National Advisory Group 22-04-09 (PAPER 3) Living and Dying Well A national action plan for palliative and end of life care in Scotland Short Life Working Groups – Summary of progress OVERVIEW (1) Standards Group (Linked to Action 3) GREEN (2) Guidelines and referral criteria GREEN (3) Assessment tools and advanced care plans GREEN (4) Information for patients and carers AMBER (5) Acute settings AMBER (6) Adolescents and Young People AMBER (7) Public health / health promotion GREEN National Advisory Group 22-04-09 (PAPER 3) Working Group 1. Standards: Chair: Dr Elizabeth Ireland Remit: To inform the work of NHS QIS development of standards for palliative and end of life care. (Linked to Action 3) Progress: Scoping of existing data currently being undertaken. Identified within NHS QIS work plan for 2011 Timescales: Group to met following outputs from other working groups National Advisory Group 22-04-09 (PAPER 3) Working Group 2: Guidelines and referral criteria to specialist palliative care Chair: Dr David Oxenham Remit: 1a) To develop standards/criteria for palliative care guidelines 1b) To develop a core list of topics that all NHS Boards should have guidelines for. 2) To develop core criteria for referral to specialist palliative care base don need not diagnosis 3) To review NHS Quality Improvement Scotland Out Of Hours Key Performance Indicators Progress: 1) Guidelines for Palliative and End of Life Care The group has surveyed all NHS Boards to obtain a picture of current guidelines and is collating the responses. The group plans to draw up a list of draft standards or criteria for guidelines and identify a list of core topics for guidelines that should be available in all NHS Board areas. 2) Development of Referral Criteria to Specialist Palliative Care The survey of Boards revealed a wide range of different referral criteria but with some broad common themes. The group has begun to develop some common core criteria for referral but has already identified that it will be difficult to use these to develop criteria which can be measured and audited. We plan to use the existing SPPC communication routes to consult on these draft referral criteria and bring back recommendations to the National Advisory Group later this year 3) NHS QIS Key Performance Indicators for Out of Hours Palliative Care This existing work has been incorporated into the remit of the short life working group. We have reviewed and broadly agreed the KPI’s which have been developed within the Out of Hours services and are seeking clarification on how to proceed with putting these into place. Timescales: The next meeting of the group is on 26.08.09 National Advisory Group 22-04-09 (PAPER 3) Working Group 3: Assessment Tools and Advanced Care Plans Chair: Professor John Welsh Remit: To develop recommendations for NHS Scotland on the following areas : (i) Assessment tools to guide one year (approx) prognosis (ii) Assessment tools for symptoms (iii) Assessment near end of life (iv) Advanced Care Plans (v) Do not attempt resuscitation (DNAR) Progress: Sub groups have been set up to take forward the areas identified above. (i) Assessment tools to guide one year (approx) prognosis The sub group have agreed following review of the literature that it is virtually impossible to predict with a great deal of sensitivity those patients that are roughly 12 months from dying across the three main well defined 'disease trajectories'. In addition to review of the literature we have undertaken a snapshot questionnaire of GPs/Consultants and Specialist nurses on their opinion on the PIG from the Gold standards framework document 2006. We are of the opinion that we should not look at further prognostic tools but rather look at utilising the PIG document to highlight patients at risk of dying within the next 12 months and then look at a 'needs assessment' for these patients and this would incorporate guidance on 'rate of change' etc. We feel it is about helping with symptom management but also beginning the planning process leading ultimately to Advance Care Planning. It was felt that first decisions regarding placement on palliative care register at General Practice level would be made following discussions about any patient whose condition is deteriorating in the community, as highlighted by District nurse. If that patient would be likely to benefit from the palliative care approach then they should be put directly onto register. If more discussion is required then the PIG document should be employed The group will go away and look at how we would look to achieve this over the coming weeks and would hope to achieve this by the time of our next meeting. We have agreed that this can be done via email correspondence and phone calls where necessary. We will continue to seek the views of colleagues within specific 'disease' areas where required. (ii) Assessment tools for symptoms The group’s remit is to make a recommendation regarding a symptom