Getting it right: end of life care in advanced kidney disease Published by NHS Kidney Care This document brings together the experiences and learning from three project groups that have been working over the last two years to implement the framework for end of life care in advanced kidney disease. It also addresses the data items that are associated with managing end of life care.

1. Kidney Care
Getting it right:
End of life care in
advanced kidney disease
MARCH 2012
Better Kidney Care for All

2.
Reader Page
Title Getting it right:
End of life care in advanced kidney disease
Authors NHS Kidney Care and project teams at:
­ North Bristol NHS Trust
­ Greater Manchester Managed Kidney Care Network, a
partnership between Central Manchester University
Hospitals Foundation Trust and Salford Royal NHS
Foundation Trust
­ The Advanced Renal Care (ARC) project led by the
Department of Palliative Care, Policy and Rehabilitation at
King’s College London and working across the kidney
units at King’s College Hospital NHS Foundation Trust and
Guy’s and St Thomas’ NHS Foundation Trust.
Publication Date March 2012
Target Audience Commissioners, kidney care community, patients and patient
associations, primary care, palliative care staff working with
kidney services, hospice staff
Circulation List Renal Unit Directors
Renal Network Leads
Specialised Commissioners
Clinical Commissioning Groups
General practitioners
National Kidney Federation
National End of Life Care Programme
National Council for Palliative Care
Other organisations working with kidney patients approaching
end of life
Description/purpose This document brings together the experiences and learning
from three project groups that have been working over the last
two years to implement the framework for end of life care in
advanced kidney disease. It also addresses the data items that
are associated with managing end of life care.
Cross Ref n/a
Superseded Docs n/a
Action Required n/a
Timing n/a
Contact details admin@kidneycare.nhs.uk

3.
Contents
Foreword 04
Executive summary 05
Section 1: Introduction 08
Section 2: The framework 09
Section 3: Project groups 10
Section 4: Learning from the project groups 12
Section 5: Recommendations 26
Section 6: End of Life Care in Advanced Kidney Disease dataset 29
Acknowledgements 35
Abbreviations and Glossary 36
References 38
Appendices 40
Appendix 1: Patient pathway review developed by the Bristol project group 40
Appendix 2: Screening tool developed by London team 43
Appendix 3: Bristol Proton Screen 44
Appendix 4: NHS Kidney Care’s Cause for Concern Survey 45
Appendix 5: My wishes. Advance care planning document developed by 54
Salford Royal NHS Foundation Trust
Appendix 6: Thinking Ahead. An advance care planning document developed by 56
Central Manchester University Hospitals NHS Foundation Trust
Appendix 7: Checklist developed by Greater Manchester Project Group 60
Appendix 8: Resources included in London toolkit 61
Appendix 9: Training Needs Analysis Questionnaire from the Greater Manchester 62
Kidney Network End of Life Project
Appendix 10: Renal Sage and Thyme communication course evaluation
69
Appendix 11: The Prepared Acronym 72
Appendix 12: Items adopted in each of the NHS Kidney Care pilot sites 73
Appendix 13: Items adopted in each unit for the End of Life Care in Advanced 74
Kidney Disease dataset
CONTENTS
03

4. Foreword
In the NHS we care for people from the cradle to the grave. The care and compassion offered to
people at the end of their life is just as important as that provided to help them stay healthy.
In kidney care, we are well placed to identify patients who may be nearing the end of life and to work
with them, their families and carers, and other health and care services to help them live as full a life as
possible and to die with dignity in a setting of their own choice.
Kidney services have led the way in improving end of life care. The National Service Framework for
Renal Services was the first to talk about death and dying. We built on this, and the momentum
around the national pathway for end of life care, to develop a specific end of life care framework for
patients with advanced kidney disease. It explores the kidney­specific issues of end of life care,
focusing on patients opting for conservative kidney management and those “deteriorating despite”
dialysis, supporting services to offer high quality end of life care.
This report describes the experience of three projects groups – in Bristol, Greater Manchester and at
King’s Health Partners in London – who have been working with NHS Kidney Care to implement the
framework. It describes their approaches, the challenges they have overcome and the lessons that their
experience can teach others seeking to improve end of life care for patients.
It shows how a systematic approach to the identification of patients, sensitive discussions with patients
and carers, a structured process for recording patient’s wishes, key link workers to co­ordinate care,
and improved training and education for staff can all make a real difference to the care we provide our
patients at the end of life.
I would like to thank colleagues in the project groups and the End of Life Care in Advanced Kidney
Disease board for their tremendous efforts, their achievements, and the enormous contribution they
have made to improving end of life care. I hope that colleagues across the NHS will find the
experiences and learning outlined in this report valuable in informing their own efforts to improve this
vital aspect of care for kidney patients.
Beverley Matthews
Director
NHS Kidney Care
04

5.
Executive Summary
The National Service Framework for Renal Services, published in 2004 and 2005, was the first to
tackle the issues of death and dying. It includes an aim to support those with established kidney
disease to live as full a life as possible and to die with dignity in a setting of their own choice.
Further work on the importance of end of life care led to the publication of the National End of Life
Care Strategy in 2008 which set out a National End of Life Care Clinical Pathway, and, in 2011, an
end of life care quality standard from NICE.
In 2008, a Kidney Supportive and End of Life Care Steering Group was established to develop a
framework to specifically meet the needs of those with advanced kidney disease and in 2009, End of
Life Care in Advanced Kidney Disease: A Framework for Implementation was published.
The overarching aim of the framework is to help people with advanced kidney disease make
informed choices about their needs for supportive and end of life care. Key elements of the
framework are timely recognition that the end of life phase is approaching; sensitive communication
with and involvement of patients and carers; co­ordinated multi­professional working across
boundaries; clinical leadership; local action planning; and the appropriate training and education for
healthcare staff.
NHS Kidney Care supported project groups in Bristol, Greater Manchester and at King’s Health Partners
in London to implement the framework and evaluate their approaches so that their learning and
experiences could be shared more widely. This report brings together the key findings of the project
groups, focusing in particular on:
Achieving best practice
• How to identify patients approaching end of life
• Creating and using a register of these patients within kidney units to facilitate delivery of
palliative and supportive care
• The use of advance care planning to provide end of life care sensitive to an individual’s
requirements
• Co­ordination of care across organisational boundaries
• Support for families and carers through the end of life period and beyond
Workforce considerations
• Identifying key staff to champion and pioneer this work
• Understanding the training needs of staff in kidney units and developing effective ways to meet
these training requirements
The report concludes with a number of recommendations based on the work of the project groups,
which will be useful for other renal units and networks seeking to offer the very best end of life care.
EXECUTIVE SUMMARY
05

