Previous changes

April 2025 — minor update. QOF indicators removed in line with NHS England's 2025 Quality and Outcomes Framework.

December 2023 — minor update. Recommendations relating to COVID-19 infection have been removed from this topic.

June 2023 — minor update.  Replaced a link to the updated Prognostic Indicator Guidance.

July 2022 — minor update. Added new NICE guideline reference in the advice relating to COVID-19.

March 2022 — minor update. Reference to Marie Curie in this topic has been updated to reflect a change in the charity's name. 

March 2021 — reviewed. A literature search was conducted in February 2021 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of this topic. No major changes to recommendations have been made.

August 2020 — minor update. New NICE quality standard QS194 added.

April 2020 — minor update. New management scenario created to provide information regarding COVID-19.  Additional information added about the provisions for anticipatory prescribing during the pandemic conditions. 

July 2015 to October 2016 — reviewed. Literature searches were conducted in September 2016 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of this topic. There have been structural changes to the topic and changes to the recommendations have been updated in line with NICE guidance Care of dying adults in the last days of life [NICE, 2015].

July 2015 — topic title changed to reflect broader topic coverage than specifically cancer care.

July 2014 — minor update. The text has been updated to replace the Liverpool Care Pathway with new standards of care that have been issued by the Leadership Alliance for the Care of Dying People.

June 2013 — minor update. The 2013 QOF options for local implementation have been added to this topic.

September 2012 — reviewed. A literature search was conducted in August 2012 to identify evidence-based guidelines, UK policy, systematic reviews, and key RCTs published since the last revision of this topic. No major changes to recommendations have been made.

April 2012 — minor update. The 2012/2013 QOF indicators have been added to this topic. 

June 2011 — minor update. Information on the End of Life Care Patient Charter from the Royal College of General Practitioners and Royal College of Nursing added to the section on. 

June 2011 — minor update. The 2011/2012 QOF indicators have been added to this topic. 

February 2011 — topic structure revised to ensure consistency across CKS topics — no changes to clinical recommendations have been made.

July 2010 — updated. The recommendations from the General Medical Council's guidance for doctors, Treatment and care towards the end of life: good practice in decision making have been included. Issued in August 2010.

April 2009 — minor update. The agreed changes to the Quality and Outcomes Framework (QOF) for palliative care have been updated. 

August 2007 — minor typographical update to the Clinical Summaries (Management approach, Communication, and Prognostic issues). 

March to June 2007 — this is a new CKS topic developed following a structured literature review. The evidence-base has been reviewed in detail, and recommendations are more clearly justified and transparently linked to the supporting evidence.

New evidence

Evidence-based guidelines

No new evidence-based guidelines since 1 June 2026.

HTAs (Health Technology Assessments)

No new HTAs since 1 June 2026.

Economic appraisals

No new economic appraisals relevant to England since 1 June 2026.

Systematic reviews and meta-analyses

No new systematic reviews or meta-analysis which reach the CKS threshold for inclusion since 1 June 2026.

Primary evidence

No new primary evidence which reaches the CKS threshold for inclusion published since 1 June 2026.

New policies

No new policies since  1 June 2026.

New safety alerts

No new safety alerts since 1 June 2026.

Changes in product availability

No changes in product availability since 1 June 2026.

General palliative care

• Primary care healthcare professionals such as the person's GP and/or district nursing service should be involved as early as possible after a palliative diagnosis.
• Much of the support given to people is from professionals who are not specialists in palliative care. Professionals providing general palliative care services (such as members of the primary care team) should aim to meet the needs of a person and family members/carers within the limits of their knowledge and competence. Seek specialist advice or refer the person to the local multidisciplinary specialist palliative care service for support or advice if needed, depending on clinical judgement.
• The aim of general palliative care is to provide:
  • Information for the person and their family/carers, with signposting to relevant services.
  • Accurate and holistic assessment of a person's needs.
  • Co-ordination of care teams in and out of hours and across boundaries of care.
  • Basic levels of symptom control.
  • Psychological, social, spiritual, and practical support.
  • Open and sensitive communication with the person, their family/carers, and professional colleagues.
    • Effective communication enables professionals to exchange information, plan interventions, and share responsibility for the person's care.
    • Documentation, especially using multidisciplinary records and clinic letters, facilitates communication between professionals.
  • Continuity of care where possible, for example by nominating a 'key worker' who can oversee the person's care.

