end of life care in advanced kidney disease

End of Life Care in Advanced Kidney Disease: A Framework for Implementation

Kidney Care

National End of Life Care Progamme

Acknowledgements

This document was co-authored by Dr StephanieGomm, Consultant in Palliative Medicine, SalfordRoyal Foundation NHS Trust, and Dr KenFarrington, Consultant Nephrologist, ListerHospital, East and North Hertfordshire NHS Trust,and produced with the help, support andguidance of the multi-disciplinary team, including:

Dr Edwina Brown, Honorary Professor of RenalMedicine, Imperial College, London

Dr Aine Burns, Consultant Nephrologist, RoyalFree Hospital

Dr Jo Chambers, Consultant in Palliative Care,North Bristol NHS Trust

Professor Alistair Chesser, Associate ClinicalDirector & Consultant Nephrologist, Barts and theLondon NHS Trust

Maria Da Silva Gane, Renal Social Worker, ListerHospital, East and North Hertfordshire NHS Trust

Bob Dunn, Advocacy Officer, National KidneyFederation

Dr Celia Eggeling, Lead for Psychosocial Care,Epsom and St Helier University Hospitals NHS Trust

Professor John Ellershaw, Clinical Director, MarieCurie Palliative Care Institute, Liverpool

Dr Ken Farrington, Consultant Nephrologist, ListerHospital, East and North Hertfordshire NHS Trust

Robert Freeman, Policy Manager, End of Life careTeam, Department of Health

Stephen Lock Policy Manager, End of Life CareTeam, Department of Health

Dr Stephanie Gomm, Consultant in PalliativeMedicine, Salford Royal Foundation NHS Trust

Anita Hayes, NHS National End of Life CareProgramme Manager

Jane Heaton, Renal and Vascular Policy Manager,Department of Health

Beverley Matthews, NHS Kidney Care

Dr Martine Meyer, Consultant in PalliativeMedicine, Epsom and St Helier University HospitalsNHS Trust

Dr Fliss Murtagh, Research Fellow, Department ofPalliative Care, Policy and Rehabilitation, King’sCollege Hospital NHS Foundation Trust.

Dr Donal O'Donoghue, National Clinical Directorof Kidney Care

Professor Mike Richards, National Clinical Director,End of Life Care

Hilary Robinson, Clinical Nurse Specialist – ChronicKidney Disease, Salford Royal Hospitals NHSFoundation trust

Les Storey, National Lead (Preferred Priorities forCare) NHS End of Life Care Programme

Lucy Sutton, Director of Policy Development,National Council for Palliative Care

Professor Keri Thomas, National Clinical Lead forthe Gold Standards Framework Centre, HonProfessor End of Life Care, University ofBirmingham.

End of Life Care in Advanced Kidney Disease: A Framework for Implementation 1

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Contents

Foreword by Donal O’Donoghue and Mike Richards 4

1. Strategic context 6

2. Terminology 10

3. Trajectories of decline at the end of life 14

4. End of Life care tools 16

5. National End of Life Care Strategy (2008) 18

6. Identifying people approaching end of life care 20

7. Care planning 23

8. Co-ordination of care 24

9. Rapid access to care 25

10. Delivery of high quality services in all locations 26

11. Last days of life and care after death 29

12. Involving and supporting carers 30

13. Models of care 31

14. Education and training and continuous professional development 33

15. Measurement and research 35

16. Strategic commissioning 37

17. Funding: Operating framework 38

18. Raising the profile 40

19. Making it happen 43

20. References 44

Appendix one: Stages of kidney disease 47

Appendix two: Workforce groups levels of skills and knowledge 48



4 End of Life Care in Advanced Kidney Disease: A Framework for Implementation

Foreword:

As the National Clinical Directors for End of

Life Care and Kidney Care we warmly

welcome this document: End of Life Care in

Advanced Kidney Disease: A Framework for

Implementation. It is an important step in

ensuring that people with advanced kidney

disease receive the very best care in the last

years, months and days of their lives. This

framework complements and extends work

already underway at a national level. It builds

on the vision of High Quality for All1 which

requires all strategic health authorities to

produce end of life clinical pathways. This

informed the End of Life Care Strategy2,

which aims to ensure that all adults receive

high quality care at the end of life, regardless

of their age, condition, diagnosis and place

of care. The National Service Framework

(NSF) for Renal Services3 was the first

national framework to talk about death and

dying. End of Life Care in Advanced Kidney

Disease: A Framework for Implementation

now sets out how to achieve high quality

end of life care for people with kidney

disease in practice.

The Framework is about enabling people to

achieve high quality end of life care, rather

than ‘telling them what to do’. To achieve

this, it explores the ‘kidney specific’ issues of

end of life care focusing on patients opting

for conservative kidney management and

those “deteriorating despite” dialysis.

The overarching aim is to help people with

advanced kidney disease make informed

choices about their needs for supportive and

end of life care. Key elements of this are the

encouragement of timely recognition that

the end of life phase is approaching;

sensitive communication with patients and

carers, holistic assessment which includes

the needs of carers, joined-up planning

and effective multi-professional working

across boundaries linking kidney care,

primary care, community care and palliative

care services. The Framework aims to

support clinical leadership by providing

recommendations on measures to optimise

end of life care, for advanced kidney disease

for all treatment modalities; evidence-based

where possible. Where evidence is not yet

available, it suggests where further research



is needed, and draws on the collective

experience of professionals and people with

kidney disease.

Our responsibility is to “support people with

advanced kidney disease to live life as fully as

possible and enable them to die with dignity

in a setting of their own choice” (Renal NSF

Part 2)3. The End of Life Care in Advanced

Kidney Disease: A Framework for

Implementation now is a further step in

helping us to achieve this.

Donal O’Donoghue

National Clinical Director for Kidney Care

Mike Richards

National Clinical Director for End of Life Care


”

“

1. Strategic Context

1.1. Historically supportive and end of lifecare has been neglected andundervalued resulting in patchy healthand social care provision across thecountry. However, over recent years asubstantial amount of work has beendone to raise the profile of end of lifecare. Significantly, the government’s2005 election manifesto stated that, ‘inorder to increase choice for patients withcancer we will double the investmentgoing into palliative care services, givingmore choice to be treated at home’. This commitment was further developedin Our Health, Our Care, Our Say WhitePaper4 and followed by anannouncement in June 2006 that an Endof Life Care Strategy would bedeveloped. At this point it was madeclear that the aim of the strategy wouldbe to bring about improved access tohigh quality care for all adultsapproaching the end of life irrespectiveof age, diagnosis, gender, ethnicity,religious belief, disability, sexualorientation or socioeconomic status, orwhere that care was delivered.

1.2. End of life care was one of the eightclinical pathways developed by each ofthe Strategic Health Authorities (SHA) inEngland as part of the Next Stage

Review1. The SHA End of Life ClinicalLeads were able to draw on theemerging work from the strategy, tofurther refine this and contributesubstantially to the final End of Life CareStrategy2 which was published in July2008. The strategy aims to ensure thatall adults, regardless of their age,condition, diagnosis or place of care, areable to receive high quality care duringthis phase of life.

1.3. The importance of end of life care forthose with advanced kidney disease was acknowledged in the National ServiceFramework for Renal Services (NSF) Part2, published in February 2005 whichincluded a quality requirement for end oflife care3. The aim is to support peoplewith established kidney failure to live lifeas fully as possible and enable them todie with dignity in a setting of their ownchoice. It’s stated aim is that people withestablished kidney failure should:

..receive timely evaluation of theirprognosis, information about the choicesavailable to them, and for those near theend of life a jointly agreed palliative careplan, built around their individual needs

and preferences.




