Almost everyone will experience end of life care at some point during their lives. Many of us will be involved in caring for someone who is dying, often a close friend or relative. Some of us will be involved in a professional manner, looking after dying people as part of our role in health or social care, or other professions such as lawyers or religious leaders. Most of us will also need end of life care as individuals, regardless of what our eventual cause of death might be.
The difference good end of life care makes to both dying individuals and their families cannot be underestimated. Each death is personal; the memories of every death remain with the people involved long after a loved one has passed away. The final thing we can do for the people we care for is to make sure they receive the best possible care at the end of their lives. However, a deep-seated unwillingness to talk about death across society has meant that discovering the needs of dying people, and then trying to translate these needs into practice, has not been an easy process. The North Yorkshire Health and Wellbeing Board has recognised the importance of improving care at the end of life by including ‘Dying Well’ as one of the five key themes for the Joint Health & Wellbeing Strategy 2015-20.
What is end of life care?
The General Medical Council definition of ‘end of life’ says that people are ‘approaching end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:
advanced, progressive, incurable conditions
general frailty and coexisting conditions that mean they are expected to die within 12 months
existing conditions if they are at risk of dying from a sudden acute crisis in their condition
life-threatening acute conditions caused by sudden catastrophic events
End of life care involves any care that is provided when a patient has reached this terminal stage. This includes the palliative management of pain and other symptoms, and also the provision of psychological, social, spiritual and practical support. The range of health and social support needed highlights the importance of an integrated service model for end of life care.
The UK population is steadily ageing, and deaths in England and Wales are expected to rise by 17% between 2012 and 2030. Currently just over 1% of people in the UK die every year; in 2014 there were 501,424 deaths registered in England and Wales (ONS, 2015). North Yorkshire already has a population with a significant proportion of elderly residents - end of life care is therefore a very important issue for many residents and their families.
The UK provides comparatively good end of life care overall (2015 Quality of Life Index), but some areas, such as communication and access to out of hours services, need improvement. A recent estimate suggested that of the approximately 355,000 people needing palliative care services every year, around 92,000 people were still not being reached. 70% of carers report that those they care for do not get all the support they need.
The majority of costs from end of life care currently come from hospital admissions, averaging £4500 per person. It is estimated that providing better care in the community will reduce unnecessary hospital admissions, with potential savings estimated around £500 per person (Nuffield Trust, 2014). The overall financial cost of end of life care is not currently known, as care is provided by many different people across a range of different settings. A review of the economics of end of life care by Public Health England is due to be released in June 2016.
Discussions about dying: The persisting view of death as a ‘taboo subject’ by patients, families and medical practitioners means that the wishes of the dying person are often missed, leading to inappropriate care being given in the wrong locations. Most people still die in hospitals, despite the most common preference being to die at home. In North Yorkshire 43% of deaths occurred in hospital (2013), which is lower than the national average but still does not reflect expected patient wishes.
Access for all: Although many people receive very good end of life care, it is still not available to everyone. Access to care can be affected by where people live, the type of illness they have, age and deprivation level. End of life care is well-integrated into some care pathways (particularly for cancer), but not for others such as dementia. In addition, not all people have out of hours access to end of life care services. Across the country only 11% of hospital inpatients have 24/7 access to a specialist palliative care teams, and not all people in the community have 24/7 access to advice and key therapies such as analgesia.
Co-ordinating services: Good quality end of life care can only be achieved if there is a co-ordinated approach between service providers, including electronic communications systems (EPaCCS). People needing end of life care often have complex health and social care needs, and will therefore come into contact with a range of services including primary care, secondary care, emergency services, social services, housing services and voluntary sector organisations. Good communication is needed to make sure that individuals access the right services at the right time, in order to prevent unnecessary duplication of services or inappropriate treatment.
Training: All people involved in end of life care (both palliative care specialists and non-specialists such as GPs, community nurses and social workers) need suitable training, including how to identify and manage people at the end of life, and also relevant communication skills for discussing end of life issues with patients and their families.
End of life care encompasses more than just health needs. Dying well is likely to also require social care, spiritual care, legal assistance, general wellbeing advice and emotional support both for the dying and for their families.
Areas for improvement
End of life care services in North Yorkshire can be improved by focusing on seven key areas:
Ambitions for Palliative and End of Life Care: a national framework for local action 2015-2020
Guide for commissioners on end of life care for adults
NICE commissioning guidelines [CMG42], December 2011
Care Quality Commission: ‘A different ending: End of life care review’
Addressing inequalities in end of life care
On the Brink: The Future of End of Life Care
Report by the End of Life Care Coalition
Nuffield Trust: Exploring cost of care at the end of life
Providing a best estimate of current costs, and comparing to Marie Curie community model
North Yorkshire JSNA: End of Life Care [full report]
North Yorkshire Health Joint Health and Wellbeing Strategy 2015-2020