assessment tool that can be used in palliative care, across settings. The group undertook an initial literature review and 40 abstracts were identified. This was subdivided between group members along with some other key articles and relevant local tools in use forwarded by members Next steps: Group members are in the process of reviewing the literature and plan to meet by videoconference on the 14th of April to discuss and summarise this. Any obstacles (how to overcome/ support required?): Main obstacle has been to find an appropriate time for all group members to meet, given people are working in National Advisory Group 22-04-09 (PAPER 3) different places, difficulty matching diaries and holidays. The group has so far not been able to meet together and has mainly communicated via email and telephone. Timescales: We hope to bring a summary of literature to the main meeting on 14/05/09 and make a recommendation by June. (iii) Assessment near end of life A literature search has been completed and ongoing analysis of the relevant references is under way. The members of the group have had a video conference to clarify exactly their remit and the way forward. The group felt that the remit was to recommend signs to aid recognition of increasing need of individuals with progressive incurable conditions and their families at two stages in their illness. The first at about 4-6 months from expected death and the second when the dying process has commenced. The group wish it to be known that meeting palliative care needs take priority over recognition of time remaining to live. The literature shows that the longer the time to death the more inaccurate the prognostication is with doctors tending to be over optimistic (Gare et al BMJ). Much of the literature, but not all, relates specifically to cancer. Within days of death prediction of length of life remaining is accurate in approximately 65% of cases. Holistic assessment was required as progressive disease affects the person globally: Activities of daily living Patho physiology parameters Severity of symptoms The Palliative Performance Scale appears to be sensitive in predicting death within 3 weeks with an 80% sensitivity and 85% specificity. The FACIT –Pall Scale appears to be capable of differentiation between those likely to survive one year and those likely to die within the next 3 months approximately. The GSF predictor prognostic index needs study as this is used by some GP’s at present. The importance of experienced clinical judgement – both medical and nursing - should also be acknowledged with clear agreement that any tool is used as an aid to that judgement. Next steps: A further video-conferencing meeting is arranged for the 17th April to discuss findings. Further literature searching and analysis of references is needed. Identification of likely candidate tools for adoption. Obstacles (how to overcome/ support required?) :No major obstacles identified- important to be aware of other subgroups work programme to ensure no replication of effort. The complexity and variations within the many non-malignant disease processes and the lack of research in palliative care for people with non-malignant National Advisory Group 22-04-09 (PAPER 3) conditions mean that it may be necessary to prioritise which disease(s) should be the primary focus of ongoing work / research Timescales:- Comprehensive ascertainment of literature – End of May 2009 Identification of tools and recommendations agreed by sub-group – end of June Write up section on Assessment and submit to members of WP3 - end of July / early August. Submit agreed document to National advisory group by end of September. (iv) Advanced Care Plans Advanced Care Planning is not widely understood among health care professionals. Literature indicates that there is widespread confusion over the term “advance care planning,” and what it refers to and how it relates to end of life care in general. This is caused through a mixture of unfamiliarity with the term and the presence of similar acronyms (“Anticipatory Care Planning”) that refer to related but different activities, and various related but different terms (End of Life, Terminal Care, LCP, Palliative Care). There is some scepticism among primary health care professionals that ACP can be properly implemented without becoming a “tick box” exercise. The impact of the DES appears to be that many practices are looking for “templates” without necessarily understanding what these templates are meant to do. Consequently we recommend that there is a pressing need for an educational programme for health service staff. One preliminary requirement is for an agreed upon set of working definitions. Advanced Care Planning is not widely understood among the general public Literature indicates that ACP is not part of public consciousness. A recent poll indicated that 16% of the general public believed they had received an ACP when asked – almost certainly incorrect. (1) According