With the publication of the National End ofLife Care Strategy2 (2008) and building on theexisting Renal NSF and other specific kidneycare initiatives the time is now right to set outan End of Life Care Framework forImplementation which specifically meets theneeds of those with advanced kidney disease.This is the aim of this document.

There are about 44,000 people on RenalReplacement Therapy in the UK, over half ofwhom are on dialysis5. The median age ofthose starting dialysis is 65 years. More thanhalf have one or more co-morbidity. Hence,mortality is high. The expected remaining lifeyears of someone receiving dialysis in the agegroup 65-69 years is only 3.9 years comparedwith 17.2 years for an age-matched person inthe general population6. Around 15% ofpeople with advanced kidney failure opt not toundergo dialysis. These tend to be older, moredependent, and have more co-morbidities thanthose starting dialysis. Their survival is less,though may not differ significantly from that ofthose receiving dialysis with similar levels of co-morbidity and dependency7;8.

The quality requirement set out in the NSF3

concerns those who decide:

i. not to undergo dialysis,

ii. those who choose to withdraw fromdialysis after a period of treatment,

iii. those who are coming to the end oftheir lives while already on long-termdialysis,

iv. those who have a failing transplant anddecide not to return to dialysis.

It should be emphasised that a ‘no dialysis’option is not a ‘no treatment’ option:conservative management can relieve manysymptoms, and maximise the person’s healthduring the remainder of their life.

1.4. In April 2008, to initiate thedevelopment of an ImplementationFramework for end of life care inadvanced kidney disease, a one-dayworkshop of stakeholders, includingpatients and carers, was organised bythe Department of Health and NHSKidney Care, the service improvementarm of the Renal Policy Team. Theemerging key themes were identified as:

i. Patients and carers - Develop moreeffective ways to work in partnershipwith patients and carers in nationaland local planning, delivery andevaluation of care

ii. Definitions - Clarify and standardisethe terminologies used in the end oflife care setting for patients withadvanced kidney disease


iii. Commissioning - Make explicit anational policy on the funding of supportive and end of life care in thissetting to inform specialist and localcommissioning and contractingarrangements

iv. Coordination - Ensure effective co-ordination of care throughout thesupportive and end of life care stageof the kidney care pathway

v. Concordance - With national policy –Build on the National End of Life CareStrategy to identify common themesand needs

vi. Education and training - Developand implement an education andtraining strategy to ensure that allKidney care staff and other health andsocial care staff who contribute toend of life care possess theconfidence and the competence toaddress issues of supportive and endof life care in the setting of advancedkidney disease.

1.5. To take this forward a Kidney Supportiveand End of Life Care Steering Group wasestablished by the Department of Health,co-chaired by Dr Stephanie Gomm,Consultant in Palliative Medicine and Dr

Ken Farrington, Consultant Nephrologist.A consensus event was held on 10thSeptember 2008 organised by NHSKidney Care to agree the elements ofimplementing the National End of LifeCare Strategy in kidney care. The workfocused on the identification of thespecial characteristics which a “KidneySpecific” End of Life Care Pathwaywould require, over and above thoseoutlined in the National End of Life CareStrategy2 document. The dominant“Kidney Specific” factor was identifiedas the potential for renal replacementtherapy, ie Dialysis and Transplantation,to provide life-sustaining treatment and,once this has been initiated, the person’scontinuing dependence on it. This bringswith it specific expectations, and mayraise highly challenging and emotivedecisions about starting, continuing andceasing this treatment. The task was toweave together the renal replacementtherapy clinical pathway and the keyelements of the end of life clinicalpathway (as described in the NationalEnd of Life Care Strategy2) to produce aclinical pathway for the management ofadvanced kidney disease (figure 1).




Figure 1: Clinical Pathway for the Management of Advanced Kidney Disease

The End of Life Care PathwayDiscussions as end 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

Conservative ManagementPeritoneal Dialysis

Hæmodialysis

1. Assessment 2. Education/Modality Choice 3. Modality Preparation

Unplanned Referral

Planned Referral

Patient

Transplantationntt

enntt

oneealtt

1


”

“”

“2.1 General Definitions:

There is no simple way to define the start ofthe end of life care pathway. The definitionssuggested below are based on work by theNational Council for Palliative Care9;10 and theWorld Health Organisation11

2.11 End of Life Care as defined in theNational End of Life Strategy2 is aboutthe total care of a person with anadvanced incurable disease and doesnot just equate with dying. The phaseends in death and care of the bereavedbut the acknowledgement that thisphase has been entered may bevariable depending on the perspectivesof patient, carer and professional. Thephase end of life care may last forweeks, months or years. Timelyrecognition that a person is enteringthe phase of end of life care isparamount, since it enables thesupportive and palliative care needs ofthe patient and family to be identifiedand addressed as early as possibleduring the last phase of life and intobereavement.

A working definition of End of Life Care is:

…Care that helps all those with advanced,progressive, incurable illness to live as

well as possible until they die. It enablesthe supportive and palliative care needs

of both patient and family to beidentified and met throughout the lastphase of life and into bereavement. It

includes management of pain and othersymptoms and provision of psychological,

social, spiritual and practical support.

National Council for Palliative Care 2006.

2.12 Supportive Care is defined as:

...Care that helps the patient and theirfamily to cope with their condition and its

treatment, from pre-diagnosis, throughthe process of diagnosis and treatment, tocure, continuing illness or death and into

bereavement. It helps the patient tomaximise the benefits of treatment and

to live as well as possible with the effectsof the disease. It is accorded equal priority

to diagnosis and ‘curative’ treatment.

National Council for Palliative Care 2006.

2.13 Palliative care embraces manyelements of supportive care and hasbeen defined by the World HealthOrganisation11 as follows:

2. Terminology



”

“Palliative care is the active holistic care ofpatients with advanced progressive

illness. Management of pain and othersymptoms and provision of psychological,social and spiritual support is paramount.The goal of palliative care is achievementof the best quality of life for patients andtheir families. Many aspects of palliative

care are also applicable earlier in thecourse of the illness in conjunction with

other treatments.

2.14 Care of the dying is the care of thepatient and family in the last hours anddays of life. It incorporates four keydomains of care, physical,psychological, social and spiritual andsupports the family at that time andinto bereavement.

2.2. Terminology: The KidneyPerspective

The terms and generic definitions describedabove may all be applied to people withadvanced kidney disease. This termpredominantly refers to those with late stage 4and stage 5 chronic kidney disease (CKD) (seeappendix 1), either on renal replacementtherapy, being prepared for this treatment orhaving opted not to undergo it. There are anumber of “Kidney Specific” issues withrespect to terminology, which need to be

addressed. We have used the term “end oflife care in advanced kidney disease” toencompass the person’s supportive andpalliative care needs over a time period whichmay vary in lasting for weeks, months or yearsfor those people with advanced kidney diseaseirrespective of treatment modality. Peoplereceiving treatment by any of the modalitiesmay enter a phase when there is concern thatcontinued delivery of conventional care alonewill not meet the person’s needs. Such patientsrequire a holistic assessment of their needs inconjunction with their family and carers whichmay include advance care planning during thephase of end of life care. There are twoparticular modality settings though, whichrequire more detailed discussion.

