LIVING & DYING WELL AN ACTION PLAN FOR PALLIATIVE AND END OF LIFE CARE IN HIGHLAND PROGRESS REPORT

Highland NHS Board 4 October 2011 Item 5.3 LIVING & DYING WELL AN ACTION PLAN FOR PALLIATIVE AND END OF LIFE CARE IN HIGHLAND PROGRESS REPORT Report by Chrissie Lane, Cancer Nurse Consultant/Project Lead for Living & Dying Well on behalf of Heidi May Executive Lead for Living & Dying Well The Board is asked to: Note progress to date. 1 Background The Scottish Government published their intentions for improving palliative and end of life care across Scotland in Living & Dying Well Improving Palliative & End of Life Care (2009). NHS Highland developed an improvement action plan which set out to deliver consistently high quality palliative and end of life care to all those people who require it regardless of their age, diagnosis or place of care. The action plan included children, ensuring that every child or young person in Highland with a life limiting/life threatening condition have access to the sustainable, holistic, family centred and high quality palliative care and support that they need. 2 Contribution to Board Objectives The success of Living & Dying Well with its emphasis upon a person centred approach to care & care planning together with the importance of communication, collaboration & continuity of care across all care sectors and at all stages in the patient pathway has influenced the values which form both the Government s & Highlands Healthcare Quality Strategy. Hence there has been overlap with many of the other Boards work streams, in particular Long term Conditions Programme Collaborative, Shifting the Balance of Care & Better Together ensuring that people in their last year of life are partners in their care & manage their care needs to their abilities; avoiding unnecessary admissions to hospital; reducing the length of stay when hospitalisation is required and are cared for with dignity by empathetic and knowledgeable staff. This work is intrinsically linked to Shaping Bereavement Care A Framework for Action for Bereavement Care in NHS Scotland 2011. Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement. The Highland action plan set out to ensure that good palliative and end of life care is available for all patients and families who need it in a consistent, comprehensive, appropriate and equitable manner across all care settings. The key themes & associated activities of the action plan are: early identification of palliative care needs assessment or review of palliative and end of life care needs are recognised in all care settings at time of diagnosis, at times of changing or complex needs & at the very end of life holistic assessment, with the patient and carer, of their physical, social, emotional, cultural, religious and spiritual care needs and other relevant life circumstances so that care can be focused on their wishes and needs planning, co-ordination and delivery of appropriate care based on the needs identified appropriate sharing and communication across all care settings of the needs and plans identified and actions taken

regular review and repetition of the assessment and planning cycle NHS Highland submitted an Action Plan to the Scottish Government by 31 March 2009. The plan was approved by the Board at its meeting on 7 April 2009 and has been monitored annually by the Scottish Government. The Living & Dying Well Action Plan is being delivered through the local CHPs and Raigmore management structures with progress monitored through the Living & Dying Well Performance Management Group. Close partnership working with the Highland Palliative Care Network whose membership is multi-agency, has been pivotal for harnessing the clinical & managerial expertise across Highland and ensuring results and changes in practice have been achieved and embedded. The next phase of this work has now been confirmed by the Government in the publication Living & Dying Well: Building on Progress. It sets out its key priorities both nationally & within Health Boards to continue the improvements in care that had already occurred. There are four priorities which NHS Boards are being asked to deliver against: Implementation of the electronic palliative care summary (epcs) Implementation of anticipatory/advanced care planning Implementation & evaluation of the Do Not Attempt Cardiopulmonary Resuscitation DNACPR) Integrated Adult policy & the Child & Young Persons Acute Deterioration Management Policy (CYPADM) Improving palliative & end of life care in acute hospitals NHS Highland has achieved well against the original requirements of Living & Dying Well. Work is already firmly embedded to meet the continuous improvements set out in Living & Dying Well- Building on Progress. 