergy, avoid using co‑amoxiclav and piperacillin with tazobactam, and use cefuroxime and ceftazidime with caution.

Higher risk of resistance includes symptoms or signs starting more than 5 days after hospital admission, relevant comorbidity such as severe lung disease or immunosuppression, recent use of broad-spectrum antibiotics, colonisation with multidrug-resistant bacteria, and recent contact with a health or social care setting before current admission.

For antibiotics not licensed for hospital-acquired pneumonia (co-trimoxazole, levofloxacin), use would be off-label. See NICE's prescribing medicines for more information.

For safety issues with fluoroquinolones, see the Medicines and Healthcare products Regulatory Agency advice. This covers restrictions and precautions for using fluoroquinolone antibiotics because of very rare reports of disabling and potentially long-lasting or irreversible side effects affecting musculoskeletal and nervous systems. Warnings include: stopping treatment at the first signs of a serious adverse reaction (such as tendonitis), prescribing with special caution for people over 60 years and avoiding coadministration with a corticosteroid (March 2019).

4 Assessing the ongoing need for antibiotics

When to stop antibiotics
Continuing antibiotics

4.1Review all antibiotics at 24 to 48 hours or as soon as test results are available.

When to stop antibiotics

4.2Use the following signs, symptoms and test results to help inform the overall clinical assessment and decision about when to safely stop antibiotics:

no evidence of bacterial infection in blood, urine or sputum samples
a positive SARS‑CoV2 polymerase chain reaction (PCR) assay
fever resolved or resolving
symptoms and blood test results (particularly lymphopenia) consistent with COVID‑19 pneumonia
chest imaging (plain X‑ray, CT scan or lung ultrasound) consistent with COVID‑19 pneumonia (see recommendation 4.3).

4.3Be aware that the 3 patterns on CT‑chest imaging consistent with COVID‑19 pneumonia according to stage of illness (from symptom onset) are:

early (0 to 2 days): normal or rounded ground-glass opacities
intermediate (5 to 10 days): crazy-paving opacities
late (more than 10 days): consolidation. Chest imaging changes are bilateral in most patients (more than 60%), with the lung periphery and lower lobes being most involved. Early ground-glass appearances may not be visible on plain chest X‑rays (follow NHS England's guide on management of persons admitted to hospital with suspected COVID-19 infection).

Continuing antibiotics

4.4Continue antibiotics if there is clinical or microbiological evidence of bacterial infection, regardless of SARS‑CoV2 PCR test results.

4.5Think about continuing antibiotics if the SARS‑CoV2 PCR test is positive but clinical features are not typical for COVID‑19 pneumonia.

4.6If antibiotics are continued:

review antibiotic choice based on microbiological test results and switch to a narrower spectrum antibiotic when appropriate.
give them for a total of 5 days, and then stop them unless there is a clear indication to continue (see recommendation 5.2)
review intravenous antibiotic use within 48 hours and think about switching to oral antibiotics (in line with prescribing table 1 and table 2).

5 Reassessment and specialist advice

5.1Reassess patients if their symptoms do not improve as expected, or worsen rapidly or significantly.

5.2Seek specialist advice if:

there is a suspicion that the patient has an infection with multidrug-resistant bacteria and may need a different antibiotic, or
there is clinical or microbiological evidence of infection and the patient's condition does not improve as expected after 48 to 72 hours of antibiotic treatment.

6 Research recommendations

6.1Further research is recommended to:

help improve understanding about the value added by procalcitonin testing when used with clinical judgement
guide decisions about stopping antibiotics for people admitted to hospital with pneumonia in the context of the COVID‑19 pandemic.

Suggested PICO (Population, Intervention, Comparator, Outcome)
P: Adults admitted to hospital with suspected COVID‑19 pneumonia I: Procalcitonin-guided antibiotic therapy C: Antibiotic regimen according to the NICE rapid guideline on COVID‑19: antibiotics for pneumonia in adults in hospital (without the use of procalcitonin) O: Antibiotic use or 28‑day mortality or admission to critical care

ISBN: 978-1-4731-3778-3

Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

6. Joint statement: Community-based prescribing for COVID-19 symptoms

Published 14 April 2020

On 3 April, National Institute for Health and Care Excellence (NICE) produced a rapid guideline on managing coronavirus (COVID-19) symptoms (including at the end of life) in the community. This includes advice on managing symptoms of breathlessness.

…the guideline recommends considering an opioid and benzodiazepine combination for patients with coronavirus who are dying, are distressed and suffering moderate to severe breathlessness.

These drugs do not currently have a UK marketing authorisation for this use. We know that some clinicians are worried about how this guideline fits with GMC and MHRA advice about the use of medicines that are unlicensed or outside the terms of their existing license (‘off-label’) .

We want practitioners to know that it is entirely appropriate to follow these guidelines and that we would not have concerns about prescribing decisions based upon them.

GMC prescribing guidance is clear that you may prescribe unlicensed medicines where this is necessary to meet the specific needs of the patient and there is sufficient evidence or experience of using the medicine to demonstrate its safety and efficacy. You must give patients (or their carers) sufficient information about the medicines you propose to prescribe to allow them to make an informed decision. You must always answer questions from patients (or their carers) about medicines fully and honestly.

GMC end of life care guidance is clear that you 'must also give early consideration to the patient’s palliative care needs, and take steps to manage any pain, breathlessness, agitation or other distressing physical or psychological symptoms that they may be experiencing, as well as keeping their nutrition and hydration status under review.'

…..the NICE guidance is clear that sedation and opioid use should not be withheld through fear of causing respiratory depression.

https://www.gmc-uk.org/news/news-archive/joint-statement--community-based-prescribing-for-covid-19-symptoms

https://web.archive.org/web/20200501111044/https://www.nice.org.uk/guidance/ng173

11. NG163 COVID rapid response guideline

NICE guideline Published: 3 April 2020

www.nice.org.uk/guidance/ng163

3.2 When managing key symptoms of COVID-19 in the last hours and days of life, follow the relevant parts of NICE guideline on care of dying adults in the last days of life. This includes pharmacological interventions and anticipatory prescribing. Note that symptoms can change, and patients can deteriorate rapidly in a few hours or less.

