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End of Life Care – Assessment and Care Planning
This article is the fourth in a series about end of life care. The first article in the series is “End of life care - an introduction”, which set out the framework to be expanded in the series
In that article we noted that there were a number of sources of information regarding end of life care. These include the NHS National End of Life Care Programme, the National Gold Standard Framework, and the Social Care Institute for Excellence (SCIE) resource “Dementia Gateway”. The second article is entitled “End of life care – elements of care”, and considers the four elements of care which should be present throughout the six steps of the Programme. The most recent article, entitled “End of life care - Discussions as the end of life approaches”, dealt with the need to open up frank and transparent communications at the very beginning of a person’s journey towards the end of their life.
In this article we examine assessment and care planning .
As a reminder, the NHS National End of Life Care Programme lists six steps in the end of life care pathway:
- Discussions as the end of life approaches
- Assessment and care planning
- Coordination of care
- Service delivery
- Last days of life
- Care after death
The Programme also lists four elements of care which should be present throughout the six steps listed above.
- Support for carers
- Information for patients and carers
- Spiritual care
- Social care
Assessment and care planning.
In common with all other areas of care and support, effective care planning is the "key technology" and its application can have fundamental effects on services.
The objective of care planning is to identify service user needs and to enable all staff having contact with that service user, directly or indirectly, to have the information they need to support the service user to receive the service which they consider best meets their needs.
The following is a version of the article “The Care Planning Cycle”, published by QCS in 2011, edited for applicability to end of life care.
The care planning cycle is utterly logical, is a closed loop and is the same for all service types. If the full cycle is not completed, care planning will not meet its function of managing the service
The steps in the process for users of the QCS Care Planning System are:
Assess: Carry out an assessment of the needs of the service user, and the opportunities available to them. There are a number of needs assessments in the QCS care planning pack appropriate to the service type. There is also a generic assessment which is often useful in documenting and analysing opportunities available to the service user. In the area of end of life care such opportunities may include identifying and supporting a wish for the last time to meet with a particular person, visit a certain place, or engage in a religious or spiritual activity. If a particular assessment is not appropriate for an individual service user, record that fact and the reason on the assessment and keep it with the completed assessment. Good practice is that one person carries out this process – the key worker, or, in the case of a nursing home , the key worker together with the Named Nurse. The carrying out of the assessment must be done with the agreement of, and in full consultation with, the service user, and the results must be shared with them for comment. The channels of open communication developed with the service user and family, discussed in the article “End of life care - Discussions as the end of life approaches” will be invaluable here, because the more truthful, complete and sensitive the assessment, the better the resulting care plan.
Document: Document those needs, using the assessments forms provided in the QCS system. There are no excuses for sub-standard documentation. The old chestnut “we need to spend our time caring, not writing” has been totally discredited by every piece of research on the subject, which prove beyond doubt that effective planning and execution of care is critically dependent on good documentation.
Develop: Develop strategies/support/treatment to meet those needs, identifying pros and cons for each strategy. It is the responsibility of the care plan developer to use their skill and experience to understand each need and opportunity identified by the assessment, and to develop a range of alternative responses to each. Under the CQC regulations in England, and the requirement for best practice elsewhere, it is no longer acceptable for strategies, support or treatment to be imposed on the service user. Not imposing requires the service user to be given choices.
Discuss: Offer the various strategies, including the pros and cons, to the Service User. This stage is critical in all areas of care, but none more so than in end of life care, where deeply held personal feelings are in play, and it is essential that the service user approaching the end of their life has the highest degree of personal control of their care environment that is possible.
Choose: The servicer user chooses their preferred option. This may involve negotiation if the key worker perceives that the service user is taking a sub-optimal option which may harm their future safety, health or wellbeing, but however it is done, the end result must be the agreement of the service user.
Plan: Prepare a written plan of care for each need or opportunity. The plan contains:
The assessed need, specified in terms everyone can understand i.e. the service user, and any staff who have responsibility for services to the service user.
The aim of the strategy/support/treatment – how the chosen strategy is intended to meet the identified need.
The specific instructions for all staff who have any contact with the service user, stating what they must do in order to meet the stated aims.
There is a one page form for each assessment type in the QCS care planning pack for this; one should be used for each identified need.
Record: Each worker who carries out any action which contributes to any care or support aim must record what they have done, as well as the result of their action - in terms of meeting the aim, or not. The format for this record is in the QCS care plan pack, and is called the ADL (Activities of Daily Living) Record. This record should be entered into at least once per shift for each plan of care. Normally any person who has contact enters a record of their contact, and the key worker checks the record when they are on duty and possibly expands it. Key workers are not nurses, and are responsible for the psycho-social aspects of the service user support and therefore will record all non-nursing activity; a Named Nurse in a nursing home will (only) be responsible for the clinical care, and only record clinical care. Activities staff should also record their contact with the service user in the ADL record, as also should spiritual advisors who have contact with the service user. There would normally be an activities/social care assessment and plan(s) of care for each service user. Best practice is for each plan of care to be given a unique reference, and each plan of care reported against explicitly, using the same reference in each 24 hour period.
Review: At regular intervals a designated person (key worker and named nurse) will together with the service user review each risk assessment looking for changes in needs and opportunities. If any significant changes are identified, a full reassessment must take place, leading to a new plan of care. The daily record is used as partial evidence for changed needs.
Even if no changed needs are evident, review the daily record and consult with the service user to assess how successful each plan of care has been in meeting the identified needs, adjusting the aims and instructions of the plan of care (most likely the instructions) to better meet the needs and aims.
Either way, the review purpose is to refresh each plan of care and make sure it is doing the job of managing the need.
“Regular” in this context is not subject to definition. It is in the nature of end of life care that the progress of each service user will be entirely personal, and it will be the responsibility of the care planner to use their experience and professional judgement to specify in the case of each care plan a period after which it should be reviewed, or more frequently if the need is changing more rapidly, and always immediately on a change of circumstances e.g. a fall, a new illness etc.
The regular review closes the loop back to the stage “Assess”, above. It is a continuous process, very similar in concept to the Deming continuous improvement cycle.
At all stages, the service user must be involved, consulted with and in control.
For those with a need for more information urgently, sources of further information are:
NHS National End of Life Care Programme.
Social Care Institute for Excellence (SCIE) Dementia Gateway.
The Gold Standards Framework.
The Marie Curie Palliative Care Institute, Liverpool