It’s never easy to tell someone that their loved one is seriously ill and might not recover. When the conversation has to take place on the telephone, it’s even harder.
Yet this is something that has become very much part of life for many doctors and other clinicians – some of whom have virtually no experience in doing this, and all of whom are under extraordinary pressure.
But if the pandemic has shown anything, it’s that doctors flex and they adapt and even at the toughest of times, they are willing to share their skills and learn new ways of working. That’s been the case whether it’s involved helping patients to stay in touch with families while visits to hospitals and care homes are heavily restricted or breaking bad news about a patient’s deterioration.
Antonia Field-Smith, a consultant in palliative medicine, is one doctor who used her experience to help colleagues take on new roles as the pandemic began to grip. Having watched what was happening in countries such as Italy, she knew that her domain – end-of-life care – would become a bigger part of the role of medical staff from other specialties. And she wanted to help.
‘Obviously staff do look after dying patients, but not usually as many in a short space of time,’ she says. ‘We realised we would have to support the staff who were suddenly thrust into this world of dying.’
What she and her colleagues did was to take those years of palliative care experience and use them to develop a short guide to speaking to patients’ relatives. This gives a suggested framework for telephone conversations that make it clear to relatives that someone is seriously ill, giving them a chance to ask questions and ensuring they understand what they are being told.
Dr Field-Smith, who works at West Middlesex Hospital, part of Chelsea and Westminster Hospital NHS Foundation Trust, says it was all part of equipping the wider healthcare team to cope with increased levels of death among patients.
‘We made the guide because we wanted to rapidly upskill people in the hospital, because we could see that doctors and nurses and other members of the team were going to be needing to speak to families.
‘What we noticed is that staff are very good at talking to patients – they get a lot of training for that – but less so with relatives. I think that’s because a lot of our Western way of working is around patient-centred care – it’s about what the patient thinks, and getting permission from the patient to speak to relatives. But I think when people are dying, that shifts a bit.
‘Obviously the patient is always part of that bigger centre of care, but it affects the relative too. In palliative care we recognise that, but I think that’s harder for other doctors and staff to recognise and they don’t get as much training in that. Suddenly they’re having to do it over the phone and in this really stressful situation with all this uncertainty. I could see it in my own hospital and I saw on Twitter that a lot of doctors were saying they found those conversations difficult.’
She and her palliative care consultant colleague Louise Robinson prepared their tool – with the help of her film director brother Jim Field Smith – based on an Italian resource.
‘In our guide we had a few suggestions for what people could say, but it wasn’t prescriptive,’ she says. ‘It’s not about putting words into people’s mouths, it’s helping them find their own words, and as you get more experienced you find phrases that you can use.’
They were particularly keen to help doctors to convey the uncertainty of COVID-19 with patients’ families. ‘We have had a lot of patients where we have honestly thought they were going to die, and we’ve had to tell the family that we didn’t know which way it would go, and then they haven’t died. But we’ve had to share that uncertainty. In our experience, doctors and nurses find it difficult to talk about uncertainty – as do politicians. They don’t like to admit that they don’t know. So, a huge part of our guide was sharing this business of uncertainty.’
Listen to an interview with Dr Field-Smith
When they shared the guide on Twitter, the response was overwhelmingly positive, with many asking if they could use or adapt it. Dr Field-Smith understands why so many have felt a need for help, and uses the principles of the guide in her own practice.
‘I still think it’s hard, even though it’s my job and I’ve trained for many years, and I’ve had many difficult conversations and situations, and I still find it difficult. Having the guide, either mentally in my head, or next to the phone, and being able to refer back to that is helpful. There’s emotion there, obviously, and it’s just being able to think back about what I’ve said, have I reassured people, have I comforted them. We’ve all been thrust into this situation, with not a lot of time to prepare, and I find working in PPE [personal protective equipment] hard – we’re wearing the masks even when we’re talking on the phone on the ward, so it’s muffled as well.’
