Supporting People to Live and Die Well Test Site Final Report St Christopher s Hospice

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1 Supporting People to Live and Die Well Test Site Final Report St Christopher s Hospice Project title: End-of-life intervention skills consultation and education Project lead: Andrea Dechamps Project partners: Lambeth and Southwark Local Authority Adult Social Care Services; Guy s and St Thomas Modernisation Initiative (MI) Start/end dates: October th April 2011 Date of report: 14 th May 2011 Report authors: Lesley Adshead & Jan Lenton Background Good palliative and end of life care requires a well trained workforce who are competent and confident and who understand how to coordinate care across settings and services so that everyone can access appropriate, good and cost effective support. Providing high quality training opportunities for the generalists in the health and social care workforces is a key commitment for St Christopher s Hospice and this pilot project has enabled us to take this commitment forward. The hospice has a large social work, welfare and bereavement department which has been able to provide a strong expert base for the project. The Hospice also has extensive experience of professional education for all disciplines engaged in palliative care, including social work and social care staff. It runs courses at all levels, including courses on Communication and Advance Care Planning, and Dignity in End of Life Care. Lambeth and Southwark are two of the London Borough catchment areas covered by the Hospice. The project proposal set out our general aims as: To work towards meeting the learning and support needs of older* adults social care staff in the London Boroughs of Lambeth and Southwark in terms of their delivery of high quality end of life care, as identified by them (National End of Life Programme Social Care Framework (SCF) objective 7) To support this staff group in working towards a cultural shift in attitude and behaviour related to end of life care 1

2 To pay particular attention to the promotion of earlier end of life planning and a holistic understanding of wellbeing (SCF objective 6), building on advance care planning techniques To promote understanding and best practice in terms of holistic assessments at the end of life (SCF objective 5). The delivery of the above would go some considerable way toward the creation of a supportive work environment enabling social care workers to maximise their contribution to quality end of life care (SCF objective 8). * Although our original focus was on older people in fact we have also worked with professionals from learning disability, mental health and physical disability teams. Our Objectives To pilot the development of cooperation with local adult social care departments and other local partners in offering training and development on end of life care issues relevant to their work and as identified by them. To deliver a flexible training and support programme in end of life care for adult social care staff in the London Boroughs of Lambeth and Southwark, with a particular focus on early end of life planning, a holistic understanding of wellbeing and holistic assessments, building on and extending existing skills as well as introducing new skills, knowledge and confidence. To evaluate participants responses to the training and consultation programme and Towards the end of the pilot project, to work with participants to identify an action plan for taking learning and collaborative links further. Description of project The project team has been led by Andrea Dechamps, Director of Social Work, Bereavement and Welfare at the hospice. The day to day running of the project has been by Lesley Adshead, Lecturer in Palliative Care (a Palliative Care Social Worker by background) (1 day per week) and Jan Lenton, Principal Social Worker, (3 days per week). Other social work and nurse colleagues from St Christopher s have supported the work through their input to specific parts of the training. 2

3 Collaboration with the Modernisation Initiative The St Christopher s project has worked collaboratively with the Guy s and St Thomas Modernisation Initiative (MI) (also a test site) who had previously undertaken work on End of Life with the London Boroughs of Lambeth and Southwark. Drawing on that earlier work, they were able to identify senior managers within the two boroughs who were committed to improving end of life care. They had also begun work with leads (or champions) to develop end of life care within specific teams. The MI (as part of their test site pilot project reported elsewhere) carried out a training needs analysis with these leads and shared this information with us as it became available. This input was invaluable in getting our project off the ground. Initial fact finding Our initial goal was to broaden our understanding of the current level of knowledge and skills about end of life in the various teams and to get an overview from the two boroughs of the sort of support/training they would find most useful and easy to incorporate into their working practices and schedules. We attended an early meeting with the two senior managers and the MI. One of the senior managers visited the hospice and met our Chief Executive. We also made a preliminary fact finding visit to a hospital discharge team in one of the boroughs. From these various meetings the following pictures emerged: Social care professionals in the two boroughs did not automatically see themselves as playing an important role in end of life care and were confused about where the responsibility for meeting needs at end of life lies. End of life issues were not therefore being anticipated and planned for and there was evidence of crisis management. There were indications that knowledge of the tools of end of life care (i.e. Liverpool Care Pathway, Gold Standards Framework, and Advance Care Planning) was generally very low and there was a marked lack of confidence in individual skills. This picture was supported and augmented by findings of the training needs interviews that were carried out by the MI and mirrors findings highlighted in the Social Care Framework Report: Supporting People to live and Die Well. Teams were busy with heavy workloads, juggling multiple demands, whilst facing many uncertainties within a resource constrained context. It was clear that we would need to be constantly aware of time constraints as we took the project forward. 3

