Dying Matters Awareness Week

Dying Matters Awareness Week falls on Monday 5 to 11 May 2025 - it is an important campaign spearheaded by Hospice UK and has a different theme each year. For 2025 the theme is The Culture of Dying Matters.

Over the last 3 decades, I’ve seen first-hand how talking about death can be life changing and, in some cases, liberating for all involved. Figuring out what really matters to people when they’re facing the end of their lives, can help them and their loved ones to prepare emotionally, practically and financially so they can get on with living life as fully as they can. And I’ve also seen how difficult it can be to even broach a discussion about dying - we need to change this.

If my experience of end of life care has taught me anything, it’s that there is such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is still variation in the care and choice that people have as they approach their end.

The first step in achieving a “good” death is talking about it more. I’ve contributed to many reports and articles over the years where we have looked at the taboos around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.

Working in partnership with healthcare systems and Social Finance to improve outcomes for people as they approach the end of their life. 

Our partnership with non-profit organisation, Social Finance, led to the development of a Macmillan End of Life Care Fund. Through this fund, Macmillan provided up-front funding for services and ongoing subject matter expertise to partners across the UK.  The investment is repayable by local health systems if mutually agreed outcomes are met. The aims of the fund are to ensure: 

• People are approaching end of life are identified early and have access to high-quality end of life care services
• People receive equitable high-quality care that takes into account their choices, wishes and preferences
• People nearing end of life, their loved ones and carers are given personalised support and guidance.

Macmillan invested in outcome-based contracting for end of life care services across the UK.  In 2024 this included a new Locality Team Service through St Luke’s Hospice in Essex and the Harrogate End of Life Planning & Support Service (HELPSS).  This year we have invested in The Royal Marsden Haematology Oncology Palliative Service (HOPS) and hope to make further investments in the next few months including our first investment in Wales.  

Funding the new and supporting the ‘never-done-before’, can lead to improvements right across cancer care, helping us in our mission to reach everyone with cancer. Social investing at Macmillan means we provide upfront financial support and expertise to projects that have the potential to improve the wider healthcare system.  

For more information about our work, contact systeminvestments@macmillan.org.uk. 

 

We have invested in 23 palliative and end of life care leadership roles across the UK.

These roles are providing leadership and creating capacity to move the systems and partners to a state of maturity to bring about sustained transformational change in palliative and end of life care. 

To find out more, contact PEOLCLeaders@Macmillan.org.uk.

 

We're widening our support to Macmillan professionals.

This includes our palliative and end of life care professionals.

Discover more about our palliative and end of life care resources and support. 

We have information for your patients about end of life. This is available in different formats and languages. 

We're working to encourage conversations about death and dying

It sounds clichéd to say “dying is inevitable” or “death is the only certainty”.  

Of course we all die. But all too often it feels like we are hiding from talking about and preparing for death, as best we can. The fact that death will affect every one of us should galvanise us into action. Talking about death and dying in those exact terms and not using euphemisms, such as “passed away” or “lost a loved one”, is one of the first steps we can all take to make the conversation a more commonplace and less confusing one. 

 

Here’s a helpful checklist to help you start the conversation and make your plans: 

• I have written down my wishes for end of life and treatment
• I've started the conversation with loved ones about the plans for my death
• I've created a list of my must-have experiences before I die
• I know whether I would like to be buried or cremated
• I know where I would like my funeral to be or if I want a funeral
• I know how I would like my life to be celebrated 
• I have made a list of all my important documents and contacts (bank and building society, solicitor, insurance policies, accountant, etc)
• I have created a Lasting Power of Attorney if I want to
• I have written down advice and letters for loved ones
• I have life insurance set-up
• I have made a Will
• I have considered what legacy I want to leave behind 
• I have left a gift in my will to a charity or cause close to my heart 
• I’ve written a letter of wishes, distributing my personal belongings to my loved ones to go alongside my Will.
• I’ve made arrangements for the care of my pets 
• I’ve registered my wishes for organ and tissue donation.

 

This article was originally published in May 2023 and has been updated with new dates for Dying Matters Awareness Week and information about Macmillan.