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Adult Palliative and End of Life Care Strategy2016 - 2019
#PROUD TO CARE FOR YOU wuth.nhs.uk
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#PR
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@w
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1. Introduction
Specialist palliative care helps those with advanced, progressive, incurable illness to live as well as possible until they die. It enables needs (physical, psychological, social or spiritual) of the patient and those close to them to be identified and met throughout the last phase of life and into bereavement.i
This strategy sets our vision of excellence in adult palliative and end of life care –
Our ambition is to make palliative and end of life care as good as it can possibly be each and every time. By working together we will provide care that is well planned, compassionate, holistic, and focused on continuously meeting the needs of the individual and those close to them
We will concentrate our efforts on three overarching aims, which will deliver big improvements in the care we can offer, resulting in better experiences for those who are entering the last years, months, days and hours of their lives.
1. Delivering system-wide improvements that make the best use of quality frameworks and specialist expertise,
2. Investing in and empowering staff to approach care towards the end of life as ‘everybody’s business’
3. Co-ordinating and planning care more effectively by working more collaboratively and prioritising integration
At the heart of our plans to develop palliative and end of life care are the Trust PROUD values (Patient, Respect, Ownership, Unity, and Dedication) and the NHS 6Cs, Courage, Commitment, Care, Compassion, Competence and Communication. We are clear that delivering the highest quality care means developing a service that is patient-centred, efficient (timely and without duplication), effective (evidence-based and safe), equitable (provision is in line with need and accessible to all), and reliable (a consistently good service for patients, carers and families). The improvements introduced by this strategy will support Wirral University Teaching Hospital NHS Foundation Trust’s vision to be,
‘the First Choice Healthcare partner to the communities we serve, supporting patients’ needs in an integrated and seamless way: from the home, through to the provision of regional specialist services by partnering with other health and social care providers across the public, private and 3rd sectors.’
2. Scope
This strategy has direct and immediate relevance to commissioners and providers of Specialist Palliative Care and allied services in Wirral; encompassing care which is delivered in hospital, in the community, and at Wirral Hospice St John’s. Linked to this strategy is a separate action plan and monitoring dashboard, underpinned by clear lines of governance and accountability, including the Trust-wide risk register, and board assurance framework. The ‘strategy on a page’ document identifies enabling strategies which are needed to help us realise our vision.
3. End of life and palliative care aspirationsThe milestone objectives in this strategy derive from a clear assessment of need, which has been informed by a variety of sources, from national policy and guidance, to inspection, audit, epidemiological data, compliments and complaints. This analysis has helped us to be clear on the things that are working well in end of life care - the assets that we can build on further, and gaps where action is most needed to bring about change. However, we fully recognise that in order to achieve the best quality care we need to do more than tackle deficits, so our objectives
also reflect the Trust’s aspirations for the service over the next three years.
Population
In England and Wales almost 1% of the population dies each year.ii In 2014, 3,548 deaths amongst Wirral residents were registered. 1,443 of these related to adult inpatient deaths at WUTH and a further 601 which occurred post-discharge.iii Equal numbers of deaths were from cancer, cardiovascular diseases and other causes, with one in seven attributable to respiratory disease, which is higher than the national average. 69% of deaths were in people aged 75 or older. Currently, a fifth of the local population is aged 65 or over and 2.5% (around 8,000) are 85 or over, with this figure expected to more than double by 2033.iv
National research into people’s preferences regarding place of death suggests that in the North West, as elsewhere the most common answer (64%) is home followed by hospice (26%), with a growing proportion of people in older age groups preferring hospice care (41% in people aged 75 or older).v Currently in Wirral, 48% of deaths across all age groups (The large majority (84%) of deaths in hospital are in individuals aged 65 years or older) occur in hospital and 23% at home (falling to 15% for people aged 85 or over), which is in line with the picture nationally. Compared to national figures fewer deaths occur in hospice settings (3%), and more take place in care homes (23%). In Wirral, 65% of people with dementia die in their usual place of residence and 35% die in hospital, reflecting findings at a national level.vi
Establishing a preference for place of death and planning for that is an important aspect of palliative and end of life care. However, patient-centred approaches also recognise that preferences can and often do shift as time passes and the needs of the patient and important others change. Recent research suggests that ultimately the experience of dying (freedom from pain and distress, privacy and dignity, and the opportunity for those close to the dying person to be present) carries more meaning and value for patients than the location itself.vii
These statistics illustrate some of the current and future challenges that confront palliative and end of life care services. We need to enable more people to die in the setting of their choice and to improve the quality and experience of hospital care, which will continue as the main alternative for many. This is especially pressing since we know that 30% of hospital inpatients are in the last year of life.viii
In order to make good plans it is essential that people entering the last year or months of life are offered the opportunity to participate in advance care planning. This requires sufficient specialist staff and clinical leaders as well as a bedrock of generalist staff who are confident and equipped to have the right conversations at the right time and to provide patient-centred end of life care. An organisation that truly recognises end of life care as ‘everybody’s business’ can release more expertise to devote to specialist palliative care and complex end of life care.