6. Recommendations
Achieving Best Practice
i How to identify patients approaching end of life
Establish a systematic unit wide approach to identification of patients
A systematic approach can be taken to identify patients who may be approaching end of life. This allows
staff to move across work areas and still be familiar with the process. A number of examples are
described in this report and kidney units developing registers, in partnership with primary care colleagues,
could adopt part or all of any of those that have been shown to be useful in the project groups.
Ensure that all patient groups are included
All kidney patients may benefit from end of life care support and consideration should be given to
spreading the use of patient identification for the register beyond those on conservative care.
ii Creating and using a register
Recognise that a change in culture may be required as well as organisational changes
A cultural change will take time to mature within a unit, and all the project groups emphasised the
need for dedicated staff to lead and demonstrate new approaches to supportive and palliative care.
Consider the name of your register
Consider the name to be given to a register and what that might convey to staff and patients using
it. All the project groups have chosen to move away from “cause for concern”.
Use IT systems that will enable the best access for all staff
If possible, adapt local IT systems to hold the register and keep abreast of opportunities within the
healthcare community for sharing electronic records more widely. A number of pilots are taking place
across the country within healthcare communities that will enable sharing of patient information,
including preferences for end of life.
Consider who will agree registration with the patient and when
For one of the groups, registration was dependent on a discussion with the patient at an out­patient
appointment, which led to delay in registration if appointments were several months away and
subsequently to some patients dying before reaching the registration discussion. Consideration
should be given how best to fit with local processes to ensure that registration is discussed with
patients in a timely manner in a suitable location with an appropriate staff member.
iii Advance Care Planning
Offer advance care planning to all dialysis patients
Patients were found to appreciate the opportunity to take part in advance care planning (ACP) even if
they did not immediately wish to take it up. A number of documents are available for use in
introducing ACP for patients that can be adapted to suit local circumstances and facilities. The use of
appropriate documentation helps to give staff confidence in approaching patients. Recording patient
preferences for place of care and death allows policies and procedures to be established that will help
this be achieved.
06

7.
Take account of the time that advance care planning will require
The groups found that ACP could take more than one discussion with a patient and that for some
patients the discussion may take some time and may require revisiting at a future date. If possible,
involve families and carers in these discussions.
iv Coordination of care
Consider methods of raising awareness and establishing links with local organisations
involved with end of life care
A number of approaches (stakeholder events, staff exchanges, attending meetings) were taken by
the groups to build on their relationships with other organisations working with kidney patients. This
helped to ensure communications remained open and effective to ensure patients received the
services they required.
Consider creation of a resource with details of local organisations involved with end of life care
The groups found that an easily accessed resource with details of contact information, key workers
and guidance regarding end of life care for kidney patients was very useful to kidney unit staff.
v Support for families and carers through the end of life period and beyond
Consider methods to support bereaved families, carers and staff
A number of approaches to bereavement support were taken by the groups including letters and
cards, annual services, and, for staff, training sessions from pastoral colleagues.
Workforce considerations
i Identifying key staff to champion the work
Establish key/link workers
Identification of link staff who may receive additional training and education about end of life care
processes within a unit can provide support for all staff. A key worker allocated to individual patients
may also act as a co­ordinator with other services
ii Training needs of kidney unit staff
Resource training for staff
All groups found training and education were crucial to the success of their projects to give staff the
knowledge and confidence to raise issues with patients. A number of approaches were adopted
including taking advantage of training already within the trust, courses run by local palliative/hospice
staff and national initiatives for training in end of life care. The groups found that, where possible,
providing kidney­specific training was the most successful.
Training should be designed and delivered at different levels, according to the previous training and
experiences of the renal professionals, and the extent they will be responsible for end of life care.
Kidney­specific advanced communication skills training has been developed, and should become more
widely available.
The consistent recording and sharing of care planning information has been identified as one of the main
ways to enable improved end of life care for patients. This report also includes a review of the learning
from the project groups and the National End of Life Care Programme on establishing a core dataset.
EXECUTIVE SUMMARY
07

8. 1: Introduction
The National Service Framework (NSF) for Renal Services1
was the first to tackle the issues of death
and dying. Part two includes an aim to support those with established kidney disease to live as full a
life as possible and to die with dignity in a setting of their own choice. The quality requirement states
that people with established kidney failure should:
“… receive timely evaluation of their prognosis, information about the choices available to
them, and for those near the end of life a jointly agreed palliative care plan, built around their
individual needs and preferences.”
The NSF was followed by the publication of reports describing proposals for delivery of services and
the strategic vision for the NHS2,3
that further emphasised the importance of end of life care,
culminating in the publication of the National End of Life Care Strategy4
. The strategy described the
need for high quality care for all adults, regardless of age, condition, diagnosis or place of care, and
set down the National End of Life Care Clinical Pathway (see below). In November 2011, NICE
published a quality standard for end of life care, which sets out 16 statements that describe
aspirational but achievable care for adult patients who are approaching the end of their life.
To build on the NSF and the national strategy to develop them specifically for kidney patients, a
workshop was organised by NHS Kidney Care in April 2008 to identify key themes. These were then
taken forward to a Kidney Supportive and End of Life Care Steering Group to identify the
characteristics which a kidney specific pathway would require. The culmination of the steering
group’s work was the publication in 2009 of End of Life Care in Advanced Kidney Disease: A
Framework for Implementation5
– referred to as the framework in this document.
End of Life Care Pathway
Step 1 Step 2 Step 3 Step 4 Step 5 Step 6
Discussions as of life
approaches
Assessment, care
planning and review
Co-ordination of care Delivery of high
quality services
Care in the last days
of life
Care after death
• Open, honest
communication
• Identifying triggers
for discussion
• Agreed care plan and
regular review of
needs and
preferences
• Assessing needs of
carers
• Strategic
coordination
• Coordination of
individual patient
care
• Rapid response
services
• High quality care
provision in all
settings
• Hospitals,
community, care
homes, extra care
housing, hospices,
community hospitals,
prisons, secure
hospitals and hostels
• Ambulance services
• Identification of the
dying phase
• Review of needs and
preferences for place
of death
• Support for both
patient and carer
• Recognition of
wishes regarding
resuscitation and
organ donation
• Recognition that end
of life care does not
stop at the point of
death
• Timely verification
and certification of
death or referal to
coroner
• Care and support of
carer and family,
including emotional
and practical
bereavement support
Support for carers and families
Information for patients and carers
Spiritual care services
08

9.
2: The Framework
The framework describes the six steps of the national pathway in terms of caring for kidney patients
approaching end of life:
i. To ensure that all those who need it receive appropriate care, they must first be
identified. A cause for concern register is recommended for all renal centres; this may
ultimately be linked with GP palliative care registers to ensure seamless care across healthcare
sectors.
ii. People vary in the level of involvement that they wish to take in the planning of their care
at the end of life; consequently, planning needs to be sensitive to individual requirements.
This plan should be available to all staff who may be involved with caring for the patient
during the end­of­life phase.
iii. Delivery of care should be co­ordinated across the healthcare services involved.
Identification of key staff in the organisations involved and appropriate use of IT can help to
ensure that responsibilities are carried through and information is available at the point of care.
iv. Kidney centres need to provide high­quality services to those approaching the end of life,
whether through choosing conservative care or with advanced kidney disease being treated
within the kidney centre. Appointment of clinical leads (medical and nursing) will provide a
focus for the kidney unit and for establishing working relationships with other care providers.
v. The emphasis of care in the last days of life should reflect the preferences indicated by
patients through the care planning process, and should be facilitated through a local action plan.
vi. Support for families and carers underpins the pathway; it need not cease at death.
In addition, training needs for the staff involved should be identified and professional development
addressed.
Following publication of the framework, a board was established under the chairmanship of the
Chair of NHS Luton. The remit of the board was to co­ordinate the development and progress of a
number of end of life care work streams enabling consistent implementation of the NSF for renal
services.
One of the work streams facilitated and overseen by the board, and led by NHS Kidney Care,
supports the introduction of the framework within kidney centres, working in partnership with
primary and palliative care organisations.
THE FRAMEWORK
09