3 How has patient/family care improved? 3.1 Early detection of palliative care needs Design & implementation of a Highland wide palliative care pathway which sets out what services & interventions should be available to people in (approximately) their last year of life when they come to understand that they have a life limiting illness. This generic pathway has been successfully adapted for use with people with learning disabilities which will ensure that this group of patients has access to the personnel, expertise and care facilities as the rest of Highland population The national Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Integrated Adult Policy has been implemented across Highland within all care settings to ensure that informed decisions are made in partnership with the patient at an appropriate time when they are able to be involved in these discussions as far as possible. The increased movement of patients between different care settings makes a single integrated and consistent approach to this complex and crucial area a necessity. The DNACPR policy was developed with the intent of supporting patients to achieve their goals for their end of life, in any care setting, but does not preclude other active interventions or care. Take up of the Palliative Care Direct Enhanced Service (DES) by Highland GPs has been positive. Sign up across the CHPs has been 100% in SE, 94% in North, 80% in Mid and 82% in A&B. This ensures that people who are diagnosed as being in the last year of life are placed onto the practice palliative care register. The benefits of this are that this group of patients are discussed and considered by the multiprofessional team to ensure care is planned, co-ordinated and centred on the wishes of that person as much as possible. Each practice across Highland is able to demonstrate that they have a system in place which facilitates these multiprofessional discussions (even those who have not signed up to the Palliative Care 2

DES). They range from weekly to monthly occurrences depending upon the size of the practice and are referred to as palliative care MDT review meetings. Regular reviews help to ensure that patients can be supported in their place of choice through efficient care provision and prevention of unplanned hospital admissions. Ensuring strong links to the Long Term Conditions Collaborative has brought about mutual benefits in both work streams as a large proportion of this patient group will deteriorate and progress to receiving end of life care. Confusion in terminology of initiatives being implemented across Highland communities led to the production of Pro-active, Planned & Co-ordinated Care for Patients with Long Term Conditions as a jargon buster for clinical staff. The outcomes for patients & their families will be to ensure that the most appropriate model of community care is adopted depending upon the care needs of the individual. This documentation is currently being evaluated within the community nursing teams to understand the impact upon patient care. 3.2 Holistic assessment Anticipatory and advanced care plans have been successfully implemented across Highland and this work continues, underpinned by an education programme delivered by the Highland Hospice educators and senior NHS nursing staff. This approach ensures practitioners adopt a "thinking ahead" philosophy of care that allows them and their teams to work with people and those close to them to set and achieve common goals that will ensure the right thing is being done at the right time by the right person(s) with the right outcome. This includes discussion regarding where the dying person would prefer to be cared for at the end of their life NHS Highland has developed a comprehensive set of Palliative care Guidelines that are well respected and utilised in clinical practice across all care settings (including Care Homes). There is a robust mechanism for updating the guidelines and alerting areas to any changes made in line with current best practice. In Argyll & Bute the palliative care experts have agreed to implement the Palliative care guidelines produced by Greater Glasgow & Clyde in line with patient pathways Evaluation is currently taking place to decide upon the most appropriate assessment tool for use in palliative care through the Highland Palliative Care Network. Palliative care assessment tools, such as the patient dignity tool being used within the Hospice & several communities ensure that the patient is central to the assessment and can self report those issues which are the most important to them Nationally Highland is heralded as an early implementer of Just in Case boxes which ensures that appropriate medication is readily available in a patient s home should their condition require them to be used. An audit carried out between 2010-2011 demonstrated that for the 60 patients who had a just in case box within their homes, staff reported that its presence and use had prevented 46 hospital admissions. 