End of Life Care Strategy 2016-19 This paper is for:
Approval
Recommendation: The Governing Body are requested to approve the End of Life Care strategy for 2016-19 For further information or for any enquiries relating to this report please contact: Khaled Kassem-Toufic, Senior Commissioning Manager, Frailty and Medical Commissioning Team
[email protected] 01732 375276
Reporting Officer: Khaled Kassem-Toufic Lead Director: Gail Arnold Report Summary:
Date: 26th July 2016 Agenda Item: 138/16 Version: Final
The development of the West Kent CCG End of Life Care strategy is based on the five quality domains that underpin the West Kent CCG Operating Plan. These are: 1. 2. 3. 4. 5.
Preventing people from dying prematurely Enhancing quality of life for people with long term conditions Helping people to recover from episodes of ill health or following injury Ensuring that people have a positive experience of care Treating and caring for people in a safe environment and protecting them from avoidable harm
The paper sets out the following areas for action to strengthen and enhance the quality and effectiveness of the end of life care across West Kent.
Promote better public awareness Integrated commissioning Identification of people approaching the end of life Advance Care Planning Coordination of care and better use of IT Good access to care Deliver high quality service Logistics Last days of life Care after death Support of families and carers Education and training
July 2016 NHS West Kent CCG
FOI status: This paper is disclosable under the FOI Act Strategic objectives links:
A: Implementation of Mapping the Future Blueprint D: Improve Service quality and patient safety
Board Assurance Framework links:
This paper supports the mitigation of the following strategic risks: A/C Failure to make the strategic changes needed to deliver Mapping the Future may result in a local healthcare system that - is unsustainable in the long term - is unable to ensure high quality accessible services for local people - does not deliver improved outcomes and reduced inequalities D Failures of clinical governance in the system could lead to: - less safe services - failure to safeguard vulnerable individuals - or failure to deliver high quality care for patients resulting in poorer health outcomes for local people or actual patient harm.
Identified risks & risk management actions:
The last CCG End of Life Care Strategy expired at end of March 2016. The risk of not defining a new strategy for 2016-19 is that commissioning activity will not coherently drive towards achieving the CCG’s strategic objective and operating plan. The risk of not having a framework will be that service provision will be uncoordinated and potentially damage the quality and outcomes of end of life care services across West Kent.
Resource implications:
Further work by the Frailty and Medical Commissioning team will be required to develop commissioning intentions and business cases for the implementation of integrated End of Life Care services in adherence to the strategic framework.
Legal implications
N/A
July 2016 NHS West Kent CCG
Equality and diversity assessment
Has an equality analysis been undertaken? ☒Yes This is a continuing activity which will be completed through the next stages of engagement and development There is no anticipated impact on Equality and Diversity through the implementation of the strategy because a key objective of the strategy is to make all services available for all patients who are expected to die within 12 months whatever their background, profile, leanings or affiliations. ☐Not applicable
Report history:
The strategy was approved by the Clinical Strategy Group on 14th June 2016 and the Planned and Integrated Care POG on 17th May 2016 and the End Of Life Care SIG on 14th June 2016.
Appendices
End of Life Care Strategy 2016 - 19
Next steps:
The Frailty and Medical Commissioning team will commence the development of commissioning intentions and business cases for the implementation of integrated End of Life Care services.
July 2016 NHS West Kent CCG
End of Life Care Strategy 2016-19 21.10.15 O
April 2016 Khaled Kassem-Toufic Senior Commissioning Manager NHS West Kent CCG
Patient focused, providing quality, improving outcomes
1.
Introduction
1.1.
“How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and it is a litmus test for health and social care services”1.
1.2.
In keeping with the vision and mission statements of West Kent CCG 2 we wish to improve the care at the end of life for our residents. We aim to achieve this transformation within available resources. We also aim to identify health inequalities and to address them.
1.3.
We aim to commission integrated responsive patient centred services that can deliver timely, seamless and high quality end of life care (EOLC) to people and their families regardless of diagnoses and in any setting 24 hours a day, 7 days a week.
1.4.
This strategy applies equally to all adults resident in West Kent dying from any cause, regardless of other physical or mental health needs. All end of life care services will be provided with dignity, respect and cultural sensitivity to people and their carers.
1.5.
A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or any addiction cannot cope without their support
2.
Definition of End of Life Care The term ‘end of life care’ can be understood in a variety of ways. Throughout this document the term ‘end of life care’ will adhere to the following definition 3: People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with: •
Advanced, progressive, incurable conditions
•
General frailty and co-existing conditions that mean they are expected to die within 12 months
•
Existing conditions if they are at risk of dying from a sudden acute crisis in their condition
•
Life threatening acute conditions caused by sudden catastrophic events.
1
National End of Life Care Strategy: Promoting high quality care for all adults at the end of life 2008 West Kent Strategic Commissioning Plan 2014-15 3 One Chance to Get It Right report (2014) 2
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3.
National Context
3.1.
