Palliative Care Resources
Gold Standards Framework
Advance Care Planning
Electronic Palliative Care Co-ordination Systems (EPaCCS)
Spinal Cord Compression
Just in Case Prescribing
The Gold Standards Framework provides training and resources both in the UK and abroad, and has programmes for use in acute hospitals, community hospitals, prisons, care homes and general practice. It provides a structure to use to help formalise best practice for all patients, aiming to be proactive rather than reactive. The tools we have available in Somerset fit into this framework.
Advance Care Planning has been defined by the NHS End of Life Care Programme as ‘a voluntary process of discussion and review to help an individual who has capacity to anticipate how their condition may affect them in the future and, if they wish, set on record: choices about their care and treatment and / or an advance decision to refuse a treatment in specific circumstances, so that these can be referred to by those responsible for their care or treatment (whether professional staff or family carers) in the event that they lose capacity to decide once their illness progresses.’
Advance Care Planning is a vital component of end of life care – if we don’t know what our patients want we are unlikely to be able to meet their wishes.
This can feel daunting to clinicians, but Advance Care Planning has been shown to be a highly effective intervention, and most people are more ready than we might think to talk about their hopes and fears for the future.
For Advance Care Planning to be effective, patients wishes and choices have to be available, particularly during the out of hours period. The use of EPaCCS is part of the national end of life strategy, and details about the use of EPaCCS in the South West can be found at www.swscn.org.uk/improving-quality/end-of-life-care/
In Somerset we are using the Adastra system for our EPaCCS, and this has been very successful, and is highly valued by out of hours services.
Consent needs to be obtained to add patient’s details to EPaCCS, and patients also need to be asked if they are happy for their anonymised information to be used for monitoring and improving services - we use the information contained on EPaCCS to inform us whether we have been successful or not in providing good end of life care. We do this by combining the information from EPaCCS with other sources of information, such as those used by hospitals. This allows us to get a more rounded picture of caring for people at the end of life.
The EPaCCS patient information leaflet explains this, and should be offered to patients when discussing EPaCCS with them.
If patients do not have capacity to take the decision to have their information added to EPaCCS, this can be done as a result of a best interests discussion.
- Details of how to register to use EPaCCS
- Brief user guide to EPaCCS
- Patient and carer leaflet – offer this when obtaining consent
- Additions form that can be used to create a mail merge document from within GP clinical systems. This is available to be downloaded from the templates website. The GP can add any information that will be helpful, print off the form, which can then be used by a member of the admin team who adds all patients to EPaCCS for the practice. Care Homes can fax the additions form to the Care Coordination Centre, who will add the patient to EPaCCS for them.
- Information leaflet for patients at risk of developing malignant spinal cord compression
- A guide for GPs on diagnosis malignant spinal cord compression, and referral pathways in Somerset
Following the phasing out of the Liverpool Care Pathway in 2014, the National Leadership Alliance for the Care of Dying People has published guidance that is summarised in the leaflet ‘Priorities of Care for the Dying Person’. The key recommendation was a move away from a ‘pathway’ approach, and a move towards developing individual care plans for dying people.
The leaflet for health care staff ‘Priorities of care for the dying person’ is a very helpful summary. Further information is available on the NHS England website www.england.nhs.uk/ourwork/qual-clin-lead/lac/