10. 3: Project groups
An initial project to implement the framework supported by NHS Kidney Care was established in
Bristol in May 2009, led by a palliative care physician working closely with the Richard Bright Renal
Unit (referred to in this report as ”Bristol”). NHS Kidney Care then sent out a call for expressions of
interest for additional project groups to implement the framework and demonstrate:
• The development of a supportive and palliative care (cause for concern) register in the renal
unit shared with primary care
• An increase in the number of conservatively­managed patients with assessment and advance
care planning in place
• A proportional increase in the number of renal staff educated and trained in advance care
planning and the assessment skills to meet the supportive and palliative care needs of patients
and their relatives/carers
• An increase in the number of patients with an end of life plan
• A percentage increase in the number of patients achieving their preferred place of care
• A greater level of satisfaction for patients and carers
A number of proposals were submitted from which two additional project groups from kidney units
were selected and the Bristol group continued with their project. The additional projects were:
• The Greater Manchester Managed Kidney Care Network, a partnership between Central
Manchester University Hospitals Foundation Trust and Salford Royal NHS Foundation Trust
(referred to in this report as “Greater Manchester”).
• The Advanced Renal Care (ARC) project led by the Department of Palliative Care, Policy and Rehabilitation
at King’s College London and working across the kidney units at King’s College Hospital NHS Foundation
Trust and Guy’s and St Thomas’ NHS Foundation Trust (referred to in this report as “King’s Health Partners”).
Funding for 18 months work was awarded to the project groups.
To support the groups in carrying out their projects, NHS Kidney Care established a learning network
where the project groups could discuss issues of mutual interest, raise problems, share learning and
experience. An online forum was set up for project group and board members to enable sharing
documents and discussion outside of meetings.
The first task for the project groups was to appoint staff to take their work forward and the next
sections of this report represent the work and consequential learning and experience from these
facilitators, the kidney units and other healthcare staff they worked with.
At the time that the projects were being carried out, the National End of Life Care Programme
(NEoLCP) was developing a number of core data items that they could recommend for end of life
care registers and which would become a national information standard. NHS Kidney Care has used
this work and that of the pilots to consider how kidney registers can best fit with national
developments. The findings from this work are described in Section 6.
10

11.
Implementing the framework
The project groups have taken different approaches to implementing the framework, reflecting the
diversity of practice, facilities and cultures within kidney units. However, they all tackled a number of
key issues:
Achieving best practice
• How to identify patients approaching end of life
• Creating and using a register of these patients within kidney units to facilitate delivery of
palliative and supportive care
• The use of advance care planning to provide end of life care sensitive to individual’s requirements
• Co­ordination of care across organisational boundaries
• Support for families and carers through the end of life period and beyond.
Workforce considerations
Identifying key staff to champion and pioneer this work
Understanding the training needs of staff in kidney units and developing effective ways to meet
these training requirements.
PROJECT GROUPS
11

12. 4: Learning from the project groups
Achieving best practice
i How to identify patients approaching end of life
This is the first step in ensuring that patients approaching end of life benefit from the
additional supportive care they may require during the last six to twelve months of life. The
project groups also needed to consider not only how they would identify patients
approaching end of life (which criteria to use), but also to which patient groups they would
apply the criteria.
Table 1: Criteria used for identification for the register
Bristol Greater Manchester King’s Health Partners
Surprise question Surprise question Surprise question1
Unintentional weight loss (non- Age
fluid) > 10% (6 months)
Serum Albumin, 25mg/dl Primary renal diagnosis
Requires mobilisation assistance Functional status, (modified
e.g. walking frame, carer for help Karnofsky Performance Scale)
In bed more than 50% of the Co-morbidity (presence of
time dementia, PVD, IHD, cancer)
≥2 non-elective admissions in 3
months
Patient has expressed a desire to Consistently asking to stop
stop treatment treatment
Conservative management patient Physical appearance and behavior
not on dialysis with CKD 5 changes
Identification by GP (already on Relatives contact on non-dialysis
GP end of life register) days
Symptom assessment (POS s Symptom assessment (POS s
renal) - part of regular assessment renal)1
for all dialysis patients
Quality of life assessment - part of Quality of life assessment (EQ 5D)1
all regular assessment for all
dialysis patients
1
In King’s Health Partners these three criteria alone have been used clinically to identify for the register, but all
criteria were collected to inform survival prediction (findings yet to be reported)
12

13.
All the groups have included use of the ‘Surprise Question’ (SQ) – “Would you be surprised if this
patient died in the next 12 months?” If the answer is “no” then the patient may be approaching
end of life. Use of the SQ has been shown to be an effective aid in identifying those approaching
end of life6,7
.
In Bristol, the kidney unit team worked with palliative care colleagues to develop a
patient­completed symptom assessment and quality of life tool which was combined with a
screening tool designed specifically to identify those approaching end of life. The symptom
assessment tool was developed by adapting two validated tools – the Edmonton Symptom
Assessment Schedule8,9
and POS­s10
. The screening tool was created by modifying the Gold
Standards Framework Poor Prognostic Indicator Guide11
and including the SQ. The assessment and
screening tool is completed every three months with dialysis patients. However, staff were
uncomfortable with patients having access to the SQ answer and it is now only completed on the
computer for staff to see.
The resulting Patient Pathway Review (PPR) (Appendix 1) was modified at the initial stages following
staff and patient feedback and met the group’s aim to capture activities of daily living, symptom
assessment, sensory impairment, social, emotional, psychological and spiritual needs and a patient
reported quality of life score.
A score of 1 or more in the screening tool section of the assessment and a “No” response to the SQ
indicates that a patient may be approaching end of life and highlights them to the consultant to
decide whether it is appropriate to discuss the outcome. Once the conversation has taken place, and
with patient agreement, the patient’s details are added to the supportive care register (the name
given to the cause for concern register in Bristol).
At the start of the project, the Bristol team had anticipated that the conservative care patients would
be the group most in need of supportive care measures. However, they soon realised that those on
dialysis for more than three months were the largest group whose on­going care and quality of life
would be improved through the use of the PPR.
In the Greater Manchester project, prior to deciding the criteria for establishing which patients may
be approaching end of life, staff workshops were conducted in all areas to identify the indicators
described in Table 1.
They are used in conjunction with the SQ to enable discussion at multi­disciplinary meetings (MDM)
to review patients and identify those who are approaching end of life and suitable for the supportive
care register. In one maintenance haemodialysis team the meeting is now held monthly and includes:
• Review of patient deaths in the previous month, including whether advance care planning
discussions could have been held with the patient and family
• A review of any patients who have been discharged to ensure continuity in care and
discussions with patients and families
• Review of any new patients identified as requiring input (four to five new patients each month)
• Review of those identified the previous month.
LEARNING FORM THE
PROJECT GROUPS
13

14. A number of clinical areas within Greater Manchester are now holding cause for concern meetings
and others are working towards a similar format.
The team from King’s Health Partners, when considering the criteria that would enable them to
identify those approaching the end of life, looked at the evidence on the usefulness of variables as a
predictor of survival and then whether those variables were readily captured in the clinical context.
This led them to identify the variables in Table 1 as the most suitable predictors of those approaching
end of life.
These variables were used to create a screening tool to identify patients for registration. Following
consultation with patients and carers, patient reported measures of symptoms and quality of life
were also included. Systematic and routine completion of symptom and quality of life scores by
patients takes some time to introduce but advantages identified include:
• It signals the importance of symptoms and quality of life to both patients and professionals,
giving patients ‘permission’ to raise these concerns
• It ensures a patient­centred approach to identification for the register.
Using these measures also provides a starting point for holistic palliative needs assessment. POS­s
renal10
was selected as the measure of symptoms and EQ5D12
for quality of life.
The above were combined to create a screening tool (Appendix 2) used at multi­disciplinary meetings
(MDM) to determine whether patients should be approached about entry on the register. It has been
rolled out across the two kidney centres, and within six months was introduced in both main units
and ten satellite units for all dialysis patients and conservatively managed patients with an eGFR <
15mL/min.
The team from King’s Health Partners will be evaluating which of the criteria adopted in Table 1
correlate most closely to high symptom burden and/or poor quality of life. They will also measure
which of the variables are the best predictors of survival, but are currently using a total POS­s score ≥
30, EQ5D overall score < 60 and the SQ answered ‘no’ to determine whether patients should be
approached regarding registration. These criteria may be refined following evaluation which will be
published separately.
14