In 2008 the Department of Health published The National End of Life Care Strategy 4, and since then there have been annual reports on activity around the country. Our local strategy is aligned to this well-researched document. Various threads of the national strategy are reflected in our local strategy below.
3.2.
People with advanced life limiting illnesses and their families would expect good end of life care whatever the causes of their condition. The vision for the many living with the foreseeable prospect, and consequence, of death, dying and bereavement draws upon the wishes of those with bereavement experience and seeks to ensure a personal experience of end of life that is as good as possible . “I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).” 5
3.3.
The quality standard for end of life care for adults requires that services are commissioned from and coordinated across all relevant agencies, including specialist palliative care provisions as well as the voluntary sector and encompasses the whole end-of-life care pathway. An integrated approach to provision of services is fundamental to the delivery of high-quality care to people approaching the end of life and their families and carers6.
3.4.
Physical symptoms such as pain, breathlessness, nausea and increasing fatigue are common in people who are approaching the end of life; they may also experience physical, social, psychological, emotional and spiritual difficulties. The proper management of these issues requires effective and collaborative, multidisciplinary working within and between generalist and specialist teams. Information about people approaching the end of life, and about their needs and preferences, is not always captured or shared effectively between different services involved in their care, including out of hours and ambulance services.
3.5.
Many people receive high-quality care in hospitals, hospices, care homes and in their own homes but a considerable number do not.
4
End of Life Care Strategy: Promoting high quality care for all adults at the end of life 2008 National Voices and the National Council for Palliative Care and NHS England. Every Moment Counts: A narrative for person centred coordinated care for people near the end of life 6 NICE End of Life Care for Adults, Quality Standard 13 5
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3.6.
Up to 45% of people in the 75+ age group say they would prefer to die at home, but only 20% actually do. The preferences of those in 75+ age group are important because they account for 67% of all deaths and thus most closely mimic the preferences of those nearing the end of their lives.
3.7.
The table below gives the percentages for place of death for England and West Kent in 2013
Place of death
Preference 16+
Preference 75+
Actual
West Kent actual
Home
62%
45%
20%
21%
Hospital
2%
6%
46%
43%
Hospice
32%
41%
9%
9%
Care Home
1%
5%
24%
23%
Other
3%
3%
1%
2%
Data source: Office of National Statistics & Kent and Medway Public Health Observatory
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4.
Local context
4.1.
The total population of West Kent in 2015 was 474,107; this is projected to rise to by 7.16% to 508,053 by 2020. However, percentage growth in the 65 and over age group is projected to rise disproportionately by 15.19% in 2020 and 27.2% in 2025 as shown in the graph below.
70.00%
Projected population change in 2015 to 2035 from 2013* for selected age groups in West Kent CCG
60.00%
Percentage change from 2013
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
2015
2020
2025
2030
2035
0-15
2.48%
9.03%
12.50%
12.20%
11.51%
16-64
0.89%
4.05%
7.09%
9.06%
10.82%
65 and over
5.10%
15.19%
27.26%
43.50%
58.79%
All ages
2.04%
7.16%
12.02%
16.19%
20.00%
* Derived from ONS 2010 based priorities
4.2.
Deaths in usual place of residence (which combines people’s own homes and care homes) are recognised as one of the main markers of quality in End of Life Care. Survey data suggests that many people would, given a choice, prefer to die at home and few wish to die in hospital. The data for West Kent suggest while the direction of travel is moving away from deaths in hospital, they still account for 42.5% of all deaths (2013). The graph below illustrates this.
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60
Percentage mortality by place of death West CCG 2009-2013 sources: ONS & KMPHO
50
40
Percentage
30
20
10
0
4.3.
2009
2010
2011
2012
2013
Hospital
49.5
48.2
47.5
41.4
42.5
Home
20.3
18.8
19.1
21.7
21.1
Nursing home
19.2
22
22.1
25.9
26.1
Hospice
9
8.7
9.2
8.7
8.1
Other
2
2.3
2.2
2.3
2.3
The pie chart below shows in percentage terms the primary causes of death in West Kent. The ageing population and developments in medicine and society mean that increasingly people are dying at older ages with multiple pathologies, a significant number with dementia.
Underlying cause of death West Kent CCG 2013 - KPHO Other 16% Digestive disease 5% Dementia 8%
Neoplasms 28%
Ischaemic Respiratory heart disease disease Other 11% 16% circulatoryStroke disease 8% 8%
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5.
