End of life care

How we treat people in their final months shows the value that we, as a society, place on life – and at Macmillan we believe that there is such a thing as a ‘good’ death.

Macmillan wants everyone approaching the end of their lives to receive the care they need, be comfortable, and have their pain controlled. Having the choice about how you are cared for and where you spend the last days and hours of your life can help address this. It can also have a lasting and meaningful impact on friends and family left behind.

Our aim is to support people to make informed decisions, address palliative needs and ensure coordinated care and carers are supported, so that they die in the place and in the way they have chosen.

Macmillan’s end of life care influencing and services span through England, Wales, Scotland, and Northern Ireland. We partner with local and national palliative and end of life care organisations to further this mission to help people to die in the ways that they wish.

Advance Care Planning

Encouraging people to put their affairs in order, plan, and make choices about their future care is important. We want to better support health and social care professionals to do this. We have produced a range of resources aimed at enabling professionals to feel more confident and better equipped when supporting people to make advance care plans. 

These include our Advance Care Planning e-learning course, designed specifically for professionals across a range of roles supporting people affected by cancer. It explores:

  • what advance care planning is
  • benefits, barriers, and the role of health care professionals in the process
  • how to start a conversation on advance care planning
  • different ways a person can plan ahead
  • legalities of advance care planning and how these differ across the UK.

In addition, see our 10 Top Tips for Advance Care Planning [PDF] for health care professionals. Professionals can also direct people they support to our nation specific information booklet Your Life and Your Choices: Plan Ahead.

A blonde woman talks to the camera

Watch: Video about Advance Care Planning

Watch: Video about Advance Care Planning


Macmillan Specialist Care at Home

Macmillan Specialist Care at Home is a partnership approach to providing palliative care in community settings. It’s based on the successful Midhurst Macmillan Specialist Palliative Care Service which began in 2006. People cared for at the Midhurst service have fewer A&E attendances, spend fewer days in hospital, and are more likely to die in their preferred place of care.

In 2014 Macmillan launched six innovation centres in England to see if the outcomes from Midhurst could be replicated in different contexts. Investment was focused on working with local service providers to build on existing services for people at the end of life, and their carers.

All centres have been successful in bringing together existing local services, enhancing their offer and enabling people to be cared for in their preferred place.

Download the Findings from 2014-2016 report [PDF]


Building on the best

Almost half of people who die in the UK currently die in hospital. Every person who does die in hospital should have their pain effectively managed, and should experience choice and compassion in the care they receive. It is also important for staff working in acute hospitals to be supported to deliver high quality end of life care.

We have formed partnerships with Hospice UK in England and Wales, and with the Scottish Partnership for Palliative Care in Scotland. These partnerships, called 'Building on the best', will ensure that everyone in hospital approaching the end of life receives high-quality, compassionate care.


Bereavement

Macmillan wants to build on its existing bereavement information and support so that as many people as possible bereaved through cancer get the support and information they need. We have produced two booklets specifically for people who have been bereaved:

  • After someone dies: coping with bereavement- information, practical advice and emotional support for bereaved friends and family, and signposting to relevant services. This booklet won a British Medical Association (BMA) ethics award in September 2017.
  • Preparing a child for loss- produced in collaboration with Winston’s Wish, it offers support around talking to children of all ages about death and dying, before and after they are bereaved.

Macmillan is a member of the National Bereavement Alliance (NBA) which brings together organisations caring for bereaved people. The NBA has a website, which has been funded by Macmillan, and includes news, policy, research, events lists, and guidance, including a Guide to Commissioning Bereavement Services in England.

Bill stares out of the window drinking tea in his kitchen Bill on bereavement

'It’s not until after she’s gone and the rest of the family goes home that it really hits you.'


Key resources

Macmillan seeks to empower patients and carers to make informed decisions about dying. In this section, you will find award winning booklets, leaflets, and downloads with information and support.

End of Life: A guide [PDF]

This booklet provides information and support for what to expect and how to plan for the end of life. It covers how to choose where to be looked after, sorting out unfinished business, getting financial help, who can help if you're being cared for at home and what to expect in the last few days of life. It also has information for relatives and friends involved in your care. The booklet is jointly produced with Marie Curie Cancer Care.

After someone dies: coping with bereavement [PDF]

This booklet gives practical information about what to expect and what to do when someone dies. Written for relatives and friends, it also addresses some of the emotions people may feel and where to get help and support.

Preparing a child for loss [PDF]

This booklet was produced with Winston’s Wish for parents who have a diagnosis of terminal cancer and are nearing the end of life. It aims to support them in having the difficult conversations necessary to prepare a child for the death of a parent or close family member.

Rich picture on people at the end of life [PDF]

This is a collection of the key evidence about the numbers, needs and experiences of people affected by cancer at the end of life. It provides insight into the lives of people at the end of life and includes evidence to support campaigning, negotiations with partners and engaging with supporters.

For additional resources, please look at the End of Life Care Resources [PDF]. To order any of these resources, please visit be.Macmillan or call the Macmillan Support Line on 0808 808 00 00.

For more information about Macmillan End of Life Care, please email the End of Life Care team.

The words 'it wasn't good news I'm afraid' in the bottom left corner. In the middle a hand draws a woman on the phone in pencil.

Watch: Animation about advance care planning

Watch: Animation about advance care planning


Initiatives in End of Life Care

Being at home made the situation easier for us to cope with. It was comforting to know Emile was in the place he wanted to be and surrounded by people he knew and loved.

Liz, campaign supporter