Policy
A wide array of national policy and guidance from a number of expert bodies has been published in recent years. The following documents have helped to shape and inform this strategy and will also guide the implementation and service transformation phase. Relevant local policies, guidelines and standard operating procedures are included in the action plan.
• Transforming end of life care in acute hospitals - The route to success ‘how to’ guide (revised December 2015)ix
• Actions for End of Life Care: 2014-16x
• Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020xi
• One chance to get it right -Improving people’s experience of care in the last few days
and hours of lifexii
• NICE quality standards for end of life care for adults (QS13)xiii and guideline for care of dying adults in the last days of lifexiv
At the heart of each of these documents are six overarching ambitions for palliative and end of life carevii, underpinned by five high impact enablers (below). Work has already begun on the introduction of some of these, with much more still to achieve in some areas, notably the Amber care bundle and advance care planning.
National ambitions Priority enablers
1. Each person is seen as an individual;
2. Each person has fair access to care;
3. Maximising comfort and wellbeing;
4. Care is coordinated;
5. Staff are prepared to care;
6. Communities are prepared to help
1. Advance care planning
2. Electronic Patient Care Co-ordination Systems
3. Amber care bundle
4. Rapid discharge home
5. Priorities of Care (One Chance to get it right)
The North West End of Life Care Model developed by strategic clinical networks will also be adopted as a local strategic framework. A key strength of this model is the perspective it offers on when palliative and end of life care is appropriate; beginning with diagnosis of life-limiting illness and ending with bereavement support during the year after death. Developing this continuum of changing support will be one of the key changes that this strategy will deliver through each of its main objectives.
Current service structure
Hospital Specialist Palliative Care Team
This is a commissioner led integrated service. Wirral University teaching Hospital employs and manages the end of life facilitators and the Consultant contracts are held at WUTH; the Specialist Palliative Care Nurses in-reach from Wirral Community Trust and are managed by Wirral Community Trust. There is no service level agreement between Wirral Community Trust and WUTH.
• 0.7 sessions delivered by two part time Consultants in Palliative Medicine from a shared resource across an integrated service. The Consultants provide support to all inpatients and one outpatient clinic per week.
• 1.00 wte Band 7 End of life Facilitator (currently flexible part time ~0.8wte)
• 1.00 wte Band 6 End of Life Facilitator (currently part time 0.6 wte)
• 0.2 wte Band 4 admin support (currently unavailable due to capacity issues)
The North West End of Life Care Model
1 2 3 4 5
Advancing Disease
Increasing decline
Last Days of Life
First Days After Death
Bereavement
Death 1 year/sWeeksMonths1 year/s
• Named AHP to attend the weekly 90 minute MDT (often unable to attend due to capacity issues and can only provide minimal additional input)
• Variable support from the Community Clinical Nurse Specialists (CNS) employed by Wirral Community Trust
The Palliative Medicine consultants on Wirral take part in an weekend and on- call rota which is currently a 1 in 3.5 rota frequency, enabling 24 hour access to SPC advice as recommended by NICE and 9-5, seven day access to face- to- face contact with Clinical Nurse Specialists.
Service development
Key themes emerging from our service gap analysis are:
• As highlighted in the most recent Care Quality Commission inspection report, the level of consultant resource needs to be increased in order to ensure effective leadership of the specialist integrated service and implementation of this strategy; to enable round-the-clock access to specialist input, and also as a key means of developing the capabilities of clinical leaders from other areas. Deficits in senior nurse manager input for the hospital and administrative support have also been identified.
• Processes can benefit from standardisation to support quality, efficiency, co-ordination and integration, e.g. use of shared assessment and care frameworks, including the NW End of Life Care Model, advance care plans, discharge documentation, a shared minimum dataset for monitoring, and a single approach for capturing and reviewing service activity
• The current service can benefit from greater integration e.g. a removing duplicate systems for documenting care, a shared programme of learning and development, more collaborative working with other specialist teams, integrated risk reporting and management
• Unmet training and education needs should be addressed, e.g. recognition of life-limiting illness and opportunities to begin open conversations about the needs and preferences of the dying person and those close to them including advance planning; communication and skills training for staff at every level to deliver effective, individualised and holistic care, including after death and bereavement support
4. Strategic aims and objectives
These are the steps we plan to take in order to achieve our vision of excellence in palliative and end of life care.
