Getting it right: end of life care in advanced kidney disease


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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.

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Getting it right: end of life care in advanced kidney disease

  1. 1. Kidney Care Getting it right: End of life care in advanced kidney disease MARCH 2012 Better Kidney Care for All
  2. 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 Cross Ref n/a Superseded Docs  n/a Action Required n/a Timing n/a Contact details 
  3. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. DATASET 31
  32. 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. 32
  33. 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. DATASET 33