3.3 Communication and co-ordination of care Ensuring that people are able to die in their own homes if they prefer, has a focus through the use of advanced care planning & decisions being made by the patient regarding their preferred priorities of care. A combination of this planning process, the use of on-call community nurses, Marie Curie Nursing Services, newly developed joint funded posts between NHS & Marie Curie will increase the number of people who can be supported to die at home. The Liverpool Care Pathway (LCP) which is used to improve and co-ordinate care in the last few days of life has been embedded into clinical areas both in hospitals, community settings and Care Homes. The LCP is an integrated care pathway that is used at the bedside to ensure sustained quality of care to those people who are dying in their last hours and days of life. It is a means to transfer the best quality for care of the dying from the hospice environment into other clinical areas, so that wherever the person is dying there can be an equitable model of care. A re-audit as to the quality 3

of this pathway is being planned and will be carried out in 2012. The audit in 2010 identified areas for improvement such as a need for further education of staff on the implementation of the pathway; spiritual care was poorly addressed & information for the family of the dying person was poor. An action plan was drawn up and much work to address the deficiencies of the pathway implementation have been addressed. Ongoing assessments and the use of the Electronic Palliative Care Summary necessitate the need for health care professionals to have difficult conversations with people particularly in relation to their wishes at the end of their life, be that where they wish to die or whether they wish to be resuscitated. There are happening with increasing frequency. In Argyll & Bute two Macmillan Clinical Nurse Specialists have been trained on a national NES communication skills training course. They are delivering a multi-professional programme of education to increase practitioners confidence and skills in having sensitive conversations In 2011 the Terminal Care Budget was devolved to the North Highland CHPs. Criteria and assessment were established that allow staff in the communities to rapidly access additional funds that may be required to support an increase in support requirements should a patient wish to remain in their home or local community at the end of their life. The expenditure and criteria are being monitored. Change Fund CHPs are utilising a proportion of this budget to increase nursing coordination of care within end of life care particularly to aid discharge from acute hospitals and support virtual ward development. Joint funded posts between NHS and Marie Curie are being developed through this funding stream to ensure that patients are supported in their own homes through expert & prompt care delivery. 3.4 Information sharing NHS Boards are required to introduce the Electronic Palliative Care Summary (epcs). This is a GP based system which allows a truncated version of palliative care patients records to be access by out of hour services including the ambulance service. NHS Highland began the implementation in March 2011. To date 34% of North Highland practices have submitted patient details onto an epcs. However a steady increase in its uptake and usage is noted. This is being monitored on a monthly basis. As Argyll & Bute GP practices are in the midst of changing their computer operating system implementation has been delayed but will commence in the beginning of 2012 Many of these work streams have been supported by an ongoing education programme delivered to staff across the professions both by NHS & Highland Hospice staff through the Service Level Agreement. A model of education using the specialist palliative care medical staff within the community Palliative Care MDTs is being introduced to improve the availability and influence that this expertise can offer to more generalist staff to improve patient care and experiences. An annual Highland 2 day multi-professional palliative care education programme is now firmly established and extremely well evaluated. In the past two years, 170 staff attended this local event. 4 Work in progress Patient & carer evaluation: Evaluation of the impact of all these changes on the lived experience for the patient & their family is difficult to measure. There are multiple streams of work across the Board to prevent unplanned admissions, reduce length of stay and improve the quality of multi-professional team interventions. It is not always possible to isolate the specific impact of one specific work stream. Therefore to ascertain what constitutes excellent care and what are the gaps that people (patients, family/carers & professionals) identify forms the next step of our action plan. A project which utilises the use of diaries completed by patients, their carers and health care professionals is currently being finalised. Local services will be 4

