With more people waiting longer for hospital referral and treatment since the start of the Covid-19 pandemic, and more people dying at home, the pressure on palliative and end-of-life care services has increased. Kathy Oxtoby reports on how nurses have been responding and adapting to new ways of working.
‘The Covid-19 pandemic has meant a very different way of working for us. But our focus has never shifted from ensuring every single patient experiences a “good” death.’
Parveen Akhtar, a senior specialist practitioner in palliative and end-of-life care at Guy’s and St Thomas’ NHS Foundation Trust, is reflecting on how even during times of extreme pressure, she and her colleagues have been determined to fulfil the wishes and needs of those in their care. She says this has sometimes involved working late into the night ‘because it’s not a job you finish at 5pm and hand over’. It has also meant coping when team members have been isolating, and delivering emergency care to patients when those services have been unavailable. These experiences will be familiar to nurses across the UK, who have been providing end-of-life care to many more patients in the community. Before Covid-19, Ms Akhtar and her team would see a maximum of 25 deaths in a month; during the pandemic that figure has risen to around 70. And Queen’s Nursing Institute chief executive Dr Crystal Oldman is hearing from members that demand for palliative and end-of-life services is 50% greater than before the pandemic hit.
A bleak time
Ms Ahktar says during the first wave, when so little was known about the virus, her team was ‘crisis managing most of the time’. This included supporting and advising community and care home nurses, assessing patients, prescribing medications and breaking bad news to families.
It was ‘a very bleak time’, she recalls. ‘Emotionally it was hard but we’re a resilient team. We know each other’s weaknesses and strengths, which really helped. We made sure we talked to each other about our day and we supported each other.’
The high numbers of patients needing end-of-life care, particularly during that first wave, meant nurses only got to know some of their patients at the very end of their lives.
‘Normally we build connections with patients,’ Ms Akhtar says. ‘Giving end-of-life care without knowing the patient was hard.’ By the second wave, though, caring for new patients was a familiar scenario and had become ‘second nature’.
Queen’s Nurse and PhD student Ben Bowers returned to practice for three months as a community palliative care nurse during the first wave of the pandemic. At that time, he says, much of the care had to be ‘rapid and reactive’, as patients were very ill by the time they were referred to specialist palliative care. ‘Working in this specialty, it puts you on the back foot when you’re not building relationships and trust over time with patients and families.’
According to the Office for National Statistics, there has been a substantial rise in the number of people dying at home during the pandemic, although most of these excess deaths did not involve Covid-19.
Diagnoses delays by Covid fears
Dr Oldman says there has been an increase in palliative care at home rather than in hospices or hospitals because ‘people are concerned their loved ones can’t visit them’. This has placed additional demands on district and community teams as well as on specialist nurses.
QNI members delivering care in people’s homes also report seeing patients at a more advanced stage of their illness than normal. They say some have been too nervous about contracting Covid-19 to visit emergency services or their GP, meaning their conditions have been diagnosed later than might otherwise have been the case.
Nurses have needed to adapt and change the way they communicate with their patients. Ms Akhtar says she ‘really misses being able to hug patients and families’, and finds it hard having to wear a mask that hides her facial expressions. ‘Fortunately, we now have lanyards with pictures of ourselves so that patients can see the faces behind the masks. It breaks the ice a bit and makes us feel a little bit more human.’
Delivering bad news may need to be done while wearing a mask or by phone, ‘so we’re learning different communication skills’, says Mr Bowers.
Limitations of remote consulting
As with other healthcare services, palliative and end-of-life care has seen a rise in remote consultations via phone and video, as highlighted by the recent primary care survey, Community end-of-life care during the Covid-19 pandemic.
These new ways of working do have limitations. A study by Macdonald et al. (2020) found remote consultations inhibit clinical examination and limit potentially important insights gained during face-to-face home visits. Ms Akhtar stresses the importance of being able to support dying patients in person, and points out that not all patients and their families have access to, or the ability to use, remote technology.
While more is now understood about Covid-19, the challenges faced by end-of-life services throughout the pandemic show little sign of easing. ‘Demand for palliative care has increased and it has also increased in intensity,’ says Dr Oldman.
She adds that, for nurses in the community, the work has been ‘really challenging, emotionally, physically and mentally’, and this needs to be acknowledged. ‘We need to recognise these nurses’ expertise so we don’t lose them,’ she says.
Ms Akhtar is concerned nurses new to the profession and to end-of-life care have not been getting the necessary face-to-face training. Remote training, she says, makes it harder for teams to share their personal insights into death and dying, while shadowing staff has also been limited due to Covid-19 constraints. ‘We’re going to have inexperienced nurses on the front line, and if they have a bad experience they may just leave,’ she warns.
But as well as these difficulties, the pandemic has brought opportunities for nurses to develop their skills and build on their experiences. With the shift to more palliative care at home, nurses have needed to be ‘really creative to find solutions so their patients have the best possible experience of care’, says Dr Oldman.
The past year has shone ‘a real spotlight on what nurses in the community can do, and the knowledge, skills and expertise they have’, she says. And she hopes the years ahead will bring greater understanding of this expertise, and recognition of community nurses’ essential role in delivering care at the end of life.
Given the ongoing pressures, Ms Akhtar reminds nurses it is important to ‘seek help if you’re feeling overwhelmed. There are challenges out there but it will get better. You’re not on your own.’
Case study: ‘There’s a lot of people grieving out there’
‘My role within Saint Francis Hospice specialist and crisis support team is to provide specialist palliative care, along with the hospice’s medical team, in preventing crisis admissions to hospital during the pandemic. The hospice’s “at home” team has been visiting patients whose preferred place of death is home, or giving support until a bed is available in our inpatient unit.
‘I provide symptom control and support for patients at home, liaising with GPs, district nurses and hospital teams as the community link to bring care together. The community focus has always been about working together, but the pandemic has increased the intensity for all of us. We’ve been working in a more joined-up way, and I hope improvement in communication will continue.
‘Where appropriate, patients are choosing hospice admission over hospital care, or remaining in the community for symptom control and end-of-life care because they are worried about the virus and visiting restrictions. More than ever, the need for proactive intervention is vital – the service is pressurised, with increased referrals and the struggle to keep support going.
‘I’ve been ensuring anticipatory prescribing of certain medications is available, and utilising the skills of relatives to provide symptom relieve with oral medications, while having the availability of injections for professional administration.
‘I’ve been offering support over the telephone for patients and relatives, which has increased. Some of the phone calls are heartrending, with sadness pouring out from patients and families due to the distress and difficulties they’re experiencing.
‘There’s a lot of people grieving out there, suffering loss, and the hospice team members have reached out to as many as they can. As health professionals, we also need to look after our own mental health, and we talk to each other openly about our feelings.
‘I feel very privileged in my role. It’s not the medications and symptom control, it’s the compassion that patients and families remember – that someone was able to give them the time to listen.’
Julia Bryan is a clinical nurse specialist at Saint Francis Hospice in Romford, Essex.
Demand for palliative care has increased and it has also increased in intensity
QNI chief executive Dr Crystal Oldman CBE