Friends at the End

Covid-19 has made us all more aware of mortality. Calls and enquiries to Friends at the End, a Scottish charity that promotes understanding of end of life choices, have tripled since this time last year.

Chief executive Amanda Ward tells Knowledge and Learning Manager Zoë Anderson how the pandemic has changed their work, and how an Awards for All Scotland grant has helped them to support people at high risk of Covid-19.

Started in 2000, the charity works with people at the end of life. But it soon found that many of its participants faced other issues: loneliness, isolation, feeling a lack of control. "A lot of work that we do is trying to give them control back," Amanda explains, "to give them choices and opportunities."

As part of our Covid-19 funding, their Awards for All grant of £9,993 supports people to put their end of life documentation in place. As well as wills, this includes Powers of Attorney, a legal document that names someone else to help make decisions with you or on your behalf; Advance Directives, which record any medical treatments you don't want to be given, and Advance Statements, which set down your preferences, wishes, beliefs and values regarding future health or social care.

Before the pandemic, Friends at the End held workshops to help people do this, often arranged through its local groups in Glasgow, Edinburgh, Dundee and Fife. The charity also hosted 'death cafes' where people got together over coffee and cake, ready to talk about what can be a taboo subject.

"People want to share their experiences," Amanda says. "It goes right across the spectrum: people who have had children who died at a young age, those who are currently caring for someone in their 90s, who are receiving hospice at home. It's an outlet for people to talk and share and to feel supported.

"There are befriending, friendship groups, as well as helping people with the formal aspects of how you deal with things at the end of life." Often, friendships grew naturally from these conversations. "That's something that's been really nice for us: to see people who have maybe been experiencing loneliness, coming along to one of our events, meeting people in their area, and keeping in touch – not facilitated by Friends at the End, but now they've got their own wee friendship groups and network."

All this work was done face-to-face, so lockdown brought huge changes. "It was a bit of a nightmare! I'd been on maternity leave, then on study leave. My return to work date was 1 April."

The first task was to contact the charity's existing membership. "We wrote to them, we phoned the people who weren't on email, and asked: 'What do you need from us? We’re not able to run our local groups, but how can we still support you?' So we came up with a strategic plan on that basis – how we were going to operate for the next three to six months."

To reach beyond the membership, they turned to local and social media and partnership working with other voluntary groups. "The people we work with are primarily older people. They're not all going to be online, or looking at social media. Those were the platforms we were using to spread our message, so how do we reach people who almost seemed out of sight? We used the media to raise awareness, to get people to contact us on a community level, rather than trying to operate at a national level. I suppose we went onto a more micro level."

They also did their own scoping exercise: "What other charities are operating in our area – is there anyone doing similar work to us? We found that there wasn't." They wrote to 32 local authorities throughout Scotland, and to voluntary associations operating within those authorities. "We said, this is who we are, this is what we do. We know that there's a real need for this, especially as people are becoming unwell."

As a result, Friends at the End has been added to more befriending networks, and is receiving many more referrals. "People say, 'Now's the time. I’m being faced with mortality like never before, I want to stop putting off things, like my will.'"

There has been a threefold increase in enquiries: between April and June 2020, Friends at the End have given general advice to hundreds of callers, and assisted 15 people through the end of life planning process. Support is now offered by phone, email or Zoom.

The charity has also taken part in webinars and online events, working with a range of voluntary sector organisations.

A lot of networking opportunities have moved online, which has been really useful for us. We definitely feel we're part of networks we weren't part of before – we're a small charity, and we weren't really well known.

Amanda Ward

Some changes have been unexpected. "On a very local level, in Glasgow and Edinburgh, we set up volunteers for people who needed prescriptions collected or groceries delivered." That's not something the charity would ever have done in normal times, "but we felt that it was important to respond in the ways that people were telling us they needed help."

