In the field medicine, nursing and the allied health professions, end-of-life care (or EoLC) refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal disease condition that has become advanced, progressive and incurable. It is important for healthcare professionals, working in both specialist as well as general healthcare setup, to be aware of what needs to be done, to make the patient most comfortable in the last days of their lives. Obviously, apart from medical aspects, these would also include supporting the emotional as well as social needs of the patient.
In December 2015, NICE came out with the guidelines on Care of dying adults in the last days of life, which deal with the major aspects of end of life care that a healthcare professional should keep in mind. Following are its major recommendations:-
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.
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 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
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.
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.
Monitor for further changes in the person at least every 24 hours and update the person’s care plan.
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.
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 need
- How much information they would like to have about their prognosis
- Any cultural, religious, social or spiritual needs or preferences
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
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.
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
- Opportunities for further discussion with a member of their care team
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
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.
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.
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
- 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. 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
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.
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
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.
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.
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.
Ensure that shared decision-making can be supported by experienced staff at all times. Seek further specialist advice if additional support is needed.
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.
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
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 clinically assisted hydration, respecting the person’s wishes and preferences.
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 below)
- 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
Ensure that any concerns raised by the dying person or those important to them are addressed before starting clinically assisted hydration.
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
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.
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.
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.
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.
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.
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 medicines are clinically appropriate.
- Discuss the benefits and harms of any medicines offered.
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
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.
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.
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, start 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.
Consider non-pharmacological management of pain in a person in the last days of life.
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.
Assess the dying person’s level of pain and assess for all possible causes when making prescribing decisions for managing pain.
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.
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.
Identify and treat reversible causes of breathlessness in the dying person, for example pulmonary oedema or pleural effusion.
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.
Consider managing breathlessness with:
- An opioid or
- A benzodiazepine or
- A combination of an opioid and benzodiazepine
Managing Nausea and Vomiting
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
Discuss the options for treating nausea and vomiting with the dying person and those important to them.
Consider non-pharmacological methods for treating nausea and vomiting in a person in the last days of life.
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
- 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
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
Managing 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. 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.
Consider non-pharmacological management of agitation, anxiety and delirium in a person in the last days of life.
Treat any reversible causes of agitation, anxiety or delirium, for example, psychological causes or certain metabolic disorders (for example, renal failure or hyponatraemia).
Consider a trial of a benzodiazepine to manage anxiety or agitation.
Consider a trial of an antipsychotic medicine to manage delirium or agitation.
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
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 non-pharmacological measures to manage noisy respiratory or pharyngeal secretions, to reduce any distress in people at the end of life.
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
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.
- Treat side effects, such as dry mouth, delirium or sedation (see relevant recommendations above).
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).
Consider changing or stopping medicines if unacceptable side effects, such as dry mouth, urinary retention, delirium, agitation and unwanted levels of sedation, persist.
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.
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.
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
- 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
- The place of care and the time it would take to obtain medicines
Before anticipatory medicines are administered, review the dying person’s individual symptoms and adjust the individualised care plan and prescriptions as necessary.
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.