New JSNA: This is the test site for the new Joint Strategic Needs Assessment

End of Life

Introduction

Over 450,000 people die each year in England and two thirds of these will be over 75 years (Dying Matters, 2013). Death occurs in a wide variety of settings from hospitals, care homes and hospices to the home. Many people will be transferred several times between these different settings in their final year. Subsequently, being responsive to their individual needs and preferences is an enormous challenge.

What do we know?

The National End of Life Care Intelligence Network (NEoLCIN) collects analyses and presents end of life care intelligence from a wide variety of sources. In 2014 a report was published to summarise the key findings of the network and its partners over the last year. Although much of the research has been published previously, this is the first time it has been brought together in one place.

Key findings from the report are summarised below;

  • The proportion of people dying at home or in care homes continues to increase
  • Patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference
  • Two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed
  • Factors most important to people at the end of their life were; having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity
  • More GPs are having conversations with people about their end of life care wishes but 25% still say they have never initiated such a conversation

Facts, Figures, Trends

Data from the National End of Life Care Intelligence Network for England 2014/15 identified 470,541 deaths registered as EOL of which 47% (222,076) died in a hospital setting and 45% in their usual place of residence. Usual place of residence includes a care home and the percentage split between home and care home is equal.

For Berkshire West there were 3297 deaths (all diagnosis) registered as EOL of which 48% died in a hospital setting and 45% in their usual place of residence (home 24% and care home 21%) reflecting the national picture.

Please refer to other sections of the JSNA which show population characteristics and the prevalence of life limiting conditions in the local area. These will include sections on Chronic Kidney disease, cancer, population, and Long Term Neurological Conditions.

Currently the data from the National End of Life Profiles has been recently updated at a Clinical Commissioning (CCG) level. The JSNA will be updated with Local Authority data when this becomes available. The postcode of usual place of residence was used to place each individual in an area by CCG and data relates to all deaths in England registered between 2010 and 2012 (inclusive).

Table 1: Place of Death 2010-12: NHS North and West Reading CCG

Place of death

Value

ll

ul

number

significance

national

Hospital

48.0

44.4

51.6

349

none

49.31

Home

24.2

21.2

27.4

176

none

22.16

Care home

17.6

15.0

20.5

128

low

20.74

Hospice

7.4

5.7

9.5

54

high

5.65

Other places

2.8

1.9

4.3

21

none

2.14

Table number 2: Place of Death 2010-12: NHS North and West South Reading CCG

Place of death

Value

ll

ul

number

significance

national

Hospital

51.7

48.0

55.5

351

none

49.31

Home

23.8

20.8

27.2

162

none

22.16

Care home

16.5

13.9

19.5

112

low

20.74

Hospice

5.0

3.6

6.9

34

none

5.65

Other places

2.9

1.9

4.4

20

none

2.14

Source: National End of Life Profiles (Public Health England)

National & Local Strategies (Current best practices)

The King's Fund note that the place where people die has changed over the past century with most deaths occurring in hospital and not at home. In 1900 approximately 85% of people died in their own homes, by the mid twentieth century this decreased to around 50% and in the early twenty-first century acute hospitals have become the most common place of death.

The NHS Berkshire End of Life Strategy was published in 2009. It should result in more deaths taking place within the usual place of residence and it includes the implementation of and ongoing utilisation of the Advanced Care Planning and Gold Standards Framework for the dying patient within primary, secondary and third sector organisations. It is intrinsically complex to predict those people who may be in their last year of life.