The first relates to those people, at orapproaching “end-stage”, who choose not todialyse7;8. These are often elderly and frail, andoften have major disease of other organsystems in addition to their kidney problem.Provided referral to the nephrology clinic hasbeen timely, such people can be identified earlyand supportive treatment planned. Survival isvariable, and they may die of uraemia or ofassociated conditions. There is considerablevariation in the current terms used to describethis type of treatment with “supportive”,“conservative” or “maximum conservative”being the most commonly applied.



The second issue affects those already ondialysis and who have often been so for verymany years. Many such people also havediseases of other organ systems. As they getolder these problems may progress causingthe clinical situation to deteriorate to thepoint at which the person is in need of endof life care. Dialysis in this situation canbecome an additional burden, difficult toendure for the patient and for carers. In suchcases “deteriorating despite dialysis”,

situations often arise in which the decision tostop dialysis is taken. This is referred to as“dialysis withdrawal12” and often leads todeath usually over days or weeks. We needto be aware though that the requirement forsupportive and palliative care during thephase of end of life care often precedesdialysis withdrawal by many months or years,resulting in end of life care needs beingunder recognised and not addressed in atimely manner. It is also important to

We recommend use of the term “conservative kidney management” (Figure 2).

Figure 2: End of life care in Advanced Kidney Disease


Advanced Kidney Disease

Dialysis /Transplantation Conservative kidneymanagement

• Patients who choose not to dialyse• Receive all other aspects of kidney care• Pathway starts at time when dialysis would have started; though may depend on the patient’s circumstances

Recognition of end of life care needs

Kidney end of life care• All patients approaching end of life regardless of modality of treatment

• Able to access both kidney and supportive care services

• Strong and seamless links with primary, community and palliative care services

Last days of Life

• Deteriorating despite dialysis• Failing transplant - not returning to dialysis

Conservative kidney management



recognise that many people who are“deteriorating despite dialysis” will wish tocontinue receiving treatment to prevent ortreat problems such as fluid overload.Palliative and active approaches are notexclusive – best care is tailored to theindividual, and may include elements ofmanagement which extend across thesebroad definitions. In these circumstances itmay be appropriate to re-evaluate the goalsof treatment, sacrificing aspects only likely tobe of benefit in the medium- to long-term infavour of short-term comfort. This mayinvolve prescribing reduced duration andfrequency of sessions. This approach issometimes known as “palliative dialysis”.

In summary the following terminology isrecommended:-

• End of life care in advanced kidneydisease - end of life care for people withadvanced kidney disease irrespective oftreatment modality

• Conservative kidney management - full supportive treatment for those withadvanced kidney failure who, inconjunction with carers and the clinicalteam, decide against starting dialysis

• The person “deteriorating despitedialysis” - the person who is struggling tocope on dialysis, often with increasingfrailty, increasing dependency and multipleco-morbidities

• Dialysis withdrawal – cessation of dialysistreatment usually in someone“deteriorating despite dialysis” withevident need for end of life care, thedecision usually being made by the patientin conjunction with carers and clinicalteams

• Palliative dialysis – dialysis tailored toalign with the supportive needs of a person“deteriorating despite dialysis” and mainlyaimed at preventing or treating symptomssuch as those related to fluid overload. Itmay involve reduced duration andfrequency of sessions.


3. Trajectories of decline at the end of life

Four general patterns of decline at the end oflife have been described13 (Figure 3). Somepeople experience sudden death usually dueto a cardiac dysrhthymia (panel A). Many mayremain in reasonably good health untilexperiencing a steep decline in the last fewweeks or months of life related to a terminalmalignancy (Panel B). Others may experiencea slow deterioration punctuated by abrupt,

partially reversible troughs, such as in severeheart failure (panel C). Others still mayundergo a gradual insidious decline such asmight occur in the very elderly and generallyfrail (panel D). In the UK, the prevalence ofthe trajectories relating to cancer, organfailure, and dementia and/or frailty, are fairlyevenly distributed. Sudden death is lesscommon. Understanding the differences


Sudden DeathHigh

Low

Time

Death

A

Fun

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Organ FailureHigh

Low

Time

Death

C

Fun

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n

Terminal IllnessHigh

Low

Time

Death

B

Fun

ctio

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FrailtyHigh

Low

Time

Death

D

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Figure 3: Trajectories at the end of life



between these trajectories can help inplanning services more appropriately to meetpatients’ and carers' needs. The initialdiagnosis of a life-limiting condition, togetherwith critical events and changes in diseaseprogression as indicated in the trajectories,should be recognised in all care settings astriggers for the introduction and subsequentstepping up and stepping down of palliativecare input, based on holistic assessmentwhich includes the needs of carers, carecoordination, good planning, goodcommunication and regular review.

There is little information available on end oflife trajectories in those with advanced kidneydisease and the position in this setting maywell be more complex, due to thecontribution of dialysis, and to the highprevalence of extra-renal co-morbidity14.Nevertheless the concept of trajectories maywell be useful in this setting.


Recognised tools are already in place tofacilitate the assessment and review of peoplewith supportive and palliative care needsduring the phase end of life care. Theseinclude the use of palliative care registerswhich are part of the Quality OutcomesFramework (QOF) in primary care andprognostic indicators in primary care asintroduced by use of the Gold StandardsFramework15, the Preferred Priorities for Care(PPC) advance care plan16, and the use of anintegrated care pathway such as the LiverpoolCare Pathway for the Dying Patient (LCP)17 inthe last days of life.

4.1 The Gold Standards Framework

The Gold Standards Framework15 provides avaluable mechanism in primary andcommunity care for effective patient-centredplanning during the last 12 months of life.Pro-active care planning and timelymanagement of symptoms can enhancequality of life for patients and their familyand carers and help to prevent crises andunscheduled hospital admissions. TheFramework encourages primary care teams toenhance their knowledge and understandingof palliative care and underlines the need foreffective communication, co-ordination andcontinuity of care. It emphasises theimportance of:

• case identification

• holistic assessment

• care planning

• individual case discussions and casemanagement by a multidisciplinary team

• family and carer’s assessment and support.

This approach has now been extended toensure that patients with any condition, inany care setting, and their carers whohave been assessed as having end of life careneeds benefit from the principles and practiceexemplified by use of the Gold StandardsFramework. A GP practice serving apopulation of 10,000 would expect to seeabout two deaths each year of people withadvanced kidney disease.

4.2 Preferred Priorities for Care

Preferred Priorities for Care16 is an example ofan Advance Care Plan in which individuals canwrite down their preferences and priorities forcare during the end of life care phase. The document is held by the individualsthemselves so that they can take it with themif they receive care in different places. The approach aims to help people to preparefor the future by encouraging and assistingthem to think and talk about an area of care

4. End of Life Care Tools




that is often not discussed. Not all individualswill wish to take part in these discussions butall should have the opportunity to do so.Patients who have a Preferred Priorities forCare or an Advance Care Plan documentshould have this identified in their primary,secondary and out of hours records.

4.3 The Liverpool Care of the DyingPathway

The Liverpool Care Pathway17 is an integratedcare pathway designed for the care ofpatients who are in the last days/hours oftheir life, to facilitate effective planning andprovision of care during this critical time.Emphasis is on ensuring all aspects of care areconsidered including symptom control,communication and spiritual or religiousneeds. Regular review of the patient and carerby the multi-disciplinary team is recordedusing a single document. Review ofdocumentation is also carried out frequently.The pathway continues after death, aiming toensure good communication and care for thefamily and carers. The LCP has been adaptedto be used in the hospital, hospice, home orcare home.

