Box 1.

Recommendations.

Recognising dying
> 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.
> Assess for changes in signs and symptoms in the person and review any available investigation results that may suggest a person is entering the last days of life. Changes might include:
   - 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 social withdrawal.
> Be aware that improvement in signs and symptoms or functional observations could indicate that the person may be stabilising or recovering.
> 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.
> Monitor for further changes in the person at least every 24 hours and update the person’s care plan.
Communication and shared decision making
> 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 communication needs
   - how much information they would like to have about their prognosis
   - any cultural, religious, social or spiritual needs or preferences.
> As part of any shared decision making process take into account:
   - the level of involvement that the dying person wishes to have and is able to have
   - 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
   - the person’s current goals and wishes
   - whether the dying person has any cultural, religious, social or spiritual preferences.
> Identify a named lead healthcare professional, who is responsible for encouraging shared decision making in the person’s last days of life. They should provide their contact details as well as details for how to contact relevant out-of-hours services.
> 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 using honesty and transparency.
Maintaining hydration
> 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.
> 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.
> Assess, preferably daily, the dying person’s hydration status, and review the possible need for starting or continuing clinically assisted hydration, respecting the person’s wishes and preferences.
> 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.
> Consider a therapeutic trial of clinically assisted hydration if the person has or is at risk of distressing symptoms or signs that could be associated with dehydration, such as thirst or delirium, and if oral hydration is inadequate.
> For people on clinically assisted hydration (enteral or parenteral):
   - monitor, at least every 12 hours, for changes in the symptoms or signs of dehydration, and for any evidence of benefit or harm
   - review the risks and benefits of continuing clinically assisted hydration with the person and those important to them
   - continue if there are signs of clinical benefit and reduce or stop if there are signs of possible harm to the dying person, such as fluid overload, or if they no longer want it.
Pharmacological management
> Consider the underlying cause of any distressing symptoms and treat any reversible problems, for example full bladder causing agitation or pain.
> Consider non-pharmacological management of any symptoms in the last few days of life, such as fans to reduce the perception of breathlessness or repositioning to manage respiratory secretions
> 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.
> For people starting treatment, who have not previously been given medicines for symptom management, begin with the lowest effective dose and titrate as clinically indicated.
> Regularly reassess, at least daily, the dying person’s symptoms during treatment to inform appropriate titration of medicine.
> Seek specialist palliative care advice if the dying person’s symptoms do not improve promptly with treatment or if there are undesirable side effects, such as unwanted sedation.
> Pain
   - Follow the principles of pain management used at other times when caring for people in the last days of life. For example, use both non-opioids and opioids at the lowest dose possible to match the severity of pain and balancing against side effects such as sedation, and using the dying person’s preferences for how it is given.
> Breathlessness
   - Do not routinely start oxygen to manage breathlessness. Only offer oxygen therapy to people known or clinically suspected to have symptomatic hypoxaemia.
   - Consider managing breathlessness with:
   • an opioid
   • a benzodiazepine (particularly if there is associated anxiety)
   • a combination of an opioid and benzodiazepine.
> Nausea and vomiting
   - When choosing medicines to manage nausea and vomiting in the last few days of life, take into account:
   • the likely cause and if it is reversible
   • the side effects, including sedation, of the medicine
   • the desired balancing of effects when managing other symptoms
   • compatibility and drug interactions with other medicine.
> Anxiety, delirium and agitation
   - Explore the possible causes of anxiety or delirium, with or without agitation, with the dying person and those important to them and treat any reversible causes if appropriate such as metabolic disorders.
   - Consider a trial of a benzodiazepine to manage anxiety or agitation.
   - Consider a trial of an antipsychotic medicine to manage delirium or agitation.
> Noisy respiratory secretions
   - 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.
   - 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 one of the following drugs:
   • glycopyrronium bromide
   • hyoscine butylbromide
   • hyoscine hydrobromide
   • atropine.
(continued)
> When giving medicine for noisy respiratory secretions:
   - Monitor for improvements, preferably every 4 hours, but at least every 12 hours.
   - Avoid using atropine or hyoscine hydrobromide for people who are at risk of developing delirium, agitation or excessive sedation.
   - Treat side effects, such as dry mouth, delirium or sedation.
> 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) and/or there are unacceptable side effects.
Anticipatory prescribing
> 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.
> Ensure that suitable anticipatory medicines and routes are prescribed as early as possible. Review these medicines as the dying person’s needs change.
> 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, or conversely, the risks of not doing so
   - the possible risk of the person suddenly deteriorating (for example, catastrophic haemorrhage or seizures) for which urgent symptom control may be needed
   - the place of care and the time it would take to obtain medicines.
> 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.