End of Life Care

Ambitions for Palliative and End of Life Care

A new approach to End of life Care. A new approach to End of life Care services

• End of life rarely suddenly happens, more commonly there is a trajectory from living well with illness to a focus on dying well
• Care is holistic from time of diagnosis and services integrated and coordinated
• Access to end of life services can increase, dependent on the needs of the patient and those important to them.
• Bereavement is an essential part of end of life care

There is an opportunity to plan for all non curable illnesses and for all people.

Ambitions for Palliative and End of Life Care

Choice Review

• The report, What’s important to me: A review of Choice in End of Life Care calls for a new ‘national choice offer in end of life care’ to be established.
• It calls for everyone to be offered choice in their end of life care, and for these choices and preferences to be recorded in their own personal plan of care.
• For 24/7 end of life care for people being cared for outside hospital to be in place across England by 2019
• For everyone in need of end of life care should have a named senior clinician responsible for their care and preferences and their own care coordinator.
• For a clear policy to make access to social care for people at the end of life fast and free
• For more honest and open communication about end of life issues, with better support for health and care professionals and increased awareness raising amongst the public.
• The Government response to the Choice Review
• Modelling the options of choice 

Personalised Care Planning

Everybody approaching the end of their life should be offered the chance to create a personalised care plan. Opportunities for informal discussion and planning should be universal. Such conversations must be ongoing with options regularly reviewed. Access the End of Life Care Ambitions website here.

Every year approximately half a million people die in England. This is expected to rise by 17% by 2030, with a significant increase in the proportion who are aged over 85 years. For at least three quarters of these deaths it is not sudden but is expected, providing opportunity to plan. (Actions for End of Life Care: 2014-16, NHS England)

A recent ComRes public opinion survey showed that only 7% of British adults had written down their wishes or preferences about their future care, should they be unable to make decisions for themselves

Evidence of Best Practice

The Parliamentary and Healthcare Ombudsman report in 2015 found many of the cases reviewed included a failure to link the person’s needs with the services being provided. This was especially true of cases where care was provided in more than one setting or by a combination of providers in the community and/or hospitals. These cases showed people tending to have a poorer experience than they should have at the end of their lives. In particular, the person’s wishes are not always taken into account. This, as well as a lack of resources for community palliative care, can also mean that people often do not die where they want to.

In “A different ending: Addressing inequalities in end of life care” there is a raft of good practice highlighting  what constitutes outstanding care planning for those nearing or at the end of life

Education & 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 competence and allow expertise and professionalism to flourish.  Access the End of Life Care Ambitions website here

Health Education England recognises that end of life care is everybody’s business and as such the generalist and specialist workforce need to be trained and supported accordingly. Access to relevant end of life care training enables patients to receive high quality end of life care and to be supported in achieving their individual wishes and preferences of care

There is little evidence across Thames Valley, or within localities, that comprehensive Training Needs Analyses are being undertaken. National policy and research demonstrate the need for comprehensive education & training:

• Advanced Communication Skills and Sage and Thyme training have nationally been recognised as good models of communication skills training. http://www.sageandthymetraining.org.uk/evidence-and-links
• A Cochrane Review (2015) found that Communication Skills training is effective and has positive patient outcomes: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003751.pub3/pdf, http://pmjbeta.bmj.com/content/92/1090/466
• A literature review, conducted into Dementia awareness training which is applicable to end of life care education, found that a minimum of half a day of training was needed to change practice: http://www.leedsbeckett.ac.uk/pages/what-works/

Health Education England note that most localities have access to Sage and Thyme communications courses, and all have access to Advanced Communication Skills courses, funded by HEE TV.

