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.

  • Project lead: Jane Seymour, Beth Hardy and Glenys Caswell
  • Helm team: Richard Windle, Simon Riley, Michael Taylor and Nicholas Whiting