to the literature, one of the biggest barriers to clinicians broaching end of life discussions is “fear of destroying hope” yet what evidence exists tends to indicate that patients, on the whole, value such discussions. Although ACP is not necessarily the same as “end of life planning” – it is possible that greater public understanding of ACP will help remove clinician worries about initiating it. Therefore public education and engagement in the process is needed. The benefits of ACP are not yet proven As of now, the research evidence for ACP is not yet proven. Indications are that patients and carers would welcome it but given lack of understanding among health- care professionals and the general public about ACP, these findings should be regarded as preliminary. ACP is not a one-size fits all process Much of the literature on ACP tends to be focused on either a health-care setting or a particular condition. For example, the recent Concise Guidelines focuses on issues around a frailty/dementia decline trajectory. ACP in renal disease requires active decisions about when to halt dialysis That said, there are clearly commonalities. The commonalities and differences in ACP between different health care settings and conditions need to be taken into consideration when designing ACP documents. ACP should have two arms: clinical and patient-centred National Advisory Group 22-04-09 (PAPER 3) Research and literature review indicates that clinicians would welcome a “checklist” like tool to help them keep track of conversations with patients and patient’s needs. Ideally this would be implemented electronically and be shared among services. Many are aware of the electronic Palliative Care Summary that is under development. What evidence is available also indicates that a patient-held tool could be useful and complimentary to clinical tools. Such a tool would focus on “patient preferences for care.” Thus clinical ACP tools could be developed alongside patient- held tools. We recommend therefore that two activities of work need to be undertaken. The creation of an ACP Summary tool for the use of clinicians and ACP “thinking ahead plan” for patients. Two currently existing documents were suggested as starting points. The SBAR based ACP summary presently being used in Fife that includes core elements of ACP such as consent for sharing this information, DNAR, management plan/ SBAR tool. The “Thinking Ahead Plan” being trialled in four Lothian practices by the University of Edinburgh. (v) Do not attempt resuscitation (DNAR) Information was obtained from the fourteen Scottish Health Boards in their recently submitted Delivery Plans relating to Living and Dying Well. Eight Health Boards have a DNAR policy in place, of these, three are Lothian or adapted from Lothian. Future plans of the remaining five are as follows: Three are reviewing policy, using Lothian. Two are reviewing policy, using unstated policies, but they refer to linking with the Scottish Ambulance Service. Six Health Boards do not have a policy in place: Three mention introducing Lothian. Two refer to linking with the Scottish Ambulance Service One Health Board intends to create its own policy but does not specify what this will be based on. The first 2009 report of the Public Audit Committee sets out its findings in relation to the report by the Auditor General for Scotland, entitled, “Review of Palliative Care Services in Scotland”. With regard to policy on DNAR, the committee has stated the following: The Committee believes that a single DNAR policy, consistently applied across all care settings, is essential if patients’ wishes are to be respected and implemented. The Committee therefore welcomes the action points on DNAR within the Scottish Government’s action plan. However, the Committee recommends that the Scottish Government ensure that the DNAR policy, which is developed and adopted by boards is a National Advisory Group 22-04-09 (PAPER 3) consistent, national policy. The Sub Group had a useful telephone conversation with Dr Juliet Spiller. Dr Spiller is on the Palliative Care E-Health Advisory Group, together with Dr Peter Kiehlmann, who is taking a lead on DNAR within this committee. Dr Spiller feels that Health Boards should be allowed to develop their own policies, hopefully using Lothian as a guide, rather than have a policy imposed upon them. However, the E-Health Advisory Group are talking about bringing in a DNAR national policy in within one year. At the time of writing Peter Kiehlmann has been contacted by email with the request that he speaks to our group to confirm that DNAR is being taken forward by another route. Juliet thinks that the Boards who mentioned SAS in their delivery plan are likely to adopt Lothian as the Scottish Ambulance Service and Scottish Partnership for Palliative Care End of Life Care Plan, which was approved in August 2008 includes Lothian DNAR form as appendix 1. Dr Spiller drew our attention