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.

Footnotes

1. National Survey of Bereaved People (VOICES) 2013, Commissioned by NHS England administered by Office of National Statistics, July 2014. See also: http://www.ons.gov.uk/ons/dcp171778_370472.pdf

2. More care less Pathway - A Review of the Liverpool Care Pathway,  Baroness Julia Neuberger (chair), July 2013. See also: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf

3. National Care of the Dying audit for Hospitals 2013-14, Royal College of Physicians, May 2014. See also: https://www.rcplondon.ac.uk/sites/default/files/ncdah_exec_summary.pdf

4. Hose of Lords debate evenly split over assisted dying legislation, The Guardian, July 2014. See also: http://www.theguardian.com/society/2014/jul/18/assisted-dying-legalisation-debate-house-lords

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:https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf

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.

To print this article, all you need is to be registered on Mondaq.com.

Click to Login as an existing user or Register so you can print this article.

Authors
Similar Articles
Relevancy Powered by MondaqAI
 
In association with
Related Topics
 
Similar Articles
Relevancy Powered by MondaqAI
Related Articles
 
Related Video
Up-coming Events Search
Tools
Print
Font Size:
Translation
Channels
Mondaq on Twitter
 
Register for Access and our Free Biweekly Alert for
This service is completely free. Access 250,000 archived articles from 100+ countries and get a personalised email twice a week covering developments (and yes, our lawyers like to think you’ve read our Disclaimer).
 
Email Address
Company Name
Password
Confirm Password
Position
Mondaq Topics -- Select your Interests
 Accounting
 Anti-trust
 Commercial
 Compliance
 Consumer
 Criminal
 Employment
 Energy
 Environment
 Family
 Finance
 Government
 Healthcare
 Immigration
 Insolvency
 Insurance
 International
 IP
 Law Performance
 Law Practice
 Litigation
 Media & IT
 Privacy
 Real Estate
 Strategy
 Tax
 Technology
 Transport
 Wealth Mgt
Regions
Africa
Asia
Asia Pacific
Australasia
Canada
Caribbean
Europe
European Union
Latin America
Middle East
U.K.
United States
Worldwide Updates
Registration (you must scroll down to set your data preferences)

Mondaq Ltd requires you to register and provide information that personally identifies you, including your content preferences, for three primary purposes (full details of Mondaq’s use of your personal data can be found in our Privacy and Cookies Notice):

  • To allow you to personalize the Mondaq websites you are visiting to show content ("Content") relevant to your interests.
  • To enable features such as password reminder, news alerts, email a colleague, and linking from Mondaq (and its affiliate sites) to your website.
  • To produce demographic feedback for our content providers ("Contributors") who contribute Content for free for your use.

Mondaq hopes that our registered users will support us in maintaining our free to view business model by consenting to our use of your personal data as described below.

Mondaq has a "free to view" business model. Our services are paid for by Contributors in exchange for Mondaq providing them with access to information about who accesses their content. Once personal data is transferred to our Contributors they become a data controller of this personal data. They use it to measure the response that their articles are receiving, as a form of market research. They may also use it to provide Mondaq users with information about their products and services.

Details of each Contributor to which your personal data will be transferred is clearly stated within the Content that you access. For full details of how this Contributor will use your personal data, you should review the Contributor’s own Privacy Notice.

Please indicate your preference below:

Yes, I am happy to support Mondaq in maintaining its free to view business model by agreeing to allow Mondaq to share my personal data with Contributors whose Content I access
No, I do not want Mondaq to share my personal data with Contributors

Also please let us know whether you are happy to receive communications promoting products and services offered by Mondaq:

Yes, I am happy to received promotional communications from Mondaq
No, please do not send me promotional communications from Mondaq
Terms & Conditions

Mondaq.com (the Website) is owned and managed by Mondaq Ltd (Mondaq). Mondaq grants you a non-exclusive, revocable licence to access the Website and associated services, such as the Mondaq News Alerts (Services), subject to and in consideration of your compliance with the following terms and conditions of use (Terms). Your use of the Website and/or Services constitutes your agreement to the Terms. Mondaq may terminate your use of the Website and Services if you are in breach of these Terms or if Mondaq decides to terminate the licence granted hereunder for any reason whatsoever.

Use of www.mondaq.com

To Use Mondaq.com you must be: eighteen (18) years old or over; legally capable of entering into binding contracts; and not in any way prohibited by the applicable law to enter into these Terms in the jurisdiction which you are currently located.

You may use the Website as an unregistered user, however, you are required to register as a user if you wish to read the full text of the Content or to receive the Services.

You may not modify, publish, transmit, transfer or sell, reproduce, create derivative works from, distribute, perform, link, display, or in any way exploit any of the Content, in whole or in part, except as expressly permitted in these Terms or with the prior written consent of Mondaq. You may not use electronic or other means to extract details or information from the Content. Nor shall you extract information about users or Contributors in order to offer them any services or products.