[Regnard, 2010]

Specialist palliative care

Specialist palliative care services manage complex palliative care problems that cannot be dealt with by general services. Ideally, professionals who are not specialists in palliative care, who care for people with advanced cancer, should have access to specialist advice at all times.

• Specialist palliative care services may be provided by statutory and voluntary organizations. Care may be provided in community, hospital, and hospice settings (the latter for people with complex problems that cannot be managed adequately in other settings).
• The palliative care team may include any or all of the following specialities:
  • Palliative medicine consultants and doctors.
  • Palliative care nurses including nurse specialists and/or Macmillan nurses or Marie Curie nurses. The person and/or family members can self-refer to the nursing teams, or referral can be made from primary care, depending on local availability and referral pathways.
    
    • Macmillan nurses provide support and information to people with cancer and their families. They do not usually provide 'hands-on' care, but give advice to the primary care team, for example about medication for symptom control such as pain, nausea, vomiting, agitation, and/or breathlessness. The person and/or family members can self-refer to the Macmillan nursing team or referral can be made from primary care, depending on local availability.
    • Marie Curie provides nurses who care for terminally ill people and give them the choice of dying at home supported by their families. Marie Curie nurses can provide hands-on care at home through the day or night.
  • Palliative care pharmacists.
  • Physiotherapists.
  • Occupational therapists.
  • Counsellors (including for bereavement support) and/or psychologists.
  • Dietitians.
  • Speech and language therapists. 
  • Social workers.
  • Spiritual advisers.
  • Benefits advisers.
  • Complementary therapists.

[Regnard, 2010; Cherny, 2015]

How should I assess and manage the person's physical symptoms?

• Assess the person's physical needs at key points during the course of the illness (such as at the time of diagnosis, around treatment episodes, as treatments end, at the time of any relapse, and when death is approaching). This should include:
  • Assessing symptoms such as pain, nausea and vomiting, constipation, breathlessness, agitation, and confusion, including any reversible causes.
  • Setting treatment goals.
  • Reviewing the person regularly.
  • Arranging referral to or seek advice from specialist palliative care services if needed.
• Be proactive and ask about symptoms, rather than waiting for the person to report them.
  • Ask about the impact of each symptom on the person's life including time of onset, frequency, duration, severity, exacerbating and relieving factors, and how it affects daily functioning.
  • Be aware that different mechanisms may be responsible for physical symptoms (for example vomiting may be due to hypercalcaemia or gastric outflow obstruction if the person has underlying cancer).
  • Be aware that all symptoms may be worsened by sleep disturbance, exhaustion, anxiety, and/or depression.
• Ensure that any prescribed drug treatment is still necessary and helpful, and aim to deprescribe any medication that is no longer providing symptomatic benefit, such as statins, or that may cause harm. The British Geriatric Society clinical guide Pragmatic prescribing to reduce harm for older people with moderate to severe frailty may be helpful.
  • Do not delay starting treatment as symptoms can become more difficult to manage the longer they are left untreated.
  • If symptoms are persisting, prescribe regular treatment rather than treatment on an 'as required' basis. See the section on Supportive care in the terminal phase for more information.
  • Discuss and agree on achievable treatment goals with the person and family members/carers if appropriate.

How should I assess and manage the person's psychological needs?

• Assess the person's psychological state at key points during the course of the illness (such as at the time of diagnosis, around treatment episodes, as treatments end, at the time of any relapse, and when death is approaching).
• If the person or family members/carers have significant levels of psychological distress, offer prompt referral to the specialist palliative care service for counselling and/or additional psychological support. The appropriate psychological intervention will depend on the person's current and previous history, the level of support available, and their prognosis.
  • Psychological assessments and interventions should be undertaken in a quiet, comfortable, and private setting.
  • Staff providing psychological care should be adequately trained, supervised, and supported.
  • If there is a severe mental health problem, seek urgent or emergency psychiatric intervention, depending on clinical judgement.
  • The Marie Curie (website www.mariecurie.org.uk) information Coping with a terminal diagnosis may be helpful.

How should I assess the person's social needs?