4.1 Be aware that older patients or those with comorbidities, frailty, impaired immunity or a reduced ability to cough and clear secretions are more likely to develop severe pneumonia. This could lead to respiratory failure and death.

6.3 For patients with signs or symptoms of pneumonia see the NICE COVID-19 rapid guideline on managing suspected or confirmed pneumonia in adults in the

6.5 Consider an opioid and benzodiazepine combination (see tables 4 and 5) for patients with COVID-19 who:

• are at the end of life and

• have moderate to severe breathlessness and

• are distressed.

Consider concomitant use of an antiemetic and a regular stimulant laxative. At the time of publication (April 2020), opioids and benzodiazepines did not have a UK marketing authorisation for moderate to severe breathlessness (see the General Medical Council's guidance on prescribing unlicensed medicines for further information).

Table 4 End-of-life treatments for managing breathlessness for patients aged 18 years and over

Clinical scenario

Opioid naive(not currently taking opioids) and able to swallow

Already taking regular opioidsfor other reasons (for

example, pain relief)

Treatment

Oral treatment

Morphine sulfate immediate-release 2.5 mg to 5 mg every 2 to 4 hours as required or

morphine sulfate modified-release 5 mg twice a day, increased as necessary (maximum 30 mg daily)

Oral treatment

Morphine sulfate immediate-release 5 mg to 10 mg every 2 to 4 hours as required or

one twelfth of the 24-hour dose for pain, whichever is greater

Parenteral treatment

Morphine sulfate 1 mg to 2 mg subcutaneously every 2 to 4 hours as

Unable to swallow required, increasing the dose as necessary

If needed frequently (more than twice daily), a subcutaneous infusion via a

syringe driver may be considered (if available), starting with morphine sulfate 10 mg over 24 hours

Special considerations

See BNF for more details on formulations and dosages of morphine sulfate. If breathlessness is not continuous, intermittent opioid dosing may be appropriate

If estimated glomerular filtration rate (eGFR) is less than 30 ml per minute, use equivalent doses of oxycodone instead of morphine sulfate (see Prescribing in palliative care in the BNF for more details)

Consider concomitant use of an antiemetic (such as haloperidol) and a regular stimulant laxative (such as senna)

Continue with non-pharmacological strategies for managing breathlessness when starting an opioid

Opioid patches should not routinely be used in patients who are opioid naive because of the time it takes for the medicine to get to steady state for clinical effect and the high morphine equivalence (see Prescribing in palliative care in the BNF for more details)

Add a benzodiazepine if required

For breathlessness and anxiety: lorazepam 0.5 mg sublingually when required (maximum 4 mg daily)

Reduce the dose to 0.25 mg to 0.5 mg in elderly or debilitated patients (maximum 2 mg in 24 hours)

For associated agitation or distress: midazolam 2.5 mg to 5 mg subcutaneously when required (see BNF for more details on dosages)

Sedation and opioid use should not be withheld because of a fear of causing respiratory depression

Notes: At the time of publication (April 2020), opioids and benzodiazepines did not have a UK marketing authorisation for this indication or route of administration (see General Medical Council's guidance on prescribing unlicensed medicines for further information).

Dosages may need to be adjusted because some patients dying of COVID-19 may need higher doses to achieve symptom relief. Others may need lower doses because of their size or frailty.

Seek specialist advice for patients under 18 years old.

Table 5 Treatments in the last days and hours of life for managing breathlessness for patients aged 18 years and over

Treatment

Opioid

Benzodiazepineif required in addition to opioid

Add parenteralmorphine

or midazolamif required

Dosage

Morphine sulfate 10 mg over 24 hours via a syringe driver, increasing stepwise to morphine sulfate 30 mg over 24 hours as required

Midazolam 10 mg over 24 hours via the syringe driver, increasing stepwise to midazolam 60 mg over 24 hours as required

Morphine sulfate 2.5 mg to 5 mg subcutaneously as required Midazolam 2.5 mg subcutaneously as required.

(See BNF for more details on dosages).

Special considerations

Consider concomitant use of an antiemetic (such as haloperidol) and a regular stimulant laxative (such as senna).

Continue with non-pharmacological strategies for managing breathlessness when starting an opioid.

Sedation and opioid use should not be withheld because of an inappropriate fear of causing respiratory depression.

Notes: At the time of publication (April 2020), opioids and benzodiazepines did not have a UK marketing authorisation for this indication or route of administration (see General Medical Council's guidance on prescribing unlicensed medicines for further information).

7 Managing anxiety, delirium and agitation We will review and update these recommendations on a regular basis.

7.3 Consider trying a benzodiazepine to manage anxiety or agitation (see table 6 for treatments for managing anxiety, delirium and agitation).

Table 6 Treatments for managing anxiety, delirium and agitation in patients aged 18 years and over

Treatment

Anxiety or agitation and able to swallow:

lorazepam tablets

Dosage

Lorazepam 0.5 mg to 1 mg 4 times a day as required (maximum 4 mg in 24 hours)

Reduce the dose to 0.25 mg to 0.5 mg in elderly or debilitated patients (maximum 2 mg in 24 hours)

Oral tablets can be used sublingually (off-label use)

Anxiety or agitation and unable to swallow: midazolam injection

Delirium and able to swallow:haloperidol tablets

Page 16 of 19

COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community (NG163)

9 Prescribing anticipatory medicines for patients with COVID-19

For information about prescribing medicines at the end of life see the BNF's prescribing in palliative care.

9.1 When prescribing and supplying anticipatory medicines at the end of life:

• Take into account potential waste, medicines shortages and lack of administration equipment by prescribing smaller quantities or by prescribing a different medicine, formulation or route of administration when appropriate.

• If there are fewer health and care staff you may need to prescribe subcutaneous, rectal or long-acting formulations, and carers or family members may need to administer them.

9.2 Consider different routes for administering medicines if the patient is unable to take or tolerate oral medicines, such as sublingual or rectal routes, or subcutaneous injections.

AQSXAAAAAAAAAAAAAAAAAAAAA

Page 18 of 19

COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community (NG163)

10 Healthcare workers

10.1 All healthcare workers involved in receiving, assessing and caring for patients who have known or suspected or COVID-19 should follow UK government guidance for infection prevention and control. This contains information on using personal protective equipment (PPE), including visual and quick guides for putting on and taking off PPE.