4 On a very positive note we found that social workers and other social care professionals were interested in knowing more about specialist palliative care and eager to extend their knowledge and develop skills in relation to end of life issues. Project work delivered for managers, leads and teams The project has focussed on providing training, consultation and support for three main groups: managers (senior and service managers) the leads/champions in end of life care (from 18 teams across the two boroughs + sheltered housing and Care Line services) other members of these social care teams. Our main focus has been on building the knowledge, skills and confidence of the leads. However we realised that to enhance the chances of this objective being met we first needed to work with their managers to make sure that they were fully aware of the project and would be supportive of their staff. The senior managers asked us to provide training to their service managers acknowledging that this would be pivotal to the success of the broader training input. Our work with the Managers End of Life Care is most effective when workers are operating in a supportive environment, which facilitates team discussion and mutual support and also provides a range of staff development opportunities Supporting people to live and die well: a framework for social care at the end of life 2010 (Para 5.3 p28) The Manager s Away Day had five objectives: 1. To provide an overview of the strategic context (The End of Life Care Strategy and the Social Care Framework) 2. To introduce the key tools of the EOLC Strategy (LCP, GSF, ACP) (nurse led session) 3. To provide the opportunity for managers to think about issues of loss at end of life (we used an experiential narrative exercise) 4. For managers to work as a group (both boroughs working together) to identify the elements of an exemplary social care service for people approaching end of life 5. Working with borough colleagues to establish some clear objectives for moving towards an exemplary service. (For objectives 4 and 5 we suggested they think in terms of the 7S s: shared values, strategy, structure, systems, style, staff, and skills as a guide for discussion) 4

5 The day also included a tour of the hospice and introductions to /discussions with other senior managers within the hospice. Arising from 5(above) further training needs were identified which would form part of our work in the project (other objectives concerning strategies/structures identified would be taken forward independently or in conjunction with the MI). One training objective put forward by the managers was that all the leads make a presentation to their team on an end of life topic. We agreed to support the leads to develop knowledge, skills and confidence to do this. A further objective was that all members of the adult social care teams would be offered introductory training on end of life issues (managers specifically requested: the tools of EOLC; loss at end of life and some communication skills practice). It was agreed that we would offer a series of half day sessions, open to all members of the 18 teams and the sheltered housing and care line services. A second review meeting (half day) was held for managers towards the end of the project to review our joint progress towards meeting our respective objectives. At that meeting we also did an experiential exercise that we had run with their teams on ACP so that they could sample some of the training provision for themselves. The final session of the meeting was to consider where we go from here, possibilities for future links, and identification of new training needs. Our work with the Leads where end of life care leads are in place, they can play a key role in supporting colleagues across social and health care by acting as champions for EOL care cascading knowledge and resources to colleagues and liaising with policy makers service managers and other relevant people. Supporting people to live and die well: a framework for social care at the end of life 2010 (Para 5.3.p28) Our training programme took into account the learning needs identified by the leads in collaboration with the MI initiative (Summary: Appendix 1) together with the training elements identified by managers. We also responded to ideas for further training arising from the evaluations as they became available after each session. There were three training sessions (2½days) and these included the following topics. Loss Tools of End of Life Care (covered briefly by us as these were also included in MI training session run jointly for Social Care and District Nurse leads) What is Palliative care? The role of the palliative care social worker Talking about our own deaths The dying process Spirituality at end of life Communication Skills Presentation Skills 5