• Assess the person's social needs at key points during the course of the illness (such as at the time of diagnosis, around treatment episodes, as treatments end, at the time of any relapse, and when death is approaching).
  • Be aware that assessment of need can be difficult because some people and family members/carers may be reluctant to ask for help or be unaware of help available.
• Social care and support needs may include:
  • Emotional support.
  • Help with personal care including care at night (such as bathing and dressing), housework, shopping, provision of meals.
  • Practical aids (for example equipment, mobility aids, or wheelchairs).
  • Caring for dependents (such as children or elderly relatives).
  • Advice about family and personal relationships.
  • Advice about work, income, and employment issues and/or any benefits they or their carers are entitled to. The Marie Curie (website www.mariecurie.org.uk) information on Work and terminal illness may be helpful
• Be aware that social support may be provided by local authorities, NHS, or voluntary organizations, such as respite or day care, support groups, volunteer visitors, assisted transport, and bereavement care.

How should I assess the person's religious or spiritual needs?

• Assess the person's spiritual needs at key points during the course of the illness (such as at the time of diagnosis, around treatment episodes, as treatments end, at the time of any relapse, and when death is approaching).
  • Spiritual need relates to a person's search for meaning within their life. Religion is a means of expressing underlying spirituality, but spiritual belief may not always be expressed in a religious way.
• Ensure that the person and family members/carers have access to staff who are sensitive to their spiritual needs.
  • Spiritual support may range from an informal sharing of ideas about life, death, and the ultimate purpose of our existence, to the provision of formalized religious ritual.
• Spiritual support and care for people who are receiving palliative treatment or at the end of life may include:
  • Listening to the person's experience and discussing their questions.
  • Affirming the person's humanity.
  • Protecting the person's self-worth, dignity, and identity.
  • Ensuring that spiritual care is offered as part of a holistic approach to health that also includes psychological, social, and emotional care.
• Be aware that spiritual support and care may be provided by the multidisciplinary specialist palliative care team, appointed spiritual caregivers, and local community resources for spiritual care.

How should I address the needs of the family and carers?

• Offer family members and carers the opportunity for their support and information needs to be assessed separately from the person receiving palliative care. They may have specific concerns such as:
  • Fear of the person dying.
  • Anxiety about an emergency occurring (such as what constitutes an emergency and how to deal with it).
  • Feelings of inadequacy regarding caring for the person at home (such as lack of knowledge about how to make the person comfortable or appropriate handling and lifting techniques).
  • The need to suppress their emotions to protect the person they are caring for.
  • Financial concerns.
  • Altered role and lifestyle.
• Offer family members and carers the opportunity to be involved during clinical reviews and decision-making about treatment and care, depending on the wishes of the person receiving palliative care.
• Ensure that family members and carers are made aware of local sources of information, advice, and support, to address their own needs, especially at demanding times in the person's illness, and/or when extra help may be needed.
  • Be aware that the demands of being a carer and carer stress can sometimes present as physical symptoms, such as fatigue or weight loss.
  • The Marie Curie (website www.mariecurie.org.uk) information Caring for someone with a terminal illness may be helpful.
• Offer additional family/carer support to help with symptom control and address any concerns, if appropriate:
  • Facilitate communication between the person, their family members/carers, and healthcare professionals.
  • Recognize and address areas of stress in other aspects of a person's life, such as work or looking after dependents including children or elderly relatives.
  • Educate about additional skills and knowledge that may be needed to help keep the person comfortable.
  • Discuss aspects of care such as pain management, to reduce anxiety about potential drug addiction or tolerance. See the CKS topic on Palliative cancer care - pain for more information.
  • Encourage the family member/carer to talk about their fears, concerns, uncertainty, and any emotional strain.
  • Provide information about the person's death and what to expect when death is approaching. The Marie Curie website (www.mariecurie.org.uk) has information on End of life stages timeline, What happens in the last weeks of life, and Final moments of life.

How should I assess the person's prognosis and offer advance care planning?