National Care  of the Dying Audit of Hospitals (2016) undertake training audits across all acute units (including in-house) highlighted the following for our region

Good practice across the region

• Berkshire CQUIN – the community provider is supporting the identification of patients in the last year of life. Community staff  are receiving training from Hospice Consultants to support prognostication
• Buckinghamshire Directed Enhanced Service plus (DES+) scheme
• West Berkshire CES requires 1 GP per practice must evidence attendance at relevant training and dissemination within practice
• TVSCN delivering End of Life Care workshops supported by Health Education England
• Sage & Thyme courses are delivered across Oxford & Berkshire. These courses are accessible to all health and social care providers including care homes.
• Joint working with further education colleges to deliver QCF qualification in EoLC for non-registered staff
• OUHFT, in conjunction with Sobell House Hospice, delivering EoLC induction workshops for hospital Health Care Assistants
  

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  Impact on training programmes for staff

Resources for Education & Training

Much specific End of Life Care training is delivered through ad hoc, locally developed sessions, predominantly delivered by specialist palliative care services. These training days need to be supported by CCGs.
Thames Valley Strategic Clinical Network & Health Education England Thames Valley will provide 5 half-day workshops on End of Life Care 2016/2017, open to all clinicians.

Hospices providing courses and study days open to all:

• Sobell House, Oxford http://sobelleducation.org.uk/
• Sue Ryder, Nettlebed & Reading http://www.sueryder.org/how-we-help/education-and-training
• Rennie Grove http://www.renniegrove.org/healthcare-professionals/education-programme
• Willen Hospice http://www.willen-hospice.org.uk/how-we-care/For-Clinicians/learn-with-us
• St Christophers Hospice, Sydenham http://www.stchristophers.org.uk/education/

Other Courses available

• Macmillan Cancer Support: http://learnzone.org.uk/ NB: some courses are only available to Macmillan Professionals.
• National e-learning (eELCA) http://www.e-lfh.org.uk/programmes/end-of-life-care/

Specialist Palliative Care Workforce

• Training and development of the specialist Palliative workforce in Medical, Nursing and Allied health is supported by courses delivered via Higher Education Institutions and the Medical Deanery. PG Cert and Masters courses are provided by Oxford Brookes University, Coventry University and University of West London.

Further opportunities

• HEE have commissioned NCPC to review the Skills and Competency Framework for EoLC (report due Spring 2017)
• Deciding Right App: A north-east initiative for making care decisions in advance. http://www.nescn.nhs.uk/common-themes/deciding-right/

Evidence & 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 to drive service improvements. Access the End of Life Care Ambitions website here. 

It is appreciated that there is paucity of local data and the amount of national evidence available for End of Life care is also limited. Because of the lack of local data, CCGs should make arrangements to collect data that they consider necessary to be assured that patients are receiving a quality end of life service from its providers.

Tools to build the evidence base

EOL National Hospital audit 2016 – Nearly half of all deaths in England occur in hospitals – 223007 out of a total of 469975 in 2014. For this reason, trust boards, managers and clinicians should recognise that a core responsibility of hospitals is to deliver high-quality care for patients in their final days of life and appropriate support to their families, carers and those close to them. Government policy in recent years has reinforced this requirement.

The importance of good end of life care cannot be overestimated. In the majority of cases, people receive end of life care that is caring and compassionate – but people from certain groups in society may experience poorer quality care because providers and commissioners do not always understand or fully consider their specific needs

https://www.rcplondon.ac.uk/projects/outputs/end-life-care-audit-dying-hospital-national-report-england-2016

A different ending: End of life care review -The importance of good end of life care cannot be overestimated. In the majority of cases, people receive end of life care that is caring and compassionate – but people from certain groups in society may experience poorer quality care because providers and commissioners do not always understand or fully consider their specific needs. Following the recommendation of more care, less pathway, the independent review of the Liverpool Care Pathway, CQC looked at ‘how dying patients are treated across various settings’. In particular, they focused on people who may be less likely to receive the good end of life care that they need.

http://www.cqc.org.uk/content/different-ending-end-life-care-review

National End of Life Intelligence Network This updated toolkit has a range of practical resources to support those involved in commissioning for person centred end of life care. It was revised in response to requests from commissioners and providers with many examples generously shared by colleagues around the country. Insight data from desktop research using for example, findings from the National Survey of Bereaved People (VOICES), accounts from people in care homes distilled from Care Quality Commission (CQC) reports, as well working through our partner organisations to access the views and opinions of people with life limiting conditions and carers with experience of end of life care, have been woven into the fabric of this toolkit. http://www.nhsiq.nhs.uk/improvement-programmes/long-term-conditions-and-integrated-care/end-of-life-care.aspx  http://www.endoflifecare-intelligence.org.uk/resources/tools/