to the recently published DNACPR model form and guidance notes, from the Resuscitation Council. This model form may be adapted for local use (within England and Wales). Dr Spiller would welcome feedback on the content of the form and notes. Addendum; Teleconference 8th April; Participants; Maria McGill/Chris Sugden/Juliet Spiller/Peter Kiehlmann/Tom Kane Points of note from the discussion; PK, newly appointed National Palliative Care E-Health Lead emphasised that as he has been in post for one week he is very much in “Listening mode” and linking in with a number of individuals nationally including JS. He mentioned that he is looking to pilot in Grampian, evaluate and then look to role out beyond Grampian in the autumn. The Local Delivery Plans will be discussed at a national meeting on the 22nd of April, with a specific section on DNAR; PK agreed to share that info and the discussion that follows with the group Lanarkshire Health Board have taken 2.5 years to role out DNAR, Lothian HB over two years, so it was considered that such time frames for a national role out may be reasonable The group agreed that there will need to be a considerable emphasis on education to take this forward Next Steps: PK to provide info to group after 22nd April, group to discuss and progress accordingly PK to attend ACP national meeting; 14th May 09, venue to be confirmed Timescales: National Advisory Group 22-04-09 (PAPER 3) Working Group 4. Information for patients and carers: Chair: Maria McGill Remit: To develop recommendations on palliative and end of life information to patients and carers Progress: The intention is that around 2/3rds of the membership of SLWG4 is made up by NHS Forth Valley MCN members with others added from other areas and bodies to bring experience in this area to the work required. Government funding is available to support the employment of a project worker 2 days per week dedicated to this work - I hope we can have this person in place by June/July 2009. Timescales: To be determined National Advisory Group 22-04-09 (PAPER 3) Working Group 5. Acute Setting: Chair: Stan Wright & Pam Levack Remit: To be confirmed Progress: The group has met twice and is due to met on the afternoon of 22/04. Initial scoping of the remit has been undertaken and is hoped to be confirmed at the third meeting. Timescales: To be determined Working Group 6. Adolescents and Young Adults: Chair: Pat Carragher Remit: To be confirmed Progress: Initial scoping undertaken and membership nearing completion. Due to meet for the first time in May 2009. Timescales: To be determined National Advisory Group 22-04-09 (PAPER 3) Working Group 7. Public Health / Health Promotion: Chair: Kate Lennon Remit: To assist, within the context of Living and Dying Well a national action plan for palliative and end of life care in Scotland, in the development of a truly accessible and cohesive approach to palliative and end of life care across Scotland by exploring ideas and issues for addressing palliative and end of life care from a public health and health promotion perspective, including public and professional awareness of and attitudes towards death, dying and bereavement developing recommendations regarding appropriate initiatives to o address current low levels of awareness of palliative and end of life care o address existing societal taboos around discussion of death and dying and o enable people (patients, families, professionals and the general public) to feel more comfortable in speaking about such issues. Progress: The group has met twice so far. Having explored some relevant background reading and discussed some of the pertinent issues, the group has now split into four sub- groups which will examine specific issues in more detail (public engagement; advance planning; grief, loss and bereavement; professional development). The sub-group has developed and is currently piloting a questionnaire designed to get a feel for some of the things that are already taking place in Scotland to engage people in talking about care, loss, death and dying. Timescales: 15 April – 29 April 2009: survey being undertaken to find out what is already taking place in Scotland to engage people in talking about care, loss, death and dying. 6 May 2009: meeting of SLWG (7). Each sub-group will present a short paper outlining some of the key issues to be addressed in their specific area. 7 June 2009 – meeting of SLWG (7). Allan Kellehear, Professor of Sociology at Bath University and previously Professor of Palliative Care and Director, Palliative Care Unit, School of Public Health, La Trobe University in Melbourne will attend this meeting and give the group the benefit of his expertise. By the end of 2010 - the group plans to produce a draft report and recommendations for consultation among Scottish Partnership for Palliative Care members and other relevant individuals and organisations. 31 March 2010 – final report and recommendations will be submitted.