Steps are underway to ensure that the LCP orits equivalent is implemented in all caresettings for patients dying from any advancedprogressive condition, including those withadvanced kidney disease who have opted notto have dialysis, have chosen to withdrawfrom dialysis and who are dying from otherco-morbid conditions. The LCP has specificguidelines in the form of treatmentalgorithms for pain control, agitation,respiratory tract secretions, nausea/vomitingand dyspnoea. Modifications of theseguidelines are available which are suitable foruse in patients with advanced kidneyfailure18;19. Ongoing collaboration andinvolvement with primary and palliative careservices is an important part of thisdevelopment.


5. National End of Life Care Strategyfor England (2008)

The twelve key areas addressed in the National End of Life Care Strategy2 are outlined in Table 2.The following sections discuss these, and other relevant issues in relation to end of life care inadvanced kidney disease.

Table 2: Key areas addressed in National End of Life Strategy


1. Raising the profile

2. Strategic commissioning

3. Identifying people approaching the end of life

4. Care planning

5. Coordination of care

6. Rapid access to care

7. Delivery of high quality services in all locations

8. Last days of life and care after death

9. Involving and supporting carers

10. Education and training and continuing professional development

11. Measurement and research

12. Funding



Figure 4: The National End of Life Care Clinical Pathway

The six steps of the end of life care clinical pathway are described in figure 4.

The End of Life Care Pathway

Support for carers and families

Information for patients and carers

Spiritual care services

Discussions as end of life approaches

STEP 1

Assessment, care planning and review

STEP 2

Co-ordination of care

STEP 3

Delivery of high quality services

STEP 4

Care in the last days of life

STEP 5

Care after death

STEP 6

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6. Identifying people approaching EndOf Life

Identifying when someone with advancedkidney disease is approaching the end of lifecare phase of their illness is importantbecause it enables a change of emphasisfrom cure and active prolongation of life tosymptom relief, maintenance of comfort andattention to psychological, social andspiritual concerns. An assessment of theneed for supportive and palliative care mayneed to be undertaken at any point in theclinical pathway for the management ofadvanced kidney disease (Figure 1) butspecifically:

Front-line clinical staff, particularly thoseinvolved in looking after people receivingdialysis, need training to enable them torecognize the signs of the approachingphase of end of life care, and incommunication skills to allow them tobroach issues with patients, carers, and withthe other professionals involved. The GoldStandards Framework (GSF) prognosticindicator guidance describes generaltriggers15 which may give clues as towhether a palliative approach is now themost appropriate. These include:

• significant weight loss (> 10% over 6months)

• severe hypoalbuminaemia (serum albumin< 25 g/l).

The GSF also refers to other kidney specificprognostic indicators including patients with stage 4 or 5 CKD whose condition isdeteriorating with at least 2 of the indicators below:

• Patients for whom the ‘surprise question’is applicable i.e. “would you be surprisedif this patient were to die in the next 6 to12 months?” This approach may beeffective in identifying those in the dialysispopulation with end of life care needs20


• At the onset of the choice of “conservativekidney management”

• When the person is “deteriorating despitedialysis” due to severe symptoms from co-morbid conditions or increasing dependency

• At times of crisis e.g. a recent stroke, newdiagnosis of malignancy

• For those who develop kidney failure as aconsequence of other life- threateningconditions or its treatment e.g. cancer

• Following kidney transplant failure whenafter appropriate discussion by the personwith their family and the kidney team adecision is made not to commence orrecommence dialysis

• Around the decision to withdraw fromdialysis.


• Patients choosing the no dialysis option,discontinuing dialysis or opting not to startdialysis if their transplant is failing

• Patients with difficult physical symptomsor psychological symptoms despiteoptimal tolerated renal replacementtherapy.

To facilitate care planning andcommunication consideration should begiven to creation within the local kidney unitof a “Cause for Concern” register tofacilitate the identification of those withinthe unit who are approaching the end of lifephase. The aim is to facilitate care planning,communication and use of end of life caretools and link with the palliative careregisters held by GP practices, which are partof the QOF.

Locality-wide end of life care registers arebeing tested and piloted as recommended inthe National End of Life Care Strategy2 andmay eventually link with GP-held palliativecare registers (part of the QOF) andultimately with those created in acutesettings.


“Cause for concern” register

• A ‘Cause for Concern’ support register -identifies patients ‘deteriorating despitedialysis’ and those patients deterioratingduring conservative management, aspotentially approaching the end of lifephase. It promotes a consistent andproactive approach in supporting patientsand staff to facilitate communication andcare planning

• The register facilitates regular review bythe multidisciplinary team of those on theregister and of new referrals

• The register links to a care pathway whichincorporates the Gold StandardFramework, Preferred Priorities for Care,Advance Care Plans and the Liverpool Care Pathway.


Starting the conversation with patients andcarers about end of life issues requiresjudgement, sensitivity and well-developedcommunication skills. Most people wish todiscuss these issues. Some do not. Theclinician needs to be sensitive to cues andnot burden the person with issues they donot want to discuss. It is important toconsider this aspect of care as an on-goingprocess not an event. Establishing a sharedview of the person’s current situation andlikely prognosis between the patient, thefamily and carers and among all members ofthe multidisciplinary team, is necessarybefore moving on to develop care plansrelating to future wishes and preferences forcare. Achieving this mutually shared view cantake time.

These issues bring with them a majortraining need touching all healthcareprofessionals concerned in the care ofpeople with advanced kidney disease. These needs should be addressed in theformulation of the local end of life careaction plans for patients with advancedkidney disease and linked to PCT and LocalAuthority end of life care strategic actionplans.



”

“7. Care planning

All people approaching the end of life, need to have their needs assessed, their wishesand preferences discussed and an agreed set of actions, reflecting the choices they make

about their care, recorded in a care plan. In some cases people may want to make anadvance decision to refuse treatment, should they lack capacity to make such a decisionin the future. Others may want to set out more general wishes and preferences about

how they are cared for and where they would wish to die. These should all beincorporated into the care plan. National End of Life Care Strategy2

As part of the on-going assessment of theneeds of patients with advanced kidneydisease, for all those identified as approachingthe phase of end of life care; individual careplans should be developed and agreed withthe patient and their carer(s)2;21. Planning carein the end of life phase is vital to ultimatelyachieving a “good death”, though what ismeant by this is highly personal. Planningshould be based on shared decision-makingand clear communication, acknowledging thevalues and preferences of individual patientsand their families and carers. People vary intheir need for information and in their desirefor involvement in clinical decision-making. The planning process and the content of thecare plan needs to be tailored accordingly.

The plan should:

• Be drawn up with a team-membercompetent in assessment processes withknowledge of local service providers, referralcriteria and support services and with access

to multidisciplinary input which includessocial workers, counsellors and palliative care specialists

• Include details of a nominated kidney key-worker

• Record the person’s preferences and thechoices they wish to make including, whenappropriate, their views on resuscitation

• Be patient-held, provided the patient wishes this

• Assess and record the individual needs ofcarers

• Be reviewed regularly

• Provide a record of on-going assessments,outcome of multidisciplinary team meetings,and communication with primary care andpalliative care services.

• Be available to all who have a legitimatereason for access, including out of hours andemergency/urgent care services. Holding acare plan electronically will facilitate this.