I. Delivering system-wide improvements that make the best use of quality frameworks and specialist expertise
i. Conduct workforce review to build capacity and clinical leadership
• Develop a business case to bring consultant resource up to the level recommended in national guidelines and create a senior nurse manager role at WUTH to ensure effective management of the Integrated Specialist Palliative Care Team ( ISPCT)
• Secure appropriate levels of administrative support for consultants and the ISPCT team
• Enable service leaders, managers and team-members to regularly review in-hospital activity enter in order to evaluate CNS staffing sufficiency against the clinical and service developmental demands of this role
ii. Configure palliative and end of life care around recognised quality frameworks
• Fully embed high impact enablers – NICE Quality Standards, advance care planning,
EPaCCS, the Amber Care bundle and revised rapid discharge to die SOP
• Launch the Wirral multidisciplinary Record care for adults in the last days of life, incorporating the five priorities from One Chance to Get it Right. Support with Cerner solutions e.g. anticipatory prescribing order set; develop tracking system to deliver ‘real time’ quality assurance and targeted support in the last days of life
• Adopt and use the North West End of Life Care model to raise the profile of specialist palliative care as well as care at the end of life
iii. Develop clinical governance structures underpinned by a culture of ‘information for action’
• Continue to participate in national and local audit and action-planning, e.g. the National Care of the Dying in Acute Hospital auditxv , the CODE survey of bereavement experiencexvi, death certification audit and introduce the WUTH bereavement service audit. Develop Cerner IT solutions to streamline audit activity.
• Ensure all WUTH and Wirral Community Trust incidents, formal complaints and informal feedback are reviewed and acted upon, the risk register is updated and learning is shared
• Wirral Palliative and End of Life Care Team meetings will also provide oversight and input into monitoring and review of specified policies with relevance to end of life and palliative care
• Continue to develop and implement the palliative and end of life care dashboard and feed information into formal healthcare needs assessment in order to evaluate and further develop the service
• Use Advancing Quality and Listening into Action methodologies to drive service continuous improvements
II. Investing in and empowering staff to approach care towards the end of life as ‘everybody’s business’
i. Develop a communications plan to support the launch of the new three year strategy and re-launch the service
ii. Grow the knowledge, skills and capabilities of all End of Life and Palliative care team members
• Agree a shared programme of training and development across WUTH, community and hospice settings, including formal education and more informal, staff-led learning opportunities
• Enhance skills in quality improvement, change management and teaching
• Develop individual special interest areas to enrich the team’s professional expertise, raise the profile of the service particularly in non-cancer specialties and strengthen ongoing involvement in quality improvement work
iii. Understand and meet the training needs of clinical and non-clinical WUTH staff and volunteers
• Conduct a comprehensive training assets and needs assessment
• Develop a training and development offer for staff at all levels, which is values-based and emphasises effective caring and communication skills. Further develop link nurse role on wards
• Clinical skills sessions should include, training on the use of new tools and processes, e.g. advance care planning, the record of care for patients in the last days of life; knowledge and skills development, e.g. individualised holistic assessment, anticipatory prescribing and symptoms management; organ donation; expectations and responsibilities e.g. for involvement of important others, documentation and death certification; and the support available from ISPCT
• Where appropriate regular end of life and palliative care training should be linked to frameworks such as appraisal, revalidation and personal development planning
• Explore hospice and community/ward staff exchange and insight programmes to improve cross-organisational knowledge, skills and collaborative working
III. Co-ordinating and planning care more effectively by working more collaboratively and prioritising integration
i. Standardise documentation and IT systems
• Wherever possible, agree and adopt shared assessments, care plans, resources e.g. symptom control formulary, discharge summaries, clinical recording systems and activity capture across settings
• Proactively engage with opportunities presented by Healthy Wirral and the Health Information Exchange
ii. Devote time to team-building
• Be able to articulate an open and shared sense of purpose and vision for the ISPCT and end of life team functions within WUTH
• Trial new approaches to routine service delivery and learn from models elsewhere
iii. Develop the multi-disciplinary team base for specialist and complex care
• Use 6-12 month secondments to secure dedicated specialist input into the ISPCT from allied health professionals, e.g. a physiotherapist, occupational therapist, dietitian, psychologist, pharmacist, discharge co-ordinator, and social worker
iv. Develop more integrated relationships with other specialties
• Support the Trust’s work on readmissions and length of stay by collaborating more closely with teams such as gastroenterology, renal, cardiology, respiratory, haematology, emergency medicine and community geriatricians
• Improve communication and collaboration with allied teams such as risk management, the bereavement service, integrated discharge team and the critical outreach team. Re-establish partnership working with CNSs from other specialties.