15.
ii Creating and using a register
All project groups have different IT systems available to store their register and data associated with
end of life. Section 6 describes the approaches taken to recording registration and items associated
with end of life care. It also looks at the national picture regarding a national end of life care dataset
and the items it may contain.
One of the challenges identified by the project groups when introducing a register was to change
the culture of thinking of staff who, although very sensitive to individual patient needs, may not
have the opportunity to consider the patient as whole, reflect with them on their overall progress,
and to assess where they might be on their illness trajectory. Barriers to cultural change of thinking
about palliative and supportive care within kidney units include:
• Fear of upsetting patients and families
• Lack of knowledge amongst professionals about the evidence
• Genuine as well as perceived lack of time to spend discussing these issues
• Limited resources to provide supportive and palliative interventions.
Introducing a change in thinking can take time and needs to ensure that both an active disease focus
and holistic ‘supportive’ focus are achieved within a kidney centre. All the project groups agreed that
it was imperative to have dedicated staff to lead and demonstrate the palliative and supportive
approach and found that by introducing a register and the other recommendations of the
framework they were able to provide a focus to drive forward changes.
While developing their register, the Bristol project group used a “Think Aloud” approach with
consultant staff. The PPR system described above was explained to each consultant and their
concerns and suggestions for it were recorded and then used to shape it and the training required.
Registration is recorded on the local IT system (Proton) together with items such as the screening tool
results and whether leaflets have been provided to the patient (Appendix 3). Registration often
triggers actions such as a letter being sent to the GP requesting the patient be added to their Gold
Standards Framework and includes guidelines for renal end of life care including advice on pain and
symptom management specific to kidney patients.
The two Greater Manchester trusts are working with their local IT systems to develop electronic
recording of their registers. In London, specific pages have been created in the Renalware system at
King’s College Hospital to collect data associated with the project and work is on­going to create
alerts for high symptom scores and poor quality of life scores. These alerts flag up high symptom
scores and/or poor quality of life scores, so that (regardless of whether the patient fulfils all criteria
for the register) symptoms and quality of life concerns are addressed at the next clinical review. The
renal unit at Guy’s has a different IT system and it has not been possible to tailor it for electronic data
collection; however some progress has been made on particular aspects with the POS­s renal being
incorporated in the hospital’s electronic patient record.
LEARNING FORM THE
PROJECT GROUPS
15

16. All groups are looking at methods of linking their registers with other local healthcare services and
Greater Manchester and King’s Health Partners are working on linking with the “Coordinate my
Care” initiative and Bristol with Adastra. These systems would enable healthcare organisations and
staff, for example ambulance staff, to access end of life care information about patients.
The framework recommends that a cause for concern register is established in all kidney centres.
However, the project groups have found that the name “cause for concern” is not always suitable
and Bristol and Greater Manchester have preferred to call it “supportive care register”. This has been
found to be more acceptable and conveys some of the register’s function to patients. The register
used by King’s Health Partners is called the GOLD register. In all groups, registration is discussed with
patients, sometimes within an outpatient consultation or while they are attending for dialysis.
NHS Kidney Care conducted an online survey of English kidney units to establish whether cause for
concern registers were in place and to explore aspects of the registers such as where the register was
held, method of patient identification and what links with palliative care existed. The full findings of
the survey are reported in Appendix 4 and the main findings from the 24 (46% of kidney units in
England) were:
• 63% of the units have established a register and three units are in the process of setting one up
• 50% hold their register on the local IT system
• The most commonly cited criteria for inclusion on the register were the SQ and the patient
expressing a desire to stop treatment
• Most reported good links with palliative care physicians and/or nurses.
iii Advance care planning
The framework indicates that patients vary in the level of involvement that they wish to take in the
planning of their care at the end of life; consequently, planning needs to be sensitive to individual
requirements. The project groups implemented advance care planning (ACP) for those who wished
to use it and developed a number of leaflets and information resources for patients.
Following a pilot in one satellite dialysis area, all dialysis patients are given the opportunity at any
point to discuss ACP in Bristol, 100% of the patients giving feedback indicated that it was useful to
be aware of their options even if they didn’t want to take part immediately. A leaflet”Planning Your
Future Care”13
is available in each unit. For those who choose to engage with ACP, a record is made
on the local IT system and their preferred place of care and death is recorded. Carers’ needs may also
be assessed and a record made that they have been discussed (see screen in Appendix 3). At the time
of writing, 81% of patients who had died and recorded a preference during the project period had
achieved their preferred place of death.
The NEoLCP have a document “Preferred Priorities for Care”14
that can be used as a basis for
discussion with patients about their wishes. Use of this document was piloted at both kidney centres
in Greater Manchester, however it did not fully meet the requirements of staff and patients and new
documents were developed at each centre – “My Wishes” in Salford and “Thinking Ahead” in
Central Manchester (Appendix 5, 6).
16

17.
These documents have been introduced in a number of areas leading to approximately half of
patients participating in completing them. The feedback from patients has been very positive, for
example:
“I can say what I want to say it’s my opportunity”
“I am just so glad someone has asked me about what I think regarding my care for the future”
“It helps to write it down”
The King’s Health Partners project team used the Holistic Common Assessment (new 15) to support
renal professionals in assessing the needs of patients approaching end of life. This includes ACP,
exploring their priorities and preferences for the future and optimising planning to accommodate
these priorities. The team developed and used an insert for the Kidney Care plan to help open up
conversations about priorities and preferences. They have also designed a ‘Guide to Gold’, a
guidance document for all healthcare workers approaching ACP discussions with renal patients,
which covers preparing for the discussion, carrying out ACP, and follow up and documentation. An
evaluation of these interventions is being carried out through patient experience surveys and
in­depth qualitative interviews with patients and carers. The findings of this evaluation will be
published separately.
All units have emphasised the staff time that needs to be dedicated to raising and discussing these
issues with patients and then following through with the planning process. This needs to be factored
in to ensure that patients are given the opportunity to fully consider their options and wishes, and
may require more than one discussion.
The availability of suitable documents for patients has helped to give staff in all areas, including
in­patient wards, the confidence to raise these matters with patients.
The use of ACP also prompts those involved to develop closer working relationships with other
healthcare organisations caring for kidney patients at end of life such as rapid discharge teams,
Macmillan services and local hospices.
One group also found some uncertainty amongst patients regarding some of the terminology
associated with renal supportive care including “preferred priorities for care” and the meaning of
“key worker”.
LEARNING FORM THE
PROJECT GROUPS
17