ISBN: 978-1-4731-3754-7

Page 19 of 19

12. NG 31 Care of dying adults in the last days of life

NICE guideline

Published: 16 December 2015

www.nice.org.uk/guidance/ng31

Care of dying adults in the last days of life (NG31)

Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Page 2 of 32

Care of dying adults in the last days of life (NG31)

Contents

Overview .................................................................................................................................... 4

Who is it for? ........................................................................................................................................ 4

Context ....................................................................................................................................... 5

Recommendations ..................................................................................................................... 7

1.1 Recognising when a person may be in the last days of life ....................................................... 7

1.2 Communication .............................................................................................................................. 8

1.3 Shared decision-making ............................................................................................................... 10

1.4 Maintaining hydration ................................................................................................................... 12

1.5 Pharmacological interventions ..................................................................................................... 14

1.6 Anticipatory prescribing ................................................................................................................ 20

Implementation: getting started .............................................................................................. 22

The challenge: recognising dying and communicating effectively ................................................ 22

The challenge: maintaining hydration ............................................................................................... 24

The challenge: anticipatory prescribing ............................................................................................ 25

Need more help? ................................................................................................................................. 26

Recommendations for research ............................................................................................... 27

1 Recognising dying ............................................................................................................................ 27

2 Agitation and delirium ...................................................................................................................... 28

3 Noisy respiratory secretions ........................................................................................................... 28

4 Anticipatory prescribing .................................................................................................................. 29

Finding more information and committee details ................................................................... 31

Update information ................................................................................................................... 32

Page 3 of 32

Care of dying adults in the last days of life (NG31)

This guideline is the basis of QS144.

This guideline should be read in conjunction with NG142.

Overview

This guideline covers the clinical care of adults (18 years and over) who are dying during the last 2 to 3 days of life. It aims to improve end of life care for people in their last days of life by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity. The guideline covers how to manage common symptoms without causing unacceptable side effects and maintain hydration in the last days of life.

Who is it for?

• Health and social care professionals caring for people who are dying, including those working in primary care, care homes, hospices, hospitals and community care settings such as people's own homes

• Commissioners and providers of care for people in the last days of life

• People who are dying, their families, carers and other people important to them

Page 4 of 32

Care of dying adults in the last days of life (NG31)

Context

Without an evidence-based approach to the care of dying people, there is a danger of placing tradition and familiar policies before the needs of individuals and families. The Liverpool Care Pathway (LCP) for the Care of the Dying Adult and its numerous local derivatives were widely adopted in the NHS and UK hospices until 2014. Although the LCP was designed to bring values of 'good' end of life care from the hospice movement to mainstream hospitals and elsewhere, it met with increasing criticism from the public, healthcare professions and the media. There were 3 main areas of concern:

• recognising that a person was dying was not always supported by an experienced clinician and not reliably reviewed, even if the person may have had potential to improve

• the dying person may have been unduly sedated as a result of injudiciously prescribed symptom control medicines

• the perception that hydration and some essential medicines may have been withheld or withdrawn, resulting in a negative effect on the dying person.

These were not necessarily a direct consequence of following the LCP, but often happened because of poor or indiscriminate implementation and a lack of staff training and supervision.

This guideline responds to a need for an evidence-based guideline for the clinical care of the dying adult throughout the NHS. It is focused on care needed when a person is judged by the multiprofessional clinical team to be within a few (2 to 3) days of death. This is different from other important NHS initiatives labelled 'end of life care' which are aimed at improving care for people in the last year or so of a chronic condition.

The guideline is intended for all healthcare professionals and other care providers who might be involved in the care of a person who is nearing death in any NHS setting. It is specifically aimed at non-specialists working in primary care or in care homes, and healthcare professionals working in a wide range of clinical specialties who do not have specialist level training in end of life care. It will also provide a baseline for standards of care in settings that specialise in caring for people who are dying, such as non-NHS palliative care units and hospices.

Page 5 of 32

Care of dying adults in the last days of life (NG31)

The ways in which people die and how long this takes varies widely, mostly because of the underlying diseases responsible but also the person's robustness or frailty, and their social setting. Some people remain mobile and largely self-caring, and can continue to take oral medication and eat and drink up until their death. Others may die suddenly and unexpectedly after a significant trauma or catastrophic medical event. Some people may never experience any of the symptoms addressed in the guideline. People with progressive cardiac, pulmonary or neurological disorders, dementia, some forms of cancer or who have had a stroke may spend several weeks or months in a gradual or intermittent decline. Although the guideline focuses on the people who are thought to be in the last few days of life, for many people, especially those in a gradual decline, the principles of communication, shared decision-making and pharmacological care can be applied far earlier in their care. The recommendations apply to all people at the end of life, whether they are conscious or unconscious.

For some people who are entering the last days of life, mental capacity to understand and engage in shared decision-making may be limited. This could be temporary or fluctuating, for example it may be caused by delirium associated with an infection or a biochemical imbalance such as dehydration or organ failure, or it could be a permanent loss of capacity from dementia or other similar irreversible conditions. The guideline complements, but does not replace the healthcare professional and other's duty to comply with the Mental Capacity Act. It also makes clear the duties of the multiprofessional team regarding communication and involving those people important to the dying person.

This guideline provides recommendations to help healthcare professionals to recognise when a person is entering the last days of life or may have stabilised or be improving even temporarily; to communicate and share decisions respectfully with the dying person and people important to them; and to manage hydration and commonly experienced symptoms to maintain the person's comfort and dignity without causing unacceptable side effects.

Page 6 of 32

Care of dying adults in the last days of life (NG31)

Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.1 Recognising when a person may be in the last days of life

These recommendations are intended to help healthcare professionals to recognise when a person may be entering the last days of their life, or if they may be deteriorating, stabilising or improving even temporarily. It can often be difficult to be certain that a person is dying. The recommendations supplement the individual clinical judgement that is needed to make decisions about the level of certainty of prognosis and how to manage any uncertainty.

1.1.1 If it is thought that a person may be entering the last days of life, gather and document information on:

• the person's physiological, psychological, social and spiritual needs

• current clinical signs and symptoms

• medical history and the clinical context, including underlying diagnoses

• the person's goals and wishes

• the views of those important to the person about future care.