VOICES SURVEY The National Survey of Bereaved People (VOICES, Views of Informal Carers – Evaluation of Services) collects information on bereaved people’s views on the quality of care provided to a friend or relative in the last 3 months of life, for England. The survey has now been run for 5 years and was commissioned by the Department of Health in 2011 and 2012, and NHS England from 2013. It is administered by the Office for National Statistics (ONS).

http://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/
nationalsurveyofbereavedpeoplevoices/england2015

National Voices This is the fourth of National Voices’ narratives on person- centred coordinated care. This narrative has been jointly published by National Voices and the National Council for Palliative Care. The narrative describes some critical outcomes and success factors in end of life care, support and treatment, from the perspective of the people who need that care, and their carers and families. http://www.nationalvoices.org.uk/pages/every-moment-counts-narrative-person-centred-coordinated-care-people-near-end-life

Living and dying with dementia in England: Barriers to care – Patients with dementia do not always receive a good level of care as the Marie Curie report suggests. It states that over the coming decades, the number of older people living in the UK is likely to rise considerably. By 2030, the proportion of the UK aged over 85 is set to double and as a result we are likely to see a significant increase in the number of people living and dying with dementia. To date much of the focus has been on living well with dementia, with little focus on the experiences of people with dementia nearing the end of their lives. For too long, the dying phase of dementia has been the forgotten aspect of what has been referred to as a ‘silent epidemic’.

http://www2.mariecurie.org.uk/Documents/policy/dementia-report-executive-summary.pdf

EOL National Hospital audit 2015 It has been designed to ensure that the priorities for care of the dying person outlined in the document One Chance to Get it Right are monitored at a national level. National audit data will support end of life care commissioners, service providers and policymakers to audit the care and to facilitate quality improvement initiatives. The audit highlighted variation across trusts, need for workforce training and the variability and poor access to 24/ 7 specialist palliative care

https://www.rcplondon.ac.uk/projects/end-life-care-audit-dying-hospital

A review of choice in end of life care End of life care has made great strides forward in recent years, in particular following the publication of the End of Life Care Strategy in 2008. However, we know that too many people still do not receive good quality care which meets their individual needs and wishes. For example, only just over half of respondents to the National Survey of Bereaved People (VOICESSF) felt that their relative had died in a place of their choice.  At the same time the challenge of delivering consistently good experiences and outcomes for people at the end of their lives is growing. Each year, around 480,000 people die in England. This is predicted to increase to 550,000 by 2035.

https://www.gov.uk/government/publications/choice-in-end-of-life-care

End of Life Care rating maps – The data shown in these maps is from CQC inspections published up to 25 April 2016, for acute hospitals, community hospitals and independent hospices, respectively.

http://www.cqc.org.uk/content/end-life-care-ratings-maps

Other useful links

• End of Life Care profiles http://fingertips.phe.org.uk/profile/end-of-life/data#page
• National End of Life Care intelligence Network http://www.endoflifecare-intelligence.org.uk/home
• Specialist Level Palliative Care: Information for Commissioners https://www.england.nhs.uk/resources/resources-for-ccgs/#palliative

Nice Guidance for end of life care – https://www.nice.org.uk/guidance/ng31

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. Access the End of Life Care Ambitions website here

Evidence

Patients who are at end of life and their carers /families don’t feel listened to 

Significant variation in care and patient/carer experience demonstrated by National Voices

Patients and their families/carers don’t feel they are given choice at end of life

Significant Inequalities in end of life care dependent on diagnosis, deprivation, learning disabled, dementia

Learning from good practice across the patch

• Berkshire West CCG Federation –locality steering group including patient and carer representation  are currently developing 24/7 helpline and “Just in Case” medicines
• Reading Borough Council End of Life working Group –Public Awareness Campaign and Workshop with the public took place in June 2016
• Sonning Common GP Practice Matters of Life and Death Workshop –this Berkshire Practice ran a successful workshop for the public in May 2016 attended by over 100 people –they plan to run more over the coming year.
• Finity –www.finity.org.uk A Buckinghamshire based constituted community voluntary organisation running workshops for the public who want to think and talk about death and dying
• EOLC – co-design model

