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

Transcription

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

2 Reader Page Title Authors Getting it right: End of life care in advanced kidney disease 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 Publication Date March 2012 Target Audience Circulation List Description/purpose Cross Ref Superseded Docs Action Required Timing Contact details Commissioners, kidney care community, patients and patient associations, primary care, palliative care staff working with kidney services, hospice staff 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 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. n/a n/a n/a n/a admin@kidneycare.nhs.uk

3 Contents Foreword 04 Executive summary 05 Section 1: Introduction Section 2: The framework Section 3: Project groups Section 4: Learning from the project groups Section 5: Recommendations Section 6: End of Life Care in Advanced Kidney Disease dataset Acknowledgements Abbreviations and Glossary References Appendices CONTENTS 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 03

4 Foreword In the NHS we care for people from the cradle to the grave. The care and compassion offered to people at the end of their life is just as important as that provided to help them stay healthy. In kidney care, we are well placed to identify patients who may be nearing the end of life and to work with them, their families and carers, and other health and care services to help them live as full a life as possible and to die with dignity in a setting of their own choice. Kidney services have led the way in improving end of life care. The National Service Framework for Renal Services was the first to talk about death and dying. We built on this, and the momentum around the national pathway for end of life care, to develop a specific end of life care framework for patients with advanced kidney disease. It explores the kidney specific 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 co ordinate care, and improved training and education for staff can all make a real difference to the care we provide our patients at the end of life. I would like to thank colleagues in the project groups and the End of Life Care in Advanced Kidney Disease board for their tremendous efforts, their achievements, and the enormous contribution they have made to improving end of life care. I hope that colleagues across the NHS will find the experiences and learning outlined in this report valuable in informing their own efforts to improve this vital aspect of care for kidney patients. Beverley Matthews Director NHS Kidney Care 04

5 Executive Summary The National Service Framework for Renal Services, published in 2004 and 2005, was the first to tackle the issues of death and dying. It includes an aim to support those with established kidney disease to live as full a life as possible and to die with dignity in a setting of their own choice. Further work on the importance of end of life care led to the publication of the National End of Life Care Strategy in 2008 which set out a National End of Life Care Clinical Pathway, and, in 2011, an end of life care quality standard from NICE. In 2008, a Kidney Supportive and End of Life Care Steering Group was established to develop a framework to specifically meet the needs of those with advanced kidney disease and in 2009, End of Life Care in Advanced Kidney Disease: A Framework for Implementation was published. The overarching aim of the framework is to help people with advanced kidney disease make informed choices about their needs for supportive and end of life care. Key elements of the framework are timely recognition that the end of life phase is approaching; sensitive communication with and involvement of patients and carers; co ordinated multi professional 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 Co ordination 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 06 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 out patient 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.

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 co ordinator 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 experiences of the renal professionals, and the extent they will be responsible for end of life care. Kidney specific advanced communication skills training has been developed, and should become more widely available. The consistent recording and sharing of care planning information has been identified as one of the main ways to enable improved end of life care for patients. This report also includes a review of the learning from the project groups and the National End of Life Care Programme on establishing a core dataset. EXECUTIVE SUMMARY 07

8 1: Introduction The National Service Framework (NSF) for Renal Services 1 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 NHS 2,3 that further emphasised the importance of end of life care, culminating in the publication of the National End of Life Care Strategy 4. 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 Implementation 5 referred to as the framework in this document. End of Life Care Pathway Step 1 Step 2 Step 3 Step 4 Step 5 Step 6 Discussions as of life approaches Assessment, care planning and review Co-ordination of care Delivery of high quality services Care in the last days of life Care after death Open, honest communication Identifying triggers for discussion Agreed care plan and regular review of needs and preferences Assessing needs of carers Strategic coordination Coordination of individual patient care Rapid response services High quality care provision in all settings Hospitals, community, care homes, extra care housing, hospices, community hospitals, prisons, secure hospitals and hostels Ambulance services Identification of the dying phase Review of needs and preferences for place of death Support for both patient and carer Recognition of wishes regarding resuscitation and organ donation Recognition that end of life care does not stop at the point of death Timely verification and certification of death or referal to coroner Care and support of carer and family, including emotional and practical bereavement support Support for carers and families Information for patients and carers Spiritual care services 08