1.1.2 Assess for changes in signs and symptoms in the person and review any

Page 7 of 32

Care of dying adults in the last days of life (NG31)

investigation results that have already been reported that may suggest a person is entering the last days of life. These changes include the following:

• signs such as agitation, Cheyne–Stokes breathing, deterioration in level of consciousness, mottled skin, noisy respiratory secretions and progressive weight loss

• symptoms such as increasing fatigue and loss of appetite

• functional observations such as changes in communication, deteriorating mobility or performance status, or social withdrawal.

1.1.3 Be aware that improvement in signs and symptoms or functional observations could indicate that the person may be stabilising or recovering.

1.1.4 Avoid undertaking investigations that are unlikely to affect care in the last few days of life unless there is a clinical need to do so, for example, when a blood count could guide the use of platelet transfusion to avoid catastrophic bleeding.

1.1.5 Use the knowledge gained from the assessments and other information gathered from the multiprofessional team, the person and those important to them, to help determine whether the person is nearing death, deteriorating, stable or improving.

1.1.6 Monitor for further changes in the person at least every 24 hours and update the person's care plan.

1.1.7 Seek advice from colleagues with more experience of providing end of life care when there is a high level of uncertainty (for example, ambiguous or conflicting clinical signs or symptoms) about whether a person is entering the last days of life, may be stabilising or if there is potential for even temporary recovery.

1.2 Communication

Please also refer to the recommendations on communication in NICE's guideline on patient experience in adult NHS services.

Healthcare professionals caring for adults at the end of life need to take into consideration

Page 8 of 32

Care of dying adults in the last days of life (NG31)

the person's current mental capacity to communicate and actively participate in their end of life care (for more information see NICE's information on making decisions about your care).

1.2.1 Establish the communication needs and expectations of people who may be entering their last days of life, taking into account:

• if they would like a person important to them to be present when making decisions about their care

• their current level of understanding that they may be nearing death

• their cognitive status and if they have any specific speech, language or other communication needs

• how much information they would like to have about their prognosis

• any cultural, religious, social or spiritual needs or preferences.

1.2.2 Identify the most appropriate available multiprofessional team member to explain the dying person's prognosis. Base this decision on the professional's:

• competence and confidence

• rapport with the person.

1.2.3 Discuss the dying person's prognosis with them (unless they do not wish to be informed) as soon as it is recognised that they may be entering the last days of life and include those important to them in the discussion if the dying person wishes.

1.2.4 Provide the dying person, and those important to them, with:

• accurate information about their prognosis (unless they do not wish to be informed), explaining any uncertainty and how this will be managed, but avoiding false optimism

• an opportunity to talk about any fears and anxieties, and to ask questions about their care in the last days of life

• information about how to contact members of their care team

Page 9 of 32

Care of dying adults in the last days of life (NG31)

• opportunities for further discussion with a member of their care team.

1.2.5 Explore with the dying person and those important to them:

• whether the dying person has an advance statement or has stated preferences about their care in the last days of life (including any anticipatory prescribing decisions or an advance decision to refuse treatment or details of any legal lasting power of attorney for health and welfare)

• whether the dying person has understood and can retain the information given about their prognosis.

1.2.6 Discuss the dying person's prognosis with other members of the multiprofessional care team, and ensure that this is documented in the dying person's record of care.

1.3 Shared decision-making

The recommendations in this section cover shared decision-making in the last days of life. Healthcare professionals caring for adults at the end of life need to take into consideration the person's current mental capacity to engage and actively participate in shared

decision-making on their end of life care (for more information see NICE's information on making decisions about your care).

Please also refer to NICE's guideline on shared decision making.

1.3.1 Establish the level of involvement that the dying person wishes to have and is able to have in shared decision-making, and ensure that honesty and transparency are used when discussing the development and implementation of their care plan.

1.3.2 As part of any shared decision-making process take into account:

• whether the dying person has an advance statement or an advance decision to refuse treatment in place, or has provided details of any legal lasting power of attorney for health and welfare

Care of dying adults in the last days of life (NG31)

• the person's current goals and wishes

• whether the dying person has any cultural, religious, social or spiritual preferences.

1.3.3 Identify a named lead healthcare professional, who is responsible for encouraging shared decision-making in the person's last days of life. The named healthcare professional should:

• give information about how they can be contacted and contact details for relevant out-of-hours services to the dying person and those important to them

• ensure that any agreed changes to the care plan are understood by the dying person, those important to them, and those involved in the dying person's care.

Providing individualised care

1.3.4 Establish as early as possible the resources needed for the dying person (for example, the delivery of meals, equipment, care at night, volunteer support or assistance from an organisation) and their availability.

1.3.5 In discussion with the dying person, those important to them and the multiprofessional team, create an individualised care plan. The plan should include the dying person's:

• personal goals and wishes

• preferred care setting

• current and anticipated care needs including:

－ preferences for symptom management

－ needs for care after death, if any are specified

• resource needs.

Care of dying adults in the last days of life (NG31)

1.3.6 Record individualised care plan discussions and decisions in the dying person's record of care and share the care plan with the dying person, those important to them and all members of the multiprofessional care team.

1.3.7 Continue to explore the understanding and wishes of the dying person and those important to them, and update the care plan as needed. Recognise that the dying person's ability and desire to be involved in making decisions about their care may change as their condition deteriorates or as they accept their prognosis.

1.3.8 While it is normally possible and desirable to meet the wishes of a dying person, when this is not possible explain the reason why to the dying person and those important to them.

1.3.9 Ensure that shared decision-making can be supported by experienced staff at all times. Seek further specialist advice if additional support is needed.

1.4 Maintaining hydration

1.4.1 Support the dying person to drink if they wish to and are able to. Check for any difficulties, such as swallowing problems or risk of aspiration. Discuss the risks and benefits of continuing to drink, with the dying person, and those involved in the dying person's care.

1.4.2 Offer frequent care of the mouth and lips to the dying person, and include the management of dry mouth in their care plan, if needed. Offer the person the following, as needed:

• help with cleaning their teeth or dentures, if they would like

• frequent sips of fluid.