  • There are a range of generalist and specialist palliative care services, provided by health and social care organisations and the voluntary sector that support patients and their families as they approach the terminal phase of their life limiting illness.
  • The contact people have with services during the palliative stage of someone's illness can be very infrequent depending on the nature and progressiveness of the disease/condition.
  • There are a number of best practice tools and resources that are used to support the implementation of the Department of Health's End of Life Care Strategy
    • Gold Standards Framework (GSF) is a framework of multiple tools, tasks and resources that can be adapted within GP practices and community nursing teams and care homes to improve end of life care for patients with end stage illness.
    • Advanced Care Plans (ACP) is a document that individuals hold and take with them. They can be used to detail the individuals' thoughts about their care and the choices they would like to make (consider simplifying sentence). Individuals can initiate the ACP at any time, enabling any care staff to read about what matters to the individual, thereby facilitating continuity of care.
    • The integration of the tools above, supported by well developed infrastructure, gives optimum best practice in end of life care.
    • Advanced directives are legal documents, such as the living will, that will allow people to convey their decisions about end-of-life care ahead of time. They provide a way for patients to communicate their wishes to family, friends, and health care professionals.

Holistic Services

The Reading Health  and Wellbeing Board has agreed for a Reading locality steering group to be set up, to look at how this important area of work can be communicated; to map local services within nationally recognised frameworks, namely; Gold Standard Framework, Ambitions for Palliative and End of Life Care http://endoflifecareambitions.org.uk/

This service includes adults, children and stillborn babies.

The project is reviewing practical, spiritual and voluntary agency support available to the patient, next of kin and carers throughout the end of life journey to compliment the medical model. This is to ensure organisations are aware of each other's services and effective communication links are in place. There are representatives from health, social care, funeral provider, mortuary, cemetery, voluntary, nursing home, carer, spiritual and public engagement working together to improve service delivery and socialise the end of life conversation.

The key messages are:

  • Break the Taboo: Encourage people to think ahead, share their preferences and talk openly about all aspects of dying.
  • Achieve a 'Good' Death: Take a person-centred approach with the individual's priorities guiding all decisions and actions.
  • A Holistic Approach: Provide care through integrated working, with professional collaboration to ensure timely, seamless support through a single point of contact.
  • Clear Communication: Take account of the circumstances, needs and abilities of the person and their carers, with clear and sensitive communication.
  • Support for All: Value and understand everyone's role, contribution and feelings, including support in bereavement.

Berkshire West End of Life Project (Medical Model)

The End of Life (EOL) project seeks to meet the Ambitions for Palliative and End of Life Care: A National Framework for Local action 2015-2020 published by the National Palliative and End of Life Care Partnership. The project will ensure that patients who have been diagnosed as at end of life will be able to have the choice to be cared for and subsequently die in their preferred place. In doing so avoid unnecessary admissions to hospital for care that can and should be provided in their home of if preferred a hospice setting.

The vision draws upon the wishes of those with experience and seeks to ensure a personalised experience of life that is as good as possible (consider simplifying sentence). The delivery of this vision and achieving the 6 ambitions is based on 8 foundations that underpin and are required to bring about improvement:

  • Personalised care planning - the opportunity for individuals to create their own individualised car plan, that expresses their preferences and set personal goals for the time they have left
  • Shared records - ensuring the plan can guide a person centred approach, it is available to that person and can be reviewed and changed
  • Evidence and information - the collection of national data that will inform judgements about the quality and accessibility of services, and support quality improvements.
  • Involving, supporting and caring for those important to the dying person - providing care and support to families, friends, carers and all those who are important to the dying person
  • Education and training - ensuring every professional working with end of life care patients, across the health and social care economy, is competent and up to date in the knowledge and practice that enable them to pay their part in good end of life care.
  • 24/7 access - every person at end of life should have access to 24/7 service as needed as a matter of course
  • Co-design - the design of end of life care is best delivered in collaboration with people and professional who have experience of palliative and end of life care.
  • Leadership -creating the circumstances in which action can be taken across the boundaries of CCG and Local authorities

End of Life Hub

In the delivery of the End of Life Medical model, this service will be based at Wokingham Health Hub. The palliative care specialist nursing team will be managed by Sue Ryder, Palliative Care Team. The Hub is forecast to be operational by July 2016.

