RLO: End of life care

Resources

Title/link

Description

Booklet

Title	End of life: A guide
Source	Marie Curie and MacMillan Cancer Support
Date	2015
Type	Booklet
Access	Available to download from: http://be.macmillan.org.uk/be/p-20885-end-of-life-a-guide.aspx To order by post phone 0800 716 146. May be ordered online (requires free registration) from: http://be.macmillan.org.uk/be/s-314-end-of-life.aspx
Cost	Free + free postage and packaging
Content	Booklet designed for people who are dying and their carers. Covers the last few weeks of life, the last few days of life and nearing death. It includes emotional and psychological changes, physical changes, and what happens as death approaches.

Video:

Title	Changes in breathing towards end of life
Source	Marie Curie
Date	ND
Type	Downloadable factsheet Short film
Access	https://www.mariecurie.org.uk/help/being-there/end-of-life-preparation/breathing-end-of-life
Cost	Free
Content	This describes the changes that can take place in a person’s breathing as they approach the end of their lives.

Booklet:

Title	At the end of life
Source	MacMillan Cancer Support
Date	2011
Type	Downloadable factsheets
Access	http://www.macmillan.org.uk/Cancerinformation/Endoflife/Endoflife.aspx
Cost	Free
Content	Written for people who are dying of cancer, and covers the last weeks, days and moments of life. Although written for patients with cancer the tone and information are fairly generic; it may be of use to carers and people who do not have cancer.

Website:

Title	What end of life care involves
Source	NHS Choices
Date	2012
Type	Website
Access	http://www.nhs.uk/Planners/end-of-life-care/Pages/what-it-involves-and-when-it-starts.aspx
Cost	Free
Content	This offers an overview of who offers end of life care and when such care begins. It also acts as a portal to information about other topics, such as ways for the dying person to begin talking to their families about their worries and wishes

Website:

Title	Managing pain and other symptoms
Source	NHS Choices
Date	2012
Type	Website
Access	http://www.nhs.uk/Planners/end-of-life-care/Pages/controlling-pain-and-other-symptoms.aspx
Cost	Free
Content	Offers information about medications that can help to control pain. It also deals with other symptoms such as nausea and vomiting, loss of appetite, and constipation which may be caused by the illness or be a side effect of medication. It also includes comments from users of the site.

Website:

Title	Preparing for the end of life - information for carers
Source	Marie Curie
Date	2015
Type	Website
Access	https://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-help/information-for-bereaved-family-and-friends/what-to-expect-at-the-end.pdf
Cost	Free
Content	What to expect as a person is approaching death, including changes in body functions, breathing and behaviour. It is written specifically for carers.

Website:

Title	Coping with changes
Source	Marie Curie
Date	2015
Type	Website
Access	https://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-help/information-for-bereaved-family-and-friends/what-to-expect-at-the-end.pdf
Cost	Free
Content	Written for carers. It deals with what to expect as a person comes close to death, including physical changes, saying goodbye and preferences at time of death.

Video:

Title	Starting the conversation if someone close to you is dying
Source	Dying Matters
Date	ND
Type	Leaflet
Access	Free to download from: http://www.dyingmatters.org/sites/default/files/user/images/Resources/Promo%20materials/Leaflet_6_Web.pdf Order online from: http://shop.ncpc.org.uk/public/shop/default.aspx or by phoning: 08000 214466.
Cost	Free to download Ordering online or by phone leaflets cost £8 for 50, plus postage and packaging (December 2013)
Content	Offers tips on how to start the conversation with someone who is dying, with respect to practical and emotional issues around their deaths. The leaflet offers principles to bear in mind, possible ways of starting the conversation, suggestions for during the conversation and sample phrases to try.

Website:

Title	What to do after someone dies
Source	UK Government
Date	2014
Type	Website https://www.gov.uk/after-a-death/overview
Cost	Free
Content	Guide to legal obligations in the event of a death, plus issues such as the involvement of the coroner and arranging the funeral.

Website:

Title	Find Me Help
Source	Dying Matters
Date	2013
Type	Website
Access	http://help.dyingmatters.org/
Cost	Free
Content	Website offering links to local services and information which can be found by entering a postcode or location. Slight drawback is that organisations must add their details to the site in order for information about them to be available.

Please Note:

although these resources were available at the time this list was compiled availability may change as organisations review and update the publications they offer.

End of life care - Personal Print Summary

Please complete with any comments you have regarding this resource. You can print this out and keep as a personal record if required.

Learning Objectives for this resource

be aware of the problems faced by carers

Acknowledgements:

This RLO was developed by:

Project lead: Jane Seymour, Beth Hardy and Glenys Caswell

Helm team: Richard Windle, Simon Riley, Michael Taylor and Nicholas Whiting

The development of this training programme would not have been possible without the collaboration of many people and organisations. We would like to acknowledge the following:

Research Team

Gail Ewing, University of Cambridge
Gunn Grande, University of Manchester
Sheila Kennedy, University of Sheffield
Andy Perrey, Carers Federation, Nottingham
Julia Tabreham, Carers Federation, Nottingham

Research Partners:

Heather Redshaw
Don Robertson
Deborah Tanner
George Wood

Organisations which piloted the programme:

Eileen Tomany, Age UK Nottingham and Nottinghamshire
Gill Horne, Catherine Hughes & Kerry Macnish, Rowcroft Hospice, Torquay
Richard Dearing, Marie Curie

Critical readers who offered useful insights:

Joanna Black
Kay Greene
Clare Henry
Robert Norton

The people who participated in workshops to help the research team develop the training programme outline.

The many trainees who took part in piloting the programme and provided feedback, enabling its revision.

Funders:

Dimbleby Marie Curie Research Fund

The aim of the joint Dimbleby Marie Curie Research Fund is to invest in research areas that are currently poorly funded nationally. The fund supports research into the supportive and palliative care needs of patients who have cancer and other terminal illnesses.