1.4.3 Encourage people important to the dying person to help with mouth and lip care or giving drinks, if they wish to. Provide any necessary aids and give them advice on giving drinks safely.

1.4.4 Assess, preferably daily, the dying person's hydration status, and review the

Care of dying adults in the last days of life (NG31)

possible need for starting clinically assisted hydration, respecting the person's wishes and preferences.

1.4.5 Discuss the risks and benefits of clinically assisted hydration with the dying person and those important to them. Advise them that, for someone who is in the last days of life:

• clinically assisted hydration may relieve distressing symptoms or signs related to dehydration, but may cause other problems (see recommendation 1.4.9)

• it is uncertain if giving clinically assisted hydration will prolong life or extend the dying process

• it is uncertain if not giving clinically assisted hydration will hasten death.

1.4.6 Ensure that any concerns raised by the dying person or those important to them are addressed before starting clinically assisted hydration.

1.4.7 When considering clinically assisted hydration for a dying person, use an individualised approach and take into account:

• whether they have expressed a preference for or against clinically assisted hydration, or have any cultural, spiritual or religious beliefs that might affect this documented in an advance statement or an advance decision to refuse treatment

• their level of consciousness

• any swallowing difficulties

• their level of thirst

• the risk of pulmonary oedema

• whether even temporary recovery is possible.

1.4.8 Consider a therapeutic trial of clinically assisted hydration if the person has distressing symptoms or signs that could be associated with dehydration, such as thirst or delirium, and oral hydration is inadequate.

Care of dying adults in the last days of life (NG31)

1.4.9 For people being started on clinically assisted hydration:

• Monitor at least every 12 hours for changes in the symptoms or signs of dehydration, and for any evidence of benefit or harm.

• Continue with clinically assisted hydration if there are signs of clinical benefit.

• Reduce or stop clinically assisted hydration if there are signs of possible harm to the dying person, such as fluid overload, or if they no longer want it.

1.4.10 For people already dependent on clinically assisted hydration (enteral or parenteral) before the last days of life:

• Review the risks and benefits of continuing clinically assisted hydration with the person and those important to them.

• Consider whether to continue, reduce or stop clinically assisted hydration as the person nears death.

1.5 Pharmacological interventions

Providing appropriate non-pharmacological methods of symptom management is an important part of high-quality care at the end of life, for example, re-positioning to manage pain or using fans to minimise the impact of breathlessness, but this has not been addressed in this guideline. This section focuses on the pharmacological management of common symptoms at the end of life and includes general recommendations for

non-specialists prescribing medicines to manage these symptoms.

1.5.1 When it is recognised that a person may be entering the last days of life, review their current medicines and, after discussion and agreement with the dying person and those important to them (as appropriate), stop any previously prescribed medicines that are not providing symptomatic benefit or that may cause harm.

1.5.2 When involving the dying person and those important to them in making decisions about symptom control in the last days of life:

• Use the dying person's individualised care plan to help decide which

Care of dying adults in the last days of life (NG31)

medicines are clinically appropriate.

• Discuss the benefits and harms of any medicines offered.

1.5.3 When considering medicines for symptom control, take into account:

• the likely cause of the symptom

• the dying person's preferences alongside the benefits and harms of the medicine

• any individual or cultural views that might affect their choice

• any other medicines being taken to manage symptoms

• any risks of the medicine that could affect prescribing decisions, for example prescribing cyclizine to manage nausea and vomiting may exacerbate heart failure.

1.5.4 Decide on the most effective route for administering medicines in the last days of life tailored to the dying person's condition, their ability to swallow safely and their preferences.

1.5.5 Consider prescribing different routes of administering medicine if the dying person is unable to take or tolerate oral medicines. Avoid giving intramuscular injections and give either subcutaneous or intravenous injections.

1.5.6 Consider using a syringe pump to deliver medicines for continuous symptom control if more than 2 or 3 doses of any 'as required' medicines have been given within 24 hours.

1.5.7 For people starting treatment who have not previously been given medicines for symptom management, start with the lowest effective dose and titrate as clinically indicated.

1.5.8 Regularly reassess, at least daily, the dying person's symptoms during treatment to inform appropriate titration of medicine.

1.5.9 Seek specialist palliative care advice if the dying person's symptoms do not

Care of dying adults in the last days of life (NG31)

improve promptly with treatment or if there are undesirable side effects, such as unwanted sedation.

Managing pain

1.5.10 Consider non-pharmacological management of pain in a person in the last days of life.

1.5.11 Be aware that not all people in the last days of life experience pain. If pain is identified, manage it promptly and effectively, and treat any reversible causes of pain, such as urinary retention.

1.5.12 Assess the dying person's level of pain and assess for all possible causes when making prescribing decisions for managing pain.

1.5.13 Follow the principles of pain management used at other times when caring for people in the last days of life, for example, matching the medicine to the severity of pain and, when possible, using the dying person's preferences for how it is given.

1.5.14 For a person who is unable to effectively explain that they are in pain, for example someone with dementia or learning disabilities, use a validated behavioural pain assessment to inform their pain management.

Managing breathlessness

1.5.15 Identify and treat reversible causes of breathlessness in the dying person, for example pulmonary oedema or pleural effusion.

1.5.16 Consider non-pharmacological management of breathlessness in a person in the last days of life. Do not routinely start oxygen to manage breathlessness. Only offer oxygen therapy to people known or clinically suspected to have symptomatic hypoxaemia.

1.5.17 Consider managing breathlessness with:

Care of dying adults in the last days of life (NG31)

• an opioid or

• a benzodiazepine or

• a combination of an opioid and benzodiazepine.

In December 2015, this was an off-label use of opioids and benzodiazepines (both individually and in combination). See NICE's information on prescribing medicines.

Managing nausea and vomiting

1.5.18 Assess for likely causes of nausea or vomiting in the dying person. These may include:

• certain medicines that can cause or contribute to nausea and vomiting

• recent chemotherapy or radiotherapy

• psychological causes

• biochemical causes, for example hypercalcaemia

• raised intracranial pressure

• gastrointestinal motility disorder

• ileus or bowel obstruction.