6 Presentation Practice (all leads gave short presentation on end of life issue in preparation for presenting to their teams). This session also acted as a resource for sharing knowledge regarding end of life. We had a session that gave the EOL leads a chance to confront their own personal fears about dying. We considered why don t we talk about dying?, the advantages and disadvantages of talking about our own deaths, and we gave the EOL leads an opportunity to complete their own Advance Care Plan. Other resources available to the leads A tour of the hospice Access to free places on training courses run as part of St Christopher s externally advertised programme of multi professional training. Courses offered were Challenging Conversations (2 day course for qualified professional from all disciplines); Advance Care Planning (1 day); Visible and Invisible dying (1 day) and Dementia and End of Life Care (1day) Use of the St Christopher s library (with the back up of a specialist librarian) A helpline was available at a set time each week for telephone support on end of life issues. Our work with the Teams Social care has a vital role to play in supporting people to live and die well, in the place of their choosing. The social care workforce from domiciliary care workers to social workers and their managers may need training and support to recognise the skills they have to facilitate this Key messages from Supporting people to live and die well: a framework for social care at the end of life 2010 (p6) Team Visits All the teams were offered a visit to discuss the project, and to give a brief overview of the End of Life Strategy and introduce the Framework for Social Care at End of Life. These visits were also a time for us to clarify the role of specialist palliative care services and for the social care staff to share experiences and reservations about end of life issues, and raise general questions. Team training These were half day sessions repeated a total of six times. The sessions mixed workers from both boroughs. Topics were: Loss (Experience of loss, Coping with loss, Multiple loss, Resilience and Risk, Supporting people with loss, Barriers to talking, Loss and Hope) Tools of End of Life: GSF, LCP and ACP (Session also included recognising dying and Do not Attempt Resuscitation decisions) Communication Skills Practice: Scenario based role play practice on advance care planning. 6

7 Other work undertaken We took part in Lambeth Carer s forum where we led a workshop to offer information about end of life issues and advance care planning. We spoke at the Sheltered Housing forum in Lambeth where we introduced the idea of Advance Care Planning ACP to residents and professionals in attendance. Evaluation All of the training offered was evaluated by us through a written evaluation form administered and reviewed at the end of each session. Later training was modified to take account of comments made in earlier evaluations. In addition Southwark Council automatically requested evaluation of the training through their electronic training management system. Outcomes Objective 1: To pilot the development of cooperation with local adult social care departments and other local partners in offering training and development on endof life care issues relevant to their work and as identified by them. We have worked closely with Senior Managers and Service Managers from Lambeth and Southwark to identify training needs for staff within the adult social care departments. A total of 13 managers attended across the two training days held at the hospice. Specific objectives were set by the managers at the first of their two meeting (some to be implemented within the life of the project with input from us, others longer term). Their objectives included: All the Older people teams staff to receive basic training on End of Life The agreement of a strategic shared vision across Health and Social Care Develop a pilot to implement End of Life Care across Health and Social Care Ensure we have a business plan that incorporates End of Life Care Awareness raising for Sheltered Accommodation/ Careline Officers re EOLC At the second meeting these objectives were reviewed and most objectives were either already met or were in progress: The majority of staff have now undertaken basic awareness training. The lead will continue to work with the team in this area and will support/train accordingly. In Team work plan End of Life Care to be standard item on team/management meetings In addition several new objectives had been identified and were being progressed by managers independently of our involvement, some in consultation with the MI. Examples: Audit of assessments for end of life 7

8 planning ; Encouraging middle managers to engage/ become more aware of developing staff in end of life care and coming up with objectives re appraisals etc. Objective 2: To deliver a flexible training and support programme in end of life care for adult social care staff in the London Boroughs of Lambeth and Southwark, with a particular focus on early end of life planning, a holistic understanding of wellbeing and holistic assessments, building on and extending existing skills as well as introducing new skills, knowledge and confidence. Leads attended training sessions specifically designed to build their knowledge and skills. The leads prepared and delivered a presentation to the group (see summary attached) and are getting ready to present to their teams. Seven leads have now attended our 2 day Challenging Conversations course, plus other courses from the St Christopher s programme (10 attendances in total, without cost). Six other leads have registered for places on Challenging Conversations courses in near future The library was utilised by several of the leads and support sought from the librarian who assisted with searches and individual guidance on literature. Telephone helpline was not utilised but some support on end of life issues was requested and responded to by . Half day training delivered to 134 members of the adult social care staff. Links have been established with Sheltered Housing Services in one of the boroughs and information on ACP shared with residents and professionals. Approximately twenty people attended. Links made with Lambeth Carer s Forum and information on ACP shared. Objective 3: To evaluate participants responses to the training and consultation programme All the sessions have been consistently well evaluated. Evaluations indicate high levels of satisfaction with the training. Wherever possible we have required people to identify specific ways in which they can apply the training in practice and have sought to gather information on actual practice developments. We have developed teaching in line with the evaluations as we have received them. (Summary of evaluations: Appendix 2) Objective 4: Towards the end of the pilot project, to work with participants to identify an action plan for taking learning and collaborative links further. St Christopher s has successfully completed an application to become an authorised trainer for Southwark Council paving the way for future 8

