Palliative care - general issues: Scenario: Communication
Last revised in April 2020
Scenario: Communication
From age 16 years onwards.
What communication issues are important?
- Communicate effectively with the person and their family or carers. Those who need to communicate particularly complex or distressing information should have enhanced skills or be supported by someone who has those skills.
- Communicate with professionals within multidisciplinary teams, and other service providers caring for the person. Aim to achieve continuity of care (for example nominate a 'key-worker' for individual people).
- 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.
- 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/carer need.
- Arrange appropriately trained interpreters for people who may otherwise find it difficult to communicate in their preferred language.
- Offer the person the opportunity to discuss topics which are important to them at that time, for example:
- Treatment options and preferences.
- Disease status, progression, and estimated prognosis.
- Social implications (for example work and income).
- Issues relating to those important to them (for example their partner and children).
- Spiritual and religious issues.
- Advance care planning issues, including preferences, hopes, and wishes (such as preferred place of care and issues around dying, including cardiopulmonary resuscitation, and whether they have any expressed views about organ or tissue donation).
- If advance care plans are made, they need to be reviewed and updated as the person's situation or views change.
- 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.
- Give information verbally to the person and their family, although written materials may be useful for some.
- It is not recommended that children be asked to interpret for parents or other family members.
- A clinician may wish to offer the person a written record of consultations they have had with them.
- The Gold Standards Framework in the community supports good communication and coordination of care, with a practice Supportive Care Register. For more information, see www.goldstandardsframework.nhs.uk.
Basis for recommendation
This recommendation is based on guidance from the National Institute for Health and Care Excellence on improving supportive and palliative care for adults with cancer [NICE, 2004], expert opinion from palliative care literature in a textbook [Hardy, 2015], and General Medical Council guidance for doctors,Treatment and care towards the end of life: good practice in decision making [GMC, 2010].
- Most people wish to know their diagnosis and what is happening with their treatment and disease [Faulkner, 1998].
- Realistic hopes and aspirations can only be achieved by honest discussions [Hardy, 2015].
- Attempts to protect people from the reality of what is happening to them can lead to inconsistent messages being given by different members of the healthcare team [Hardy, 2015].
- Establishing and documenting a management plan in advance can help to ensure that a person's wishes and preferences about treatment can be taken into account, including a Do Not Attempt CPR (DNACPR) decision, if appropriate [GMC, 2010].
What sources of help and advice are available in primary care?
- 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.
- Both the GP and district nurse should be involved as early as possible after diagnosis and can contact their local specialist palliative care team for support or advice. The multidimensional nature of problems in palliative care requires a multidisciplinary team approach.
- 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.
- Available resources for healthcare professionals caring for people receiving palliative care include:
- 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. It also supports good communication and coordination of care, with a practice Supportive Care Register. For more information, see www.goldstandardsframework.nhs.uk.
- The Leadership Alliance for the Care of Dying People has published new standards of care that dying people and their families should expect to receive. This takes the form of five new Priorities for Care and replaces the Liverpool Care Pathway. For more information, see www.nhsiq.nhs.uk (pdf).
- The End of Life Care Patient Charter developed by the Royal College of General Practitioners (RCGP) and the Royal College of Nursing — implements the key recommendations of the RCGP's End of Life Care Strategy. It provides an example of best practice that people receiving palliative care should be able to expect from their primary healthcare team. For more information, see EOLC Patient Charter (pdf).
- The Prognostic Indicator Guidelines (pdf) — can be used to estimate prognosis. 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. It includes the question 'Would you be surprised if this patient were to die in the next 6 to 12 months?' to try to identify people nearing the end of their lives.
- The General Medical Council's guidance for doctors, Treatment and care towards the end of life: good practice in decision making — has detailed information regarding issues of advance care planning, advance requests and refusals for treatment, recording and communicating decisions, and discussions about whether to attempt cardiopulmonary resuscitation.
The palliative care team
- The palliative care team may include any or all of the following specialities:
- Palliative medicine consultants and doctors.
- General practitioner.
- Palliative care nurses, including:
- Palliative care nurse specialist/Macmillan nurse.
- Marie Curie nurse.
- Palliative care pharmacist.
- Physiotherapist.
- Occupational therapist.
- Counsellor (particularly bereavement counsellors) or psychologist.
- Dietitian.
- Social worker.
- Spiritual adviser.
- Benefits adviser.
- Complementary therapists.
- Macmillan nurses provide support and information to people with cancer and their families [Macmillan Cancer Relief, 2004].
- They do not usually provide 'hands-on' care, but give advice to the primary care team, including advice regarding medication for symptoms (for example pain, nausea, vomiting).
- The person and their family can self-refer to the Macmillan nursing team.
- Marie Curie Cancer Care provides nurses who care for terminally ill people and give them the choice of dying at home supported by their families [Marie Curie Cancer Care, 2007].
- Marie Curie nurses can provide hands-on care at home through the day or night.
- Marie Curie and Macmillan nursing services are free of charge to the person and their family and their services can be accessed via the person's GP or district nurse.
Basis for recommendation
This recommendation is based on guidance from the National Institute for Health and Care Excellence on improving supportive and palliative care for adults with cancer [NICE, 2004].