18. iv Co­ordination of care
The framework emphasises the importance of co­ordinating care to ensure patients receive high quality
care at the end of life. All the sections above describe aspects of care which contribute to this, but
co­ordination of care across health boundaries is also required to ensure that the many needs of
patients at end of life are met. This in turn requires an understanding of where services are located,
what services are available and engagement with palliative care, primary care and social care providers.
Table 2: Coordination initiatives
Bristol Greater Manchester
Renal key work ensures that
patient has a community key
worker and keeps them notified
of changes to the patient’s
condition
Referrals to other services e.g.
dietician, renal psychology, local
hospice/palliative care team
Letters to GPs include request to
add patient to GP register
Communications with primary
care
Guidelines including advice on
pain and symptom management
for kidney patients sent to GPS
Completion of report for DS1500
and social services input
Meetings and involvement of
families and carers
Use of PPR has enhanced dialysis
nurses’ knowledge of patients’
needs
Capacity discussion and
assessment of patient mental
capacity
Creation of checklist to ensure all
areas of care considered
Staff exchange with local hospice
Attendance at local Gold
Standards Framework meetings
King’s Health Partners
Primary care staff invited to attend
joint study days with renal and
palliative staff
A centralised access point to a
resources toolkit available to renal
professionals
Exchange visits between renal and
palliative teams
Many dialysis nurses in Bristol have found that the use of the assessment/screening tool has
enhanced their relationship with the patients and increased their knowledge of the patients’ needs.
It was originally intended that the key worker nurse would co­ordinate all care communications
between secondary and primary care teams and between the Multi­Disciplinary Team (MDT) and the
patient and carer. However, the complexity of this task has proved to place too much pressure on the
key workers and they now ensure that the patient has a community key worker who is updated on
an on­going basis if the patient’s condition changes.
18

19.
When a letter is sent to GPs notifying them that a patient has been added to the register, it will
include a request that the patient be added to the practice register and will be accompanied by
guidelines for renal end of life care. These guidelines include advice on pain and symptom
management. Under the auspices of the End of Life Care in Advanced Kidney Disease Board, the
guidelines have subsequently been developed into Ten Top Tips for GPs16
.
In Greater Manchester the co­ordination of care initiatives described in Table 2 have prompted
attention to the care needs of the patients and to assist staff to address some of these issues a
checklist (Appendix 7) has been developed to ensure all areas of care are considered. Link workers
have also developed their own local contacts for referral.
Staff in kidney services in Greater Manchester have taken part in a hospice exchange programme to
promote collaborative working and 28 renal and hospice staff have undertaken the programme. This
has provided kidney staff with knowledge of relevant palliative care resources and increased the
understanding of hospice staff about kidney patients. Thirty­seven patients have accessed hospice
care at their end of life. This programme is continuing. The project facilitators have also attended
primary care Gold Standards Framework meetings to broaden their understanding of primary care
services and helped to make appropriate referrals.
In response to requests from GPs for advice concerning symptom management and palliative
interventions for kidney patients, the team in London have invited primary care partners to attend
their study days and other teaching events. A “Meet the Renal Team”/”Meet the Palliative Team”
combined training day was evaluated as very successful. Renal professionals and specialist palliative
care providers attended together for a day of joint learning and to meet the corresponding primary
care, renal or palliative professionals in their locality. This has been followed up with exchange visits
between renal and palliative teams.
Recognising the wide range of providers and resources that may be required to support patients, the
King’s Health Partners team have developed a centralised access point for information available to
renal professionals. A resource toolkit has been created that is held on the local intranet, with a front
end “Renal palliative care: how do I…?” which links to all the different resources available (see
Appendix 8 for details).
Building and maintaining links with primary care and other community based providers is vital in
ensuring kidney patients are supported appropriately at end of life. All the project groups have found
that the steps they have taken to engage with providers have led to improved communications,
understanding and knowledge among the kidney unit staff.
LEARNING FORM THE
PROJECT GROUPS
19

20. v. Support for families and carers through the end of life period and beyond
Depending on patient preference, families and carers may be involved at any or all stages of
supporting patients approaching end of life.
When leaflets to help patients consider their preferences for end of life care are provided to patients
they are encouraged to discuss their wishes with families and carers. Many of the units encourage
family and carers to be involved in the discussions. However a “no visiting” policy in some dialysis
areas can be a barrier to family and carer involvement.
Patients who are admitted close to the end of life in Bristol are cared for using the Renal Integrated
Care Pathway (ICP). This is a trust document adapted for renal care, derived from the Liverpool Care
Pathway17
, and promotes holistic care by guiding staff to recognise and act on pain and other
symptoms, as well as attending to care and comfort needs, and supporting family and carers. At this
stage, patients may also receive input from the palliative care team. All renal ward­based nursing
staff are trained in the use of this pathway. Patients still attending for dialysis, but approaching end
of life, may be assessed using the PPR more frequently, for example monthly.
In Greater Manchester, the use of ACP has led to development of close working partnership with
organisations supporting patients at the end of life including the trust’s rapid discharge team to
facilitate patients discharge to die in the place of their choosing if it is not hospital.
Bereavement
The death of a kidney patient affects not only the patient’s family, but may also affect the staff and
other patients where they have been receiving regular dialysis.
The Bristol team carried out a staff survey on bereavement during their project. This showed that
nurses with less than two years post­registration experience were not very comfortable with the
discussions or practices around death or afterwards. Subsequently, the project team carried out short
training sessions in the ward and the pastoral staff conducted two training sessions on spiritual and
cultural considerations at the end of life. Other changes in bereavement practice were initiated
following the survey:
• The consultant writes a personal letter to the family when they have been involved in the care,
offering condolences and the opportunity to talk about the treatment and care of their relative
• The carers of all dialysis patients receive a card from their dialysis unit from staff who knew the
patient well, including the opportunity to speak to staff
• Staff from the dialysis unit endeavour to attend the funeral
• The approach to informing other patients varies across the dialysis units but there is a common
emphasis on encouraging support and discussion with those close to the patient.
The use of the Renal ICP on inpatient wards has included informing GPs of a death and supporting
families and carers after death.
20

21.
Consideration is being given in Bristol to setting up an annual memorial service for the families of all
dialysis patients that have died during the preceding year.
A remembrance service for the bereaved families of kidney patients has been taking place annually,
arranged by Central Manchester University Hospitals Foundation Trust kidney unit, and at both units
in the King’s Health Partners group.
This is a non­denominational service to remember dialysis patients who have died during the year.
Family members are joined by staff from the renal team including doctors, nurses, administrative
staff and chaplains. The intention is to provide an opportunity to remember loved ones and draw
comfort from others. The numbers attending has increased each year and over 200 friends and
relatives attended in 2011 in Manchester.
The King’s Health Partners group routinely sends bereavement letters to next of kin, and one of the
Greater Manchester project groups is working with the local kidney patients association to design
cards to be sent to bereaved families of dialysis patients. The King’s Health Partners team have also
developed a bereavement resource folder which can be accessed by all renal professionals,
containing signposts to existing bereavement support services in Trusts, primary care, palliative care
and through Cruse.
Workforce considerations
i Identifying key staff to champion and pioneer the work
All the groups appointed staff to carry through the work of their project, with a view to changes in
practice and tools developed becoming embedded within their kidney units when the projects are
completed.
Training of staff (which is covered in detail in Section 4.v) was identified as a major challenge in all
units and the Bristol group found that the identification of one or two link nurses in each dialysis
team was helpful. These link nurses attended project meetings and were given more intensive
teaching on the aims of the project so that they could support the staff in their respective teams.
Also, within the dialysis teams, the nurse or healthcare professional co­ordinating the patient’s care
and ensuring community key workers are updated if the patient’s condition changes, is called the
“key worker”.
In Greater Manchester, a network of end of life workers has been established that has supported
learning and sharing of experiences and provided support during the project. Staff who had
previously shown an interest in end of life care were encouraged to be involved in the project as the
end of life care link workers. A register of all the link workers has been created including name and
contact details and is available on the renal pages and can be accessed on the trust intranet. The
project facilitators have also been able to build on relationships outside the kidney teams and raise
awareness of the project and the support needs of kidney patients approaching end of life.
LEARNING FORM THE
PROJECT GROUPS
21

