We need to talk about dying: why stories from the end of life matter

Our guest blogger Dr Jane Collins, Chief Executive of Marie Curie writes for The Great Daffodil Appeal.

5th March 2018

Pears Foundation has a longstanding partnership with Marie Curie, which supports people living with any terminal illness, and their families. In this blog, Chief Executive Dr Jane Collins explains why the charity is determined to change the conversation around the end of life in the UK.

“It’s hard for my sons, but we’ve got to talk about it,” says Linda Tierney, who is living with terminal cancer. “There’s nothing more intimate than dying.”

Linda is one of around 4,000 people who receive support from Marie Curie every month. We’re the leading charity for people with any terminal illness – from heart failure to dementia. We offer expert care, guidance and support to help them and their families make the most of the time they have together.

Many of the people we help are cared for in their own homes by Marie Curie Nurses. Last year, our nurses gave hands-on care, often overnight, to more than 33,500 people at the end of their lives. Others will decide they want to be cared for at a Marie Curie Hospice – either as an in-patient or to benefit from day therapies. That’s the choice Linda has made.

“I know that I can go there when I’m close to the end and not have to worry about the pressures on my family,” she explains. “That’s just what I want for my own death.”

Linda’s also planned her entire funeral and picked out her casket – white with glitter paint along the sides. She’ll be buried in her wedding gown.

What Linda has done isn’t easy, but it is vital. Planning ahead for the end of life, and talking about what we want, isn’t something we’re good at in the UK – individually or as a society. We need to be.

The average age of the UK population is going up, as the baby boomer generation starts to reach retirement. In 25 years’ time, there will be 100,000 more deaths each year than at present. This means a significant increase in the number of people needing care at the end of their lives.

With NHS resources becoming increasingly stretched, as we’ve seen just this past winter, there is severe lack of capacity in social care, specialist palliative care and out-of-hours support.

Marie Curie has been caring for people at the end of their lives for 70 years, making us the same age as the NHS. Throughout that time, we’ve had to adapt to our environment to find the most effective – and affordable – ways of caring for people in our changing world.

It’s one of the reasons we developed our information and support services – including the Marie Curie Support Line and webchat facility. They enable us to provide anyone affected by terminal illness with a connection to accurate, empathetic guidance and emotional support.

It’s also why we fund research into better palliative and end of life care, and work alongside the NHS and with the support of organisations like Pears Foundation to deliver innovative new care models that help more terminally ill people when they need us most.

Our rapid response service is a prime example. It gets a Marie Curie Nurse to people’s homes within one hour to deal with urgent care needs, such as pain management, that might otherwise result in a stressful emergency admission to hospital.

Our work is guided by the voices and experiences of people who’ve lived with terminal illness or cared for someone who has.

People like Linda. Yes, she’s dying. But it doesn’t define her. She’s determined to make the most of every moment she has left, and our support helps her do that.

As she says: “Just because I’ve got a terminal illness doesn’t mean my life stops. I’m still me, I’m still living my life. I’m not dying of cancer, I’m living with cancer.”

Any one of us could find ourselves in Linda’s shoes. And if we do, don’t we want to be confident the right care will be there for us?

Every March, our Great Daffodil Appeal provides us with an opportunity to raise awareness of terminal illness and the care that Marie Curie provides. If just one of our yellow flowers pinned to a coat sparks a conversation about how we’ll prepare for the end of our own lives, and the care we might need, that’s a great first step.