Staff look after dying patients, but not usually as many in a short space of timeAntonia Field-Smith
Along with having to break bad news, doctors have found themselves in the position of finding ways to keep patients in touch with their relatives, at a time when hospital visiting has been massively restricted. Across the UK at the start of the pandemic, this virtual ban on visiting (except in particular circumstances, such as a birth partner) included patients who were dying. Even though that changed, allowing a family member to make a short visit to someone at the end of life, this sometimes hasn’t been possible. Potential visitors cannot come to hospital if they themselves have symptoms of COVID-19, for example, and they have to be prepared to wear PPE to minimise risks to their own health.
Hospitals too have found it hard, particularly in intensive care units, where the infrastructure and type of procedures often make it difficult to admit visitors safely, meaning that many patients were dying without the presence of loved ones. In April, the Scottish Academy of Medical Royal Colleges, along with the Royal College of Physicians of Edinburgh, the Marie Curie charity and Scottish Care, produced guiding principles stating that patients judged to be dying of COVID-19 or anything else must receive equal access to visits from family or friends. RCPE president and geriatrician Andrew Elder says that looking to the future, health services must ensure people have the right to be at the bedside of a dying loved one.
‘It’s not simply a matter of infection control – these are matters of our humanity, matters that define who we are, our understanding of what life is, and how our lives must end. We can find ways to allow families to be together at this time.’
I’ve had many difficult conversations and situations, and I still find it difficult’Antonia Field-Smith
FaceTime in PPE
Sarah Simons, a clinical fellow in ambulatory care and emergency medicine at Whittington Health in north London, has been one of the many, many doctors trying to make this happen, by, for example, facilitating three-way FaceTime calls when relatives aren’t able to visit. This hasn’t been easy, she concedes, partly because patients often can’t talk, but also because using PPE makes communication difficult in person, let alone by phone or video call.
‘My trust has said that when someone is imminently dying, then one relative can come in, but that’s if they’re not ventilated or on respiratory support – they’re on an oxygen mask, maximum.
‘But it’s really hard as a junior doctor to call someone up in the middle of the night and say you’re really sorry but your loved one has died. That’s one reason I think that our consultant colleagues have stepped up massively and we have a team of local GPs who have come in to support us, and a lot of their job is family liaison. ‘That’s a dedicated job so while we are all running around wearing the PPE, they are keeping families informed and telling them what’s going on.’
Patients and families have, for the most part, accepted limitations on visiting, she says.
‘It’s been really hard but I think for the most part that people understand it.’
Dr Simons hopes that the pandemic will lead to a more honest public conversation about death and dying – but says it has been a difficult experience for all doctors.
‘Death is death. We all die. And as doctors, I don’t think it ever becomes normal for us, but we see good deaths, and we see less good deaths.’
COVID-19 has been different, she says. ‘It’s the scale, it’s the fact that there’s no treatment. The problem with COVID-19 is that it’s wildly unpredictable, so we don’t know who’s going to get sick and how, although we’re learning a lot. But it is the scale – it’s the fact that everyone in the ward has it, and we’ve had so many deaths of healthcare professionals, and not just deaths but people going off sick. We’re a pretty fit workforce, but this is something that’s taken down so many of us, which is different.
‘We need to protect ourselves as well. Anyone who is a healthcare professional wants to do that to help and to make people better. But we’re incredibly high risk ourselves, and although we’re doing everything we can to protect people, we need to protect ourselves as well.’
The absence of face-to-face discussions
While doctors are skilled at developing therapeutic relationships with patients and families, the pandemic has made this more challenging, says Julian Sheather, specialist adviser on ethics and human rights with the BMA
Communicating bad news, that a relative is unlikely to get out of ITU, is difficult at any time, but is harder when it’s not in person. ‘To have to do this in a mediated way presents greater challenges,’ he says. ‘It’s harder, there’s no question about it, without being able to look people in the eye, without being able to read their body language, or get a sense of where they are coming from emotionally.
‘There’s a sense that it’s harder to manage the impact of any statement that you’re making – it becomes more of a clinical transfer of information rather than a compassionate human exchange.’
This can lead to ‘moral distress’ in doctors, he says, because they feel they cannot act in the way they would wish to because technology can be a barrier.
‘The BMA is providing support for doctors to manage emotional distress, and this is a part of that. This is one factor of a highly stressful time, and it’s vital that doctors are given the support that they require,’ Mr Sheather adds.