Current Provision of EOL Services in West Kent Hospices Hospices provide holistic EOL care for people likely to die within 12 months, supporting them to die in their preferred place of care. They attend to the physical, emotional, psychological and spiritual needs of people approaching the end of their life through day services, as an inpatient facility or at the patient's home. They offer a range of services for their patients, their carers and families that include clinical, nursing and therapy services, alternative therapies, counselling, respite care, chaplaincy, welfare and financial advice. Access to hospice services is via professional referral of people with advanced, life limiting illness, however people approaching end of life are encouraged to self-refer as can their families and carers. Hospice services are part-funded through Grant-In-Aid by West Kent. Currently the CCG provides funding to two hospices: Hospice in The Weald and Heart of Kent Hospice. Maidstone and Tunbridge Wells Hospitals NHS Trust It has been identified that given a choice most people would prefer to die at home, however for a substantial percentage the reality is that they will die in hospital, following an unplanned admission. Given this fact, it is essential that hospital teams develop effective skills and knowledge to communicate effectively with patients at the end of life and their families and identify their preferred place of death and DNACPR preference. Improved communication skills and earlier identification of people at the end of life attending A&E or following an unplanned admission will enable hospital staff to mobilise community services to support these patients to die in their preferred place, thus reducing the number of people who die in hospital when it is not their preference. Provision of an appropriate care environment conducive to achieving a dignified death is also vital for those people actively dying in hospital where it is totally inappropriate to move them to another care setting. Community Hospitals There are 4 local community hospitals in West Kent who provide inpatient services for patients who choose to die within a community hospital setting within well equipped, supportive environments. Care Homes Most people admitted to a nursing or residential home will usually be approaching the end of their life and will die there. Caring for residents at the end of their life will therefore be core care provided by care home staff. To ensure that the West Kent population is well served with Page 7 of 28
a high standard of end of life care, care home staff in West Kent need to be well trained in planning end of life care and managing the dying phase. This is complicated by the fact that there is a high turnover of nursing /residential home staff and a general lack of experience in providing end of life care. GPs Caring for people nearing the end of their lives is part of the core business of general practice. The GP and the primary care team are central to the delivery of end of life care in the community, working closely with health and social care professionals from across the interface of primary, community, secondary, voluntary and social care to support the terminally ill in their preferred place to die with dignity and be symptom free. GPs hold regular multidisciplinary team meetings with health and social care provider to review and update the care provided to people at end of life The GP is generally ‘known’ by a person’s family or carer and is best placed to help co-ordinate providers in EOL care delivery and initiate difficult conversations about prognosis, identifying preferences for care and death and DNACPR instructions. Care of the dying challenges general practice to respond with the best that the profession has to offer – clinical expertise, considered professionalism, personalised care and human compassion. Out of Hours Out of hours primary care is provided by Integrated Care 24 (IC24), a not-for profit membership-based social enterprise organisation. The IC24 out of hours service is staffed by GPs and operates from 1900-0800 during weekdays and 0800-0800 hours at weekends. The community trust provide a ‘Rapid Response’ team of nurses and health care assistants who provide nursing care to people 24 hours a day, 365 days a year. Much of their care, out of hours, is for people at the end of life requiring pain relief ad symptom control. There are 2 teams in West Kent, one based at Tonbridge Cottage Hospital and the other at Coxheath. The community trust also provides a ‘Home Treatment Service’ staffed by doctors and practitioners who work 7 days per week until 10pm. They work closely with IC24 and the Rapid response team to deliver effective OOH services for those at end of life. Community Nursing End of life care is one of the core services provided by Community nurses who work closely with GPs, care homes and hospices, delivering EOLC to terminally ill people in their usual place of residence. Community nurses are often with patients during the dying phase. They play a pivotal role in the planning and co-ordination of end of life care and often provide supportive visits. The lead nurse within the GP practice may often undertake an initial assessment of the
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patient. Nurses attend the practice palliative care meetings and ensure that they link in with the palliative care register and the hospice teams. Third Sector The third sector (charities other than hospices) provide important end of life services to the West Kent population in their own home. West Kent CCG commission Marie Curie to provide a planned night sitting service. The CCG also helps fund respite breaks for carers through Crossroads Care Kent who provide palliative care trained staff to take over their caring responsibilities and are available 24/7. Social Care KCC plays a key role in delivery of the end of life strategy for clients and carers. The aim is to work with partners in the assessment, support and planning of care for the clients, which delivers choice, control and the care they need to manage end of life as they want. KCC consider the support to carers as a critical element of this process. KCC is also committed to working jointly with all other services providing help and support in order to ensure that all care is fully integrated. SECamb South East Coast Ambulance Service NHS Foundation Trust works with EOLC providers to ensure good practice and information sharing is current. SECAmb clinicians are aware of the complexity of patients at the End of Life and the services available to refer patients as required. Registered paramedics are able to administer patient specific directions if required. It has the ability for providers to upload patient information on to its computer systems (IBIS) to enable clinicians to have information about patients and their specific care needs, this system also allows for clinicians to feedback to teams on the contact they have had with their patient. SECAmb works extremely hard to improve the education of all ambulance clinicians in EoLC, it has an end of life care e-learning package for all staff to develop themselves in best practice and study days are conducted in conjunction with care teams and hospices when possible. Often 999 can be the first point of call for a deteriorating situation and it is important for the organisation to understand the most appropriate care required. Community pharmacies Community pharmacies currently provide an integrated End of Life Care service across primary and secondary care in West Kent. This is a local enhanced service under which a select group of community pharmacies stock and supply a defined group of palliative and urgent care medicines. A number of these pharmacies operate a 100 hour per week service. Between 17:00 and 06:30 hours the pharmacies are also able to arrange for dispensing medicines through Boots extended hours pharmacy. The pharmacists involved can provide up to date information and advice on prescription writing and dispensing in order to reduce the number Page 9 of 28
of difficulties experienced by carers and relatives in obtaining supplies of medicines needed at end of life. Anticipatory prescribing Anticipatory prescribing is essential to patients in the community with a terminal illness who have been assessed by a qualified healthcare professional as actively deteriorating and are in the last few weeks or days of life. Providing a good death at home is a vital part of modern General Practice but presents unique problems for the Primary care Team especially during the out of hours period when access to the patient’s own General Practice and regular pharmacy may not be possible. Anticipatory prescribing is designed to enable prompt symptom relief at whatever time the patient develops distressing symptoms and is based on the premise that although each patient is an individual with individual needs, many acute events during the palliative period can be predicted and management measures put in place in advance.