22. At King’s Health Partners, link renal nurses within each dialysis unit, supported by the project team,
have been carrying through much of the holistic assessment of palliative and supportive needs, and
follow up work with patients. This has been incorporated into the MDMs where the key worker is
identified to take forward assessment, care planning and advance care planning. The link nurses
have adapted the processes to best fit their unit and continue the flagging and follow­through with
patients and families, thereby embedding the process into their unit.
All groups emphasised the time that needs to be dedicated by link workers to fully assess patients’
needs and wishes, as this may take place over a number of consultations and at a pace and
frequency dictated by the patient.
All staff will potentially be involved in caring for patients as end of life approaches. However, the
identification of staff who can support their colleagues and share knowledge and skills has been
found to be very important in the project groups when pressures on all staff may be great.
ii Training needs of kidney unit staff
Early in the project, all groups identified that training for staff in kidney units would be crucial to the
delivery of the project. A number of approaches have been taken in all the centres to meet the needs
of various staff groups and roles.
• Raising awareness of the projects within the units
• Specific education about assessing and addressing palliative and supportive needs of kidney patients
• Communication skills training for all renal professionals
• Advanced communications training for those with key roles.
In Bristol, education was directed through the link workers, who were given intensive training in the
aims of the project, the tools that were being utilised and the planned roll out across the centre. The
project nurses also visited the dialysis areas regularly to support staff, help with use of the IT
developed, and maintain awareness. Regular updates on the project were given at audit meetings.
Education in primary care included a guideline that is included when GPs are informed that a patient
is added to the register. This guidance has now evolved into Ten Top Tips for GPs16
.
During the project, a staff survey was conducted to establish how widespread knowledge of the
tools and documents was. This indicated that most staff who participated knew “a lot” or “some”
about the tools and documents developed. The document that was least familiar to staff was the GP
guidelines. Recommendations following the survey included that more and regular teaching and
education was still required and could be delivered in targeted areas.
An initial stakeholder event was held in Greater Manchester to describe the aims of the project with
healthcare professionals from secondary, primary, tertiary and voluntary care sectors attending. This
event also enabled working relationships to be established with many organisations that have since
been built on and continue. The awareness­raising also resulted in end of life care becoming a
standing item on many agendas including business and finance meetings, governance meetings and
senior nurse meetings. The project facilitators also attended ward and unit manager’s meetings to
keep staff up­to­date with the progress of the project and training strategy.
22

23.
The King’s Health Partners team regularly updated staff about the project to ensure extensive
understanding of the purpose, plans and findings. This awareness raising was built on through
education about prognosis and survival of dialysis and conservative care patients and emphasis of the
importance of the holistic assessment approach being taken. The team had previously found that
physicians in non­renal specialties were unfamiliar with conservative care leading to an interpretation
of conservative care as inappropriate refusal of dialysis and consequent attempts to change the
patients’ choice of treatment. To spread understanding of conservative care, a “Conservative Care
Grand Round” was instituted and led to increased understanding and confidence in other clinicians
that this was an active pathway for patients.
As well as raising awareness of the projects and the tools and documents associated with them, the
teams also identified that staff required training in the aspects of end of life care that were being
introduced. The main focus of training was on communications skills and advance care planning.
A number of the nephrology consultants in Bristol attended specialist communication skills training
over two half­days run by an advanced communications training facilitator with role play with actors.
The same training facilitator also ran communications training days for renal nurses on two occasions.
An advance care planning day run by a local hospice was attended by a number of renal nurses.
At the start of their project, the Greater Manchester team conducted a training needs assessment
across all sites using a self­reporting questionnaire (Appendix 9). Ninety­one per cent of the
responses were from nursing staff and eight per cent from medical staff. Approximately a third of
respondents had received training in communications skills and nearly 30% training in end of life
care skills. However, only 11% of this training had occurred within the last three years. The results
from this survey prompted exploration of training facilities available locally.
At this time, several trusts in the North West were investing in the SAGE & THYME® foundation
communication skills course aimed at all grades of staff and taking three hours. Sage and Thyme is a
model to enable health and social care professionals to listen to concerned or distressed people, and
to respond in a way that empowers the distressed person. In order to accelerate access to this course
for renal staff, a number of staff took the “train the trainer” course and adaptations have been
made to provide renal specific Sage and Thyme training. The adaptations include advance care
planning scenarios with role play. Approximately 200 staff have now taken the course with positive
feedback (Appendix 10), including renal consultants, other medical staff and clerical staff.
Sage and Thyme training provides a basic grounding in communications skills, but more advanced
skills are required for key and link workers. Communication skills training at enhanced and advanced
level has been accessed via the Greater Manchester and Cheshire Cancer Network and this has been
delivered to 17 staff across the project group. In addition, the project group based in SRFT have
provided a workshop “The Simple Tools to Start the Conversation” from the Conversations for Life
programme. Delegates included specialist registrars and nursing staff and was well received. The
project groups have also found that staff exchanges with local hospices have increased knowledge
and confidence in end of life care.
LEARNING FORM THE
PROJECT GROUPS
23

24. Some training was also required for the project staff and the palliative care consultants have
attended some courses related to communications skills and advance care planning.
Sage and Thyme training is also available to staff in the London trusts and the team decided to
concentrate on developing and implementing advanced communication skills training for renal staff.
A focus group was conducted to identify training needs and whether Advanced Communication
Skills training needed to be renal specific or more generic. A number of key areas were highlighted
that were distinct for renal professionals as compared with, for instance, oncology. These are
described in Figure 1.
Figure 1: Advanced Communication Skills Training – challenges specific for renal professionals
The availability of dialysis
Dialysis is often seen in a “black and white” way, as an active intervention which prolongs life or the
withdrawal of dialysis which brings death. This distinct ‘life saving or life prolonging’ intervention is not
available in other conditions in the same way.
Public perception of renal disease
Patients, families and friends often consider that dialysis offers ‘complete’ replacement for a failing kidney,
with less awareness of limitations.
Family issues or pressures
These may emerge early on, or may emerge only as a patient deteriorates, or as dialysis decisions are made.
Early introduction of palliative approach
Engaging in a palliative approach from diagnosis can be difficult, as the path is sometimes very active at the
start.
The importance of definining roles
Who has the difficult conversations and when. Many of the dialysis patients spend a lot of time in the dialysis
units and are very well known to the staff. They may be seen infrequently by more senior staff. Implementing
a clear process for ‘who’ should conduct some of the more sensitive and difficult conversations (and ‘when’)
was felt to be important.
Nephrology as a highly technical specialty
The more technological aspects (for example, blood results) may represent more familiar and secure ground
for staff, while aspects such as communication and advance planning may be perceived as less of a priority,
and less comfortable.
Issues around cognitive impairment
While not specific to kidney disease, cognitive impairment may be more frequent in advancing kidney
disease, and this impacts on the importance of early introduction of palliative approaches, and subsequent
scope for detailed discussions and decision-making.
24

