End of life care

Introduction

The national End of Life Strategy recognises that given the opportunity and right support, most people would prefer to die at home. In practice, only a minority manage to do so. Many people die in an acute hospital, which is not their preferred place of care.

In addition, as people nearing end of life frequently need care from multiple professionals and services involving transfers between locations (home, hospital, care home, hospice, etc.), the coordination of care is often poor.

Being responsive to a person’s individual needs and preferences is an enormous challenge and as a result of problems and deficiencies in provision and practice, many people experience unnecessary physical, psychological and spiritual suffering and do not live out their final days in the place of their choice. Poor endings can also influence the way family and friends cope during bereavement.

Key inequalities and risk factors

Of the 450,000 people die each year in England, two thirds of these will be over 75 years (Dying Matters, 2013)

The Equaility Impact Assessment to the national strategy suggests the following potential inequalities that care professionals should consider in supporting different people with their end of life care:

• age – some studies suggest that older people are less likely to receive end of life care, older people were shown to be more likely to die in hospital and nursing homes and less likely to die at home or in  a hospice
• learning disability – people with a learning disability:
  • may find it hard to communicate or to understand what is being told to them, this may lead to people enduring pain for longer than they need to or missing medication because they have misunderstood how to take it
  • receive fewer screening tests and fewer health investigations which lead to poor understanding of the individuals care needs
  • particular presentations may be misinterpreted as a feature of someone’s learning disability leading to misdiagnosis or no diagnosis at all
• religion or belief – religion, culture and language which mean that closer attention needs to be paid in order to be able to fully meet their needs, this extends further to families and communities where rituals and traditions become more important in advanced illness and at death
• sexual orientation – same sex partners may not have declared their status, with the consequence that professionals may exclude them from involvement in their partner’s care
• gender – women are less likely to die at home than men and men are generally less efficient as carers (which is possibly the reason that fewer women die at home)
• homelessness – people who have experienced long-term homelessness (particularly rough sleeping) tend to die younger, whilst having the health problems of much older people and homeless people are less likely to engage with hospice based care

The National End of Life Care Programme Guidance for staff responsible for care after death (2014) has helpful approaches regarding some of these issues.

Facts, figures and trends

The prevalence of patients on GP registers in the Bracknell Forest and Ascot CCG area in receipt of palliative care in 2014/15 was 333 or 0.25% of the patient list.  This is an increase of 3 patients from 2013/14.

The mortality rate in Bracknell Forest is set out in the chapter on life expectancy and mortality.

Place of death

Research from Dying Matters found that around 70% of people want to die at home, yet more than half of the 450,000 people who die each year in England do so in hospital.

Office for National Statistics data published in 2016 shows deaths in hospitals between 2004-2014 has fallen over the last decade whilst deaths at home and in care homes has increased.

Death in Usual Place of Residence

A key measure of the national strategy is to ensure people are able to die in their usual place of residence.  This is measured in the Public Health England, End of Life Care Profile for the borough:

Between 2004 and 2015, an increasing proportion of older people in Bracknell Forest aged 65+ died in their usual place of residence (DiUPR). Records show that death in the place of usual residence increased with age in 2015:

In all instances, the figures are comparable to the England figures.

Early interventions

The national strategy seeks to increase public awareness to address issues around death and dying, to encourage patients, their carer’s and families to discuss their preferences and choices regarding treatment and place of death in advance.

Good preparation also applies to care professionals and the Dying Matters campaign “Find your 1%” is targetted at GPs to identify 1% of patients who are entering their last year of life.

To help GPs, the campaign sets out some statistical likelihoods and the Gold Standard Framework prognostic tool helps identify a series of frailties and declining health, e.g. poor self-care, breathlessness, weight loss, persistent presentation of recurring infections and pressure ulcers.

The campaign also encourages and supports GPs to use their intuition and ask “Would I be surprised if this person were to die in the next 12 months?” in order that:

• the person and their carers have time to deal with the news and realign their priorities
• the person is less likely to be subject to treatments of limited clinical value
• appropriate end of life care can be planned rather than dealt with by a series of crises
• an asset-based approach of co-ordinated and well-organised community support can halve the cost of hospital admission

An anticipatory approach also needs education and training programmes for staff in health and social care settings so that they are able to recognise when people are approaching end of life and are confident to initiate discussions about their preferences and choices of care with individuals and the professionals that support them.

Want to know more?

Care of dying adults in the last days of life (NICE, 2015) – guidelines for the commissioning and delivery of services supporting individuals in the last days of life, aimed at health and social care professionals in primary care, care homes, hospices, hospitals and community care settings such as people’s own homes.

Choice in end of life care (Department of Health, 2016) – the 6 commitments the government has made to the public to end variation in end of life care across the health system by 2020.

End of Life Care (NHS Choices – accessed 13 June 2016) – a guide for people who are approaching the end of their life, for people who are caring for someone who is dying, or people who want to plan in advance for their end of life care.

End of life care for adults (NICE, 2010 updated 2013) – quality standard for end of life care in all settings and services where care is provided by health and social care staff to all adults approaching the end of life.  Amended following withdrawal of Liverpool Care Pathway in October 2013.

End of Life Strategy (Department of Health, 2008) – sets out the case for increasing the number of deaths taking place within the usual place of residence.  It includes the implementation and ongoing utilisation of the Advanced Care Planning and Gold Standards Framework for the dying patient within primary, secondary and third sector organisations.  It should be noted that the Liverpool Care pathway (LCP) was phased out by government in 2013 and replaced by  individual end of life care plans.

• 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 can be used to detail the individuals hold and take with which can be used to detail the individuals thoughts about their care and the choices they would like to make. This enables any care staff to read about what matters to the individual, thereby facilitating continuity of 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

This page was created on 27 February 2014 and updated in August 2017. Next review date August 2018.

Cite this page:

Bracknell Forest Council. (2016). JSNA – End of life care. Available at: http://jsna.bracknell-forest.gov.uk/ageing-well/keeping-well/end-life-care (Accessed: dd Mmmm yyyy)

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