The aims of the 24/7 specialist palliative care service is to:-

  • Support the whole community including care homes and other residential care facilities enabling equitable access.
  • Deliver a service that is flexible and responsive to the needs of the patient, their families and carers.
  • Provide face to face specialist palliative care assessment at the right time in the patient journey, including weekends and bank holidays.
  • Provide care in line with the patient's choices and preferences that will support patients, their families and carers to achieve the best quality of life.
  • Provide support for colleagues through expert advice and joint patient visits where necessary.
  • Reduce avoidable and inappropriate emergency attendances and admissions for palliative and end of life patients, through the delivery of good quality care in the community setting including timely symptom management.
  • Promote care in their usual place of residence as an alternative for end of life patients through supporting patient discharge from hospital, including rapid discharge.
  • Support the delivery of the training and education programme for end of life care.

One of the main components of care for any patient with palliative care needs is pain control. Presently any patient in Berkshire West who requires an adjustment to their prescription most often during a time critical event and often Out of Hours would require a community practitioner to obtain the prescription from a GP or Out of Hours Doctor and then obtain the drugs from the nearest pharmacy service. During which time the patients' pain remains uncontrolled.

Improving anticipatory interventions as part of this project will enhance the quality of patient care community practitioners are able to deliver supporting timely symptom management, reducing likelihood of unnecessary crises leading to unscheduled hospital admissions. The provision of an anticipatory 'Just in Case' medications bag will facilitate practitioners to deal with sudden deterioration in symptom control, ensuring common palliative symptoms are anticipated and appropriate medications are available in the patient's home (including care/nursing homes) for Community Practitioners to immediately manage the patient's condition. The provision of a 'Just in Case Bag' will improve the level of care they can receive and support them to die in the place of their choice (their usual place of residence).

The End of Life Care Hub will link directly with the appropriate support agency removing the requirement for patients to make multiple phone calls and using the expertise of the clinical staff to avoid unnecessary admission to hospital and improve quality of care. The provision of such a service appears key to enabling patients and their carers to achieve the end of life care they desire.

There are also national learning modules as below provided by e-learning for Healthcare.  e-ELCA website: http://www.e-lfh.org.uk/programmes/end-of-life-care. These are aimed at health and social care workforces and are available to health sector and to social care providers who have undertaken the National Minimum Data Set for Social Care.  There are over 150 sessions grouped into 8 modules plus there are learning pathways for staff groups, as shown below, to aid navigation. They have been mapped to the learning objectives of the 'One Chance to Get it Right' report of the Leadership Alliance for Care of the Dying Person in 2014. A new training needs analysis session will help you identify your strengths and weaknesses and direct you to e-ELCA sessions to support your development: http://portal.e-lfh.org.uk/Component/Details/404448

  • Doctors
  • Nurses
  • Allied health professionals
  • Social care managers
  • Social care workers
  • Healthcare managers
  • Healthcare administrators

In addition there is the suite of 13 open access introductory learning modules available at www.endoflifecareforall.com These sessions have been selected with volunteer and administrative staff in mind. 

Current local services include:

  • Out of Hours nursing team
  • Westcall - Out of Hours GP service
  • RBC Night warden service
  • Reading Intermediate Care services including therapy and social care
  • Duchess of Kent - now run by Sue Ryder
  • Macmillan Care
  • Marie Curie

Unmet needs and service gaps:

People entering the last stage of their life are often supported by different professionals across a variety of different settings and communication is important to ensure their care is optimised. In many cases the systems used are unable to "talk to one another". The End Of Life Care Hub Service will address this communication gap by being the hub in this wheel.

References:

National Council for Palliative Care (2013): Dying Matters

Public Health England's National End of Life Care Intelligence Network (NEoLCIN) (2014/15) http://www.endoflifecare-intelligence.org.uk/home

Vernon. M (2013) Improving End of Life Care for Older People.

Department of Health (2008): End of Life Care Strategy: Fourth Annual Report: Department of Health

Ambitions for Palliative and End of Life Care: http://endoflifecareambitions.org.uk/

The e-learning programme End of Life Care for All (e-ELCA): http://www.e-lfh.org.uk/programmes/end-of-life-care

Leadership Alliance for the Care of Dying People (2014): One Chance to Get It Right Department of Health.

NICE (2004): Improving supportive and palliative care for adults with cancer: Guidance CSG4. National Institute for Clinical Governance

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