25.
Based on these findings, they designed and rolled out an Advanced Communication Skills Training
Programme for Renal Professionals, consisting of one full­day training, followed by two half days
training, based on the model of similar training in advanced cancer18,19,20,21
. The full day included a
session where invited patients/family carers attended and shared their experience of
communications, particularly with regard to communicative style and manner. A session on
communication skills includes a focus on the PREPARED acronym developed by Clayton and
colleagues22
to communicate about prognosis and end of life issues with adults with a life­limiting
illness (Appendix 11). Participants were also offered the opportunity for role play to trial the
communication skills techniques. This programme has been run for all renal link nurses and a
shortened version has been adapted for consultants. In general, the training programme was very
well received by participants, with the sessions on patient and carer experience, and the opportunity
for role­play in a ‘safe’ environment both highly valued.
End of Life Care for All (e­ELCA) is an e­learning project commissioned by the Department of Health
and delivered by e­Learning for Healthcare (e­LfH) in partnership with the Association for Palliative
Medicine of Great Britain and Ireland. There are more than 150 interactive sessions of e­learning
within four core modules:
• Advance care planning
• Assessment
• Communication skills
• Symptom management, comfort and well­being
In 2011, NHS Kidney Care supported the development of one in a series of additional modules,
specifically related to the implementation of the framework23
.
The modules take 15 to 20 minutes to complete and are free to all health care staff.
LEARNING FORM THE
PROJECT GROUPS
25

26. 5: Recommendations
Achieving Best Practice
The framework has proved a very useful basis for the project groups establishing end of life care for
kidney patients. The experience and learning described above show that the challenges have been
tackled and achieved in different ways to fit the diverse working practices in the project areas.
Kidney units that implement the framework will ensure that they are well positioned for achieving
the quality statements set out in the NICE standard24
for end of life care.
The following recommendations are based on the learning and experience from the work of the
project groups.
i How to identify patients approaching end of life
Establish a systematic unit wide approach to identification of patients
A systematic approach can be taken to identify patients who may be approaching end of life. This
allows staff to move across work areas and still be familiar with the process. A number of examples
have been described above and kidney units developing registers, in partnership with primary care
colleagues, could adopt part or all of any of those that have been shown to be useful in the project
groups.
Ensure that all patient groups are included
All kidney patients may benefit from end of life care support and consideration should be given to
spreading the use of patient identification for the register beyond those on conservative care.
ii Creating and using a register
Recognise that a change in culture may be required as well as organisational changes
A cultural change will take time to mature within a unit, and all the project groups emphasised the
need for dedicated staff to lead and demonstrate new approaches to supportive and palliative care.
Consider the name of your register
Consider the name to be given to a register and what that might convey to staff and patients using
it. All the project groups have chosen to move away from “cause for concern”.
Use IT systems that will enable the best access for all staff
If possible, adapt local IT systems to hold the register and keep abreast of opportunities within the
healthcare community for sharing electronic records more widely. A number of pilots are taking place
across the country within healthcare communities that will enable sharing of patient information
including preferences for end of life.
Consider who will agree registration with the patient and when
For one of the groups, registration was dependent on a discussion with the patient at an out­patient
appointment which led to delay in registration if appointments were several months away and
subsequently to some patients dying before reaching the registration discussion. Consideration
should be given how best to fit with local processes to ensure that registration is discussed with
patients in a timely manner in a suitable location with an appropriate staff member.
26

27.
iii Advance Care Planning
Offer advance care planning to all dialysis patients
Patients were found to appreciate the opportunity to take part in advance care planning (ACP) even
if they did not immediately wish to take it up. A number of documents are available for use in
introducing ACP for patients that can be adapted to suit local circumstances and facilities. The use of
appropriate documentation helps to give staff confidence in approaching patients. Recording patient
preferences for place of care and death allows policies and procedures to be established that will
help this be achieved.
Take account of the time that advance care planning will require
The groups found that ACP could take more than one discussion with a patient and that for some
patients the discussion may take some time and may require revisiting at a future date. If possible,
involve families and carers in these discussions.
iv Coordination of care
Consider methods of raising awareness and links with local organisations involved with
end of life care
A number of approaches (stakeholder events, staff exchanges, attending meetings) were taken by
the groups to build on their relationships with other organisations working with kidney patients. This
helped to ensure communications remained open and effective to ensure patients received the
services they required.
Consider creation of a resource with details of local organisations involved with end of life care
The groups found that an easily accessed resource with details of contact information, key workers
and guidance regarding end of life care for kidney patients was very useful to kidney unit staff
v Support for families and carers through the end of life period and beyond
Consider methods to support bereaved families, carers and staff
A number of approaches to bereavement support were taken by the groups including letters and
cards, annual services, and, for staff, training sessions from pastoral colleagues. RECOMMENDATIONS
27

28. Workforce considerations
i Identifying key staff to champion the work
Establish key/link workers
Identification of link staff who may receive additional training and education about end of life care
processes within a unit can provide support for all staff. A key worker allocated to individual patients
may also act as a co­ordinator with other services.
ii Training needs of kidney unit staff
Resource training for staff
All groups found training and education were crucial to the success of their projects to give staff the
knowledge and confidence to raise issues with patients. A number of approaches were adopted
including taking advantage of training already within the trust, courses run by local palliative/hospice
staff and national initiatives for training in end of life care. The groups found that, where possible,
providing kidney specific training was the most successful.
Training should be designed and delivered at different levels, according to the previous training and
experience of the renal professionals, and the extent to which they will be responsible for end of life
care. Kidney­specific advanced communication skills training has been developed, and should
become more widely available.
28

29.
6: End of life care in advanced
kidney care dataset
End of life care for patients with advanced kidney disease is an emerging theme which naturally
connects with other developments over the last two years in the wider end of life care community.
One of the ways to improve end of life care for patients is to maximise the opportunities to record
elements of the care plan in a consistent manner. In doing so, it becomes possible to communicate
and share that plan over a much wider range of people and settings than it would if the care plan
was unstructured. Better informed patients and their carers makes “right care” much more likely
and can reduce distressing and wasteful health activities.
Over the last two years, the National End of Life Care Programme (NEoLCP) has been developing a
set of core items which could be unified to enable better communication. At their most basic, this
set of items can form a register of people who are reaching the end of their life who require more or
different interventions or care. Such a register could be used to prompt discussion in
multi­disciplinary meetings even if it was just constrained to one clinical setting (such as a renal unit).
Large gains come from sharing information however, and the NEoLCP piloted the use of a shared
end of life care register between settings. The final report and their evaluation gives a useful
summary of their learning and some clear recommendations about how to make a success of
implementing a shared care plan25
.
Even within the NEoLCP pilot schemes there were differences in the breadth and depth of the
information recorded and the range of services that could access the shared record. In the most
developed pilots, the end of life care register became much more than a prompt to multi­disciplinary
discussion, forming a fully developed care plan which was shared between primary care, secondary
care, specialist palliative care, out of hours services and the ambulance service.
In parallel with the NEoLCP pilots, and before the publication of the final report and
recommendations, the three NHS Kidney Care End of Life Care (EoLC) pilot sites undertook to
implement a local end of life care register and to then test its value in clinical practice and for clinical
audit. Many English renal units have implemented or are developing such registers.
Each of the pilot sites had different IT tools at their disposal to hold their register. For example, in
the Bristol pilot the register was contained with the renal unit clinical computer system, was
developed in­house using existing expertise in that system, and became an integrated part of the
routine assessment and tracking of all patients’ care needs in the dialysis units which adopted the
system. The scope to share the record outside the renal service is limited however. In contrast, in the
West Manchester pilot the register was developed as part of other work to share care records for all
specialities between primary and secondary care. The resulting register was less specific to patients
with kidney disease, but has greater potential to share and inform care decisions in other settings.
The purpose of this part of the report is to summarise the learning from the kidney care pilots of the
NEoLCP register. The End of Life Care Locality Register Pilot Programme Core Data Set is described in
Appendix 12.
DATASET
29