9 2: The Framework The framework describes the six steps of the national pathway in terms of caring for kidney patients approaching end of life: i. To ensure that all those who need it receive appropriate care, they must first be identified. A cause for concern register is recommended for all renal centres; this may ultimately be linked with GP palliative care registers to ensure seamless care across healthcare sectors. ii. People vary in the level of involvement that they wish to take in the planning of their care at the end of life; consequently, planning needs to be sensitive to individual requirements. This plan should be available to all staff who may be involved with caring for the patient during the end of life phase. iii. Delivery of care should be co ordinated 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 high quality 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 co ordinate the development and progress of a number of end of life care work streams enabling consistent implementation of the NSF for renal services. One of the work streams facilitated and overseen by the board, and led by NHS Kidney Care, supports the introduction of the framework within kidney centres, working in partnership with primary and palliative care organisations. THE FRAMEWORK 09

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

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

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

13 All the groups have included use of the Surprise Question (SQ) Would you be surprised if this patient died in the next 12 months? If the answer is no then the patient may be approaching end of life. Use of the SQ has been shown to be an effective aid in identifying those approaching end of life 6,7. In Bristol, the kidney unit team worked with palliative care colleagues to develop a patient completed 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 Schedule 8,9 and POS s 10. The screening tool was created by modifying the Gold Standards Framework Poor Prognostic Indicator Guide 11 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 on going 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 multi disciplinary meetings (MDM) to review patients and identify those who are approaching end of life and suitable for the supportive care register. In one maintenance haemodialysis team the meeting is now held monthly and includes: Review of patient deaths in the previous month, including whether advance care planning discussions could have been held with the patient and family A review of any patients who have been discharged to ensure continuity in care and discussions with patients and families Review of any new patients identified as requiring input (four to five new patients each month) Review of those identified the previous month. LEARNING FORM THE PROJECT GROUPS 13

14 A number of clinical areas within Greater Manchester are now holding cause for concern meetings and others are working towards a similar format. The team from King s Health Partners, when considering the criteria that would enable them to identify those approaching the end of life, looked at the evidence on the usefulness of variables as a predictor of survival and then whether those variables were readily captured in the clinical context. This led them to identify the variables in Table 1 as the most suitable predictors of those approaching end of life. These variables were used to create a screening tool to identify patients for registration. Following consultation with patients and carers, patient reported measures of symptoms and quality of life were also included. Systematic and routine completion of symptom and quality of life scores by patients takes some time to introduce but advantages identified include: It signals the importance of symptoms and quality of life to both patients and professionals, giving patients permission to raise these concerns It ensures a patient centred approach to identification for the register. Using these measures also provides a starting point for holistic palliative needs assessment. POS s renal 10 was selected as the measure of symptoms and EQ5D 12 for quality of life. The above were combined to create a screening tool (Appendix 2) used at multi disciplinary 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 POS s score 30, EQ5D overall score < 60 and the SQ answered no to determine whether patients should be approached regarding registration. These criteria may be refined following evaluation which will be published separately. 14

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

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

17 These documents have been introduced in a number of areas leading to approximately half of patients participating in completing them. The feedback from patients has been very positive, for example: I can say what I want to say it s my opportunity I am just so glad someone has asked me about what I think regarding my care for the future It helps to write it down The King s Health Partners project team used the Holistic Common Assessment (new 15) to support renal professionals in assessing the needs of patients approaching end of life. This includes ACP, exploring their priorities and preferences for the future and optimising planning to accommodate these priorities. The team developed and used an insert for the Kidney Care plan to help open up conversations about priorities and preferences. They have also designed a Guide to Gold, a guidance document for all healthcare workers approaching ACP discussions with renal patients, which covers preparing for the discussion, carrying out ACP, and follow up and documentation. An evaluation of these interventions is being carried out through patient experience surveys and in depth 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 in patient wards, the confidence to raise these matters with patients. The use of ACP also prompts those involved to develop closer working relationships with other healthcare organisations caring for kidney patients at end of life such as rapid discharge teams, Macmillan services and local hospices. One group also found some uncertainty amongst patients regarding some of the terminology associated with renal supportive care including preferred priorities for care and the meaning of key worker. LEARNING FORM THE PROJECT GROUPS 17