• Discuss with the person their disease status, progression, and estimated prognosis, if they wish.
  • Estimating the person's prognosis may help in planning appropriate treatment and care. If prognosis is not discussed or predictions are inaccurate, the person may make inappropriate treatment decisions, or inadequately prepare for death.
  • The Gold Standards Framework (GSF, website www.goldstandardsframework.org.uk) publication  Proactive Identification Guidance (PIG) can be used by healthcare professionals to estimate prognosis, including the question 'Would you be surprised if this person were to die in the next 6 to 12 months?' to try to identify people nearing the end of their lives.
  • Some people may request not to know their prognosis. This should be respected and they should be given the opportunity to discuss it again at a later date, if they wish.
• Discussing a person's prognosis should involve:
  • Identifying the person's own thoughts regarding their prognosis, particularly if there has been a noticeable deterioration in their condition.
  • Explaining the difficulty of providing an accurate prognosis.
  • Providing an estimate only (for example days, weeks, months, or years), not a guarantee of what will happen. Be aware that risks associated with assessing disease prognosis include:
    • Overestimating the length of survival — families may feel 'robbed' of time with their relative.
    • Underestimating the length of survival — the person and their family may question the credibility of the source of information.
• Offer an opportunity to discuss and document advance care planning with the person.
  • Ask if they would like a family member/carer to be present when making decisions about their care.
  • Discuss their preferences, hopes, and wishes for care, including preferred care setting and preferred place of death.
  • Discuss realistic personal goals, including treatment options and ceilings of care for symptom management. See the section on Supportive care in the terminal phase for more information.
  • Discuss their wishes for hydration, nutrition, and cardiopulmonary resuscitation (CPR).
  • Ask about any needs for care after death, including any expressed views about organ or tissue donation.
  • Review and update the advance care plan as the person's situation or views change.
  • Advise on useful patient and carer information including the GSF Thinking ahead booklet and ACP in 5 simple steps information, and the Marie Curie (website www.mariecurie.org.uk) information Planning your care in advance.
  • The General Medical Council (GMC) publication Treatment and care towards the end of life: good practice in decision making (2024) provides information for healthcare professionals about decision-making, capacity, advance care planning including advance requests for treatment and advance refusals of treatment, nutrition and hydration, CPR, and care after death.

How should I recognize the terminal phase of illness?

It can often be difficult to be certain that a person is dying, but it is essential to recognize the signs of dying in order to appropriately care for people at the end of life. The 'terminal phase' is defined as a period of irreversible decline in functional status prior to death.

• Be aware that the 'terminal phase' may last hours to several days. People are likely to be in the terminal phase of illness when they:
  • Deteriorate day-by-day or more rapidly.
  • Have reduced mobility and become progressively weak, fatigued, without an apparent cause (for example due to underlying hypercalcaemia).
  • Express a realization that they are dying.
  • Have reduced cognition, reduced ability to communicate, or social withdrawal.
  • Have a deterioration in level of consciousness.
  • Are delirious, for example characterized by increased restlessness, confusion, and agitation. See the CKS topic on Delirium for more information.
  • Are bed-bound.
  • Take little food or fluid, and have difficulty taking oral medication.
  • Are peripherally cyanosed, have mottled skin, and are cold to the touch.
  • Have an altered breathing pattern, such as Cheyne-Stokes breathing, noisy rattling breathing, or periods of apnoea.

What supportive care should be offered in the terminal phase?

If a person is felt to be in the last days of life and entering the terminal phase of illness:

