End of life care

End of life care

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. It is important to ensure individuals have choice and are involved in decisions around their care in the last stages of life.

The government has made 6 commitments to the public to end variation in end of life care across the health system by 2020.
  • Honest discussions between care professionals and dying people

  • Dying people making informed choices about their care

  • Personalized care plans for all which are discussed with care professionals

  • The involvement of family and carers in dying people`s care

  • A main contact so dying people know who to contact at anytime of the day

  Source: GOV.UK: 'Government commits to high quality end of life care' (July 2016)

   

General end of life care is provided by a  wide range of health and social care professionals, including GPs, community nurses, community matrons and domiciliary care workers. End of life care in the West of Berkshire has a multi-disciplinary approach undertaken by Berkshire Healthcare Foundation Trust Community Team, Royal Berkshire Hospital Palliative Care Team and Wokingham CCG This support is also provided in a wide range of settings, such as care homes, community hospitals and the patient’s home. Domiciliary care is provided by the three intermediate care services in each of the Berkshire East Local Authorities, supported by clinical staff from Berkshire East Community Health Service.

     

 Find me Help facilitated by Dying Matters gives a comprehensive UK directory for individuals and their families approaching the last stages of life.  NHS Choices has a resource outlining what to expect from end of life care, choices available, hospice care and support.

     

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.

         
Berkshire West CCG have also produced a video to support the conversations of End of Life planning and how to plan a good death.  It is called A Good Death, Molly's Story. Read 'A Good Death' - Molly's Story on the NHS website


 

In 2014, there were 73,189 deaths with a recorded mention of dementia. Nearly all if these deaths occurred in people aged 65 and over (72,504), representing 18% of all deaths in this age group.

The mortality rate of deaths with a mention of dementia have increased significantly from 106 deaths per 100,000 population in 2001 to 188 deaths per 100,000 population in 2014, this is in contrast to overall mortality rate for all causes which is falling.


 The place of death profile for people who have died with dementia is markedly different compared with the general population. For those aged 65+, the majority of deaths with a mention of dementia occurred in care homes (58%), nearly a third of deaths in hospitals and less than a tenth at home.

In contrast, in the general population aged 65+, nearly half of all deaths occurred in hospitals, a quarter in care homes and one fifth at home.


 A very small proportion of people who have died with dementia do so in hospices (1%) compared with the general population (5%)


More than a third of deaths with a recorded mention of dementia also had a recorded mention of respiratory disease (38%) or circulatory disease (36%). Due to the nature of recording on death certificates, the actual numbers of people with dementia and other comorbidities is estimated to be higher.

 

Source: PHE: National Dementia Intelligence Network and National End of Life Care Intelligence Network Briefing - August 2016

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 importance 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

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 End of life Profile for Wokingham shows no significant difference between percentage deaths by place of death across all age categories compared to other Local Authorities of the same deprivation decile.

Dying Matters state that 70% of people would like to die at home yet in 2013 22% of people in all ages died at home in Wokingham.

      On the year 2015

  •  The percentage of deaths from Wokingham Borough occurring in hospital (47.9%) is comparable to the national average (47.7%) , however the highest percentage of the age groups is for the age group 65-74 with (50.5%), this is higher than the  the national level for the same age group (48.9%)

  • The percentage of deaths from Wokingham Borough occurring at home for all ages (23.8 %) is higher than  the national average (22.6%), also the percentage of deaths occurring at home for persons over 85 ( 19.9%) is  higher than the national level 15.5%.

  • The percentage of deaths from Wokingham Borough occurring in a Care home (1.8% ) is better than  the national average (2.9%),

  • The percentage of deaths from Wokingham Borough occurring in a hospice home for all ages is (7.9 %) is higher than  the national average (5.6%)

  • The percentage of deaths from Wokingham Borough occurring in other places (1.52%) is comparable to the national average (2.16%) 

  • Source: Public Health England, End of Life Care Profile 

 Wokingham have a significantly higher percentage of deaths from the underlying cause of cancer for persons aged under 65 years (49%) than England percentage for the same underlying cause(38.%). And a significantly lower percentage of deaths from the underlying cause of circulatory diseases for people aged 75-84 as it is (22.4%) in Wokingham comparing to (28.3%) in England. 

 

In August 2016 Public Health England published an intelligence briefing, produced by the Dementia Intelligence Network, that illustrated key information related to people who have died with dementia in 2012-14. It focusses on the setting and circumstances of death for people with dementia.

 

Source: PHE: Dying with Dementia - dataset by local authority

  Dementia Alzheimer's Disease Vascular Dementia Unspecified Dementia
Wokingham 178.8 29.0 53.6 94.4
England 184.3 34.3 36.4 112.0

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”.

        

  • Promoting development of an End of Life Register in each practice and the identification of patients in their last 12 months of life.
  • Anticipatory prescribing - making sure that any drugs that are need for the last days of life are available.
  • Increasing public awareness to address issues around death and dying, to encourage patients, their carers and families to discuss their preferences and choices regarding treatment and place of death.
  • Working with our key partner and stakeholder organisations to ensure End of Life Care Tools are reviewed as per national review expected in 6-12 months. These are currently; Advanced Care Planning; Gold Standards Framework and Liverpool Care pathway for the Dying patient (which is currently in the process of review), within primary, secondary and third sector organisations/services.
  • Ensuring education and training programmes are in place for all staff so that they are able to recognise when patients are approaching end of life and are confident to initiate discussions about their preferences and choices of care

 


In Progress