It underlines the charity's determination to listen to their service users. "For a long time, we've wanted to be more person-led. We're only a small organisation – it's just myself and one part-time member of staff. There's always more to do than there is time and people to do it." As lockdown stopped travel and some activities, "it's allowed things to come to the fore that maybe we weren't aware of before. We went out and asked, what do you need from us, rather than saying, this is what we do. We’ve turned it on its head."

For Amanda, "being as kind and compassionate to people as you possibly can," has always been an essential part of work. "It's important to have the qualifications" – she is an academic and lawyer, with a background in healthcare law ethics – "but it's more than just getting your documents in order. It's about pulling out from that, what are this person's circumstances? Do they need support in other ways, do they need friendship, are there issues with loneliness or bereavement? It's about taking a whole person-centred approach."

That compassion makes its own demands. "We're working from home, with all the issues that go with that – schools are closed, childcare. The conversations can be really tricky. They take a long time, going through people's personal circumstances, making sure that we're doing everything absolutely right with these documents. You have to cross the Ts and dot the Is.

"Then we go into all the scenarios – would you want to go into a hospice? Who can care for you, would you want to go into a care home? Or the different ailments people might get, as they get older. We ask, consider if you were in a car crash and couldn't communicate, how would you want to be cared for? Or if you received a dementia diagnosis? People can become quite anxious about it.

"Ordinarily we do this work face-to-face: you can give someone a hug, or hold their hand. People find it really overwhelming, I can sense that on the phone, but we aren't able to offer physical comfort. That's been one of the hardest things, not being able to do what feels human. To comfort people in the way we ordinarily do." The charity's board has been supportive, encouraging staff to take time for themselves – but the work can still be emotionally draining.

Yet it's inspiring, too. Amanda is most proud of the times when families get in touch. She remembers an older woman, who needed acute care at the end of her life. "She was so unwell that she couldn't talk, couldn't express her own wishes and values – but she had her end of life pack with her, and it spoke for her. One of the family members said that it was like a shield against aggressive treatment or overtreatment."

For the family, this was a 'good death', one where her wishes were respected and cared for. "We’re hearing more and more instances, over the last few months – the feedback from families, thank you cards coming to the office. It feels really worthwhile. It's a lot of effort, but when we know it's worked, for us that's the greatest achievement."

Covid-19 has made people much more aware of mortality – and readier to talk about it. "It's something that we certainly bury our heads in the sand about. It can be upsetting and uncomfortable for people. Whereas - watching the news every day, having reports of deaths every day - that's just a starkness we've never had to face before."

The charity hopes to harness that new awareness to help people see death as part of life.

If you embrace it and put everything in place to safeguard yourself, you'll know that you have this to speak for you, should you become ill or not be able to communicate your wishes. It allows you to get on with actually living your life, knowing that you don't have to be scared or afraid, because you've done everything in your power to make the end of life a good one.

Amanda Ward

They're also looking at ways they can make more efficient use of their small resources. End of life plans are time consuming – particularly since they're now being done one-to-one, rather than in larger workshop settings. Amanda is looking at putting some of the questionnaires online, followed by "a more nuanced conversation" once the details have been filled in.

This would also allow people to pace themselves over what can be an intense process. "Sometimes we get people on the phone, saying, 'I heard you on the local radio, and I want to put my will in place, make my husband my power of attorney' and they think it’s really straightforward." Preparing online, they could, "Do a bit, take some time away, start again – I think that could be really useful."

If Amanda could go back to the start of the crisis, what advice would she give herself? "Remember the reason for doing this. The work that we do is with people at the end of life, people who are already dying. In the context of the pandemic, where there are thousands of people dying - that’s been really hard for me. When you look at it as a whole, it’s just too overwhelming. So try to think strategically, take a deep breath every day and realise that there's a longer term issue here. Keep remembering the individual stories: focus on the people that we're here to help."

Find out more about the work of Friends at the End, or follow them on Twitter and Facebook.

Amanda Ward spoke to Zoë Anderson on 29 June 2020. This page was last updated: 20 July 2020.