able to use this information to tailor services that make a difference to real people. The information could be compared to quality markers to ascertain if implementation of recommendations constitutes good care. Evidence indicates that this is an acceptable format to collect real time and real perceptions of individuals experiencing or delivering care within palliative care. It gets at people s everyday experiences and is a less intrusive form of observation and evidence indicates that writing of diaries has a cathartic effect upon the individual. DNACPR evaluation: Health Improvement Scotland will publish in October/November requirements upon which to evaluate the implementation of the DNACPR Integrated Policy and the Child & Young Persons Acute Deterioration Management Policy. An audit for this work will be implemented. National Quality measure: As part of the Governments monitoring plans as to the impact of Living & Dying Well, a quality outcome measure is in the process of being finalised- Quality Outcome Measure 10: Percentage of last six months of life spent at home or in a community setting. It is a quality monitoring target aiming to produce achievable and measurable changes which will ensure quality improvement and enhance patient and carer experience. Ideally, this measure would relate directly to the preferred place of care at the end of life. However, this can change over time and is, therefore, difficult to track. National data is not currently available at this level of detail so it is not possible to focus the measure directly on preferred place of death. In the meantime, the proportion of time spent at home or in a community setting towards the end of life provides a high level indication of progress in implementation of the national action plan. These data can be inferred by measuring the amount of time spent in an acute setting during the last months of life (using hospital admissions data) and from this estimating the time spent at home or in a community setting. It is envisaged that an increase in this measure will reflect both quality and value through more effective, person centred and efficient end of life care with people being better able to be cared for at home or closer to home with a planned approach to end of life care resulting in less time in an acute setting. Published for the first time in September 2011 by ISD, these data are presented by financial year from 2005/06 to 2009/10 at Scotland, Health Board, Council and Community Health Partnership level. The measure is under development and the definitions are subject to change in light of stakeholder feedback once consultation with the NHS is completed. It is expected that this quality outcome will be measured annually from 2012. Confirmation as to the required increase in percentage required to improve quality as yet has not been given. At Scotland level 2009/10 data shows that, on average, the proportion of the last 6 months of life spent at home or in a community setting is 90.7% this is slightly lower than the Highland figure of 92.2% (Appendix 1). Palliative care in acute hospitals: a working group is being established to agree standards of care in acute hospitals given the national recommendations and examples of good practice to ensure that we have equity of care provision within all our acute hospitals. It is envisaged that this work will be applicable to all hospital settings and will link with the Dementia & Care of Elderly Standards. Improving the quality of palliative and end of life care is a complex agenda and much has been achieved across Highland. An action plan which sets out our priorities is firmly progressing. It should be stated that the Integration Agenda presents the opportunity for more rapid improvement to palliative & end of life care as social work and social carers are integral to care pathways and supporting people in their communities. 5