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6.
West Kent challenges in End of Life Care Those commissioning and/or delivering Health and Social Care services in West Kent face multiple challenges to meet the needs and preferences of people as they approach death. A number of specific problems and concerns about end of life care have been identified: •
As a society we do not talk openly about death and dying. Relatively few adults, including older adults, have discussed their own preferences for care with a close relative or friend, making it difficult for others, family and professionals, to help ensure their wishes are met
•
Health and social care staff often find it difficult to initiate discussions with people about the fact that they are approaching the end of their life. Death may be seen as a failure by clinicians, who may not have received training and do not have the skills to hold such discussions
•
In the absence of open discussions it is difficult or impossible to elicit people’s needs and preferences for dying care and to plan accordingly
•
The additional needs of those with complex physical, learning or mental disabilities may not be identified, resulting in inadequate care
•
People frequently need care from multiple services and they may need, or want, to transfer between locations (home, hospital, care home and hospices) and geographies. Care provision is often not well coordinated
•
People who are approaching the end of life need access to care and support 24/7. Services in the community are sometimes unable to respond to these needs because of capacity limits, resource constraints or inadequate training resulting in people being admitted to hospital as an emergency rather than being cared for in their normal place of residence (home or care home)
•
When people enter the dying phase, considered to be the last few weeks/days of life, health and social care professionals may not be aware of the resources available, such as Continuing Healthcare funding, to ensure maximum comfort for the patient and support for carers
•
After someone has died expectedly, problems may arise with regard to the timely verification and certification of death. This may lead to the unnecessary involvement of the coroner or police which can add to the distress of the bereaved
•
Support for family and carers during a person’s terminal illness and into the bereavement phase has at times been reported as inadequate. This can impact adversely on the carer’s health and wellbeing and on their ability to provide care Page 11 of 28
7.
West Kent vision for End of Life Care “I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s)” 7 This statement was created with extensive input from the widest range of individuals and organisations. It is based on existing literature, bespoke research and the engagement of people with experience. The End of Life Care vision within West Kent would see a community that is not threatened by the topic of death and dying and feels comfortable enough to discuss these matters freely and openly: •
We will have realised a consistent approach to the early identification of all people nearing end of life. All patient groups will be included – those with cancer, organ failure, dementia, learning disabilities, mental illness and the frail elderly. The people’s wishes and preferences for their care will be recorded on an electronic database to enable the sharing of their care plans with all professionals who form their care team
•
EOL healthcare support will be readily available to people 24 hours a day, 7 days a week to enable quality, specialist palliative and supportive care to be delivered within our localities in an efficient manner
•
EOLC providers will work collaboratively and effectively within West Kent with good, strong communication links with each other and the ability to offer a seamless, streamlined and holistic service to cater for the wide range of individual needs and preferences of people
•
All healthcare professionals involved in delivering EOLC will have the confidence, support and appropriate skills and competences in order to deliver high quality and effective care. A continuing programme of training, development and learning will be available. Also, all complaints will be shared widely and learnings disseminated to continually improve care provision
•
Carers will feel informed and supported in balancing care of their loved ones with maintaining their own health and wellbeing which may include work commitments.
•
People will be treated with dignity and respect at the end of their lives resulting in a positive experience of the care they receive
7
National Voices and The National Council for Palliative Care (NCPC) and NHS England (2015). Every Moment Counts: A narrative for person centred coordinated care for people near the end of life.
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•
People approaching end of life will be in receipt of high quality, effective care and will be supported to die in their preferred place of care in accordance with their wishes and preferences
•
Following the death of a patient, any carer/friend/family member wishing to receive bereavement support would be offered this in a timely fashion and receive appropriate counselling and support which may include welfare and benefits advice as well as spiritual support
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8.
