Dr Lyn Jenkins, edited by Ruth Waterman

Two contrasting imagined scenarios to illustrate the issues in this blog:

Scenario 15 – How guidelines can help
Scenario 16 – How guidelines can hinder

Love them or hate them, guidelines are a necessary component of medical practice. And with the arrival of the previously unknown disease of Covid-19, we need guidelines more than ever. This includes guidelines for palliative care, as confirmed by the  World Health Organisation in urging the early development of protocols in the context of disasters, including pandemics. [Chapter 4]

In an ideal world, guidelines would be a distillation of the evidence, a blue-print for treatment, a ‘score’ from which the doctor performs the ‘music’ of medicine. But writing guidelines is no easy task considering the mountains of research, some of variable quality, much of it addressing questions of doubtful or no relevance, and a good portion of it not reported due to the questionable actions of interested parties.

Over the past thirty years, there has been some progress in identifying reliable and relevant research, and in summarising in reviews what lessons can be drawn from it. Although this has resulted in smaller mountains – now of systematic reviews – they are mountains nevertheless; and patients and clinicians face daunting tasks trying to get their heads round the key messages for practice or policy. Recognising this, reviews of reviews have been carried out and used to provide even smaller mountains to inform the production of guidelines for clinical practice or policy.

In addition to being of manageable size, guidelines need to communicate their information effectively, so that health care professionals (HCPs) are able to find and absorb the specific guidance they need, and to have the confidence when exercising their judgement for the benefit of each individual patient.

Sometimes circumstances can affect how guidelines are followed. For instance, the shortage of PPE at times in the early stage of this pandemic prevented adherence to the protocols on PPE. A recent rapid review by the Cochrane Collaboration  A recent rapid review by the Cochrane Collaboration looking at factors that influence the ability of HCPs to follow guidelines, makes the point that to be effective and useable, the necessary infrastructure needs to be in place. It also addresses the willingness of HCPs to use guidelines – we are all creatures of habit, and when new evidence comes along, it can be hard to adjust our long-held views and practices. And just occasionally, the opposite occurs, as in the recent hasty and ill-advised adoption of hydroxychloroquine, since discredited as a drug for Covid-19.

With all this in mind, this blog attempts to compare some of the guidelines for palliative care at home that have been produced in response to this pandemic. I focus mainly on symptom relief, tease out the best, and highlight areas requiring further clarification.

Marie Curie has published an excellent overview of all forms of guidance for coronavirus and EOL care, including care at home, which is available at  This comprises guidelines, blogs, webinars and reviews. However such a huge amount of information might pose a challenge for HCPs and carers to digest.

I have therefore selected from this material three major UK sources of detailed guidelines for symptom management: the National Institute of Clinical Excellence (NICE) the Royal College of General Practitioners (RCGP) with the Association for Palliative Medicine (APM)  and NHS Scotland.

I have added two brief guides to medication, from the RCGP and the Australia and New Zealand Society of Palliative Medicine (ANZSPM). I also took a look at two sets of guidance for unpaid carers from Hospice UK and the RCGP.

Detailed Guidelines

The three detailed guidelines discuss the symptoms of breathlessness (all), cough (all), fever (all), delirium (all), pain (RCGP and NHSS) and respiratory secretions (NHSS). Nausea is not covered by any of them.

1. Cough
Hygiene and non-pharmacological (n-p) techniques (such as positioning) are covered only in the RCGP guidelines. The use of codeine and morphine is clearly explained by RCGP, including escalation, but less clearly by NICE and NHSS. Morphine given by the subcutaneous route (s/c) is not included by NICE at all. The use of Sodium cromoglycate is only mentioned by RCGP.

Result: a first rosette to the RCGP.

2. Fever
NICE is confusing about the use of NSAIDs, giving three contradictory links. The RCGP advises not using NSAIDs unless the patient is dying. NHSS gives more detailed advice on regimens for paracetamol, and no restrictions on NSAIDs. None of them refer to rigors (shivering) as in this recent report from Switzerland, which recommends the use of morphine or pethidine.

Result: a first rosette to NHSS.

3. Breathlessness
NICE is clear on n-p techniques but muddled on use of opiates and benzodiazepines, giving several links to be followed. It mentions oxygen to use as a trial if available, and advises avoiding the use of fans; it mentions sublingual lorazepam, but no other sublingual or buccal drugs, and is not in favour of patches.
RCGP includes reversible causes (e.g. superadded bacterial infection, heart failure etc), is good on n-p techniques, very clear on opiates and benzodiazepines, including sublingual lorazepam, and gives good escalation detail. There is nothing on buccal opiates or patches and it advises oxygen only if the patient is hypoxic.
NHSS provides minimal advice on n-p methods, but does mention avoiding fans; makes no mention of oral opioids or patches or sublingual lorazepam, but gives clear, simple instructions on escalation. Their advice on oxygen is unclear.

