Contacts
Contact:
Amy Banks and Louise Long
Kidney Supportive Care Nurses
Organisation:
North Bristol NHS Trust
Bristol United Kingdom
Email:
Case study:
22 February 2012
Improving early recognition of the end of life phase for kidney patients
Key points
- The Richard Bright Renal Unit in Bristol has developed two end of life care tools which are helping with assessment and early identification
- The tools are the patient pathway review and a screening tool¬ to identify patients who may require review for the supportive care register
- To date the unit has screened most of its regular dialysis patients and added more than 100 to its supportive care register
- More than 80% of those who have died have achieved their preferred place of care and death.
A pilot project at the Richard Bright Renal Unit in Bristol has developed two end of life care tools which are helping to assess kidney patients more efficiently and to identify at an earlier stage those who may be in the end of life phase.
The unit is one of three project groups commissioned by NHS Kidney Care to take part in a national initiative to improve end of life care for people with advanced kidney disease, with a focus on dialysis patients.
The project, which began in 2009, is aligned with the overarching aim of the End of Life Care in Advanced Kidney Disease: A Framework for Implementation 1. A key element in the framework is early recognition that the end of life phase is approaching, so dialysis patients can be helped to make informed choices about their needs for supportive and end of life care.
The two main tools that have been developed and are now used in everyday practice are the patient pathway review – a regular patient assessment tool – and a screening tool¬ to identify patients who may require review for the supportive care register.
The patient pathway review was developed as a nursing assessment, replacing the previous longer assessment with a single A4 sheet to give a comprehensive assessment of each patient but with reduced paperwork.
It assesses: activities of daily living, symptom burden, sensory problems, social, emotional, psychological and spiritual aspects of life, and a patient scored quality of life scale. It ensures that nurses communicate with the patient on a regular basis and quickly highlights any area in which they may need further support.
The tool has helped to identify those who are deteriorating or may be approaching their end of life as well as other problems that patients may not otherwise tell staff about. For example, patients have been helped with practical issues such as walking aids and even a walk-in shower. Others who can no longer attend church have been helped by getting the hospital chaplain to visit while they are having dialysis.
The benefits of the patient pathway review include:
- Less time form-filling compared with previous nursing assessment
- Providing relevant information around which to base an individual care plan
- The time and opportunity for essential communication between patients and staff.
The screening tool was developed to identify those patients who may be approaching the last six to 12 months of life, and is used each time a patient pathway review is completed. It is an indicator for healthcare professionals although it is not always totally accurate at predicting death within this timeframe. However, it gives an idea of those who may need supportive care and further input from community staff and support from agencies outside secondary care.
The screening tool assesses eight indicators of approaching end of life. These include unplanned weight loss, a reduced serum albumin, reduction in mobilisation, remaining in bed more than 50% of the time, patients choosing not to have dialysis, repeated hospital admissions, expressing a wish to stop treatment and identification by GP.
Using these indicators, as well as the Surprise Question (“Would I be surprised if this patient were to die in the next 6-12 months?”), identifies the potential need for further intervention and supportive care.
If a patient were to meet one or more of the indicators on the screening tool as well as prompting a ‘no’ to the Surprise Question, the nurse would discuss with the patient the fact their condition was changing. Their consultant and supportive care nurses would also be alerted to the possible need for supportive care and placement on the unit’s supportive care register.
Once on the register, explanatory letters are sent to both GP and district nurses and the unit’s dialysis nurse acts as the key worker co-ordinating supportive services between the dialysis unit and the community teams.
The unit has also developed patient and carers’ explanation letters and offers dialysis patients the opportunity to take part in advance care planning with supportive information.
To date, it has screened most regular dialysis patients (approximately 750) and added more than 100 to its supportive care register. Over 120 patients have had some record of advance care planning of which the majority have a recorded preferred place of care and death. More than 80% of those who have died have achieved this. A further 70 patients have been offered advance care planning but have declined it.
Reference
1. End of Life Care in Advanced Kidney Disease: A Framework for Implementation. NHS Kidney Care and the National End of Life Care Programme, 2009.
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