5 Governance Implications Staff Governance Education, training and development of hospital, community (including Care Homes) staff is a major component of this work stream. The Palliative Care Network leads on certain education initiatives and has prioritised specific training needs in relation to anticipatory/advanced care planning, skills required to have conversations about Do Not Attempt Cardiopulmonary Resuscitation, and palliative care symptom management. Patient and public involvement Active involvement of patient and lay representatives in the Highland Palliative Care Network continues to influence decision-making and allows this unique perspective to be brought to the table. Capturing the lived experiences of people in their last 6 months of life will ensure that we understand issues which are important to them and adapt our services and care accordingly so that they may be of high quality. Clinical Governance Out of Hours responses to unplanned clinical incidents remains a challenging issue. On-duty practitioners are not always familiar with recorded wishes of patients or their care plans. Implementation of the electronic palliative care summary will go someway to address this. Financial Impact Plans to address the above mentioned challenges and governance implications are set out in the Action Plan and all resource implications will be prioritised through the CHP/Raigmore management teams and the Senior Management Team. 6 Impact Assessment Living & Dying Well Action Plan strongly embraces the issues of equity and equality for all in respect of palliative and end of life care. Any developments, policies and initiatives will be impact assessed to ensure equality and diversity issues have been addressed. Chrissie Lane Macmillan Cancer Nurse Consultant References Do Not Attempt Cardiopulmonary Resuscitation Adult Integrated Policy. Scottish Government Publication 2010 Living & Dying Well- A National Action Plan for Palliative & End of Life Care in Scotland. Scottish Government Publication 2008 Living & Dying Well-Building On Progress. Scottish Government Publication 2011 Quality Outcome Measure 10 - Percentage of End of Life Spent at Home or in a Community Setting. Information Services Division August 2011: www.isdscotland.org/healthtopics/health-and-social-community-care publications/2011-08-30/2011-08-30- qom10-report.pdf?59151858092 6

Appendix 1: Percentage of last 6 months of life spent at home or in a community setting (Health Board of Residence) 2005/06 2006/07 2007/08 2008/09 2009/10 Ayrshire & 90.1 90.1 90.6 90.1 90.5 Arran Borders 91.1 90.9 90.2 89.4 91.4 Dumfries & 92.7 93.4 92.7 93.5 92.7 Galloway Fife 89.5 89.7 89.8 90.3 90.1 Forth Valley 90.3 90.7 90.6 90.3 91.1 Grampian 93.1 93.2 93.5 93.0 93.6 Greater 88.4 88.6 88.3 88.5 88.4 Glasgow & Clyde Highland 91.0 91.7 92.6 92.5 92.2 Lanarkshire 88.9 89.3 89.5 89.6 89.7 Lothian 92.1 92.0 91.8 91.5 91.9 Orkney 88.6 89.0 89.0 88.4 90.3 Shetland 91.1 92.1 93.7 92.2 90.6 Tayside 91.9 91.6 91.9 91.7 92.0 Western 89.7 89.4 88.1 89.9 89.6 Isles Scotland 90.4 90.5 90.6 90.5 90.7 7

Percentage of last 6 months of life spent at home or in a community setting by Community health Partnership Community Health Partnership 2005/06 2006/07 2007/08 2008/09 2009/10 Aberdeen City CHP 92.5 92.6 93.1 92.5 92.6 Aberdeenshire CHP 94.2 94.6 94.5 94.1 94.5 Angus CHP 92.8 92.1 92.9 92.9 93.7 Argyll & Bute CHP 91.6 91.8 92.1 92.2 91.5 Clackmannanshire CHP 90.8 90.4 91.1 90.8 91.1 Dumfries & Galloway CHP 92.6 93.3 92.7 93.5 92.7 Dundee CHP 91.4 90.6 91.2 91.0 91.6 Dunfermline & West Fife CHP 87.4 87.6 88.0 88.5 88.4 East Ayrshire CHP 89.9 90.1 90.4 89.8 90.4 East Dunbartonshire CHP 86.3 87.6 87.7 87.8 88.1 East Glasgow CHCP 89.6 89.7 89.3 88.9 89.8 East Lothian CHP 93.6 93.3 92.9 92.7 93.4 East Renfrewshire CHCP 90.4 90.8 90.4 90.7 90.6 Edinburgh CHP 92.2 91.9 91.6 91.6 91.9 Falkirk CHP 89.5 90.4 90.0 89.9 91.1 Glenrothes & North East Fife CHP 91.3 90.7 91.3 91.7 91.1 Inverclyde CHCP 88.4 89.0 88.3 87.4 88.0 Kirkcaldy & Levernmouth CHP 90.1 91.0 90.3 91.1 90.8 Mid Highland CHP 90.1 92.0 93.2 93.3 92.9 Midlothian CHP 93.1 92.4 91.9 92.1 92.7 Moray CHSCP 91.5 91.5 91.9 91.4 93.2 North Ayrshire CHP 90.2 88.9 89.9 89.0 90.1 North Glasgow CHCP 87.6 87.8 87.9 88.5 88.0 North Highland CHP 91.0 91.1 91.6 91.6 91.0 North Lanarkshire CHP 88.8 88.8 89.2 89.5 89.4 Orkney CHP 88.5 89.0 88.9 88.4 90.3 Perth & Kinross CHP 91.7 92.0 91.9 91.4 90.9 Renfrewshire CHP 88.1 88.1 88.3 89.3 88.4 Scottish Borders CHCP 90.8 90.8 90.1 89.4 91.4 Shetland CHP 91.1 92.1 93.6 92.2 90.5 South Ayrshire CHP 90.3 91.2 91.7 91.5 90.9 South East Glasgow CHCP 90.4 90.4 89.3 88.9 89.4 South East Highland CHP 91.0 91.3 92.8 92.1 92.6 South Lanarkshire CHP 89.2 90.0 89.5 89.6 89.9 South West Glasgow CHCP 87.8 87.2 86.2 87.0 86.4 Stirling CHP 91.0 91.1 91.1 90.5 91.1 West Dunbartonshire CHP 87.5 88.0 87.5 88.8 88.3 West Glasgow CHCP 87.8 87.8 88.1 87.0 86.8 West Lothian CHCP 90.1 91.2 91.1 89.7 89.9 Western Isles CHP 89.7 89.4 88.0 89.8 89.6 Scotland 90.4 90.5 90.6 90.5 90.7 8