Foundations for vision When the end of life is in sight people should have the care and support to enable them to live to the end in the best way that they can. To realise this vision we have adopted the eight foundations set out in the ‘Ambitions for Palliative and End of Life Care: A National Framework for local action 2015-20208’ produced by the National Palliative and End of Life Care Partnership. These foundations are the pre-conditions for delivering the rapid and focused improvement that we seek. Foundation 1: Individualised care planning Everybody approaching the end of their life should be offered the chance to create a personalised care plan. Opportunities for informed discussion and planning should be universal. Such conversations must be ongoing with options regularly reviewed. Foundation 2: Shared records To ensure the plan can guide a person centred approach, it has to be available to the person and, with their consent, be shared with all those who may be involved in their care. Foundation 3: Evidence and information Comprehensive and robust data are necessary to measure the extent to which the outcomes that matter to the person are being achieved. This, alongside strengthening the evidence base, will help drive service improvements. Foundation 4: Involving, supporting and caring for those important to the dying person Families, friends, carers and those important to the dying person must be offered care and support. They may be an important part of the person’s caring team, if they and the dying person wish them to be regarded in that way. They are also individuals who are facing loss and grief themselves. Foundation 5: Education and training It is vital that every locality and every profession has a framework for their education, training and continuing professional development to achieve and maintain knowledge, skills and behaviours that allow expertise and professionalism to flourish. Foundation 6: 24/7 access When we talk about end of life care we have to talk about access to 24/7 services as needed, as a matter of course. The distress of uncontrolled pain and symptoms cannot wait for ‘opening hours’.
8
www.endoflifecareambitions.org.uk
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Foundation 7: Co-design End of life care is best designed in collaboration with people who have personal and professional experience of care needs as people die. Organisations and clinicians who provide care should demonstrate these connections as well as valuable day-to-day relationships with people and relatives. Foundation 8: Leadership The leadership of Health and Wellbeing Board, CCG and Local Authorities are needed to create the circumstances necessary for action. Clinical leadership must be at the heart of all we do.
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9. 9.1.
West Kent Strategy 2016-19 The development of the West Kent CCG End of Life Care strategy is firmly based on the five quality domains 9 that underpin the West Kent CCG Operating Plan.
We have identified the following ambitions that address the eight foundations, strengthen and enhance the quality and effectiveness of the end of life care across West Kent. 9.2.
Promote better public awareness (Foundations 4) Everybody should have the opportunity for honest, sensitive and well-informed conversations about dying, death and bereavement, whether they are the person dying, their family, their carers or those important to them. Professionals have to be sure that opportunities for honest and sensitive conversations about the future are clearly offered. Where possible these offers to talk should be early enough in the End of Life Care Pathway (please see Appendix 1) to enable people to reflect on their circumstances, to adapt and to plan. Action Ensure that the Health and Social Care professionals involved in EOLC have the appropriate skills and confidence to discuss and arrange good EOLC with their people by specifying and
9
NHS Outcomes Framework
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monitoring the training, developmental and education programmes that must be undertaken. Support educational and promotional activity with carer and voluntary groups, care home staff, community nursing staff and the primary care sector as well as all parts of the wider community. 9.3.
Integrated commissioning (Foundations 7 & 8) As the services required by people approaching the end of life span different sectors and settings, it is vital to take an integrated approach to planning, contracting and monitoring of service delivery. West Kent CCG will work closely with Kent County Council through the Health & Well-being Board and EOLC providers to enable an integrated approach between health and social care providers to deliver high quality EOLC. Action The CCG will ensure that all relevant services are coordinated and that providers work with the CGG to identify areas where Health and Social Care work together to improve the seamless, holistic integrated delivery of services. The CCG will work with KCC to align and coordinate the commissioning and monitoring of services.
9.4.
Identification of people approaching the end of life (Foundations 1, 2, 3 & 5) We need all those working with people with life-limiting illnesses to have the skills to identify people in their last year of life and initiate conversations with them and their families and carers about their preferences. Of particular note is the need to look for the majority of people who do not die from cancer – those with organ failure, those with dementia and those who are frail and elderly. Action Support education and training in identification, referral pathways to other services, communication skills, advance care planning, and use of the Electronic Palliative Care Coordination Systems (EPaCCS) by specifying and monitoring appropriate training programmes and promoting best practice by use of incentives, CQUINs and other contractual levers.
9.5.
Advance Care Planning (Foundations 1, 4 & 6) Having identified those in the last year of life it should become routine to assess needs, elicit wishes and preferences about EOLC, agreeing an Advance Care Plan (ACP) which will include anticipatory prescribing, to reflect needs and wishes. The plan will be reviewed regularly. In addition, Emergency Health Care Plans (EHCP) will be used to help health care professionals make decisions if unwell people need to be treated or are entering a terminal phase and their ACP is to be implemented. In cases where an individual may lack capacity, we will use the principles of the Mental Capacity Act 2005 to assess and support that person to make their own decisions or make best interest decisions on their behalf. Page 17 of 28
Action Ensure that all people identified as needing End of Life Care have the opportunity to discuss their wishes and preferences and complete an Advance Care Plan which is then maintained and shared on the Care Planning Management System (CPMS). 9.6.
