Here at Willen Hospice, we’re supporting the national Dying Matters Awareness week, which runs from 10 – 16 May. This year’s message focuses on being in a good place to die.

According to research published by the Dying Matters campaign, Brits do not have sufficient plans in place for the end of their lives because they are unaware of what to do and unsure of how to talk about it.

The findings raise concerns that, despite the pandemic thrusting death into the public consciousness like never before, taboo and lack of knowledge mean thousands of people are dying each year without their needs and wishes being met – especially those who die at home.

The new research for Dying Matters Awareness Week reveals:

  • Just 13% of adults say they’ve let a close friend or family member know where they want to be when they die (rising to only 15% among over 55s);
  • Fewer than one in ten (8%) have put in place medical and/or emotional support for the end of their lives (dropping to 6% among over-55s);
  • Just three in ten (31%) adults know how to make arrangements to ensure they die in the place they would wish to;
  • Only one in five (20%) adults believe they will be able to control where they are at the end of life.

Data[1] shows that on average more than 1,000 additional deaths took place each week in the UK in private homes through the first year of the pandemic, over and above five-year averages, leaving approximately one million people bereaved.

But little is known about the quality of those deaths, and Dying Matters’ research indicates a worrying lack of knowledge and confidence among the public about dying at home.

While, for many, dying at home is seen as the best option, only a third (33%) believe they’d be able to receive end of life care at home, and less than a quarter (23%) were confident that they would not be in pain.

Peta Wilkinson, CEO of Willen Hospice said, “Since the start of the pandemic, our community based Willen at Home team have made over 3000 home visits, and more than 15,000 phone calls.

The choice to die at home is an important element of the holistic, compassionate care we provide, and that service is needed now more than ever.  As Dying Matters is campaigning, it is so important people are in a ‘good place’ when they die, not only for them, but also for their families so they can have peace in grieving.”

Hospice UK and Dying Matters Campaigns Director, Sarah West, said: “As a society, we need to be braver about talking about death, dying and bereavement, and better at making sure the right plans are put in place to protect ourselves and our loved ones at the end of life.

“Home is where people would feel the most comfortable at death, but as our research shows, little is known by the general public about the support – clinical and emotional – that is available.  We want people to know that with the right planning and support, people can be in a good place to die, whether it be at home, in a hospice or in hospital.

“The pandemic has seen the end of life sector really step up to not only support the NHS, but to try to make sure people could access the care they desperately needed at the end of life.

“The sector has urgently reshaped services and workforce roles, expanding community provision and working to support care homes where they could. But our research indicates that this short-term, emergency response needs to lead to a longer-term, systemic change.  We know that access and quality of palliative and end of life care is of great importance, regardless of setting.

“It is important to note that there is no right or wrong place to die, it is different for everyone, but it is also important for families to think about it, to talk about it and to plan for it. And that the health and social care system helps them to do so in the way that is right for them.”

The Dying Matters campaign will this week begin a public listening and evidence gathering exercise to better understand the experiences of people who die and their families, especially in private homes. The public are encouraged to take part and share their own stories with the campaign.

“Running from 10 – 16 May, Dying Matters Awareness Week is a chance to understand the experiences of people and families at the end of life, and those who have been bereaved. As well as providing resources and event support, we are asking you to join Dying Matters – which offers more information to support planning for a good death – to make sure that people across the UK, including you and your loved ones, are in a good place to die.”

Visit the Dying Matters website to find out more

[1] Data from the Office of National Statistics, National Records Scotland and Northern Ireland Statistics and Research Agency