What is the Care Pathway for the Last Days of Life?

The care pathway is a tool which:

  • Influences the type of care a patient is given
  • Is a plan for health and social care professionals of how to provide multi-disciplinary, evidence-based best practice whatever the diagnosis or location.
  • Provides guidance on the different care packages required, including: comfort measures, anticipatory prescribing of medicines and discontinuation of interventions which are no longer suitable,

Note: It is perfectly acceptable, as a professional, to consider suitable alternative care. However, you should record any changes on the Variance Sheet and explain the change from the care pathway.

Important: The care pathway forms part of the legal record of care and replaces most other documentation.

The front page details the criteria for commencing the pathway and gives instructions on how to sign goals and record variances. The signature log is a useful reference, when following up an event and is mandatory. You only need to record this once, not every shift.

The care pathway guidance has three sections:

1.Patient assessment made on diagnosing dying

2.Focus of patient care

3.Care after death.

Diagnosing Dying

A multidisciplinary team (MDT) approach to the diagnosis of dying is important. It avoids giving conflicting messages to family / carers

All reversible causes for the current condition should be considered before the team agrees that the patient is dying. The following may apply: The patient is:

1. Essentially bed bound

2. Increasingly drowsy

3. Finding it difficult to swallow

At this stage, to avoid unnecessary and futile actions, end of life care decisions will require completion, including:

  • Do Not Attempt Resuscitation (DNAR).
  • (EMAS) end of life care decisions.

It may also be relevant to complete a “Nurse Verification of Expected Adult Death”.

The GP or hospital doctor will sign the pathway following the MDT agreement.

Section 1: Patient Assessment

The assessment has specific goals 1-10:

Goals 1-3 Comfort Measures / Clinical interventions

Following assessment, decisions are taken on the patient’s condition. Inappropriate interventions and non-essential medication may be stopped and the best route of medication administration is identified. Preventive prescribing of “as required” medication is completed to ensure any symptoms are managed without delay.

Goals 4 –10 Communication

Identify the patient/family/carer knowledge and their communication needs to find out theirunderstanding of the situation.

Communication

Family members need to be informed and consulted, but they should not be asked to make decisions about the patient’s care. Decisions should be made by the patient if they have capacity or a valid Advance Decision (ADRT). If not, after careful consideration of the patient’s best interests, the team caring for the patient will make the decisions (See: Mental Capacity Act policy).

Religion or belief is often recorded on admission, but it is important that the religious/spiritual needs of both patient and carer are reviewed. A review will avoid assumptions of belief, wishes or desires of patient care.

Contact details that were recorded on admission need to be checked and any updated information must be recorded.

Note: Remember that primary contact and next of kin may be different people.

It is important that: family and carers are aware that the care pathway has begun; their concerns are identified and documented; they have understood the plan of care.

There are specific information booklets regarding the Care Pathway available for Relative/carers “When someone is dying”

Communication with Primary & Secondary Healthcare Teams

It is important to keep other teams updated as they may be unaware of the situation and care pathway.

Section 2: Focus of Patient Care

Assessments are also made that relate to:

Pain and Comfort Measures

*Pain *Agitation *Nausea and vomiting *Respiratory Tract Secretions *Dyspnoea *Other symptoms.

Essential Care

*Mouth care *Micturition *Medication *Immobility *Personal hygiene *Bowel care

These are specific goals (1 - 3), which should be assessed regularly. The frequency depends on the location of the patient.

In an inpatient unit or care home, assessments will be at a least every 4 hours. In the community setting it will be made at the time that a health or social care member visits the patient. These assessments will help maintain up to date information and the need for continued use of the care pathway.

Multidisciplinary Progress Notes

The Multidisciplinary Progress Sheet can be used to record any significant event/conversation that has not already been recorded on the care pathway, e.g:

* A specific conversation with a named carer

* Information following a ward round / visit.

Variance Reporting

If the care pathway is not followed at any point, the reason must be recorded as a variance on the Variance Sheet.

Variance is an important part of the care pathway, it should not be seen as a negative process.

Section 3: Care after Death

This section is intended to guide the multi-disciplinary team to support the family/carers after death. This can be a distressing time and so it is important to ensure they have been given the necessary documentation.

It is important to ensure that the information required to allow someone to collect a Death Certificate and belongings is understood in advance to avoid unnecessary distress.

It is hoped the use of this care pathway will help all those involved in achieving and maintaining a high standard of care of the dying.

With acknowledgement toMarie Curie Palliative Care Institute

Care Pathway for

The Last Days of

Life

Promoting Best Practice in the

Care of Dying Patients

Staff Guidance