1.5.19 Discuss the options for treating nausea and vomiting with the dying person and those important to them.

1.5.20 Consider non-pharmacological methods for treating nausea and vomiting in a person in the last days of life.

1.5.21 When choosing medicines to manage nausea or vomiting in a person in the last days of life, take into account:

• the likely cause and if it is reversible

Care of dying adults in the last days of life (NG31)

• the side effects, including sedative effects, of the medicine

• other symptoms the person has

• the desired balancing of effects when managing other symptoms

• compatibility and drug interactions with other medicines the person is taking.

1.5.22 For people in the last days of life with obstructive bowel disorders who have nausea or vomiting, consider:

• hyoscine butylbromide as the first-line pharmacological treatment

• octreotide if the symptoms do not improve within 24 hours of starting treatment with hyoscine butylbromide.

In December 2015, this was an off-label use of both hyoscine butylbromide and octreotide. See NICE's information on prescribing medicines.

Managing anxiety, delirium and agitation

1.5.23 Explore the possible causes of anxiety or delirium, with or without agitation, with the dying person and those important to them. Be aware that agitation in isolation is sometimes associated with other unrelieved symptoms or bodily needs for example, unrelieved pain or a full bladder or rectum.

1.5.24 Consider non-pharmacological management of agitation, anxiety and delirium in a person in the last days of life.

1.5.25 Treat any reversible causes of agitation, anxiety or delirium, for example, psychological causes or certain metabolic disorders (for example renal failure or hyponatraemia).

1.5.26 Consider a trial of a benzodiazepine to manage anxiety or agitation.

1.5.27 Consider a trial of an antipsychotic medicine to manage delirium or agitation.

Care of dying adults in the last days of life (NG31)

1.5.28 Seek specialist advice if the diagnosis of agitation or delirium is uncertain, if the agitation or delirium does not respond to antipsychotic treatment or if treatment causes unwanted sedation.

Managing noisy respiratory secretions

1.5.29 Assess for the likely causes of noisy respiratory secretions in people in the last days of life. Establish whether the noise has an impact on the dying person or those important to them. Reassure them that, although the noise can be distressing, it is unlikely to cause discomfort. Be prepared to talk about any fears or concerns they may have.

1.5.30 Consider non-pharmacological measures to manage noisy respiratory or pharyngeal secretions, to reduce any distress in people at the end of life.

1.5.31 Consider a trial of medicine to treat noisy respiratory secretions if they are causing distress to the dying person. Tailor treatment to the dying person's individual needs or circumstances, using 1 of the following drugs:

• atropine or

• glycopyrronium bromide or

• hyoscine butylbromide or

• hyoscine hydrobromide.

In December 2015, this was an off-label use of atropine, glycopyrronium bromide, hyoscine butylbromide and hyoscine hydrobromide. See NICE's information on prescribing medicines.

1.5.32 When giving medicine for noisy respiratory secretions:

• Monitor for improvements, preferably every 4 hours, but at least every 12 hours.

• Monitor regularly for side effects, particularly delirium, agitation or excessive sedation when using atropine or hyoscine hydrobromide.

Care of dying adults in the last days of life (NG31)

• Treat side effects, such as dry mouth, delirium or sedation (see recommendation 1.4.2, recommendation 1.5.9 and recommendation 1.5.23).

1.5.33 Consider changing or stopping medicines if noisy respiratory secretions continue and are still causing distress after 12 hours (medicines may take up to 12 hours to become effective).

1.5.34 Consider changing or stopping medicines if unacceptable side effects, such as dry mouth, urinary retention, delirium, agitation and unwanted levels of sedation, persist.

1.6 Anticipatory prescribing

1.6.1 Use an individualised approach to prescribing anticipatory medicines for people who are likely to need symptom control in the last days of life. Specify the indications for use and the dosage of any medicines prescribed.

1.6.2 Assess what medicines the person might need to manage symptoms likely to occur during their last days of life (such as agitation, anxiety, breathlessness, nausea and vomiting, noisy respiratory secretions and pain). Discuss any prescribing needs with the dying person, those important to them and the multiprofessional team.

1.6.3 Ensure that suitable anticipatory medicines and routes are prescribed as early as possible. Review these medicines as the dying person's needs change.

1.6.4 When deciding which anticipatory medicines to offer take into account:

• the likelihood of specific symptoms occurring

• the benefits and harms of prescribing or administering medicines

• the benefits and harms of not prescribing or administering medicines

• the possible risk of the person suddenly deteriorating (for example, catastrophic haemorrhage or seizures) for which urgent symptom control may be needed

Care of dying adults in the last days of life (NG31)

• the place of care and the time it would take to obtain medicines.

1.6.5 Before anticipatory medicines are administered, review the dying person's individual symptoms and adjust the individualised care plan and prescriptions as necessary.

1.6.6 If anticipatory medicines are administered:

• Monitor for benefits and any side effects at least daily, and give feedback to the lead healthcare professional.

• Adjust the individualised care plan and prescription as necessary.

Care of dying adults in the last days of life (NG31)

Implementation: getting started

This section highlights 3 areas of the care of dying adults in the last days of life guideline that could have a big impact on practice and be challenging to implement, along with the reasons why change is happening in these areas (given in the box at the start of each area). We identified these with the help of stakeholders and Guideline Committee members (see the section on validation and stakeholder comments for draft guidelines in the guideline manual). The section also gives information on resources to help with implementation.

The challenge: recognising dying and communicating effectively

Recommendation 1.1.2, recommendation 1.2.1, recommendation 1.3.1 and recommendation 1.3.7

Poor communication and not recognising that people are dying were key themes identified by a Parliamentary and Health Service Ombudsman's report, Dying without dignity, which investigated complaints about end of life care. Correctly recognising that a person is in the last days of life may allow opportunities for shared decision-making and prevent unnecessary interventions. Good communication of a dying person's prognosis improves their end of life care and the bereavement experience of those important to them. It can help to ensure that the dying person's expressed wishes are considered and to avoid misunderstandings and unnecessary distress.

Recognising dying

Recognising dying can be challenging for health and care professionals. There is often uncertainty about how long a person has left to live and the signs that suggest that someone is dying are complex and subtle.

