Resources
End of life care
Blogs
NHS England – Laura Tooley (2015) End of Life and Palliative Care in England: Getting it right. Programme Lead at West Midlands Strategic Clinical Networks and Clinical Senate, Laura Tooley highlights national guidance and invites us to consider our role in this emotive yet important area of care.
Books
BREEZE, Jayne, COOPER, Carol, KYDD, Angela, MONKS, Suzanne, TURNER, James, SKILBECK, Julie and WILSON, Eleanor (2018). Palliative and end-of-life care in mental health. In: WRIGHT, Karen and MCKEOWN, Mick, (eds.) Essentials of Mental Health Nursing. Sage
Nicol, Jane, Nyatanga, Brian (2017) Palliative and End of life care in Nursing. 2nd edition. London. Sage A clear and concise overview of palliative care and end of life care in contemporary nursing. It is informative, easy to read and beneficial to nursing students and those who wish to develop their knowledge and understanding of the subjects. The case studies complement the information provided and help to bridge the theory to practice link. The activities would help those who wish to reflect on their feelings, knowledge and development. Chapters include: Communication, loss, grief and bereavement, cultural issues, rehabilitation, ethical considerations, the critical care setting and legal aspects connected to palliative and end of life care.
Podcasts
Good Grief – the hit podcast teaching us how to laugh about death. Presented by comedian Cariad LLoyd, she talks to other comedians (such as Robert Webb, Sarah Pascoe, David Bandiel) about their experience with death and grief. Listen via apple podcasts acast radio 4
Useful documents
Public Health England, NHS Rightcare (2018)Atlas of variation for palliative and end of life care Final Reducing unwarranted variation to improve health outcomes and value
2018 New resource to help homeless people access vital care at the end of life: Homeless EOLC research Press release 18 Oct 2018
Royal College of Physicians (2018) Talking about dying: How to begin honest conversations about what lies ahead
2018 Good grief. Older people’s experiences of partner bereavement Author: Catherine Seymour, Jeremy Bushnell and Sarah Dobson. Death and bereavement are not subjects that are well recognised or prioritised within UK society. Where policy does exist, it is disparate and unconnected. Support for bereaved older people is therefore highly localised and depends on the availability and attention of third sector organisations. Older people’s experiences following the loss of a partner vary hugely. Independent Age set out to learn more about those experiences and understand what can be done to ensure more have positive outcomes. This report brings together what we already know about older people’s experiences of bereavement along with new research centred on older people whose partners have died. We focus on some of the issues faced by those living with the grief of losing a loved one. Our research also reveals how talking about death, at an individual and a policy level, can start to provide the help that older people need when faced with the most difficult moment of their lives.”
2017 NICE quality standard for Care of dying adults in the last days of life. Quality standard Published: 2 March 2017 nice.org.uk/guidance/qs144
DOH (2017) One Year On. The Government Response to the Review of Choice in End of Life Care
DOH (2017) Delivering high-quality end of life care for people who have a learning disability
What now? Questions to ask after a terminal diagnosis
2017 Compassion in Dying, with support from St Joseph’s Hospice, has created a new Advance Statement to empower people to think about and record their wishes. The statement supports people to have meaningful conversations with those involved in supporting their health and care.
2017 Variation in end of life care. A report from Macmillan highlights geographical variation and inequality of access to personalised end of life care. The Final Injustice calls for national and local action to ensure that everyone has access to the right care at the right time regardless of where they live. The report sets out a series of recommendations to encourage choice and high-quality end of life care for everyone
Macmillan cancer support (2017) The Final Injustice. Variation in end of life care in England
NHS England (2017) Delivering high-quality end of life care for people who have a learning disability. Resources and tips for commissioners, service providers and health and social care staff.
NHS England (2017) Dementia. Good Care Planning Information for primary care providers and commissioners
The government then responded to this document. Our Commitment to you for end of life care. The Government Response to the Review of Choice in End of Life Care (2016)
Care Quality Commission (2016) A different ending; Addressing inequalities in end of life care
Public Health England (2016) Faith at end of life. A resource for professionals, providers and commissioners working in communities.
DOH (2016) Our Commitment to you for end of life care. The Government Response to the Review of Choice in End of Life Care.
This is the most current report from the Office of National Statistics who regularly conduct National Surveys of Bereaved People (VOICES. Views of Informal Carers – Evaluation of Services)) England (2015). They collect information on bereaved people’s views on the quality of care provided to a friend or relative in the last 3 months of life, for England. The survey has now been run for 5 years and was commissioned by the Department of Health in 2011 and 2012, and NHS England from 2013, 2015.