9 This project (together with the MI) has encouraged cross borough working. This has been successful and the possibility of a shared forum (including health) on end of life issues has been mooted. Arising from the introductions made on the managers training day productive discussions have taken place between our Director of Supportive Care and Social Service Managers regarding models of service delivery and there is every possibility that this will lead to collaborations in the future. Links have been established with the sheltered housing services in one of the boroughs and it is hoped to build on these links and deliver additional awareness of end of life care and ACP to residents through our public education programme. Work shadowing has been suggested and arrangements are in place for the first social worker from Southwark to shadow a St Christopher s social worker. It is hoped that this shadowing can take place in both directions to our mutual benefit. St Christopher s will offer to take an initial role in convening future network meetings of the leads though it is anticipated that this network will be selfsustaining in the longer term. Further training could be offered to the leads at these meetings. Success of the initiative We are particularly pleased with four aspects of the pilot: an unexpectedly high level of involvement from senior managers and service managers consistent feedback from managers and leads that day to day practice is already changing a real desire and commitment from social care professionals, who valued the opportunity to re connect with some core social work skills, to take this work forward encouraging signs that the two boroughs are taking steps to ensure that the work of this project will be sustained. Strategies and systems are being developed to support future effective end of life care. Input from managers in the two boroughs was integral to the success of the project. Most were in attendance at the team talks, engaging with discussions and confirming their support to their teams. It was clear that managers had enabled staff to engage with the training provision and take on the lead role. I do not envisage there being any obstacles [to developing end of life lead role] as my manager is 100% behind this initiative and keen for it to be shared across teams, with individuals, and service users (Quote from Lead) 9

10 At all levels it was possible to determine that changes had already taken place in the workplace. The following quotes taken from evaluation forms illustrate the breadth of changes taking place. Some changes were in awareness and attitudes; some reflect knowledge and skills development and others improved levels of confidence. Quotes from manager s evaluation forms (In response to a question put to managers have you noticed any changes in relation to end of life issues amongst your staff? ) Heightened awareness amongst staff. Keen to engage and discuss within team meetings (Senior manager) Open discussion team reflection referenced in assessments higher profile lead acknowledged training attended cultural perspectives [considered] (Service manager) Yes within the Day Service staff are talking about end of life. (Day Services manager) The senior manager of one of the boroughs has confirmed that, We are remodelling our initial screening/assessment tool and I have asked for end of life care to be considered End of life work will be part of our business plan for 2011/12 Quotes from EOL leads evaluations on the training provided by St Christopher s: Role Play exercise was useful to see how end of life discussions can be approached Very emotional, it touches where other training never does. Useful and very resourceful. Training. opened up mind to a different perspective and way of thinking about people affected at EOL The training will help enrich my work and in doing so help provide a better service to service users and carers Gaining an understanding of End of life issues and greater knowledge of palliative care. I qualified two years ago and my degree course did not touch on these subjects Quotes from leads on how their day to day practice is changing as a result of pilot Attitudinal change: I now look at my clients at the end of life differently as I have a good understanding of their needs. 10

11 Better identification of issues: much more likely to identify where a person may have end of life needs and attempt discussions around this. Improved communication across teams: Better links with palliative care social workers in hospital Advising residential care staff of best way to address the subject of death and Advance care planning Improved knowledge and cascading of knowledge I have collected EOLC info and am creating a resource area I am giving small talks in team meetings Better communication with service users: Actively thinking about EOL and looking out for triggers of EOL issues when required initiating EOL matters without hesitation Improved confidence: I feel more confident and empowered to better support service users and the families/carers Enhancing services for specific client groups: I can start to introduce the advance care plan and, working with speech and language therapist, modify [it] for clients with learning disabilities, until a national document is launched Development of knowledge / shared reflection within teams: Those that attended the half day training came back to reflect with me on the morning or afternoon. The visits to my team as well as the half days training for team was truly appreciated Another aspect of the project which pleased us was our own development both in extending our knowledge of statutory services and in reinforcing our own knowledge of end of life care. We also felt great satisfaction in the relationships which have been built between the hospice and the local authorities and in the mutual respect which we have developed for each others work. Problems and inhibitory factors End of life issues need to be introduced with sensitivity We experienced few problems or inhibitory factors in meeting our objectives. However we had needed to be mindful of certain factors. End of Life has not been an issue that has been addressed at all within these teams. Training (to any level of staff) had to start at a basic level. We felt it important to introduce the subject of death and dying to the EOL leads and their colleagues gently. Some of the leads and many of the members of their teams expressed discomfort in talking about death. Some were grappling with their own recent bereavement or with the illness of family members. 11