Coordination of care and better use of IT (Foundations 2 &3) Improve seamless working with multiple organisations through the use of the West Kent online Care Planning Management System (CPMS). Nationally, there are excellent results from the use of Electronic Palliative Care Coordination Systems (EPaCCS) similar to CPMS. These record people’s actual choices for their place of care and where EPaCCs are best established they are already showing significant reductions in hospital deaths and as many as 80% of people dying in their preferred place 10. Action To ensure that all healthcare providers involved with provision of EOLC have access to and utilise CPMS – this should include GPs, OOH GPs, hospices, community nursing, specialist palliative care teams, the ambulance service, clinicians at Maidstone and Tunbridge Wells Hospitals and local social services.
9.7.
Good access to care (Foundation 6) We aim to ensure good care is provided in every setting in a timely manner. As the condition of a person nearing end of life may change rapidly, it is essential that they can access services without delay. The CCG and Local Authorities need to ensure that medical, nursing and social care and carers’ support services are made available in the community 24 hours, seven days a week. It is also important that these services can be accessed without delay. This can avoid unnecessary emergency admissions to hospital and will enable more people to live and die in the place of their choice. Action Ensure the services delivered are responsive to meet the needs of people within a defined time frame. Identify gaps in service (from feedback and periodic systematic review) and be flexible in adapting the service to fill them. Schemes such as “Hospice at Home” are to be encouraged as we aim for more people to receive good EOLC in their own homes (including care homes). Where gaps or inequity of service provision have been identified we will ensure these can be addressed so that unnecessary hospital admissions are avoided and more people are able to live and die in their preferred place of care.
10
NHS Improving Quality: Benefits of EPaCCS
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9.8.
Deliver high quality services (Foundations 2, 3 and 6) Commissioners will review the availability and quality of End of Life Care services in all care settings. Also, commissioners will refer to the NICE Quality Standards (2011) that set out what is needed to deliver high quality care at the end of life, adopting a care pathway approach (please see Appendix 1) and the DH document “End of Life Care Strategy Quality Markers and measures for end of life care 2009”. The CCG is committed to providing high quality services for EOLC within West Kent. Ultimately good quality of EOL care is more important than place. Action Ensure all services that the CCG commissions are delivered conform to the NICE (2015) Quality Standards for EOLC. As part of the commissioning round the CCG will introduce a quality assurance programme based on the quality markers within the national End of Life Strategy (2008) to ensure that the required standards are being achieved. End of Life Care Quality Markers 1 2 3 4 5 6 7 8 9 10
9.9.
Ha ve a n a ction plan for the delivery of high quality end of life ca re, which encompasses people with a l l di a gnos es , a nd i s revi ewed for i mpa ct a nd progres s . Ins ti tute effecti ve mecha ni s ms to i denti fy thos e who a re a pproa chi ng the end of l i fe. Ens ure tha t peopl e a pproa chi ng the end of l i fe a re offered a ca re pl a n. Ens ure that i ndividuals’ preferences and choices, when they wish to express them, are documented a nd communi ca ted to a ppropri a te profes s i ona l s . Ens ure that the needs of ca rers a re a ppropri a tel y a s s es s ed a nd recorded through a ca rer’s a s s es s ment. Ha ve mechanisms i n place to ensure that ca re for i ndividuals is co-ordinated across organisa ti ona l bounda ri es 24/7. Ha ve essential s ervices available and accessible 24/7 to all those a pproaching the end of l i fe who need them. Be a ware of end of life ca re training opportunities a nd enable relevant workers to a ccess or a ttend a ppropri a te progra mmes dependent on thei r needs . Adopt a s ta nda rdi s ed a pproa ch to ca re for peopl e i n the l a s t da ys of l i fe. Moni tor the quality a nd outputs of end of life care a nd s ubmit releva nt informa ti on for l oca l a nd na ti ona l a udi ts us i ng a l oca l l y determi ned da s hboa rd
Logistics (Foundations 4, 6 & 7) Simple measures such as timely access to transport, provision of equipment such as beds and commodes at home, the dispensing of anticipatory drugs (in Just-In-Case boxes) and further timely access to care packages that may be used in the last days of life make a big difference in ensuring that EOLC is delivered in a smooth and coordinated way. Failure in these logistical tasks may easily result in poor symptom control, an unnecessary admission to hospital or delay in returning home. Action To ensure that access to these logistical items is straightforward and timely Page 19 of 28
9.10.
Last days of life (Foundations 4, 5 & 7) Advance Care Plans (ACP) and the use of Emergency Health Care Plan (EHCP) forms will be adopted across West Kent to improve the last days of life. The CCG continues to endorse the use of ACPs and EHCP and will work with providers to ensure that people and their families/carers are communicated with fully about the decision to use it. Action Ensure decisions about a patient’s EOLC are communicated and jointly agreed with the patient and their family/carers where appropriate. To promote the use of evidence based framework that improve care in the last days of life.
