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End of life care

End of life care, is the care of someone who is considered to be in their last year of life and forms an important part of palliative care.[1]  Hospice UK have stated that ‘the last year of someone’s life is generally the time when they have the most contact with the health and care system, and their care costs the most.’ [2] During this time the primary objective of end of life care should be to ensure that person has a ‘good death’,[3] the key elements of which are:

  • Being treated as an individual, with dignity and respect;
  • Being without pain and other symptoms;
  • Being in familiar surroundings; and
  • Being in the company of close family and/or friends.[4]

 

Source: What’s important to me.  A Review of Choice in End of Life Care, The National Council for Palliative Care, The Choice in End of Life Care Programme Board, February 2015. 

Recognition by healthcare professionals of when a person is nearing the end of their life and then responding appropriately plays an essential role in determining whether or not that person has a good death.  In addition, effective end of life care involves not only excellent

clinical decision-making, but timely, empathetic, communication and provision of suitable support tailored to the needs of the individual, their relatives and carers.  Care decisions should be made in consultation with the individual and the family, be respectful of their cultural values and religious beliefs, and wherever possible accommodate their wishes and needs, enabling them to discuss, plan and make informed decisions regarding the care they want.

Delivering high-quality, effective end of life care often involves multiple agencies working closely together to co-ordinate the support they provide.  These agencies may include general practitioners, community nurses, domiciliary and adult social care services, hospital and ambulance services, pharmacies, specialist and allied health professionals, hospices and other voluntary sector organisations.

Research has shown that ‘access to end of life care is inconsistent: it is organised and planned better in some areas than others.’[5] Currently, in England end of life care services show marked geographical variation across a range of indicators.[6]  Furthermore, studies have found that ‘for ethnic minority groups and their families, specific issues or barriers may arise related to culturally appropriate health care practices, cultural or religious differences, diverse health beliefs, and access to services for care and support during end-of-life conditions.’[7]  Specific issues and barriers also arise for other minority or disadvantaged groups including LGBT,[8] prisoners,[9] homeless people,[10] and gypsies and travellers.[11]

Although it is important to recognise though that not everyone wants to die at ome, or in their usual place of residence, most people given the choice want to die in familiar surroundings.  However, nationally almost half die in hospital.

In Herefordshire, in 2015 50.9 per cent of all deaths occurred in the deceased’s usual place of residence, a significantly higher proportion than in England as a whole (46 per cent) and in the West Midlands region (43.9 per cent).

Percentage of deaths in usual place of residence (DiUPR), persons, all ages

Source:  Public Health England, End of Life Care Profiles.

Between 2004 and 2015, home deaths in Herefordshire as a proportion of all deaths increased slightly from 21.2 per cent to 23.7 per cent.  However, whereas in 2004 this proportion was higher than nationally and in the West Midlands the figure is now similar to both.

In 2015, hospital deaths as a proportion of all deaths were significantly lower than nationally (46.7 per cent) and in the West Midlands region (49.5 per cent), representing a decline since 2004 of 4.6 percentage points.

Percentage of deaths in hospital, persons, all ages


Source:  Public Health England, End of Life Care Profiles.

End of life care services in Herefordshire are generally good, but there is scope for further work to proactively raise the profile of issues relating to death and dying with the wider community, provide training and support for those non-clinical staff who work with terminally ill people or their families, and to recognise and accommodate the specific needs of minority groups.

We are not responsible for the content or reliability of the linked websites. References or listings should not be taken as endorsement by Herefordshire Council of any kind. We cannot guarantee that these links will work all of the time and we have no control over the availability of linked pages.

[1] What are palliative care and end of life care? Marie Curie.  Available at: 
https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care

[2] Achieving excellent end of life care locally: How can the public work with Sustainability and Transformation Partnerships to achieve excellent end of life care locally?, Hospice UK, 2017.  Available at https://www.hospiceuk.org/what-we-offer/publications

[3] ‘good death’, McGraw-Hill Concise Dictionary of Modern Medicine, 2002.  Available at https://medical-dictionary.thefreedictionary.com/good+death

[4] End of Life Care Strategy: Promoting high quality care for all adults at the end of life, Department of Health, 2008, p.9. Available at https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life

[5] Achieving excellent end of life care locally: How can the public work with Sustainability and Transformation Partnerships to achieve excellent end of life care locally?, Hospice UK, 2017.  Available at https://www.hospiceuk.org/what-we-offer/publications

[6] Atlas of Variation in End of Life Care for England – largest of its kind in the world, Bowtell, N., Pring, A. and Verne, J., National End of Life Care Intelligence Network, Public Health England, 2017. 
Available at www.endoflifecare-intelligence.org.uk/view?rid=989

[7] ‘End-of-life care for ethnic minority groups’, Siriwardena, A.N. and Clark, D.H., Clinical Cornerstone, Vol 6, No.1 (2004), pp.43-48.

[8] ‘Needs, Experiences, and Preferences of Sexual Minorities for End-of-Life Care and Palliative Care: A Systematic Review’, Harding, R., Epiphaniou, E. and Chidgey-Clark, J., Journal of Palliative Medicine, Vol.15, No.5 (May 2012), pp.602-611.

[9] 'The implementation of palliative and end of life care standards in Scottish prisons’, paper presented to Hospice UK National Conference, Allan, G., 22 November 2017.  Available at: https://www.hospiceuk.org/what-we-offer/courses-conferences-and-learning-events/hospice-uk-annual-conf/programme/wednesday

[10] "End-of-life care for homeless people: a qualitative analysis exploring the challenges to access and provision of palliative care", Shulman, C, Hudson, B.F., Low, J., Hewett, N., Daley, J., Kennedy, P., Davis, S. et al., Palliative Medicine, Vol.38, No.1 (January 2018).  Available at http://journals.sagepub.com/doi/abs/10.1177/0269216317717101

[11] Gypsies and Travellers.  A different ending:  addressing inequalities in end of life care, Care Quality Commission, May 2016.  Available at: www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_Gypsies_FINAL_2.pdf

Last updated: Thursday, August 23, 2018

  • Useful links
    1. Palliative and End of Life Care Strategy

      Herefordshire Clinical Commissioning Group’s Palliative and End of Life Care Strategy sets out Herefordshire’s vision and priorities to meet national palliative and end of life care strategies and standards, and to address local priorities for improving palliative and end of life care for children, young people, adults, and older people across all care settings in Herefordshire.

    2. Public Health England End of Life Care Profiles

      The end of life care profiles have been developed by Public Health England’s National End of Life Care Intelligence Network to support the NHS, local authorities, health services and other interested stakeholders to monitor comparative information on factors that describe population trends associated with the end of life.

    3. National End of Life Care Intelligence Network