Communication

Some health and care professionals are uncomfortable discussing how long someone has left to live, and sometimes do not have the skills and confidence to give difficult news or

Care of dying adults in the last days of life (NG31)

talk about the dying process. Adequate training and continued support is important to help health and care professionals to communicate sensitively and effectively.

Shared decision-making

Effective shared decision-making can help to ensure that people get the right care in the last days of their life. Health and care professionals can help to achieve this if they have the right communication skills, and have a good rapport with the dying person and those important to them.

What can health and care professionals do to help?

Refer to the Leadership Alliance for the Care of Dying People's report, One chance to get it right, for information on existing training for different types of professionals and commissioning advice.

As part of face-to-face learning or joint sessions, use training programmes and guidance to help develop communications skills such as:

• e-Learning for Healthcare's end of life care for all (e-ELCA). Relevant sessions include:

－ Assessment of dying phase and after-death care (02_14)

－ "What will it be like?" – talking about the dying process (03_26)

－ Discussing 'do not attempt CPR' decisions (03_30)

• Royal College of Nursing's Getting it right every time

• General Medical Council's guidance Treatment and care towards the end of life: good practice in decision-making

• Skills for Care's end of life care learning materials

• An advanced clinical communication skills course

• Courses and events provided by voluntary sector organisations such as Living Well Dying Well

Encourage health and care professionals to keep their skills updated as part of their continuing professional development.

Care of dying adults in the last days of life (NG31)

Return to recommendations

The challenge: maintaining hydration

Recommendations 1.4.4, 1.4.5 and 1.4.7

The independent Review of the Liverpool Care Pathway for dying patients highlighted a lack of understanding of the role of hydration during end of life care, which may have contributed to poor care. This guideline aims to ensure that hydration is maintained in the last days of life when needed, to prevent or minimise unwanted symptoms such as dehydration or delirium. When this is not possible by drinking, clinically assisted hydration can be beneficial in some circumstances.

Practice varies widely in the use of clinically assisted hydration at the end of life. Healthcare professionals and people important to the dying person may believe that providing clinically assisted hydration will prolong dying, or that 'withholding' it will hasten death, but there is no evidence for this. Giving clinically assisted hydration may relieve distressing symptoms or signs relating to dehydration but it may also cause pain, discomfort or swelling at the infusion site. Healthcare professionals need to be confident that they can discuss the risks and benefits with the dying person or those important to them before starting clinically assisted hydration.

What can healthcare professionals do to help?

Use the General Medical Council's 2010 guidance on End of life care: clinically assisted nutrition and hydration, which is a good starting point for practitioners.

Use training programmes such as e-Learning for Healthcare's e-ELCA to improve their knowledge and skills in these areas. Relevant sessions include discussing food and fluids (03_31).

What can commissioners do to help?

Ensure that healthcare professionals in all care settings have access to the equipment needed for clinically assisted hydration.

Return to recommendations

Care of dying adults in the last days of life (NG31)

The challenge: anticipatory prescribing

Recommendation 1.6.1

Poorly controlled symptoms can lead to considerable distress for the dying person, and poor symptom control was a key theme identified by the Parliamentary and Health Service Ombudsman's report, Dying without dignity, which investigated complaints about end of life care. An individualised approach to anticipatory prescribing should ensure that the drugs prescribed are appropriate to the anticipated needs of the dying person, and prevent distressing hospital admissions and waste of medicines.

Prescribers may need further training for individualised anticipatory prescribing because it may mean a change in practice. The Review of the Liverpool Care Pathway for dying patients found that a 'proforma' approach to prescribing led to over medication, and there was concern that inappropriate prescription and administration of medicines by inexperienced staff was taking place. The availability of resources may differ between regions as well as between hospital and community settings.

What can healthcare professionals do to help?

Use training programmes such as e-Learning for Healthcare's e-ELCA to improve knowledge and skills in these areas. Relevant sessions include symptom management: last days of life (04_23–04_26).

What can providers do to help?

Ensure that healthcare professionals in all care settings and at all times have access to the medicines that may be needed and are able to get advice from colleagues with experience of end of life care if they need it.

What can commissioners do to help?

Develop agreements with local pharmacies to keep an agreed list of drugs in stock and provide community staff with details of local on-call pharmacies.

Return to recommendation

Care of dying adults in the last days of life (NG31)

Need more help?

Further NICE resources to support implementation are available.

Annual indicators for use in the Quality and Outcomes Framework (QOF) for the UK are available from the NICE menu of indicators.

NICE uptake data has more information about the impact of guideline recommendations and quality standard measures.

The Royal College of Physician's National care of the dying audit of hospitals can help providers to audit their care against national standards and policies.

Care of dying adults in the last days of life (NG31)

Recommendations for research

The Guideline Committee has made the following recommendations for research. The Committee's full set of research recommendations is detailed in the full guideline.

1 Recognising dying

What can multiprofessional teams do to reduce the impact of uncertainty of recognising when a person is entering the last days of life on clinical care, shared decision-making and communication with the dying person and those important to them?

Why this is important

It may be difficult to determine when the dying person is entering the last few days or weeks of life. Predicting the end of life is often inaccurate, and current prognostic tools and models are limited. Some level of uncertainty in recognising when a person is entering the last days of life is likely and is often a challenge to planning care. However, it is crucial to minimise this uncertainty to ensure that it does not prevent key discussions between the healthcare professional and the dying person and those important to them.

It is therefore important to identify how the uncertainty of recognising when a person is entering the last days of life influences information sharing, advanced care planning and the behaviour of healthcare professionals. A mixed-methods approach (quantitative and qualitative evidence) is proposed that aims to explore how different multidisciplinary team interventions can reduce the impact of uncertainty on clinical care, shared

decision-making and communication, specifically on engaging the dying person and those important to them in end of life care discussions. Multidisciplinary team interventions include any different methods of giving feedback, initiating end of life discussions, record keeping or updating care plans, compared with usual care. Outcomes of interest include quality of life, patient or carer satisfaction, changes to clinical care and identification and/ or achievement of patient wishes such as preferred place of death. In addition the barriers and facilitators for the healthcare professionals to manage this uncertainty to best support the dying person and those important to them should be explored.

Care of dying adults in the last days of life (NG31)

2 Agitation and delirium

What is the best way to control delirium, with or without agitation, in the dying person, without causing undue sedation and without shortening life?

