Loneliness at the end of life

There is more research coming out all the time – and the more understanding we get the more disturbing it seems to get.

The case for a loneliness strategy for Northern Ireland now seems unanswerable – and the sooner we get one the better.

We already know the overall effects of social isolation and loneliness on our health -  they are risk factors comparable to obesity and physical in activity.

But the latest research from end of life charity Marie Curie sheds new light on an especially troubling topic – the impact of loneliness on people and their carers at the end of life.

It is believed to be the first research projects into the topic to be carried out in Northern Ireland, perhaps anywhere given the scarcity of published material on the topic.

The findings are disturbing and merit urgent attention, suggesting that loneliness has a deep impact at this most sensitive phase in our lives – causing people to withdraw further from social contact, experience worsening symptoms, even leaving people feeling they have nothing left to live for.

 This is not how people should feel as they reach the end of their days. And it is unconscionable for society not to do all it can to alleviate or prevent it.

Unfortunately that is not all in our gift – there are a number of factors that put people at a heightened risk of loneliness which include old age, poor health, disability and low income. The trouble is that many with terminal conditions are in most or all of these categories at once.

The report concludes: “the scourge of loneliness is significantly affecting the health and wellbeing of people living with a terminal illness, and their carers, across Northern Ireland: It’s making their physical symptoms worse. It’s impacting their mental health. It’s robbing them of a good quality of life before they die. And, in the most heart-breaking cases, it’s causing them to simply give up on the time they have left.”

Before we get on to cause and effect it is important to note the extent of loneliness. In 2020/21 20% of the population of Northern Ireland reported feeling lonely at least some of the time – that’s around 380,000 people. This number is just 3% up on previous years, showing the problem was well entrenched before Covid-19 struck. It’s not evenly spread, with over 75s, females and those from areas of deprivation worst affected. Those with life-limiting illness are almost twice as likely to report deep feelings of loneliness than the general population.

The research was carried out  by Marie Curie in partnership with Queen’s University Belfast in 2021. There are two components:  A survey on the prevalence, impact and potential solutions to loneliness among people living with a terminal illness, and their carers in Northern Ireland from the perspective of frontline staff, and a series of focus groups with these staff to further explore experiences of loneliness among people affected by terminal illness.

Some of the material uncovered is heart-rending.

One staff-member told researchers: “One of the loneliest people I’ve ever met is a gentleman who’s living with a terminal illness and he’s in a nursing home. He doesn’t have very many family visitors. And the care staff, he knows they care and they come in and they do their tasks. But he’d just like, at some point, one of them to take five minutes and sit down and say: ‘how are you?’ and just have a chat with him. They just don’t have time. He understands that. But he’s very, very lonely.”

And it also uncovers other reasons why people who are dying may not want to around loved ones even when they do have networks. “On an emotional level, they may feel the people in their lives cannot truly understand what they’re going through, leaving them without the meaningful connections they need. They may be reluctant for loved ones to visit due to the impact their condition is having on them – including on their physical appearance and abilities. And this may be matched with friends and loved ones feeling uncomfortable with confronting the fact that the person is dying – making them reluctant to spend time around them.”

Others seek to protect their loved ones by simply not telling them that they feel lonely, believing that they are distressed and pressured enough by the fact of the terminal illness.

“One lady was cared for by her husband. She had a degenerative condition that had been ongoing for a while and now she was literally stuck in her chair and basically sleeping in her chair at night. And she actually said to me: ‘this is the first time I’ve been able to talk to another woman about how I feel’. And it broke my heart, when you think of the amount of people coming in and out of the house. But it was just because I was there and I was there all night. And she was awake most of the night. And I think the impact for her was, she felt very sad. She felt she couldn’t tell anybody how it was, how she felt. Not even her husband, because she was protecting him. She was lonely. Bottom line was, she was lonely.”

Loneliness is also very common amongst carers but recognising and dealing with it is made all the harder by the stigma associated with it, emphasising the importance of ensuring that healthcare professionals are trained to recognise the signs of it.

The pandemic hit carers especially hard with the closure of many respite services with 80% saying they were unable to take a break. The impact will have been compounded for all those elderly carers with health conditions of their own.

The research also uncovered evidence of the connection between loneliness and our experience of physical pain: “If you’re feeling lonely and you don’t have that support around you, you don’t have that listening ear, you don’t have somebody to share those problems with, they’re more heightened in your own mind. Because you don’t have that opportunity to offload or to share or discuss, and things accumulate and escalate.

“There’s also the distraction – when you’re lonely, you have more time to dwell on things. You don’t have the distraction of people around you. I do think there’s an increase in symptoms, especially around pain and anxiety, because people don’t have the support of their family coming in. They don’t have that distraction. And symptoms are heightened and increased. There’s a sense of panic. And what might before have been a little niggle of pain when they’re surrounded by family distracting them and interacting with them and feeling supported, suddenly when they’re on their own, it’s seven out of ten pain, eight out of ten pain. It escalates things a lot more quickly.”

The report is important and deserves a careful read.

It lays out some potential solutions we should explore. Of all these one seems especially urgent and would be relatively low cost. It is that  Health and Social Care Trusts should deliver more befriending and companionship services for people living with a terminal illness and carers.

There is a lot of emerging science around treatment and care. But for all of it the universal truths remain. A great health service needs to be grounded in loving care from birth to our last days. Today, perhaps because of our reluctance to face up to our own mortality, we neglect the needs of those nearing the end. That is to our shame.