8. Coordination of care

Coordination of service delivery acrossboundaries is vital to ensure high-quality endof life care. Measures to facilitate this include:

• A register within kidney units of patients withend of life care needs (e.g. Cause for ConcernRegister). This should link with GP palliativecare registers and eventually with locality-wide registers, to facilitate identification,regular clinical review and holistic assessmentin kidney units, palliative and primary care.Care may be further improved by theintroduction of joint multidisciplinarymeetings

• The use of key-worker roles within renal,palliative and community services with eachtaking mutually agreed lead responsibilityfor coordination of the phase of end of lifecare of individual patients across care sectorboundaries

• Use of Advance Care Plans e.g. PreferredPriorities for Care, to document preferredtreatment decisions and choice of place ofcare. This document is held by the patient,and is recognised by and linked to end oflife care plans

• IT links between different sectors of care(kidney centre, district general hospital, andprimary care/community facility). This isalluded to in the national End of Life CareStrategy2. End of life care service providers

(including hospices) may soon have accessto the N3 NHS link. This may facilitate thedevelopment of a shared Summary CareRecord

• Identification of Clinical Leads (medical andnursing), for end of life care at local kidneyunit level, with responsibilities whichinclude care coordination

• Identification of a member of the localspecialist palliative care team as a lead forend of life care in advanced kidney disease,with responsibilities which include carecoordination

• Generic end of life care leads incommissioning, in primary and communitycare, whose roles will include,responsibilities for end of life care inadvanced kidney disease, including carecoordination

• The formation of a local group to overseethe development and implementation of alocal action plan for end of life care inadvanced kidney disease.



9. Rapid access to care

Rapid access to end of life care is important toprevent inappropriate default “cure-centred”care being administered in the event ofsudden, irreversible deterioration in a personwith advanced kidney disease, who is notknown to have an existing advance care plan.In these instances the importance of careful,timely assessment cannot be overemphasized.Eventualities such as these highlight theimportance of adequate anticipatory(advance) care planning.

In such circumstances, if the patient and/orfamily, express a wish to be cared for athome, then use may be made of the rapiddischarge pathway for care of the dying22.There will be a need for timely access tomedication and equipment including out-of-hours provision. The role of the clinical leadand key-worker is important in ensuringeffective operational links have beenestablished with all services involved in end oflife care including primary care, community,palliative care and the ambulance services.



10. Delivery of high quality services inall locations

“High Quality Care for All” (2008)1 identifiesquality as the organising principle of the NHS.End of life care of people with advanced kidneydisease needs to be delivered in a range oflocations at different stages of the care pathwayand in response to changing circumstances. A range of agencies need to work together ifpatient and carer experience is to be optimised.The needs of individuals are often intensifiedduring this phase of advanced kidney disease,and often added to by the presence of other co-morbid conditions. Health and social careprofessionals addressing these needs must workas a team so that support is co-ordinated andconsistent. This can often entail sharingresponsibilities and transferring skills butmaintaining clarity of leadership for the patientand family is essential. In addition to the role ofthe key-worker, senior clinical leadership(medical and nursing) is needed to ensure jointworking across organisational, cultural andprofessional boundaries to deliver high quality,seamless care whatever the setting. In mostinstances this will be the patient’s home oranother community setting. Services should bedelivered as locally as possible.

At an organisational level, hospital-basedkidney care team members withresponsibilities for end of life care, need towork with patients and carers representatives,

SHA end of life care pathway groups, primarycare trusts, commissioners, health care andsocial care providers, and third sectororganisations, to put in place clear pathways,robust governance arrangements and aquality improvement culture.

Kidney Centres

Actions may will facilitate the delivery of highquality end of life care services for patients withadvanced kidney disease include:

• Appointment of clinical leads (medical andnursing) for end of life care

• Developing the role of kidney key-worker

• Developing links with all sub-specialist arease.g. dialysis units, transplant units, andnephrology clinics. This may be through asystem of link workers who normally workin these areas but have regular training inend of life care and liaise with clinical leadsand key-workers

• Using the expertise of local hospitalspecialist palliative care teams

• Establishing a local end of life care group tooversee development and implementationof a local end of life care action plan forpatients with advanced kidney disease



• Developing the local action planincorporating

- Staff awareness and training

- Links with community, palliative careservices and out-of-hours services

- Joint working - development of regularkidney care and palliative caremultidisciplinary team meetings todiscuss those approaching the need forend of life care

- Enablement of mechanisms to ‘fasttrack’ assessments for NHS ContinuingHealth Care

- A framework to ensure the delivery ofappropriate care for people in the dyingphase of their illness and after death byuse of The Liverpool Care Pathway forthe Dying

• Developing improved facilities for patientsand their families. Areas highlighted by theKing’s Fund report23 include: a room wherefamily members can talk privately; informal‘gathering’ spaces where family and friendscan meet to confer and talk with staff; andguest rooms where close family and friendscan stay overnight.

The community (mainly in aperson’s home)

The establishment of clinical lead roles for endof life care in advanced kidney disease, aPalliative Care lead role for end of life care inthis setting, the Kidney key-worker role andthe local kidney end of life care steeringgroup will facilitate:

• Shared care planning for all those with endof life care needs in patients with advancedkidney disease

• Establishment of links with Primary Caresystems to identify, assess and plan for thecare of people approaching the end of lifee.g. GSF and PPC

• Prevention of unnecessary hospitaladmissions24

• Out-of-hours providers with access to up-to-date information on patient’spreferences as expressed in their care plan

• Effective planning for the need for promptaccess to additional medicines, e.g. the useof anticipatory prescribing and palliative care‘Just in Case’ boxes in the patient’s home.



Hospices

The establishment of clinical lead and keyworker roles for end of life care in advancedkidney disease, and of a local kidney end oflife care steering group will also facilitate:

• Full integration of hospices in the strategicplanning for end of life care services forpatients with advanced kidney disease

• The expert resource of hospices asspecialists being available to those withadvanced kidney disease enabling:

- admissions for those with complex pain & symptom control and care forthe dying

- provision of day therapy andcommunity outreach teams

• Education and training in communicationand palliative care for renal professionals byhospice and specialist palliative careprofessionals

• Staff exchanges between kidney units andhospices to improve knowledge and skillsof their respective services.

Ambulance services

Actions which will facilitate the continuity andcoordination of the delivery of high qualitykidney end of life care services include:

• Development of clinical lead for kidney endof life care and kidney key-workers roleswith responsibilities to include developmentof appropriate links with ambulanceservices, and to facilitate coordinated care

• Education and training of staff in theambulance service on end of life care issues

• The availability of rapid, timely, transport ofpatients to their preferred place of care atend of life

• Development and improvement ofinformation systems, to facilitate thesharing of patient information to facilitate:

- staff awareness of the needs andwishes of patients

- out-of-hours communication e.g. GSFhandover forms

- appropriate use of rapid dischargepathway for care of the dying.



11. Last Days of Life and Care after Death

High quality care at the end of life is achievedthrough shared decision-making and clearcommunication which acknowledges thevalues and preferences of individual patientsand their families. The characteristics of careduring the last days of life, which haveconsistently been found to be important fromthe patient’s perspective are, receivingadequate pain and symptom management,avoiding inappropriate prolongation of dying,achieving a sense of control, relieving burdenon loved ones, and strengtheningrelationships with loved ones25. The means toachieve high quality care in the last days oflife should be addressed in the local actionplan which should incorporate:

• An agreed care plan, which should be inplace for all patients with advanced kidneydisease approaching last few days of life.The plan should address patient preferencesfor care in the last days recognising thespecific physical, psychological, spiritualneeds and addressing the cultural needs ofthe dying individual and their family.

