High-quality palliative care must be informed by patient needs and influenced by their experiences and insights, supported by those of their carers. Development of palliative care services on a local, regional and national level should be responsive to the patient experience, efficient in use of resources and collaborative with other services.
NICE guidance for supportive and palliative care was first published in 2004 and is currently being reviewed with publication awaited.
Guidelines and quality standards
Palliative care physicians work in conjunction with the guidance provided by NICE, SIGN (Scotland) and the professional specialist society, the Association for Palliative Medicine of Great Britain and Ireland (APM) and also contribute to clinical guidelines and quality standards. Standards of care must be maintained through education and training, outcome measurement, and underpinned by research.
End-of-life care guidance
- NICE guidance on the care of dying adults in the last days of life
- Ambitions for Palliative and End of Life Care
- NICE quality standard for end-of-life care for adults
- CQC quality framework using five care priorities for end-of-life care
- Transforming end-of-life care in acute hospitals (opens PDF) ‘how to’ guide published by NHS England in December 2015.
- The National care of the dying audit for hospitals published by the Royal College of Physicians and Marie Curie in 2014
- FAMCARE : using the experience of the bereaved as a surrogate for patient experience at end of life
- National enquiries into patient outcomes and death: National Audit Office report on end-of-life care, 2008
- Gold Standards Framework: A New Tool for After Death Analysis (login required).
- Public Health England hosts the National EoLC Intelligence Framework (NEoLCIN) which collects and analyses national data in relation to the activity, quality and costs of care provided by the NHS, third sector and social services for adults approaching the end of life
- The national ‘minimum data set’: a database of activity by palliative care service/team developed by the National Council for Palliative Care Services since 1995.
- Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2014 Jan;28 (1):49-58.
Accessing data for quality improvement
Data and information from outcome measures and research must be available to drive forward and maintain standards of care. It also supports appraisal and revalidation of doctors. Historically, outcome measures have been hard to define and measure consistently. This has been the focus of work in academic units to develop validated tools which are transferable to practice in any setting, such as the Palliative Care Outcome Scale; developed by the Cicely Saunders Institute and King’s College, London.
Outcome measures may be reported by:
- patients themselves
- patients with help from family or professionals
Ideally, patient-reported outcome measures (PROMs) are preferred, since this is less subject to bias in reporting, but this is problematic in palliative care because patients may simply be too ill or lack the capacity to complete. The extent of inability to complete PROMs varies by setting: up to 60% of hospice patients need help completing outcome measures and about 15–25% of community patients need help.
Focusing on patient-reported measures alone therefore runs the risk of excluding a high proportion of patients. The use of ‘Patient- or person-centred outcome measures’ (PCOMs) have therefore been proposed instead. PCOMs refer to measures which focus on the areas known to be prioritised by patients with advanced illness (hence they are person-centred), yet they may be reported by proxies (families or professionals) on the patient’s behalf as the patient is often too frail or sick to report for themselves.
It is generally only the individual themselves who can experience care, and then report on that experience. However, in palliative care, the family view on the experience of care may be sought. Data from outcome and experience measures can be reported at individual patient level, or may be aggregated to group or population level. The level of aggregation may vary from being grouped at a specific palliative care team or service level (for example, all community patients seen in a geographical patch), to an organisation level (such as all patients seen within a hospice). Clearly, the higher the level of aggregation of data, the more difficult it is to attribute improved (or sustained) outcomes to any one specific intervention or team. The VOICES end-of-life questionnaire for bereaved relatives has provided robust data across care settings.