Dying Matters Awareness Week

Blog
Published: 10 May 2023

Monday 8 to Sunday 14 May is Dying Matters Awareness Week, which encourages people to come together to discuss death, dying and grief. In this blog, Adrienne discusses the importance of these conversations and the ways Macmillan is improving support and information around end of life care for people with cancer.

Adrienne Betteley Strategic Adviser for End of Life Care at Macmillan

Talking about death and dying

This week is Dying Matters Awareness Week - an important campaign spearheaded by Hospice UK. Each year there is a different theme, and this year it’s coming together to talk about death, dying and grief in the workplace.

Over the last 33 years, 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 family 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.

So what are we doing at Macmillan to change things?

We are working in partnership with Social Finance. 

Social Finance are experts in social investment and work to find new and innovative ways to improve services that support people at the end of their lives. This partnership has led to the development of the Macmillan End of Life Care Fund. Macmillan provides up-front funding for services and is repayable 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.

The fund is now available. Macmillan invests in outcome-based contracting for end of life care services across the UK. 

For more information about the fund or to discuss how we could work together, contact endoflifecare@socialfinance.org.uk.

 

We are investing in palliative and end of life care leadership roles.

The aim is to bring about sustained transformational change in palliative and end of life care across the UK. These transformational roles will support the strategic design and direction of services, not to directly deliver them.

For more information or to discuss how we could work together, 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're working to encourage conversations about death and dying

In doing so, we hope to make the topic more comfortable to discuss. 

Check list to get you talking 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.