• Recording of resuscitation status. If notpreviously addressed, there is no need toinitiate discussion at this stage, as for anyother futile treatment. Patients consistentlyreport that they do not wish to be

subjected to interventions with minimal, ifany, potential for benefit26. In this contextcommunications indicating the intention toallow a “natural death” may be moreappropriate than “Do Not Resuscitate”orders.

• The need for effective symptom control.Pain, agitation, myoclonus, dyspnoea,nausea and respiratory tract secretions, aremajor symptoms in patients with advancedkidney failure in the last days. It is goodpractice to prescribe in anticipation ofcommon symptoms deploying the easiestand least invasive route of administration.

• Use of Liverpool Care Pathway orequivalent for the care of those dying withadvanced kidney disease in all settings

• Use of the Liverpool Care Pathwaysymptom control guidelines for prescribingin advanced kidney disease.18

• An integrated approach to care after death.This should include the provision ofculturally appropriate bereavement support,and the use of the Liverpool Care Pathwaycare after death section for all deaths.



12. Involving and Supporting Carers

The family, including children, close friendsand informal carers of people approachingend of life, have a vital role in the provision ofcare, especially for patients with advancedkidney disease who have often required anintense level of support for many years oreven decades.Their enormous contributionoften goes unrecognised and needs to beformally acknowledged. Over what is oftenmany years of caring they will frequently havedeveloped very close relationships withmembers of the renal team. In spite of this, itwill often be the first time they have cared forsomeone who is dying.

They need:

• Information about the likely progress of theperson’s condition. Time scales may bedifficult to predict, but it is important forthe carer to able to gauge how long theywill be able to sustain a certain level ofcommitment, which is often in the contextof work and other family commitments

• Information about services which areavailable

• Practical and emotional support bothduring the person’s life and afterbereavement.

Carers have the right to have their own needsassessed and reviewed and to have a carer’scare plan including plans for their supportafter the death of the person. This is amplifiedin the DoH Carers Strategy (2008)27. Theyalso need access to culturally appropriatebereavement services.



13. Models of Care

Building on what has already been discussed above, suggested models of care for conservativekidney management in particular and end of life care in advanced kidney failure in general, arepresented schematically in figures 5 and 6.

Figure 5: Schematic Model of Conservative Kidney Management


Conservative kidney management

• Patients who decide against starting dialysis• Patients usually commence this pathway at the time they would otherwise have commenced dialysis

Which patients?

• All aspects of care apart from dialysis• Patients are usually frail and often elderly. Care should be as close to home as possible• Unnecessary hospital visits should be avoided • Strong links with primary/community care services are needed. Many patients have other significant co-morbidities. The renal team may only be advisory• Patients and carers should have easy access to the renal team. A team member who understands an individual patients situation should be easily contactable• Specialist Palliative Care for difficult symptoms, complex psychological care, and terminal care where needed

What should the service provide

• Patients should be able to access all relevant members of the multi-disciplinary team, which is usually led by a nephrologist and/or a specialist nurse. • A key-worker should be named for each patient, ensuring that co-ordination of care is provided• Dietetic, anaemia, social work, psychological and spiritual care should be provided• Integration with Primary Care, and Community Nursing Services is essential, as is access to Specialist Palliative Care• Team work and good communication are essential to ensure patients and carers have access to personalised advice and support when they need it• Records and communications should be constructed so that 24 hour a day service is available in case of crisis

Who should be in the team?


Figure 6. Schematic Model of End of Life Care in Advanced Kidney Disease


End of Life Care inAdvanced Kidney Disease

• Patients who are recognised to be approaching the phase of end of life• Patients may be on dialysis, with a transplant, or receiving conservative kidney management• In some patients dialysis may be discontinued, others may opt to continue this treatment.

Which patients?

• Symptomatic, supportive and palliative care. Team work should involve close communication and support from the palliative and primary care teams• Preparation for death – place of care, discussion with patient and carers, ensuring advice and help available at all times from knowledgeable member of renal team • Co-ordination of physical, psychological and spiritual care, by joint working with primary/community and secondary care services • Care and support after death for carers and families

What should the service provide

• Every renal unit should have a lead clinician for Kidney End of Life Care• The role of the Key worker with responsibility for coordinating the end of life care for an individual patient should be developed• Links with all subspecialist areas of the unit eg dialysis units, transplant units, and nephrology clinics should be developed – perhaps through a system of link nurses who work in these areas but have received specific training and liaise with the Kidney End of Life Care Leads/Key-Workers• Strong links with palliative care teams and primary care are needed

Who should be in the team?


14. Education and training andcontinuing professional development

A workforce, education and training strategyis central to achieving high standards of endof life care in advanced kidney disease. TheDepartment of Health has commissioned Skillsfor Care and Skills for Health working incollaboration with the Academy of the RoyalMedical Colleges to lead a joint project toidentify a set of common core principles andcompetencies for end of life care28. This workwill be published in June 2009. The followingare seen as important core elements relatingto kidney end of life care:

• The core common requirements forworkforce development are:

o Training in communication skills –basic, intermediate and advanced levelas appropriate

o Assessment of the person’s needs andpreferences

o Advance care planning

o Symptom management

• The National End of Life Strategy documentclassified the Clinical Workforce into 3 tiersaccording to their working exposure to Endof Life issues (see Appendix 2)

o Group A – Staff working in PalliativeCare Services who essentially spendthe whole of their working livesdealing with end of life care

o Group B – Staff in other specialtieswho frequently deal with end of lifecare as part of their role

o Group C – Staff working as specialists orgeneralists within other services whoinfrequently deal with end of life care.

In the kidney setting many of clinical staffwould fall into Group B though some such asthe clinical leads and key workers wouldbelong to Group A.

• Training in End of Life Care issues shouldform part of the curriculum for core medicaltraining and specialist training in Nephrologyand for specialist renal nursing training

• Each SHA, as part of the NHS Next StageReview End of Life Care workstream, isfocussing on end of life care workforcedevelopment. It is important that staffcaring for people with advanced kidneydisease, are included in this. As part of thisoverall framework each kidney unit shouldhave a multidisciplinary group overseeingeducation and training about end of lifecare issues. The lead clinicians, medical andnursing for end of life care should play akey role

• Regional training days should be developedfor renal, palliative care and primary caremultidisciplinary teams



• There is a need to enhance generalcommunication skills training for all staffinvolved in end of life care. Advancedcommunication skills training should berolled out to all senior clinical and middlegrade clinical staff - similar to the nationalroll out for advanced communication skillstraining for cancer

• Training in kidney end of life care shouldform part of appraisal discussions for allkidney unit clinical staff

• Learning resources should be developed,building on e learning for healthcare end oflife care modules, with examples of goodpractice from different kidney units,electronic resources of patient voices andstories from families. Booklets on aspects ofend of life care to be accessible to patientsat clinics, on wards, and in dialysis units

• There are also training requirements forpalliative care clinicians relating to theunderstanding of advanced CKD and it’smanagement – multi-professional studydays will provide mutual benefit for renaland for palliative care clinicians

• An education programme in end of life carein advanced kidney disease will bedeveloped, piloted in a small number ofunits, and evaluated, prior to being offeredmore widely. This will be linked to thecurrent development of the national end oflife core principles and competences for thehealth and social care workforce in end oflife care28.