• Ask about and assess the person's communication needs and mental capacity:
  • Whether they would like a family member or carer 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. See the section on Assessing prognosis and advance care planning for more information.
  • Their current mental capacity to communicate and actively participate in end of life care and decision-making, including whether they have understood and can retain the information given about their prognosis.
• Provide the dying person and family members/carers 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 concerns, and to ask questions about their care in the last days of life. The Marie Curie (website www.mariecurie.org.uk) patient information What happens in the last weeks of life and the Hospice UK (website www.hospiceuk.org) information Death and dying: what to expect may be helpful.
  • Information about how to contact members of their care team.
  • Opportunities for further discussion with a member of their care team.
• Assess the person's physiological, psychological, social, cultural, religious, or spiritual needs and manage appropriately. See the section on Assessment and management approach for more information.
• Review the advance care planning wishes of the dying person, including any advance statement or preferences about their care in the last days of life (including any anticipatory prescribing decisions, an advance decision to refuse treatment, or details of any legal lasting power of attorney for health and welfare). Recognize that the dying person's ability and desire to be involved in decision-making about their care may change as their condition deteriorates or as they accept their prognosis.
  • Continue to explore the understanding, goals, and wishes of the dying person and those important to them, and update any individualized care plan as needed.
  • It is normally possible and desirable to meet the wishes of a dying person, but when this is not possible, explain the reason why to the dying person and those important to them.
• Support the dying person to drink and maintain hydration if they wish to and are able to.
  • Regularly assess the person's hydration status, level of consciousness, any swallowing problems, risk of aspiration, and their level of thirst.
  • Discuss the risks and benefits of continuing to drink, with the person and family members/carers.
  • Ensure that healthcare professionals and carers offer frequent mouthcare, including frequent sips of fluid; provision of drinking aids if needed; and help with cleaning teeth or dentures. See the CKS topic on Palliative care - oral for more information.
  • Consider a time-limited trial of 'clinically assisted hydration' with subcutaneous infusion of fluids (such as 1 L of normal saline over 24 hours) if the person has distressing symptoms or signs associated with dehydration such as excessive thirst or delirium, respecting the person's wishes and preferences, and any advance statement or advance decision to refuse treatment.
    • Be aware that clinically assisted hydration may relieve distressing symptoms or signs related to dehydration, but may cause additional issues such as fluid overload, or discomfort or swelling at the infusion site. It is uncertain whether clinically assisted hydration prolongs life or extends the dying process, or whether not giving clinically assisted hydration accelerates the dying process.
    • Monitor the person at least every 12 hours for signs of clinical benefit or harm such as fluid overload, and reduce or stop clinically assisted hydration if there are signs of harm or if the person no longer wants it.
    • If a person is already dependent on clinically assisted hydration before the last days of life, review the risks and benefits of continuing it with the person and family members/carers. Consider whether to continue, reduce, or stop clinically assisted hydration as the person approaches death.
    • The General Medical Council (GMC) publication Treatment and care towards the end of life: good practice in decision making (2024) provides information for healthcare professionals about decision-making, capacity, advance care planning including advance requests for treatment and advance refusals of treatment, nutrition and hydration, CPR, and care after death.
• Offer symptom management in the last days of life, to maintain the person's comfort and dignity without causing unacceptable adverse effects, wherever possible:
  • De-prescribe any unnecessary drug treatments which are not providing symptomatic benefit or that may cause harm. The British Geriatric Society clinical guide Pragmatic prescribing to reduce harm for older people with moderate to severe frailty may be helpful.
  • Manage specific common symptoms including any reversible causes. Symptoms may include breathlessness, noisy respiratory secretions, pain, nausea and vomiting, constipation, anxiety, agitation and delirium, and skin issues. See the CKS topics on Delirium, Palliative care - constipation, Palliative care - cough, Palliative care - dyspnoea , Palliative care - malignant skin ulcer, Palliative care - nausea and vomiting, Palliative cancer care - pain , and Palliative care - secretions for more information.
  • Offer non-drug and drug treatments for symptom control, taking into account:
    • The person's place of care and the time it would take to obtain medication and/or equipment.
    • The likelihood of specific symptoms and the likely cause(s) of any symptoms.
    • The dying person's individual preferences.
    • The relative benefits and harms of prescribing medication or not prescribing medication.
    • Any risks of the medication that could affect prescribing decisions, including potential drug interactions and comorbidities.
    • The risk of sudden deterioration (such as catastrophic haemorrhage, airway obstruction, or uncontrolled seizures), for which emergency symptom control may be needed.
    • The most effective route for administering medication tailored to the dying person's condition, including their ability to swallow safely and personal preferences. Consider using the subcutaneous route if the person is unable to take or tolerate oral medication.
• Arrange anticipatory prescribing of medications such as morphine, midazolam, cyclizine, and hyoscine butylbromide for new or developing symptoms so they can be treated without delay.
  • Ensure that the indications and dosage of medication is clearly documented in the person's individualized care plan. Review the individualized care plan and drug prescribing as the person's needs change over time.
  • Start prescribing the lowest effective dose of medication on an 'as required' basis if the person has not previously been given medication for symptom control, and titrate as clinically indicated. Ensure the person is reviewed at least daily to assess symptom response and for any medication adverse effects, to guide the up-titration of medication.
  • Consider using a syringe driver to administer subcutaneous delivery of medication for continuous symptom control, if more than two or three doses of any 'as required' medication have been given within 24 hours.
• Liaise with other members of the multidisciplinary general or specialist palliative care team about the person's care needs and prognosis (including where appropriate, out of hours, on-call services, and emergency services), and ensure that this is documented in the person's care record.
• Seek specialist palliative care advice about supportive care and symptom control if needed, for example if symptoms are not controlled promptly or fully, or there are unwanted medication adverse effects, such as over-sedation.
• Ensure that family members/carers are aware how and who to contact if symptoms are uncontrolled and when the person dies.