UK: Dying Well Matters

Last Updated: 15 October 2014
Article by Karen Taylor

In England, at least £4.5 billion a year is spent caring for people who are at the end-of-life, and while some individuals, particularly those accessing hospice or specialist community and hospital palliative services, receive high standards of care many others do not. Our report, Transforming care at the end-of-life, argues that while there has been a great deal of positive activity following the Department of Health's 2008 End-of-life Care Strategy, there are still too many inequalities in access to support and availability of good quality care.

Our report, which is based on a synthesis of key national reviews and audits published over the past 18 months, supplemented by interviews and discussions, highlights shortcomings and concerns about the large degree of variation in services across the country.

For example, Public Health England's 2013 National Survey of Bereaved Relatives, published in July 2014, found that while 43 per cent of respondents thought care was excellent or outstanding, 24 per cent said it was only fair or poor.1Indeed, co-ordination of care for those who died at home was rated significantly lower in 2013 than the previous year's survey with responses from the three annual surveys suggesting that the overall quality of care has remained relatively static. 

Other reviews and audits; such as the 2013 review of the Liverpool Care Pathway chaired by Baroness Neuberger, the 2013-14 National Care of the Dying Audit for Hospitals and the recent House of Lords debate on assisted suicide; all identified examples of good practice but also shortcomings and concerns.2 3 4

The facts on end-of-life care in 2014 are that: 

  • around 500,000 die each year in England, of whom 75, per cent have some form of palliative end-of-life care needs but for at least a quarter these needs go unmet and for others the services provided are only fair or poor
  • at least £4.5 billion a year is spent caring for people in the last year, days and months of life (excluding self-funders and care provided by families and carers) but a third of this is spent on the more expensive hospital care for people who, for the most part, would prefer to die at home 
  • care requirements are becoming increasingly complex as people live longer but die following chronic, multiple, ill-health conditions
  • the provision of care involves a continuum of people and support structures from hospitals to primary care, hospices to social care, volunteers, families and unpaid carers 
  • more than 50 per cent of deaths occur in hospital, while 70-75 per cent would have preferred to die at home
  • notably, after years of declining death rates the number of people dying each year is now increasing and expected to rise to 590,000 by 2030 making tackling this issue a matter of urgency.

In response to the concerns highlighted by the review of the Liverpool Care Pathway, the Department of Health established the Leadership Alliance for the Care of Dying People. Its report in June 2014 - One chance to get it right – includes a consensus on the five Priorities for Care needed in all care settings.5Given these initiatives will take time to bed down our report shares examples of good practice, particularly ones involving technological innovation, where measurable improvements are already being seen and where wider adoption could help kick-start the urgently needed transformation.

Themes covered by the examples of good practice include:

  • capturing and sharing information on the needs and wishes of people at end-of-life
  • educating and training the generalist health and social care workforce in care of the dying, including skills in communicating with and supporting families, carers and their advocates
  • access to advice and support from specialist palliative care service, including making effective use of technology such as telehealth
  • new incentives that encourage closer partnerships between care providers, including alternative funding models.

End-of-life care is a difficult but necessary subject to broach with the potential to prevent unnecessary suffering if delivered appropriately. It is an issue that has the potential to unite rather than divide service providers and, done well, could be an exemplar of cost-effective, co-ordinated and integrated care. However, the primary barrier to the delivery of good quality care is the lack of access to effective services that support people to die at home or in their care home. The emphasis now should be on transforming support in the community to reduce unwarranted variation in quality of care and unwanted hospital admissions. High spend does not equate to a good death and the reallocation of resources from the more expensive hospital setting should lead to better quality care that is cost neutral if not cost saving.


1. National Survey of Bereaved People (VOICES) 2013, Commissioned by NHS England administered by Office of National Statistics, July 2014. See also:

2. More care less Pathway - A Review of the Liverpool Care Pathway,  Baroness Julia Neuberger (chair), July 2013. See also:

3. National Care of the Dying audit for Hospitals 2013-14, Royal College of Physicians, May 2014. See also:

4. Hose of Lords debate evenly split over assisted dying legislation, The Guardian, July 2014. See also:

5. One chance to get it right – improving people's experience of care in the last few days and hours of life, Leadership Alliance for the Care of Dying People, June 2014. See also:

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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