15. Measurement and Research

Recommended measures are:

• Kidney units should participate in Nationalaudits e.g. Liverpool Care Pathway:National Care of the Dying Audit –Hospitals29 and the Gold StandardsFramework After Death Analysis, which iscurrently being piloted in primary care

• Future audits of end of life care inadvanced kidney disease to incorporateelements included in the draft QualityMarkers for End of Life Care30 publishedby the Department of Health in November2008 and currently awaiting outcome ofconsultation. A series of quality markersare proposed, based on the structures andprocesses of care most likely to yield goodoutcomes for people approaching the endof life, their families and carers. Themarkers are associated with suggestedmeasures for assessment of compliance,which commissioners and providers shoulduse to audit and evaluate services. Such ameasure would be the availability oflocality-wide registers. These markerscould be adapted for local and kidney carenetwork use, and are due for publicationin Spring 2009

• Utilisation of national public awarenessassessment tool to assess trends andattitudes within specific communities.

A tool to assess change inawareness/attitudes is under development.Local end of life care plans to includeactions on awareness/attitudes. (TheNational Council for Palliative Care areestablishing a Coalition to lead this worksupported by the Department of Health)

• Use of VOICES questionnaires to bereavedrelatives & carers31 with consideration ofmodification of VOICES to address thekidney-specific issues such as the decision- making processes surrounding thecontinuance and withdrawal of dialysis

• The National Renal Dataset specifies theinformation to be collected by renalservices in England, in order to assessprogress against the National ServiceFramework for Renal Services. Furtherdevelopment of the dataset should includedetails of patients receiving end of lifecare with advanced kidney diseaseincluding those undergoing conservativekidney management, and thosewithdrawing from dialysis

• Development of the Renal Registry couldinclude data on conservative kidneymanagement, patients withdrawing fromdialysis, and other aspects of end of lifecare in advanced kidney disease



• Support for the UK Kidney ResearchConsortium in fostering the developmentof portfolio studies in end of life care

• Support for NIHR Comprehensive ClinicalResearch Network’s Local and NationalRenal Speciality Groups in enhancingopportunities for recruitment into suchstudies

• Establishment of collaborative crossboundary audit and R&D in end of lifecare between kidney units, primary careand specialist palliative care with collectionof patient and carer reported outcomemeasures including quality of life, controlof symptoms and quality of death.



16. Strategic Commissioning

Dialysis and Transplantation are currentlysubject to Specialised Commissioningarrangements. Payment by Results for dialysisservices is planned to be introduced in2010/11 with a Best Practice Tariff. Thecurrent plans for the introduction of tariffs forPalliative Care and End of Life Care services, inthe general context only includes hospitalspecialist palliative care services for April 1st2009 and are not developed in the clinicalservices for advanced kidney failure. Hence,local commissioning agreements along theclinical pathway for Conservative KidneyManagement programmes and furtherdevelopments in end of life care services forpatients with advanced kidney disease isrequired. The commissioning aim should be toprovide a service for patients with advancedCKD (Stages 4 or 5) which meets their end oflife care needs irrespective of sector(s) of caredelivery, as defined in the end of life carestrategy.2



17. Funding: Operating Framework

Delivery of a national tariff is a complicatedprocess. It must be built over a number ofyears and all the building blocks must be inplace. The Department of Health will beconsidering how work on a national tariff forpalliative/end of life care may be takenforward after reviewing the latest cost data.This work will not be limited to kidneyconditions; it will consider palliative/end of lifecare more broadly.

Currencies, that is, Healthcare ResourceGroups, for specialist palliative care serviceshave already been developed and there aretwo Payment by Results (PbR) End of Life Care“development sites” - organisations whichare developing new funding models forservices at the local level. These will beevaluated in 2009 to extract useful learning toinform central PbR development. The Department has also begun work ondeveloping currencies for community services,although this is even more complex. It isaiming to conclude this work by 2010.Local agreements with commissioners willtherefore be required (Figure 7).

• Every PCT should have clarity on their localcommissioning arrangements to ensurethat end of life care in advanced kidneydisease and conservative kidneymanagement is adequately resourced.

This should be an integral part of worldclass commissioning.

• The Lead Commissioner for SpecialisedRenal Services may wish to review andrevise the commissioning arrangementsrelating to conservative kidneymanagement and end of life care inadvanced kidney disease in general inpartnership with their constituent PCTs

• Funding structures should support modelsof care in which primary care, palliative andrenal teams work synergistically, and forcare to be at home whenever possible.Arrangements which mean that kidneyunits are reimbursed only for hospital visitsshould be discouraged since it is importantthat care takes place as near to thepatient’s home as possible

• Local tariffs for conservative kidneymanagement should be developed,outlining what aspects of care are to beincluded

• NHS Kidney Care to support developmentsites for system-wide implementation ofthis framework (See section 14).



Figure 7: Principles of End of Life Care in Advanced Kidney Disease: A Model for Funding


Principles of End of Life Care inAdvanced Kidney Disease

• End of Life Care should be seen as an essential part of Kidney services • Local arrangements should be in place with PCTs to ensure that End of Life Care for patients with advanced kidney disease and conservative kidney management, are adequately resourced

A Core Service

• Every unit should have a “Clinical Champion”, who will usually be the Lead Clinician for end of life care• Links with palliative care teams, hospices and primary and community care teams should be strong and functional • Key workers roles should be developed in all kidney units.

Framework

• Funding structures should support models of care in which primary care, renal and palliative care teams work synergistically, and in which care is delivered at home whenever possible. • Funding arrangements which mean that kidney units are only reimbursed for hospital visits should be discouraged• Local tariffs for conservative kidney management should be developed, outlining what aspects of care are included.

Funding and Finance


18. Raising the profile

Improving end of life care will involvePrimary Care Trusts (PCTs) and LocalAuthorities (LAs) working in partnership toconsider how best to engage with their localcommunities to raise the profile of end of lifecare. This may involve engagement withschools, faith groups, funeral directors, carehomes, hospices, independent and voluntarysector providers and statutory employersamongst others. Kidney care, primary care,social care and palliative care services andkidney patient associations are integral toensure that end of life care in advancedkidney disease is included and prominent inthis change in public awareness.

The kidney community is tight-knit bothnationally and locally. This provides majoropportunities for raising the profile of kidneyend of life care.

18.1 At a national level opportunities existin a number of areas:

• Patient information: Kidney patientsorganisations such as the National KidneyFederation (NKF) and other organisationsinvolved in the commissioning, productionand dissemination of high-quality patient-centred information, to ensure appropriateprominence of material related to kidneyend of life care

• Inclusion of end of life care for patientswith advanced kidney disease as part ofthe death, dying and bereavementcoalition during implementation of thenational end of life care strategy2

• Production of clinical guidelines:Specialist societies such as the RenalAssociation concerned in formulation ofguidelines, to ensure appropriate emphasison kidney end of life care

• Workforce planning: Specialist societiessuch as the British Renal Societyconcerned in planning of the renalworkforce to take account of the needsfor end of life care in advanced kidneydisease. There is also a need for thespecialist palliative care workforce to planfor an expansion in the referral of thisgroup of patients, and for an educationrole in supporting end of life care forpatients with advanced kidney disease

• Education and training: Royal Collegesto ensure end of life care is appropriatelyrepresented in curricula for renalspecialists in training, and in therequirements for ongoing continuingprofessional development. Specialistsocieties such as the Renal Association,and the British Renal Society, concerned inthe provision of Education and Training for health care professionals, to ensureappropriate emphasis on end of life care



• Research: Organisations concerned in thestrategic development and/or funding ofresearch, such as Kidney Research UK, theBritish Renal Society and the Associationof Palliative Medicine to ensureappropriate prominence for proposalsrelated to end of life care in advancedkidney disease. There is a need to establishlarge multi-centre studies, which would befacilitated by the development of nationaland regional collaborations betweenservice and academic departments ofnephrology, primary care and palliativecare

• Measurement UK Renal Registry data toexplore the benefit of a dataset onconservative management, dialysiswithdrawal, to ensure appropriateemphasis on end of life care

• Steering Group: The formation by NHSKidney Care of a National Steering Groupto oversee and advise on theimplementation of the End of Life Care inAdvanced Kidney Disease Framework, tofacilitate relevant initiatives includingthose listed above, and to influence policydecisions relating to servicecommissioning, education and trainingprogrammes and research anddevelopment opportunities concerningkidney end of life care

The Steering Group will need to link withSHA leads for other long-term conditionsas an integral part of other end of lifeclinical pathways such as advanced heartfailure.

