• Scenario: Management approach: covers general assessment and management of the person receiving palliative care, and their family.
• Scenario: Prognostic issues: covers assessing a person's prognosis, determining if they are nearing the end of life, and managing the situation appropriately.
• Scenario: Communication: covers communication with a person who is receiving palliative care and their family/carers, and communication with other health professionals (including seeking help and advice) in primary care.

• Assess the person's physical support needs at key points during the course of the illness (e.g. at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
• Assess and manage the person systematically (e.g. assess symptoms, set treatment goals, review regularly, and refer if necessary).

In depth

• Assess the person's psychological state at key points during the course of the illness (e.g. at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
• Offer general emotional support including skilled communication, effective information provision, courtesy, and respect.
• If the person or their carers have significant levels of psychological distress, prompt referral to specialist psychological care services should be offered.
• The appropriate psychological intervention will depend on the person's current and previous psychological problems, the level of support available, and their prognosis.

In depth

• Assess the person's social needs at key points during the course of the illness (e.g. at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
• Social care and support needs include: help with personal care (e.g. bathing and dressing), housework and shopping, practical aids (e.g. wheelchairs), caring for dependents (e.g. children or elderly relatives); and advice on work, employment issues, and benefit claims.

In depth

• Assess the person's spiritual needs (a person's search for meaning within his or her life) at key points during the course of the illness (e.g. at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
• Spiritual and existential (concerned with human existence and the meaning of life) support for people who are receiving treatment or are at the end of life includes: listening to the person and discussing their questions; affirming their humanity; protecting their self worth, dignity, and identity; and ensuring that spiritual care is offered along with psychological, social, and emotional care as part of a holistic approach.

In depth

• Offer family members and carers the opportunity for their needs (e.g. for support and information) to be assessed separately from those of the patient.
• Whenever possible and appropriate, invite family members and carers to be involved during clinical encounters and decisions about treatment and care (if this reflects the wishes of the person receiving palliative care).
• Family members and carers should be made aware of local sources of information, advice, and support, to address their own needs.
• Particularly address the needs of the family and/or carers at demanding times in the person's illness and when extra help may be needed.
• Consider that people of different ethnic backgrounds or cultures may have specific preferences regarding family involvement.
• The family can be helped by:
• Facilitating communication between the person and their family and health care professionals.
• Recognizing areas of stress in other areas (e.g. work, coping with children).
• Education to provide the skills and knowledge to provide the necessary aspects of care to enhance the person's comfort.
• Discussion of pain management to reduce anxiety regarding potential addiction or tolerance.
• Encouraging expression of fears, concerns, uncertainty, and emotional strain.
• Provision of information regarding the person's death and what to expect.

In depth

• Attempt to estimate the person's prognosis and discuss this with them if appropriate.
• Estimating the prognosis helps in the planning of appropriate treatment and care — if prognosis is not discussed, or predictions are inaccurate, people may make inappropriate treatment decisions, or inadequately prepare for death.
• The Prognostic Indicator Guidance (pdf) can be used. It is part of the Gold Standards Framework, which aims to optimize the care of people nearing the end of life who are looked after by primary care teams in the community.
• 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.
• A discussion of prognosis should involve:
• Identifying the person's own thoughts regarding their prognosis.
• Explaining the difficulty of providing an accurate prognosis.
• Providing a rough estimate only (e.g. days, weeks, months, years).

In depth

• It is essential to recognize the signs of dying in order to appropriately care for people at the end of life.
• People are likely to be in the terminal phase of their illness when they:
• Deteriorate day by day or faster because of their underlying condition.
• Express a realization that they are dying.
• Have reduced cognition, and are drowsy or comatose.
• Are bed-bound.
• Take little food or fluid, and have difficulty taking oral medication.
• Are peripherally cyanosed and cold.
• Have an altered breathing pattern.

In depth

• The terminal phase requires a careful discussion with the person, family, and carers regarding the following issues. This may involve discussing and weighing up the benefits, burdens and risks for the person:
• Stopping any unnecessary drug treatments and continuing other drug treatments by an appropriate route.
• Having commonly required medication available in the house (e.g. cyclizine, diamorphine, hyoscine hydrobromide, and midazolam), so that new or developing symptoms can be treated without delay.
• Control of physical symptoms.
• Realistic goals (e.g. in terms of treatment and resuscitation issues).
• Religious and spiritual care.
• Providing an appropriate environment (e.g. one which is comfortable and has an appropriate level of noise and activity for the person).
• If the person is likely to require care out of normal surgery hours, ensure that the local on-call service has been informed and given an effective handover.
• Provide emergency contact numbers and information on what to do when death occurs.

In depth

• Communicate effectively with the person, their carers, and other health professionals. Those who need to communicate particularly complex or distressing information should have enhanced skills, or be supported by someone who has those skills.
• Assess, on an ongoing basis, how the person wishes to be involved in making decisions about their own care, and what information they and their family need.
• Arrange appropriately trained interpreters for people who may otherwise find it difficult to communicate in their preferred language.
• The NHS End of Life Care Programme discusses advance care planning and documentation of the wishes of people with a life-limiting condition, including advance care plans, statements of wishes and preferences, and advance decisions. For more information, see www.endoflifecareforadults.nhs.uk/eolc.
• The Gold Standards Framework also includes advance care planning and has developed an advance statement of wishes template to support discussion and recording of a person's preference for place of care. For more information, see www.goldstandardsframework.nhs.uk.

In depth

• Care of people with advanced cancer, by health and social care professionals, should be based on locally agreed protocols and guidelines, delivered within the context of a managed system or pathway.
• When necessary, seek advice from, or refer to, specialist palliative care services.
• Discuss with the local specialist palliative care service (community, hospice, or hospital-based, as appropriate) to decide whether further involvement by the specialist team is required.
• Communicate with professionals within multidisciplinary teams and other service providers caring for the person. Aim to achieve continuity of care (e.g. nominate a 'key-worker' for individual people).
• The Gold Standards Framework in the community supports good communication and coordination of care, with a practice Supportive Care Register. For further information, see www.goldstandardsframework.nhs.uk.
• The Liverpool Care Pathway offers a framework for caring for people at the end of life. For further information, see www.mcpcil.org.uk/liverpool-care-pathway.

In depth