Implementation: getting started
This section highlights 3 areas of the care of dying adults in the last days of life guideline that could have a big impact on practice and be challenging to implement, along with the reasons why change is happening in these areas (given in the box at the start of each area). We identified these with the help of stakeholders and Guideline Committee members (see the section on validation and stakeholder comments for draft guidelines in the guideline manual). The section also gives information on resources to help with implementation.
Poor communication and not recognising that people are dying were key themes identified by a Parliamentary and Health Service Ombudsman's report, Dying without dignity, which investigated complaints about end of life care. Correctly recognising that a person is in the last days of life may allow opportunities for shared decision‑making and prevent unnecessary interventions. Good communication of a dying person's prognosis improves their end of life care and the bereavement experience of those important to them. It can help to ensure that the dying person's expressed wishes are considered and to avoid misunderstandings and unnecessary distress.
Recognising dying can be challenging for health and care professionals. There is often uncertainty about how long a person has left to live and the signs that suggest that someone is dying are complex and subtle.
Some health and care professionals are uncomfortable discussing how long someone has left to live, and sometimes do not have the skills and confidence to give difficult news or talk about the dying process. Adequate training and continued support is important to help health and care professionals to communicate sensitively and effectively.
Refer to the Leadership Alliance for the Care of Dying People's report, One chance to get it right, for information on existing training for different types of professionals and commissioning advice.
As part of face‑to‑face learning or joint sessions, use training programmes and guidance to help develop communications skills such as:
e-Learning for Healthcare's end of life care for all (e-ELCA). Relevant sessions include:
Assessment of dying phase and after‑death care (02_14)
"What will it be like?" – talking about the dying process (03_26)
Discussing 'do not attempt CPR' decisions (03_30)
An advanced clinical communication skills course
Courses and events provided by voluntary sector organisations such as Living Well Dying Well
Encourage health and care professionals to keep their skills updated as part of their continuing professional development.
The independent Review of the Liverpool Care Pathway for dying patients highlighted a lack of understanding of the role of hydration during end of life care, which may have contributed to poor care. This guideline aims to ensure that hydration is maintained in the last days of life when needed, to prevent or minimise unwanted symptoms such as dehydration or delirium. When this is not possible by drinking, clinically assisted hydration can be beneficial in some circumstances.
Practice varies widely in the use of clinically assisted hydration at the end of life. Healthcare professionals and people important to the dying person may believe that providing clinically assisted hydration will prolong dying, or that 'withholding' it will hasten death, but there is no evidence for this. Giving clinically assisted hydration may relieve distressing symptoms or signs relating to dehydration but it may also cause pain, discomfort or swelling at the infusion site. Healthcare professionals need to be confident that they can discuss the risks and benefits with the dying person or those important to them before starting clinically assisted hydration.
Use the General Medical Council's 2010 guidance on End of life care: clinically assisted nutrition and hydration, which is a good starting point for practitioners.
Use training programmes such as e-Learning for Healthcare's e-ELCA to improve their knowledge and skills in these areas. Relevant sessions include discussing food and fluids (03_31).
Ensure that healthcare professionals in all care settings have access to the equipment needed for clinically assisted hydration.
Poorly controlled symptoms can lead to considerable distress for the dying person, and poor symptom control was a key theme identified by the Parliamentary and Health Service Ombudsman's report, Dying without dignity, which investigated complaints about end of life care. An individualised approach to anticipatory prescribing should ensure that the drugs prescribed are appropriate to the anticipated needs of the dying person, and prevent distressing hospital admissions and waste of medicines.
Prescribers may need further training for individualised anticipatory prescribing because it may mean a change in practice. The Review of the Liverpool Care Pathway for dying patients found that a 'proforma' approach to prescribing led to over medication, and there was concern that inappropriate prescription and administration of medicines by inexperienced staff was taking place. The availability of resources may differ between regions as well as between hospital and community settings.
Use training programmes such as e-Learning for Healthcare's e-ELCA to improve knowledge and skills in these areas. Relevant sessions include symptom management: last days of life (04_23–04_26).
Ensure that healthcare professionals in all care settings and at all times have access to the medicines that may be needed and are able to get advice from colleagues with experience of end of life care if they need it.
Develop agreements with local pharmacies to keep an agreed list of drugs in stock and provide community staff with details of local on‑call pharmacies.
Further NICE resources to support implementation are available.
Annual indicators for use in the Quality and Outcomes Framework (QOF) for the UK are available from the NICE menu of indicators.
NICE uptake data has more information about the impact of guideline recommendations and quality standard measures.
The Royal College of Physician's National care of the dying audit of hospitals can help providers to audit their care against national standards and policies.