Result: a second rosette to the RCGP.

4. Delirium
NICE considers anxiety and delirium separately. For anxiety/agitation it recommends oral lorazepam or midazolam s/c, preferably via syringe driver (sd). For delirium, it recommends haloperidol orally and levomepromazine s/c with midazolam if the patient is also anxious. It is clear on dosages and reversible causes.
RCGP concentrates on delirium, mentioning agitation and anxiety as secondary symptoms. The document divides into mild/moderate versus end of life (EOL). Doses are clear. No alternative routes to s/c are offered for EOL care. Reversible causes are covered.
NHSS makes no distinction between delirium, agitation and restlessness and doesn’t mention anxiety. No oral options are offered, and subcutaneous (s/c) is strongly recommended. The guideline is clear on dosage and escalation, but there is no advice about reversible causes.

Result: a first rosette to NICE.

5. Pain
RCGP addresses oral and s/c routes and mentions patches, with clear information on dosage and escalation. NHSS makes a brief comment that ‘pain [is] not a prominent feature of Covid-19’, and links to advice.

Result: a third rosette to RCGP.

6. Respiratory secretions
NHSS recommends three drugs, but without preferences or indications. There is clarity on dosage, but no alternative routes to s/c.

Result: a second rosette to NHSS.

So overall, best in show for Detailed Guidelines is awarded to …… RCGP/APM

with the proviso that their advice on NSAIDs may need to be updated in the light of recent evidence, the section on delirium needs additional advice on treating anxiety and agitation in the absence of delirium, and the new recommendation on rigors should be included. Perhaps nausea needs to be considered as well.

Brief Guidelines

The two versions of short ‘crib-sheet’ guidelines I have considered are from the RCGP, written by Prof Stephen Barclay et al and the Australia and New Zealand Society of Palliative Care [ANZSPC] COVID-19 Special Interest Group Essential PEOLC in the COVID-19 pandemic (2)

At most two pages long, these could be laminated and easily kept to hand.

  1. Medication routes – RCGP stresses the option of sub-lingual and buccal routes, whereas ANZSPC only refers to s/c.
  2. Symptom control – both recommend combinations of drugs to deal with likely combined symptoms, rather than considering them separately – for example dyspnoea plus agitation, or for dyspnoea alone, or with pain/cough. Both refer to control of respiratory secretions.
  3. Drugs – both give guidance for use of morphine and midazolam. RCGP also includes oxycodone, levomepromazine and haloperidol. ANZSPM advises hydromorphone for those with a low Glomerular Filtration Rate (GFR).
  4. Oxygen – not recommended by RCGP and not mentioned by ANZSPM.
  5. Fever – RCGP recommends an NSAID, ANZSPM doesn’t.

I consider the RCGP document to be the most useful, as it includes buccal and sublingual drugs as well as levomepromazine and haloperidol.

Result: a ‘highly commended’  for RCGP.

Advice to relatives and friends

Hospice UK’s  ‘Caring for your dying relative at home with Covid-19’(authored by Prof Ilora Finlay) and the RCGP’s ‘Advice sheet for family or friends giving injections of medication’ (authored by Prof Stephen Barclay) are two documents of essential reading for anyone caring for a friend or relative with Covid at home. The latter informs the former and updates the drugs mentioned, as well as their delivery. They should both be carried by HCPs to give out when required.

Result: both documents get a gold star.


My brief survey of guidelines for palliative care in the community has identified some areas of discordance – on the use of oxygen, alternative routes of medication (the Palliative Care Rapid Review group at CEBM is currently looking into this), NSAIDs, and which drugs to use in certain circumstances. I have identified a good crib-sheet, and excellent advice for home carers. I would expect that teaching modules for the management of palliative care at home in this epidemic are being developed for HCPs, both working and in training, and that the guidelines are being modified regularly in response to feedback from users and new evidence. I consider that the RCGP (with the support of the APM) and Hospice UK should be congratulated for their sterling efforts to produce this high-quality information so quickly.

Two contrasting imagined scenarios to illustrate the issues in this blog:

Scenario 15 – How guidelines can help
Scenario 16 – How guidelines can hinder