The Choice in End of Life Care Programme Board was commissioned to provide advice to Government on improving the quality and experience of care for adults at the end of life, their carers and others who are important to them by expanding choice. The Choice in End of Life Care Programme Board (2015) What’s important to me. A Review of Choice in End of Life Care
NHS England also has ‘ambitious plans to improve the care for people of all ages; people living with and dying from all conditions and those that need additional specialist help and advice’. (Actions for End of Life Care. 2014-16, NHS England).
2014 A new approach to caring for dying people based on the needs and wishes of the person and those close to them has been launched. It takes the form of five new Priorities for Care which succeed the Liverpool Care Pathway (LCP) as the new basis for caring for someone at the end of their life. The new priorities have been created by a coalition of 21 organisations known as the Leadership Alliance for the Care of Dying People (LACDP). The priorities form part of the Alliance’s overall response, called ‘One Chance to Get it Right’, to an independent review of the Liverpool Care Pathway led by Baroness Neuberger.
2011 NICE Quality standard for End of life care for adults. Quality standard Published: 28 November 2011 nice.org.uk/guidance/qs13
National Council for Palliative Care and National End of Life Care Programme (2011) Commissioning End of Life Care.
General Medical Council (2010) Treatment and care towards the end of life, good practice in decision making
2008 End of Life Care Strategy (DH)
Webpages
Let’s talk about death and dying – a booklet and film from Age UK and the Malnutrition Taskforce to help people explore and approach the subject
Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. The website is being developed into a knowledge hub where you can find resources, such as assessment tools, useful information, best practice examples and case studies, that will help you implement the Ambitions framework, and make sure that everybody gets the high-quality end of life care that we would all want for ourselves and our families.
Compassion in dying. Information and advice for people making decisions about healthcare, understanding rights and planning in advance.
Commissioning person centred end of life care. A toolkit for health and social care.
Department of Health policies on end of life care.
NHS England Palliative care resources.
Dying Matters – is a coalition of 32,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.
NHS England. Transforming end of life care in acute hospitals: The route to success ‘how to’ guide.
Public Health England’s National End of Life Care Intelligence Network (NEoLCIN)provides the collection and analysis of information related to the quality, volume and costs of care provided by the NHS, social services and the third sector to adults approaching the end of life. It is hoped by NHSIQ, the intelligence will help drive improvements in the quality and productivity of services
No painful compromise A guide for commissioners and providers to improve pain management for dying people at home
Transforming end of life care in acute hospitals: The route to success ‘how to’ guide
The serious illness conversations pilot
To improve end of life care in care homes and spread lessons already learnt an enhanced health in care homes framework was published in 2016.
Dying matters
Rio Ferdinand Reveals How Much He’s Struggled to Grieve for His Wife | This Morning
Rio Ferdinand opens up about the sudden loss of his wife to cancer and shares how hard he found it to grieve for her due to years of repressing his emotions.
Rio Ferdinand: Being Mum and Dad 2017 BBC Documentaries
BBC Documentaries Rio Ferdinand: Being Mum and Dad (March 28, 2017)
TRAILER- The Trouble with Dad.
Channel 4D – avid Baddiel’s dad has Pick’s disease. This programme explores its impact on the family.
David Baddiel’s Dad’s Dementia – The Trouble with Dad (Full movie)
This is a pre-recorded interview that was done at Steve’s home on Thursday 9 May 2013 by John McGuire and Scott James the Cameraman. It was a ‘day in the life’ style interview that focused on attitudes to dying to tie in with ‘Dying matters awareness week’. Bit Steve really enjoyed doing it because he got to do some magic.
WHAT is this life if, full of care, We have no time to stand and stare?— No time to stand beneath the boughs, And stare as long as sheep and cows: No time to see, when woods we pass, Where squirrels hide their nuts in grass: No time to see, in broad daylight, Streams full of stars, like skies at night: No time to turn at Beauty’s glance, And watch her feet, how they can dance: No time to wait till her mouth can Enrich that smile her eyes began? A poor life this if, full of care, We have no time to stand and stare
‘Blackstar’ off David Bowie’s album Blackstar
Our technology correspondent Benjamin Cohen looks at how people are starting to think more carefully about preserving their digital legacy, once they’re gone.
Death, dying and the Daily Mail (Dr Margaret McCartney starts about 10:20 in and lasts around 20 mins)
Introduction to the Hospice UK 2015 annual conference by our Chair and new CEO; followed by Plenary 1, by Dr Margaret McCartney, GP, broadcaster and author of ‘Living with Dying’.
Dave Allen Death Race
The comedy sketch was set around the rumor that only one person buried on that day could go to heaven. The second person would have to wait for the next day to get in to the pearly gates.