18.2 At the local level opportunities exist for:

• Local Kidney Patient Associations to beinvolved in the dissemination of informationrelating to end of life care within the localrenal community and beyond.

• The appointment of clinical leads, medicaland nursing, for end of life care, at localkidney unit level, who link with end of lifecare leads in commissioning, in primarycare, community services, and in palliativecare services

• The establishment of the role of the endof life care key-worker for patients withadvanced kidney disease to co-ordinatepatients’ care, promote continuity, andensure good access to information andadvice. The key worker role may changeduring the persons illness trajectory asneeds change, since it is essential that theperson is guided by the healthprofessional most appropriate for currentneeds e.g. CKD nurse, dialysis nurse,district nurse, community matron orpalliative care nurse specialist



• The nomination of a member of the localpalliative care team as palliative care lead for end of life care in advancedkidney disease

• The involvement of clinicians, patients andcarers in training in end of life care inadvanced kidney disease, both as trainersand trainees

• The formation of Local Steering Groups tooversee development and implementationof a local end of life care action plan forpatients with advanced kidney disease.This development should be led by thekidney centre working with primary care,palliative care and the voluntary sectorservices. The groups could also influencethe commissioning processes through

dialogue with Primary Care Trusts,Strategic Health Authorities, SpecialistCommissioning Groups and Kidney CareNetworks. The membership of the groupsshould include clinical leads for end of lifecare, patients, carers, and end of life careleads in commissioning, in primary andcommunity care, and in palliative careservices

• There are opportunities to link initiatives inend of life care for patients with advancedkidney disease, with those of otherassociated clinical conditions e.g.advanced heart failure. This will enablealigned support.



19. Making it Happen

Leadership is needed at all levels to providedirection, motivation, support and todemonstrate a commitment to staff working inthis area. Steps which will facilitate this include:

• Implementation of this End of Life Care inAdvanced Kidney Disease Framework

• Implementation of the national initiatives toraise the profile of End of Life Care inAdvanced Kidney Disease (see section 18.1)

• Renal workforce and palliative careworkforce planning initiatives to takeaccount of the needs of end of life care inadvanced kidney disease

• Strategic commissioning of cross-organisational models of service for end oflife care in advanced kidney disease,including developments to enhancecoordination of care and education andtraining of the workforce

• Partnership working between SHA End ofLife Care Pathway leads, PCT End of LifeCare Leads and Kidney End of Life Care Leads

• The setting up of a National Kidney End ofLife Care Steering Group to oversee thedevelopment and implementation of theEnd of Life Care in Advanced Kidney DiseaseFramework and to facilitate other initiativesincluding those relating to service

commissioning, education and trainingprogrammes and research and developmentopportunities concerning end of life care inthis setting

• The establishment of local agreements withcommissioners to ensure end of life care inadvanced kidney disease and conservativekidney management is adequately resourced(see section 17)

• The nomination of Lead Clinicians (medicaland nursing) for end of life care in eachkidney unit

• The nomination of a member of the localpalliative care team in each locality aspalliative care lead for end of life care forpatients with advanced kidney disease

• The development of the role of Key Workersin end of life care in each kidney unit linkingto key workers in community settings

• Recognition of key role of patients andcarers representatives on local and nationalend of life care steering groups for patientswith advanced kidney disease

• The formation of local groups to overseedevelopment and implementation of a localaction plans for end of life care in advancedkidney disease, and to encourage andfacilitate other local initiatives.



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Appendix 1

Stages of Kidney Disease

Stagea GFR Description(ml/min/1.73 m2)

1 ≥ 90 Normal or increased GFR, with other evidence of kidney damage

2 60–89 Slight decrease in GFR, with other evidence of kidney damage

3A 45–59 Moderate decrease in GFR, with or without other3B 30–44 evidence of kidney damage

4 15–29 Severe decrease in GFR, with or without other evidenceof kidney damage

5 < 15 Established kidney failure

a Use the suffix (p) to denote the presence of proteinuria when staging CKD (recommendation 1.2.1).



Appendix 2

Workforce groups levels of skills and knowledge (adapted from End of LifeCare Strategy2)

Group definition

Group A – Staff working in specialist palliative careand palliative care and hospices who essentiallyspend the whole of their working lives dealing withend of life care. This includes:• Physicians in palliative medicine, palliative care

nurse specialists and allied health professionals,hospice pharmacists, senior palliative carepharmacists, chaplains and all health and socialcare staff working in or with hospices. End of lifecare leads and key workers for patients withadvanced kidney disease.

Group B – Staff who frequently dealwith end of life care as part of their role. This includes:• Secondary care staff working in A&E, acute

medicine, respiratory medicine, care of the elderly,cardiology, oncology, renal medicine, long termneurological conditions, intensive care, hospitalchaplains and some surgical specialties

• Primary care staff including GPs, district nurses,community matrons, some care home staff,ambulance staff and community based carers

• Specialist nurses, such as in heart failure, chronickidney disease and dialysis, based in primary orsecondary care

• Community pharmacists.Group C – Staff working as specialists or generalistswithin other services who infrequently deal with endof life care. This includes: • Other professionals working in secondary care or

in the community, e.g. staff in care homes andextra care housing, day centre and social care staffnot involved in hospices, domiciliary care andprison services staff.

Minimum levels of skills and knowledge

• All staff should have the highest levels ofknowledge, skills and professional development(CPD).

• These should include communication skills,assessment, advance care planning andsymptom management as they relate to end oflife care.

• Staff will need to be supported to developexisting skills and knowledge to enable them todevelop or apply of life care through CPD, orfurther specialist training and overcome anypersonal or team barriers

• This group has the greatest potential trainingneed, in particular secondary care doctors (andtheir immediate teams), GPs (and teams) anddistrict nurses, who may be key in the ‘trigger’discussion at the start of the pathway and withongoing continuity of care

• These should include communication skills,assessment, advanced care planning andsymptom management as they relate to end oflife care.

• This group must have a good basic grounding inthe principles and practice of end of life care andbe enabled to know when to refer or seekexpert advice or information

• Many of the staff within care home settings andproviding domiciliary care in this group havesignificant unmet training needs, includingaccess to induction programmes.



www.kidneycare.nhs.ukwww.endoflifecareforadults.nhs.uk

For further copies contact:PrologProlog HouseSudburySuffolkCO10 [email protected]

Kidney Care

National End of Life Care Progamme

end of life care in advanced kidney disease

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