Greater pressure on hospice care for patients at home as second lockdown begins

“When I start my shift after two days off and realise all my patients’ names have already gone from our whiteboard, that’s when it really hits home how much more quickly people are dying now because of the pandemic. It’s utterly heart-breaking.”

With the country entering its second national lockdown this week, a healthcare professional from St Luke’s Hospice Plymouth, who knows first hand the impact the pandemic is having on not just lives but deaths too, has shared how it feels to be part of the local charity’s dedicated workforce carrying out their vital service for terminally ill patients and their families while cases of the virus continue to rise.

As a Healthcare Assistant with the Urgent Care Service run by St Luke’s in partnership with Marie Curie, Selina Rogers is used to dealing with death. She and her colleagues choose to work in the challenging environment of hospice care because they understand the difference their specialist skills, and their kindness and sensitivity, make to terminally ill people at the end of their lives. What has changed over recent months, though – and increased the emotional toll on this resilient team – is the speed at which their patients are dying.

Between them, Selina and the rest of the team, which as well as her fellow healthcare assistants includes doctors, nurses and bereavement support workers, cover Plymouth and surrounding areas and are out on the road seven days a week looking after patients at home during a period of change in their condition or a crisis. It is what they do to make the community a kinder place for people who are dying and for the loved ones around them. It also reduces unnecessary admissions to hospital, relieving pressure on the NHS.

This provision from St Luke’s, which is so essential to making their patients more comfortable – managing their symptoms and putting them and their loved ones as at ease as possible – is given by the charity at no cost to those who receive its personalised care and support. The Urgent Care team is continuing to meet the increasing demand for specialist end of life care at home, despite St Luke’s experiencing loss of income with its charity shops being forced into closure for much of this year and its popular mass participation events, such as Midnight Walk and Men’s Day Out, postponed until safer times, in accordance with government advice.

Selina said: “We see a lot of death in what we do, but during this last six to seven months there’s been more than ever. I don’t mean people who’ve died from COVID-19 but those with conditions such as cancer, motor neurone disease and heart failure.

“We can lose four patients just in one day – that’s around what we’d usually expect in a week. We can finish a shift and have our two days off, come back to work and see patients’ names that are all new because those we’d looked after on our previous shift have already died. I find that incredibly tough.

Explaining more, Selina said:  “I think it’s because we’re getting our referrals in later and people are dying a lot sooner. It’s almost like crisis intervention – in many cases, we’re going in the last 24 – 48 hours of their life and making sure they’re comfortable.

“We think it’s in part because many people haven’t been going for routine appointments at hospitals either because they’re scared it’s not safe during the pandemic or because they’ve not wanted the NHS to feel any more stretched than it already is.

“This time next year we’re likely to see even more deaths because people aren’t having the treatment they need. That’s why I want to echo what the NHS is telling everyone, reminding people just how important it is for them to keep their appointments, and if they feel unwell or notice anything out of the ordinary in terms of their health, to talk to their GP.”

As she and her colleagues brace themselves for working throughout another lockdown to reach the many people who need their compassionate care at home in their last days of life, Selina said: “It can feel really challenging looking after people who are so poorly, but we never shy away from it and the pandemic has not – and will not – change that.

“It is very special to be almost be part of a patient’s family during such a vulnerable time. I feel privileged that in my role I can give them not only practical support but be a reassuring presence that reminds they don’t have to go through it alone.

“Another important part of what we do is preparing them for what’s going to happen, getting the balance right between being gentle but not sugar-coating the truth because it’s crucial to be honest. These are not easy conversations to have but in my experience families appreciate that openness and feel relief that they can share whatever they’re feeling with us.

“What I do miss since the pandemic started though, is being able to give them a hug when they need it. We can’t because we all have to respect the safety measures that help keep everyone safe from the virus.

“Just this week, I was with a lady who sadly died while our team was there. Her husband was heartbroken yet I couldn’t put my arm around him the way I usually would – it’s instinctive when someone desperately needs that comfort and it feels really alien and frustrating not to. I just rested my hand on his shoulder and hoped he could see in my eyes how much I care because of course the masks we wear as part of our PPE make it harder for people to read our expressions.”

“What helps me at those times is feeling I’ve done all I can to make such a difficult time that little bit easier for families and knowing St Luke’s bereavement team will be there to support them as they grieve, the comfort blanket they need as they gradually come to terms with their loss.

“Going into this second lockdown is tough on everyone and particularly challenging for people affected by terminal illness because they might be feeling more isolated or anxious. I want to reassure our patients, their carers and their families that St Luke’s will continue to be there for them.

“I also want to thank everyone who supports our charity because it makes such a difference. I’ve been so touched by the way the community has kept us close to their hearts despite the pressures they themselves are facing.

“There doesn’t seem to be any slowing in the higher number of deaths at home and our service will be needed more than ever in the months ahead, so everyone’s kind words and thoughtful gestures really help all of us at St Luke’s dig that little bit deeper to keep going for our patients, whatever this pandemic throws at us.”

The Urgent Care Service is a partnership between charities St Luke’s Hospice Plymouth and Marie Curie.

Working closely with district nurses, GPs and health and social care agencies, the team ensures high-quality, co-ordinated and compassionate care and support for terminally ill patients who need a high level of specialised care at end of life and want to be looked after at home.

The service reaches across Plymouth and into the surrounding areas of South West Devon, including Salcombe, Kingsbridge, Ivybridge, Tavistock and the Moors.