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. Access the End of Life Care Ambitions website here

All electronic systems for sharing health related preferences must encompass the recording and sharing of preferences at the end of life. The widespread use of electronic systems should be encouraged across health and social care providers in the statutory, voluntary and private sector – stakeholders should include;

A vital part of an electronic sharing system is the adoption of an integrated electronic palliative care record to support achievement of preferred place of death (82% of those who recorded their preference achieved this). In 2013 the implementation of electronic palliative care records stood at:

www.endoflifecare-intelligence.org.uk

http://www.endoflifecare-intelligence.org.uk/national_information_standard/end_of_life_care_coordination/information_standard_requirements

There are examples where the implementation of EPaCCs has been a qualified success. In London, “Co-ordinate my Care” (CMC) has had great success as the outcomes highlight

Further information on EPaCCs can be found at the NHS Improvement website 

Learning from our colleagues

As developments are ongoing within local CCG boundaries around shared data, the need to widen data sharing to include other partners pan-Thames Valley & Milton Keynes such as NHS 111, SCAS etc is required. Any planning or operational developments should incorporate wider regional shared data requirements.

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’. Access the End of Life Care Ambitions website here

Evidence for 24/7

•  24/7 care is recognised as a cornerstone of palliative and end of life care best practice and vital to enabling people to die at home if they wish to do so.
• The NICE quality standard for end of life care includes the need for provision of 24/7 holistic support, co-ordinated care, urgent care and access to specialist palliative care.

The Ombudsman review ‘ Dying without dignity’ highlighted that ‘People who are dying and their carers suffer because of the difficulties in getting palliative care outside normal working hours;

“We also considered several cases where people who were dying had extremely poor experiences in getting support outside normal working hours. This can be because emergency medical services are often under pressure out of hours, and many specialist palliative care services are not able to provide round-the-clock availability.”

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. Access the End of Life Care Ambitions website here

Evidence

• Good palliative and end of life care includes giving care and support to families, friends, carers and all those who are important to the dying person.
• This must encompass good bereavement and pre-bereavement care, including for children and young people.
• It must also respond to the needs of those who are affected by death caused by sudden illness or trauma, including suicide.

End of life care is a recurring theme in the Ombudsman’s Casework. (“Dying without Dignity”). Key themes around poor recognition of dying and care planning, communication, symptom management feature repeatedly in the 12 case studies. With right care and treatment, peoples’ suffering can be avoided or lessened, as can the anguish their relatives and carers experience subsequently.’

The national survey of bereaved relatives provides important insight into the consideration services give to their needs alongside the care given across all care settings to  the patient. This is a valuable national resource providing information about the support given to those important to the patient.

For example, only just over half of respondents to the National Survey of Bereaved People (VOICESSF) felt that their relative had died in a place of their choice.  National Survey of Bereaved People (VOICES): England, 2015

High quality end of life care is possible

Leadership

The leadership of Health and Wellbeing Boards, CCGs and Local Authorities are needed to create the circumstances necessary for action. Clinical leadership must be at the heart of individual service providers. Access the End of Life Care Ambitions website here

Nationally, 73% of CCGs have an End of Life Strategy.  In Thames Valley we are pleased to report that 100% of our CCGs have an End of life strategy, either in place or being refreshed.  This is a testament to the end of life leadership locally, both in CCGs and in the SCN.

For Health and Wellbeing Boards, TV is in a similar position as our counterparts nationally with only about half including the needs of dying adults and children in their key strategies.  The data from 2014 is below:
Those Health and Wellbeing boards where green show have a specific mention of End of Life and how it fits into the overall strategy. Where the colour is Orange it means that the strategy considers related issues or groups (e.g. supporting older people), but not end of life care directly. Finally, Red indicates that there is no specific mention of End of Life Care in the published strategy. Where it is indicated as unpublished it means that no strategy is available in the public domain.

Learning from Local Best Practice.

• Reading Borough Council and the Berkshire West CCGs in the locality are committed to End of Life Care and have a comprehensive webpage setting out their work programme and objectives