In your use of the Website and/or Services you shall: comply with all applicable laws, regulations, directives and legislations which apply to your Use of the Website and/or Services in whatever country you are physically located including without limitation any and all consumer law, export control laws and regulations; provide to us true, correct and accurate information and promptly inform us in the event that any information that you have provided to us changes or becomes inaccurate; notify Mondaq immediately of any circumstances where you have reason to believe that any Intellectual Property Rights or any other rights of any third party may have been infringed; co-operate with reasonable security or other checks or requests for information made by Mondaq from time to time; and at all times be fully liable for the breach of any of these Terms by a third party using your login details to access the Website and/or Services

however, you shall not: do anything likely to impair, interfere with or damage or cause harm or distress to any persons, or the network; do anything that will infringe any Intellectual Property Rights or other rights of Mondaq or any third party; or use the Website, Services and/or Content otherwise than in accordance with these Terms; use any trade marks or service marks of Mondaq or the Contributors, or do anything which may be seen to take unfair advantage of the reputation and goodwill of Mondaq or the Contributors, or the Website, Services and/or Content.

Mondaq reserves the right, in its sole discretion, to take any action that it deems necessary and appropriate in the event it considers that there is a breach or threatened breach of the Terms.

Mondaq’s Rights and Obligations

Unless otherwise expressly set out to the contrary, nothing in these Terms shall serve to transfer from Mondaq to you, any Intellectual Property Rights owned by and/or licensed to Mondaq and all rights, title and interest in and to such Intellectual Property Rights will remain exclusively with Mondaq and/or its licensors.

Mondaq shall use its reasonable endeavours to make the Website and Services available to you at all times, but we cannot guarantee an uninterrupted and fault free service.

Mondaq reserves the right to make changes to the services and/or the Website or part thereof, from time to time, and we may add, remove, modify and/or vary any elements of features and functionalities of the Website or the services.

Mondaq also reserves the right from time to time to monitor your Use of the Website and/or services.

Disclaimer

The Content is general information only. It is not intended to constitute legal advice or seek to be the complete and comprehensive statement of the law, nor is it intended to address your specific requirements or provide advice on which reliance should be placed. Mondaq and/or its Contributors and other suppliers make no representations about the suitability of the information contained in the Content for any purpose. All Content provided "as is" without warranty of any kind. Mondaq and/or its Contributors and other suppliers hereby exclude and disclaim all representations, warranties or guarantees with regard to the Content, including all implied warranties and conditions of merchantability, fitness for a particular purpose, title and non-infringement. To the maximum extent permitted by law, Mondaq expressly excludes all representations, warranties, obligations, and liabilities arising out of or in connection with all Content. In no event shall Mondaq and/or its respective suppliers be liable for any special, indirect or consequential damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action, arising out of or in connection with the use of the Content or performance of Mondaq’s Services.

General

Mondaq may alter or amend these Terms by amending them on the Website. By continuing to Use the Services and/or the Website after such amendment, you will be deemed to have accepted any amendment to these Terms.

These Terms shall be governed by and construed in accordance with the laws of England and Wales and you irrevocably submit to the exclusive jurisdiction of the courts of England and Wales to settle any dispute which may arise out of or in connection with these Terms. If you live outside the United Kingdom, English law shall apply only to the extent that English law shall not deprive you of any legal protection accorded in accordance with the law of the place where you are habitually resident ("Local Law"). In the event English law deprives you of any legal protection which is accorded to you under Local Law, then these terms shall be governed by Local Law and any dispute or claim arising out of or in connection with these Terms shall be subject to the non-exclusive jurisdiction of the courts where you are habitually resident.

You may print and keep a copy of these Terms, which form the entire agreement between you and Mondaq and supersede any other communications or advertising in respect of the Service and/or the Website.

No delay in exercising or non-exercise by you and/or Mondaq of any of its rights under or in connection with these Terms shall operate as a waiver or release of each of your or Mondaq’s right. Rather, any such waiver or release must be specifically granted in writing signed by the party granting it.

If any part of these Terms is held unenforceable, that part shall be enforced to the maximum extent permissible so as to give effect to the intent of the parties, and the Terms shall continue in full force and effect.

Mondaq shall not incur any liability to you on account of any loss or damage resulting from any delay or failure to perform all or any part of these Terms if such delay or failure is caused, in whole or in part, by events, occurrences, or causes beyond the control of Mondaq. Such events, occurrences or causes will include, without limitation, acts of God, strikes, lockouts, server and network failure, riots, acts of war, earthquakes, fire and explosions.

By clicking Register you state you have read and agree to our Terms and Conditions