9.11.
Care after death (Foundations 4 & 5) EOLC providers are aware of and communicate the availability of bereavement support to carers/friends/family should they require it. This links to the NHS Outcomes Framework 15/16 Domain 4 – ‘Bereaved carers' views on the quality of care in the last 3 months of life’. Action Ensure grieving family/friends/carers are signposted to bereavement services when appropriate to need. We will also put in place processes to ensure that verification and certification of death happens in a timely manner. Counselling, welfare and benefit advice and spiritual care will be made available.
9.12.
Support of families and carers (Foundations 4, 5 & 7) The family – including children – close friends, formal and informal carers of people in their last year of life have a central role in the provision of care. They should be closely involved in decision making, with the recognition that they also have their own needs. They need information about the likely progress of the person’s condition and about the services that are available. Carers may need practical and emotional support during the person’s life and after bereavement. Action Ensure decisions about a patient’s EOL Care are communicated and jointly agreed with the patient and their family and carers when appropriate. Ensure family and carers are assessed and considered for carers assessment and signposted to supporting services 24/7, such as respite care and bereavement services, when needed.
9.13.
Education and training (Foundations 4 &5) Ensuring health and social care staff at all levels have the necessary knowledge, skills and attitudes related to care for the dying is critical to improving EOLC. This means that End of Life Care needs to be integral to training curricula for most staff groups. The CCG and providers Page 20 of 28
will consider how training is provided to ensure that the relevant staff have the necessary competences. Action Providers to assist in identifying EOLC training needs for healthcare professionals and to work with the CCG in addressing those needs and to ensure that health and social care professionals have the most up-to-date knowledge and competencies to deliver EOLC.
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10. Monitor activity and quality Outcome measures will be used to monitor and evaluate the impact of EOLC delivery against the ambitions identified in this strategy. West Kent will work with partners across Health and Social Care, public health and the voluntary and private sectors to agree the baseline measures for these outcomes and how they will be measured.
Aim
Outcome measure
Current baseline
1
That people in West Kent who are expected to die within 12 months are included on the EOLC register
Increase the number of people on EOL register
~0.5% of West Kent Population
Place all identified EOL patients onto the EOL register by April 2019 with the expectation that they will total at least 1% of the whole West Kent population. Establish annual checkpoints to monitor progress
2
That people are supported to die in their preferred place of care
a. Reduce the average Length of Stay (LoS) in hospital for people aged 75+ following unplanned admission
~42% of all West Kent deaths occur in hospital
Reduce percentage of deaths in hospital following an unplanned admission to ~30% by April 2019. Establish annual checkpoints to monitor progress
~20% of patients on EOL register have completed Advancer Care Plans
Increase the percentage of EOL patients on the EOL register who have an Advance Care Plan to 50% by April 2019. Establish annual checkpoints to monitor progress
b. Reduce number of deaths in hospital for people aged 75+ following unplanned admissions 3
That people approaching the end of life have been provided with the opportunity to plan for the end of their life and communicate their preferences and wishes
Increase percentage of EOL patients on the EOL register who have a completed Advance Care Plan
Target
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Aim 4
Outcome measure
Current baseline None
Target
That quality care provided to people at end of life is current and appropriate to individual preference
Review EOL patients Advance Care Plans
1. Report the number of GP MDT EOL meetings taking place on quarterly basis
5
That bereaved carers and families have access to bereavement services when they require it
Increase the number of bereaved carers referred to bereavement services
Baseline to be established
Increase baseline by 50% by April 2019. Establish annual checkpoints to monitor progress
6
That people at end of life are provided with equipment at the time it is needed to enable them to stay in their preferred place of care and
Response times for EOLC patients to access required equipment to ensure hospital discharges are not delayed
Baseline to be established
Targets to be established
7
That services are adequately resourced and provided in a timely manner 24/7 for people at end of life and their carers
Identify gaps in the provision of 24/7 EOL care services
Current services are provided by KCHFT, IC24, Hospices, Crossroads Care Kent
Identify gaps in services and commission appropriate additional services by end 2017
8
That people at end of life have access to EOL medication when needed enabling them to have pain and symptom free death
Identify gaps in the provision of 24/7 EOL care medications and pharmacy services
Current services are provided by KCHFT and community pharmacy
Identify gaps in service and commission appropriate additional services by end 2017
9
That all care staff across health and social care have the skills and knowledge to care effectively for people at end of life
Increase percentage of staff in all settings who are skilled in needs assessment, care planning and Advance Care Planning
Baseline to be established
Targets to be established
2. Carry out annual audits of Advance Care Plans
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11. End of Life Model of Care The end of life model of care for West Kent will be multi-faceted and will address all of the needs of people and their families as they journey through the last year of life. The role of each component of the model is described below.