12 Lack of confidence in skills Many felt they did not have the necessary skills to have such conversations, feared that they could be opening a can of worms and at the start of the project some of the leads admitted they were resistant to start discussions with clients at end of life. They simply did not have the confidence to engage with the issues and underestimated their transferable skills. Much of our work throughout the project was reassuring staff (at all levels) that counselling qualifications are not necessary for such conversations. The willingness to open discussions with clients, together with the ability to listen, despite the possible discomfort of such conversations, are the essential skills needed. We have been surprised by the social workers lack of confidence in engaging in end of life conversations. There is a real sense of them having become de skilled in what we would see as core social work skills but we have felt there is a growing enthusiasm amongst the leads and their colleagues for re engaging with these basic skills and developing more holistic ways of working. Summary of other constraints People find current assessment procedures impede relationship building Value base is obvious but social workers seem to feel compromised in practice by inflexible and time pressured assessment procedures (especially dominance of form filling) Concerns about where this work can be recorded and accounted for Strategies and systems not yet in place to enable and encourage joint working across disciplinary boundaries Fears that support will not be available for practitioners struggling with the emotional aspects of End of Life care There remains a level of anxiety about fitting this work (both end of life conversations and the more specific lead role) into their current workload, and also about how it can be accounted for to management, within the current culture which is closely focussed on specific targets such as number of assessments carried out. The lack of time was reported as a problem many times, and we would not dispute the reality of this, but we felt that for some people this concern was a hiding place, which allowed them to avoid confronting their own apprehensions and fears about engaging in conversations about death. We needed to be quite persistent in challenging people s claims not to have time to take this work on, whilst at the same time demonstrating that we understood the genuine constraints that they faced. In similar vein there were frequent comments that systems, especially assessment/review processes, were unwieldy and did not realistically allow adequate scope for engaging in end of life conversations; the need to fill the forms took priority. Whilst there is some reality to this claim, we felt that, again, the forms became a hiding place for some people. It did seem that sometimes assessment forms were being used in a mechanistic way that narrowed conversations down unnecessarily. 12

13 We felt there is a need for a review of the forms themselves to see how they can be enhanced, to trigger useful end of life conversations, (and this work is going on within the boroughs) but we also identified a training need on assessment practices. There remains some anxiety amongst staff about whether managers will continue to support them in extending their role and apprehension about whether they will receive the supervisory support they might need if they open themselves more fully to end of life issues. Managers themselves see this as a possible area where they will have difficulty and have identified supervision in relation to end of life issues as a future training need. There were clear difficulties in cross disciplinary working because of unclear or complex systems; for example, willingness was expressed for working with GPs using gold standards framework but a lack of clarity about identifying which GPs were full GSF practices. When systems are not completely transparent, and time is precious, often the default position is not to pursue partnership working. Transferability and sustainability This pilot project has been enabled, through the funding provision, to take this training on in an intensive manner in time limited period. It would we feel be possible for much of the training to be replicated in other areas, with delivery by experienced, specialist palliative care social workers, with contributions from fellow hospice/palliative care team staff. The training we delivered was generally at a foundational level and would be well within the capacity of most experienced specialist palliative care social workers. Even in the absence of a training programme we believe certain steps could be taken very easily which would lead to positive outcomes: Making contact with senior managers in adult services and inviting them to visit the hospice/ palliative care setting Offering tours of the hospice to familiarise social care professionals with the environment and culture Offering short visits of specialist palliative care social workers to individual social care teams to talk about the End of Life Strategy/Social Care Framework and to provide information on the role of specialist palliative care services Offers of mutual work shadowing. Key messages Vital to interest and involve senior managers in end of life issues so that the initiative can be developed at all levels within teams Facilitate hospice visits as these help promote cultural change and encourage positive feedback to service users 13

14 Visits to teams are important for dissemination of information but also as a signifier that end of life issues are everybody s responsibility Leads/Champions are key to promoting this work and giving the work an impetus within their teams, but the role needs ongoing support and training Important to recognise that line managers may need training they may feel inadequate to support and supervise staff in relation to this specific work Issues of loss need to be incorporated into any training programme on end of life care but have complete relevance to all branches and aspects of social work Partnership working (health and social care particularly) will be essential if the successes of the project are to be maintained Providing opportunities for communication skills practice is essential. If professionals can successfully develop confidence in this area we believe they can transfer this confidence and skill set to other areas of social work Support development of broader skills e.g. presentation skills. 14