Why this is important

People who are entering the last days of life may develop sepsis, dehydration and various biochemical disorders which may lead to the development of delirium. This is characterised by altering levels of consciousness, confusion and possibly hallucinations.

Many of the drugs used to control delirium are classed as sedatives. It can be difficult for inexperienced clinicians to reduce delirium without causing undue sedation. An inappropriately large dose of sedative medication may also compromise respiration. A perceived risk of over-sedation is that the dying person's life may be shortened because of the sedation itself.

Specialists in palliative care are knowledgeable about which drugs to use and in which combinations, and know how to use the correct routes and frequency to achieve reduction in delirium, and of any accompanying agitation, without over-sedating the dying person. However most people who are dying are not under the direct care of such specialists, although they may be called in for advice out-of-hours if the person becomes agitated and this has resource implications for specialist palliative care services.

The research should study how key drugs in UK palliative care practice (such as benzodiazepines and antipsychotics) can be applied in a range of settings in order to reduce delirium and agitation without causing undue sedation or inadvertently shortening life. This is proposed to be conducted as multi-arm, multi-stage interventions using escalating doses over 12-hours as clinically indicated.

3 Noisy respiratory secretions

In people considered to be in the last few hours and days of life, are antisecretory

anti-muscarinic drugs (used alongside nursing interventions, such as repositioning and oropharyngeal suction) better at reducing noisy respiratory secretions and patient, family and carer distress without causing unwanted side effects, than nursing interventions alone?

Care of dying adults in the last days of life (NG31)

Why this is important

It is common for people to experience noisy respiratory secretions at the end of life and the so called 'death rattle' is a predictor of death. The noise can cause considerable distress for people important to the dying person, both at the time and possibly after death, because of concerns that the person may have drowned or suffocated to death. Clinicians may administer subcutaneous anti-muscarinic agents in an attempt to 'dry up' secretions and relieve any distress primarily to people important to the person despite a lack of evidence of any beneficial effect to the patient or improvement in distress levels.

The evidence for the efficacy of pharmacological interventions in managing respiratory secretions is of low quality, and it is not clear if any one drug is more effective than another or if drugs are more effective than non-pharmacological approaches such as repositioning or oropharyngeal suction. Most studies involved low numbers of patients and were primarily based on cancer patients in hospices and so may not reflect the larger numbers of patients dying with non-malignant diseases in hospitals and in community care.

Anti-muscarinic agents may have undesired side effects, such as dry mouth, blurred vision or urinary retention, as well as a cost implication, and it is therefore hard to justify their continued use given the limited evidence base.

A randomised controlled trial is proposed comparing antisecretory anti-muscarinic drugs and nursing care to nursing care alone. Nursing interventions include repositioning, mouth care and education and reassurance for those important to the dying person. Outcomes of interest are subjective and objective measures of reduction in noise level, reduction in distress to the dying person or those important to them and adverse effects.

4 Anticipatory prescribing

What is the clinical and cost effectiveness of anticipatory prescribing for patients dying in their usual place of residence, on patient and carer reported symptoms at end of life?

Why this is important

Anticipatory prescribing can provide access to essential medicines for symptom control at the end of life. Current best practice when it is recognised that someone is entering the final days of life recommends that medicines to manage pain, breathlessness, nausea and

Care of dying adults in the last days of life (NG31)

vomiting, and agitation are prescribed with authorisation for administration if clinically indicated when it is recognised that someone is entering the final days of life. Although their use is relatively widespread, there remains a need to investigate the clinical and cost effectiveness of this approach. Studies undertaken to date have been small-scale

audit-type projects evaluating the use of anticipatory prescriptions and qualitative studies exploring the barriers to uptake.

Uncertainty remains as to the impact of anticipatory prescribing on outcomes such as preferred place of death and symptom control, and also uncertainty as to what should be prescribed.

A cluster randomised controlled trial (randomised by GP practice) is proposed to compare interventions of anticipatory prescribing ('just in case' boxes) with a generic list of medicines or anticipatory prescribing individualised to the patient's expected symptoms, compared with reactive prescribing at the bedside after symptoms have occurred. Outcomes of interest include patient and carer symptom ratings, patient-rated quality of life and healthcare use.

Care of dying adults in the last days of life (NG31)

Finding more information and committee details

To find NICE guidance on related topics, including guidance in development, see the NICE topic page on end of life care.

For full details of the evidence and the guideline committee's discussions, see the full guideline. You can also find information about how the guideline was developed, including details of the committee.

NICE has produced tools and resources to help you put this guideline into practice. For general help and advice on putting our guidelines into practice, see resources to help you put NICE guidance into practice.

Care of dying adults in the last days of life (NG31)

Update information Minor changes since publication

October 2021: We added a link to NICE's guideline on shared decision making in section 1.3.

ISBN: 978-1-4731-1585-9

Health agencies advice that led to murder

Contents

COVID-19 rapid guideline: antibiotics for pneumonia in adults in hospital

Guidance

1 Communicating with patients including on treatment and care planning

2 Tests to guide decisions about using antibiotics

3 Initial approach to antibiotic treatment choices

When to start antibiotics

Antibiotic choice

4 Assessing the ongoing need for antibiotics

When to stop antibiotics

Continuing antibiotics

5 Reassessment and specialist advice

6 Research recommendations

Your responsibility

6. Joint statement: Community-based prescribing for COVID-19 symptoms

11. NG163 COVID rapid response guideline

12. NG 31 Care of dying adults in the last days of life

Navigation menu

Health agencies advice that led to murder

COVID-19 rapid guideline: antibiotics for pneumonia in adults in hospital

Guidance

1 Communicating with patients including on treatment and care planning

2 Tests to guide decisions about using antibiotics

3 Initial approach to antibiotic treatment choices

When to start antibiotics

Antibiotic choice

4 Assessing the ongoing need for antibiotics

When to stop antibiotics

Continuing antibiotics

5 Reassessment and specialist advice

6 Research recommendations

Your responsibility

6. Joint statement: Community-based prescribing for COVID-19 symptoms

11. NG163 COVID rapid response guideline

12. NG 31 Care of dying adults in the last days of life

Navigation menu

Search