30. Description of the IT systems in the pilot areas
Bristol
The single pilot run in the Bristol renal centre and surrounding units used the standalone renal clinical
computer system in widespread use throughout that renal unit (Proton). The register was developed
between clinicians in the pilot and the local IT system manager.
Manchester (Salford)
The register was constructed between the clinical team and the IT support for the electronic patient
record already in use throughout the Salford Royal NHS Foundation Trust, and progressively being
shared with other clinical settings in the community.
Manchester (Central)
Clinical Vision 4 (CV4) IT system was utilised to establish the register, allowing access to information
across all renal settings within Central Manchester including renal out patients’ clinics and renal
satellite units.
Kings
The register was constructed with a locally developed renal standalone IT system with strong clinical
support and buy in.
Guy’s
Guy’s and St Thomas’ NHS Foundation Trust has extensively developed a locally configured version of
the iSoft clinical manager software which has incorporated the renal unit clinical computing
requirements and is progressively being shared with the surrounding community.
The items adopted in each unit are described in Appendix 13.
30

31.
Summary of the learning from developing and implementing renal end of life care registers
The conclusions from the End of Life Care in Advanced Kidney Disease pilots register project is
presented using the same heading as the key finding and recommendation from the NEoLCP; the
headlines are the same, but here renal examples are given to illustrate the points. The conclusions
from the audit of the data held will be presented separately.
Engage with all stakeholders early
Developing the register requires dedicated clinical and IT input
The three centres in the pilot all had a combination of a clinical champion (or champions) and an IT
partner who was also engaged in developing the register.
Establish what is expected from the register
Is this an internal register to drive multidisciplinary discussion within the renal unit, or is it a
communication tool with other care settings?
Establish the data requirements
It was clear from the audit of the data on the care registers that some information was more likely to
be recorded than others. If the items being proposed are audit steps, care should be taken to ensure
they fall on the natural clinical care pathway for most patients, otherwise the item is unlikely to be
reported. Free text allows the subtlety of a care discussion, but a Y/N is required in order to
unequivocally record whether a particular decision has been reached, or a particular action has been
carried out.
Think about what to call the register
In Bristol the register evolved, and although initially called the “Gold Standards Register” this was
found to be poorly understood by patients and staff, and was renamed as “supportive care register”.
Before selecting an IT platform and approach, think through the needs of the different stakeholders.
Renal units have an established track record of developing their existing clinical computer system to
meet the changing patient pathways and interventions that have been adopted over the last 30
years. Developing a register in the renal clinical computer system is therefore the course which is
easiest to implement at minimal cost, and is accessible and understood by most members of the
renal multi­disciplinary team. However, many secondary care providers are developing alternative
systems to communicate with primary care and share letters and results. If the primary goal is to
share information outside the renal unit then utilising such a system, or at least adopting a standard
set of data items and using such technology to share these items, might be more appropriate.
Before selecting an IT platform, map out what systems are already in use in your area
All of the pilots tried to use the IT systems which were already available to them. It is very unlikely
that a single unifying system will now be implemented in the NHS, and instead the philosophy is one
of integrating existing and new technologies. Focusing instead on using standard items defined in a
consistent manner is the key to ensure that the most can be made of the information in the future.
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32. Establish who has responsibility for the accuracy of the patient record
An opt­in model of consent is almost universally felt to be necessary
This was found in the three kidney care pilots also, although it is not universally adopted in all renal
centres using end of life care registers. Formal or informal, a clear step which ensures that a patient
realises what the end of life care register is, and how it could benefit their care seems necessary for
the register to work effectively and with transparency in all subsequent consultations.
Consider how to present the issue of how binding the register is
Whilst this is true for all decision making about care in advanced CKD it is perhaps most obvious in
the decision making around whether or not to start on renal dialysis. Mentally competent individuals
are entitled to change their minds at any stage in their care process, and the reassurance that this is
possible regardless of what is on the EoLC register is important to communicate.
It is vital that end users are trained both in the IT and the clinical skills required to use the register
It is clear from all the pilot sites that staff training is essential to successful conversations and
effective care planning at the end of someone’s life. This is true of the EoLC care register also; staff
training to ensure everyone is clear how the information on the register drives future care decisions is
necessary if they are to complete the register consistently.
Provide staff with the evidence of the benefits of the register
Staff in renal units are aware of the benefits of recording electronic information for the benefit of
themselves and others already, as most clinical staff in a renal unit will update the renal computer
system with information several times per day, and use it to look up much more information entered
by others. Unless the information added to the EoLC register is seen to be used to drive direct clinical
care, or improve standards through audit, it will be poorly utilised except by pockets of enthusiasts.
End of life care registers as an audit tool
In addition to establishing EoLC care registers, and providing feedback on implementation, each of
the pilot sites was asked to provide information to allow the register to be tested as a potential tool
for local and national audit. The National Service Framework (NSF) for renal services published in
2004 and 2005 included guidance on the standards of care expected for patients with end­stage
renal disease (ESRD), and specifically to this report those with advanced chronic kidney disease (CKD)
at the end of their lives. It led to the development of a National Renal Dataset (NRD) which
mandated the collection of approximately 900 items to monitor the implementation of the NSF in
patients with ESRD. However, the NRD contains very few items which allow for monitoring and
quality improvement for patients with CKD at the end of their lives. It was expected that
information from the pilot sites could help inform the development of such items.
Analysis populations
“Pilot ESRD population” in the audit was defined as patients with ESRD in the centre who were
cared for by a clinical team who had agreed to the pilot and were already involved in the broader
NHS Kidney Care pilots implementing the framework.
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33.
The populations included in the analysis were two separate sub­populations of the pilot ESRD population
in the collaborating centre – SET A and SET B. Appendix 14 shows the sets and audit questions.
Audit findings
All sites had implemented a register for end of life care. Data were received from each of the three
pilot areas covering activity between 1 August 2011 and 31 October 2011, although two sites in
each of the pilot areas was not able to provide summary data for comparison in time for publication.
Gratifyingly few patients died during the short audit period. Sub group analysis by age, gender or
race on each site was therefore not possible.
Table 3: Summary of audit findings
Site A Site B Site C
Number ESRD pts 679 505 1035
Question One
Number ESRD pts who
died
28 13 34
Died in hospital 14 6 8
Died in hospice 1 2 1
Died at home
(inc residential care)
12 5 2
Not known 1 0 23 (those not on register)
Number who died who
were on register
11 (and 1 who was offered
but declined)
5 11
Number who expressed a
preferred place of death
12 5 6
Number who died in that
preferred place
9 5 6
Question Two
Number of patients 611 16 1141
on EoLC register (Total on register) (Added during audit)
Number with a key
worker completed
98 NA NA
Known to specialist
palliative care
NA NA
EoLC tool in use 5522 NA NA
NA informationonthis notavailable
†
May include a small number of patients not with ESRD. In addition seven patients were identified by staff, but
declined the recommendation to join the register.
1
A very high proportion of patients did express a preferred place of death. Although it is noted that this decision
often evolves as the EoLC conversations progress it is estimated by this site to be the preference of at least 39% of
their patients to die at home.
2
Although not part of the original audit question this is the number of patients actively screened to assess whether
a further discussion was needed about end of life care needs.
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