18 iv Co ordination of care The framework emphasises the importance of co ordinating 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 co ordination 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 Renal key work ensures that patient has a community key worker and keeps them notified of changes to the patient s condition Letters to GPs include request to add patient to GP register Guidelines including advice on pain and symptom management for kidney patients sent to GPS Use of PPR has enhanced dialysis nurses knowledge of patients needs Greater Manchester Referrals to other services e.g. dietician, renal psychology, local hospice/palliative care team Communications with primary care Completion of report for DS1500 and social services input Meetings and involvement of families and carers 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 18 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 co ordinate all care communications between secondary and primary care teams and between the Multi Disciplinary 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 on going basis if the patient s condition changes.

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 GPs 16. In Greater Manchester the co ordination 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. Thirty seven patients have accessed hospice care at their end of life. This programme is continuing. The project facilitators have also attended primary care Gold Standards Framework meetings to broaden their understanding of primary care services and helped to make appropriate referrals. In response to requests from GPs for advice concerning symptom management and palliative interventions for kidney patients, the team in London have invited primary care partners to attend their study days and other teaching events. A Meet the Renal Team / Meet the Palliative Team combined training day was evaluated as very successful. Renal professionals and specialist palliative care providers attended together for a day of joint learning and to meet the corresponding primary care, renal or palliative professionals in their locality. This has been followed up with exchange visits between renal and palliative teams. Recognising the wide range of providers and resources that may be required to support patients, the King s Health Partners team have developed a centralised access point for information available to renal professionals. A resource toolkit has been created that is held on the local intranet, with a front end Renal palliative care: how do I? which links to all the different resources available (see Appendix 8 for details). Building and maintaining links with primary care and other community based providers is vital in ensuring kidney patients are supported appropriately at end of life. All the project groups have found that the steps they have taken to engage with providers have led to improved communications, understanding and knowledge among the kidney unit staff. LEARNING FORM THE PROJECT GROUPS 19

20 v. Support for families and carers through the end of life period and beyond Depending on patient preference, families and carers may be involved at any or all stages of supporting patients approaching end of life. When leaflets to help patients consider their preferences for end of life care are provided to patients they are encouraged to discuss their wishes with families and carers. Many of the units encourage family and carers to be involved in the discussions. However a no visiting policy in some dialysis areas can be a barrier to family and carer involvement. Patients who are admitted close to the end of life in Bristol are cared for using the Renal Integrated Care Pathway (ICP). This is a trust document adapted for renal care, derived from the Liverpool Care Pathway 17, 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 ward based 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 post registration experience were not very comfortable with the discussions or practices around death or afterwards. Subsequently, the project team carried out short training sessions in the ward and the pastoral staff conducted two training sessions on spiritual and cultural considerations at the end of life. Other changes in bereavement practice were initiated following the survey: The consultant writes a personal letter to the family when they have been involved in the care, offering condolences and the opportunity to talk about the treatment and care of their relative The carers of all dialysis patients receive a card from their dialysis unit from staff who knew the patient well, including the opportunity to speak to staff Staff from the dialysis unit endeavour to attend the funeral The approach to informing other patients varies across the dialysis units but there is a common emphasis on encouraging support and discussion with those close to the patient. The use of the Renal ICP on inpatient wards has included informing GPs of a death and supporting families and carers after death. 20

21 Consideration is being given in Bristol to setting up an annual memorial service for the families of all dialysis patients that have died during the preceding year. A remembrance service for the bereaved families of kidney patients has been taking place annually, arranged by Central Manchester University Hospitals Foundation Trust kidney unit, and at both units in the King s Health Partners group. This is a non denominational 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 co ordinating 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 follow through 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 GPs 16. 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 awareness raising 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 up to date with the progress of the project and training strategy.