End of life care

Over 450,000 people die each year in England and two thirds of these will be over 75 years old (Source: Dying Matters, 2013). This is expected to rise by 17% by 2030 with a significant proportion who are aged 85 yrs and older. (Source: Where people die).

For at least three quarters of deaths, death is expected rather than sudden and unexpected, therefore there is opportunity to plan for end of life. (Source: NHS England).

End of life care is support for people who are in the last months or years of their life. The aim of end of life care is to help people live as well as possible and to die with dignity taking into account peoples wishes and preferences.

End of life care includes palliative care. If you have an illness that can’t be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. Many healthcare professionals provide palliative care as part of their jobs. Some people require more specialist support which can be provided by a specialist palliative care team. (Source: NHS Choices).

What do we know?

As highlighted by the End of Life Care Strategy 2008 “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”.

Though all people want good end of life care, what constitutes a ‘good death’ for each individual is very much dependent on their individual preferences. Key to ensuring that preferences are taken into account are good communication and the availability of choice.

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.

Although only a quarter of people in Slough will die in their home, surveys suggest that around 70% of people would prefer to die at home(Source: Dying Matters).

Facts, Figures, Trends

Public Health England’s End of Life Local Authority Profile provides data for a range of end of life care indicators.

Table 1 Deaths at all ages 2013 

   Slough   National average
 Deaths at home   22.9%  22.4%
 Deaths in hospital   55.5%  48.3%
 Deaths in hospice   6.8%  5.5%
 Deaths in care home   12.9%  21.6%
 Other   1.9%  2.2%
  • The proportion of people dying at home in Slough similar to the national average.
  • More people die in hospital in Slough than the national average.
  • The proportion of people dying in hospices in Slough is above the national average.
  • The proportion of patients dying in care homes is significantly lower than national average.

Over the past decade, as shown in figure 1, the proportion of people dying in their “usual place of residence” (i.e. at home) has been slowly increasing both nationally and in Slough. In older people aged 75-84, however, there has been an increase in deaths in hospital since 2011.

Figure 1 : Proportion of deaths in usual place of residence 2004-2013 (all age groups)

figure 1

The National Survey of Bereaved People (VOICES) in 2012 found that less than a third of people rated their relatives’ care as excellent compared to nearly half in Wokingham Almost all (91%) people felt that health care staff had dealt with them in a sensitive manner, however for all other measures of quality of care, Slough ranked lowest in the Thames Valley region.

National & Local Strategies (Current best practices)

National

The Department of Health’s End of Life Care Strategy 2008 sets out the key principles in terms of delivering quality care at the end of life. Though the principles that are the foundation for this strategy remain, some clinical tools referenced by the strategy are no longer used e.g. the Liverpool Care Pathway.

“One chance to get it right: improving people’s experience of care in the last few days and hours of life” was a report published following an independent inquiry in response to concerns raised by families in 2012 over the use of the Liverpool Care Pathway (LCP).

This reports sets out the five priorities when it is thought that a person may die within the next few days or hours including:

  • regularly reviewing decisions
  • sensitive communication
  • involving family in decisions
  • actively exploring needs of the family
  • developing an individual plan of care

More recently the NICE Guideline : Care of dying adults in the last days of life (2015) has been published and provides evidence-based guidelines for clinicians on; recognising when adults are entering the last few days of life, communicating and shared decision-making, managing symptoms and hydration The guidelines also promote the use of the individualised care plan to reflect patient wishes and shared decision making.

Local

In 2015 East Berkshire developed the East Berkshire End of Life Commissioning group to review the delivery of End of Life Care across East Berkshire. An East Berkshire Provider Group was also formed to support the delivery of end of life care.

Slough’s Intermediate Care Team (RRR) provide End of Life care for any resident who has a prognosis of less than 6 weeks to live and who wishes to be at home.The Reablement Assistants who provide the service have specialist end of life training and the service will provide as many calls a day as the service user and their family require. It is closely monitored so the service can react quickly to meet the changing needs of the person. The families have access to support from the service 24 hours a day.

What is this telling us?

There are still a significant proportion of the population of Slough who would prefer to die at home but are not able to. Though the proportion of deaths at home is slowly increasing, for those aged over 75 fewer people are dying at home now than in 2011.

Given the ethnic diversity of the population of Slough, evidence suggests that there are likely to be large portions of the community for whom end of life care needs are not being met.

What are the key inequalities?

The Public Health England report “What we know now” considers the following evidence for inequalities in end of life care:

  • Black and minority ethnic (BME) groups
    On average 7% of people accessing palliative care services in 2012 were described as non-white despite 14% of the general population being of a non-white ethnicity, though this has increased from 6.2% in 2011. There is also variation in place of death by ethnic group, with White British groups being most likely to die in a care home or in their own home.
  • People with learning disabilities
    People with learning disabilities are not only less likely than others to receive specialist palliative care but are also less likely to have access to strong painkillers (opioid analgesia) at the end of their life and are more likely to have deaths described as “not planned”.
  • Non cancer conditions
    People with non-cancer conditions have poorer coordinated palliative care than those with cancer conditions and achieve lower rates of home death.

What are the unmet needs/ service gaps?

The Thames Valley end of life care audit highlights gaps identified by The Health Service Ombudsman’s report – Dying without Dignity which include the key themes that consistently recur in case studies of poor care:

  • Poor symptom control
  • Poor communication
  • Inadequate out-of-hours services
  • Poor care planning
  • Poor recognition of dying
  • Delays in diagnosis and referral

Recommendations for consideration by other key organisations:

  • Health comissioners to develop a robust End of life strategy using the House of Care framework, underpinned by “One Chance to Get it Right”
  • Engage with Dying Matters week
  • Promote the use of integrated electronic record sharing
  • Develop new outcome metrics that capture patient and carer experience of care in all settings, to replace the emphasis on place of death and time spent in/out of hospital
  • Commission providers to engage in education and training of the workforce in end of life care matters