•
GP The GP is the key medical professional in the provision of end of life care for people in the community. The GP will be a key contact for people and their families throughout the patient’s illness working in collaboration with other healthcare professionals to provide support and advice in the management of symptoms and treatment options. The GP will work collaboratively with all members of the circle of care providing a seamless, integrated service.
•
Electronic End of Life Care Information System The electronic end of life care information system records the end of life preferences for people who are nearing end of life. EOLC professionals will work with people and their families to determine these preferences and gain consent to add this information to the Page 24 of 28
care register. The use of Advance Care Plans ensures that these decisions and any needs identified are shared appropriately to help coordinate and provide the best care possible throughout the people journey. •
Single Point of Access and Coordination Centre A clinically led service made up of specialist palliative care nurses and community general nurses with knowledge and skills in palliative care who are able to expertly triage people, offering advice and support when appropriate and plan individual care packages, including access to equipment and referring to appropriate providers. Administrative support will be crucial to the efficient running of the service. The centre will maintain the electronic End of Life Care information system which will be accessible by healthcare professionals, people and carers.
•
Rapid Response Service This is a multi-disciplinary team comprising nurses, physiotherapists, occupational therapists and therapy assistants who work to reduce hospital admissions and to help with early hospital discharge. The Rapid Response part of the team aims to assess patients in their own homes within two hours of referral. The service also includes rehabilitation following surgery or falls with a focus on promoting independence and promotion of a healthier lifestyle. There is also an out-of-hours element to the work which provides support for people in their own homes outside office hours. In West Kent, the service operates a Home Treatment Service that runs seven-days-aweek, 24-hours-a-day that brings together a community team including geriatricians, senior nurses and therapists. The team assess and treat patients in their own home within two hours of referral and provide urgent care for up to seven days to people in crisis.
•
Specialist Palliative Care People approaching the end of life that may benefit from specialist palliative care are offered this care in a timely way appropriate to their needs and preferences, at any time of day or night. Specialist palliative care encompasses hospice care (including inpatient hospice, day hospice, and hospice at home) as well as a range of other specialist advice, support and care such as that provided by hospital palliative care teams. Specialist palliative care should be available on the basis of need, not diagnosis, the deciding factor often being for people whose symptoms cannot be managed in a timely way by their usual care team.
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•
Hospice Specialist services are provided by the hospices who also provide a type and philosophy of care that focuses on the physical, emotional and spiritual care of people with lifelimiting illness regardless of diagnosis. Care should be offered as either inpatient or day care and will include services able to support individuals complex needs as well as incorporating complementary therapies, chaplaincy, rehabilitation, counselling, welfare and benefits advice, art and music therapy and bereavement support.
•
Improving Access to Psychological Therapies (IAPT) Psychological support encompasses general emotional support and empowerment as well as specialist psychological care. Specific psychological needs are more likely to require psychological interventions beyond the general emotional support that most people will need. Psychological interventions may include, but are not limited to, cognitive behavioural therapy, social skills training, work with phobias and confidence issues, and medication to ease psychological distress, including anxiety and depression.
•
Ambulance Services and transport providers The CCG will commission transport providers to ensure a high standard of care for the transfer of people going home from hospital to die and will ensure that ambulance or transport staff are aware of the needs and wishes of the person they are transporting by enabling access to CPMS and the relevant care records so that the care they provide is appropriate. The CCG will ensure that all transport providers have in place policies for handling transport of carers, where they wish to accompany the patient. The CCG will also ensure that rapid access to transport from hospital to the patient’s preferred place of care and transport for community providers, including hospices will be provided and audited.
•
Community providers Qualified district nurses - ‘specialist community practitioners in home nursing' - will have an appropriate level of education in palliative care. Social workers, occupational therapists, physiotherapists and other therapists will also have skills in palliative care. All end of life care people should be known to these teams to ensure access to relevant care.
•
Acute Providers Staff across all disciplines must have the skills to identify people approaching their end of life and an awareness of their needs with the appropriate implementation of end of life care. Staff must have the skills to begin the advance care planning approach and communicate this with other care providers. There should be processes in place to Page 26 of 28
identify where advance care plans are already in place and fast tracking discharge where appropriate to achieve the patient’s preferences. •
Social Care Services Social Care Services can play a vital role in improving people’s experiences of dying, for example through access to domiciliary care services, acting as an intermediary with other services and facilitating the making and upholding of individual choices. In addition, social care can provide a range of support services for carers.
•
Voluntary Sector The voluntary sector play an important role in providing help and support to people approaching their end of of life and their carers. Services such as information, respite care at home, befriending, assistance with transport, group support and much more.
•
Care after death, bereavement support People closely affected by a death should be able to access all support, including bereavement support, within an appropriate physical environment that facilitates sensitive communication11. Families and friends (including other residents and people), carers (including health and social care providers) of people who have died should have access to information and support appropriate to their circumstances. Children may need particular tailored support.
11
End of Life Care; Quality Standards (NICE 2011)
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Appendix 1: End of life Care Pathway – DH EOLC 2008
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