v. Adopt a system-wide perspective to service improvement
• Collaborate with Wirral Hospice and Wirral Community Trust to identify assets and opportunities to improve patient care and service efficiency
• Link outcomes to record of care and other electronic care-planning data to drive and monitor system-wide improvements e.g. multi-agency review and action-planning around preferred place of death outcomes
vi. Interface with the wider community
• Champion the Wirral End of Life Charter and national campaigns such as Dying Matters
• Although very few people die in circumstances where organ donation is possible the patients’ views on organ donation will be sought where appropriate, ensuring their wishes are facilitated.
5. Framework for measuring progress
The objectives of this strategy will be the focus of service development and improvement over the next three years. Key measurable outcomes include
• Experience of care will improve, including avoidance of unnecessary interventions as death approaches and positive feedback from surveys of the bereaved
• Services and care will be more co-ordinated and efficient, ensuring that conversations about palliative and end of life care involve the right people and happen at the right time.
• The skills and confidence of generalist and specialist staff will improve, supported by an adequate specialist staff base
• More people will die in the place they choose and many unnecessary admissions to hospital will be avoided
Patient flow will improve, demonstrated by reduced re-admission frequency and length of stay
Progress on the implementation of key changes will be monitored within the action plan and review process using a mixture of hard and soft indicators, such as updates at the monthly WUTH End of Life Team meeting, audit, the End of Life care dashboard, incident reporting and qualitative feedback from people who receive care from the service.
i DH (2008) National End of Life Care strategy https://www.gov.uk/government/policies/end-of-life-careii Office of National Statistics Deaths registered in England and Wales in 2014 https://www.ons.gov.uk/
peoplepopulationandcommunity/birthsdeathsandmarriages/deathsiii Dr Foster http://www.drfoster.com/iv Public Health England (2014). The Older People’s Health and Wellbeing Atlas http://www.wmpho.org.uk/
olderpeopleatlas/v Gomes et al (2011) Local preferences and place of death in regions within England 2010 http://www.
endoflifecare-intelligence.org.uk/resources/publications/lp_and_place_of_deathvi Public Health England (2013) National End of life Care Intelligence Network. End of Life Care Profiles http://
www.endoflifecare-intelligence.org.uk/end_of_life_care_profiles/vii Pollock K (2015) Is home always the best and preferred place of death? BMJ 2015;351:h4855viii Clark M et al (2014) Imminence of death among hospital inpatients: prevalent cohort study Palliative Medicine
DOI 10.1177/0269216314526443ix NHS England (2015)Transforming end of life care in acute hospitals - The route to success ‘how to’ guide
(revised December 2015) https://www.england.nhs.uk/2016/01/transforming-end-of-life-care/x NHS England (2014) Actions for End of Life Care: 2014-16xi National Palliative and End of Life Care Partnership (2015) Ambitions for Palliative and End of Life Care: A
national framework for local action 2015-2020 http://endoflifecareambitions.org.uk/xii Leadership Alliance for the Care of Dying People (2014) One chance to get it right -Improving people’s
experience of care in the last few days and hours of life https://www.gov.uk/government/publications/improvements-to-care-in-the-last-days-and-hours-of-life
xiii NICE (2011) End of life care for adults quality standards http://www.nice.org.uk/Guidance/QS13xiv NICE (2015) Care of dying adults in the last days of life http://www.nice.org.uk/guidance/ng31xv RCP (2015) https://www.rcplondon.ac.uk/projects/outputs/national-care-dying-audit-hospitalsxvi Mayland CR, Lees C, Germain A et al. Caring for those who die at home – the use and validation of
‘Care Of the Dying Evaluation’ (CODE) with bereaved relatives. BMJ Support Palliat Care doi: 10.1136/bmjspcare-2013-000596
#PROUD TO CARE FOR YOUwuth.nhs.uk
@wuthnhs
The 2016-19 Palliative and End of Life Care Strategyis also available online.
Visit www.wuth.nhs.ukand search ‘End of Life Care’.For more information contact
the End of Life Care Team on extension 8437
