Out of reach but never alone: how nurses are easing the pain of COVID-19 visiting restrictions
Nurses are rising to the challenge of keeping patients and families in touch, especially at the end of life
- Intensive care units have restricted patient visits during the pandemic to limit transmission of the virus to high-risk groups
- As nurses adapt to providing care while wearing PPE and observing social distancing, they are relying more on technology to communicate with patients and their families
- Tips on communicating with patients and their loved ones during lockdown, and offering emotional support at the end of life
Until just a few weeks ago, intensive care units (ICUs) were typically much less restrictive about visiting than other wards – it would have been unthinkable to deny relatives the chance to be at their loved ones’ bedside.
Now, as we all know, the world is changed.
Restrictions on visiting in ICUs are particularly difficult at the end of life
Although some hospitals are doing their best to make visiting possible, particularly at the end of life – indeed, England’s health and social care secretary Matt Hancock said in April that this should be done ‘wherever possible’ – the situation on the ground is that, in many cases, it simply isn’t happening.
This is having an immense effect on patients and their families – and also on nursing staff.
‘We need to restrict visiting on ICUs for obvious reasons, so we’re not routinely enabling families to be with their relatives,’ says chair of the British Association of Critical Care Nurses (BACCN) Nicki Credland.
‘We’ve got a highly contagious virus and there are many aerosol-generating procedures carried out in ICUs, which will enable the spread of infection much more significantly than in other places. ICUs also have the sickest patients that are most at risk, and the hospital staff that are most at risk, so we don’t want to increase that risk any more than necessary.’
Ms Credland, a senior lecturer and department head at Hull University, who has taken on the role of lead critical care nurse educator at the temporary Nightingale Hospital in Harrogate, acknowledges this situation is far from ideal.
‘Obviously if your partner or child or other family members are being cared for in ICU you want to be with them, and a lot of ICUs will usually have either open visiting or less restrictive visiting times than in other areas of the hospital, so it is an immensely difficult situation.
Nurses are taking on the role of the family and sitting with patients who are dying
‘As nurses, we feel responsible for looking after those patients when their relatives can’t be with them.
‘If a patient is dying on an ICU, the family would normally be with them. When families can’t be there, the nursing staff will step in and do what the families would usually do; you will always find a nurse or a doctor or someone sitting with that patient as they die, because that’s just how we all work. That adds an extra layer of stress on top of what is already an unbelievably stressful job.’
I’ve been quiet for a few days. Having some me time. A few days ago I faced my toughest shift. I held the hand of my dying Covid19 pt until the end, the family couldn’t be there so we used Skype through the pts ipad, so they also could be present. I’ve never felt pain like that.— NHS SISTER 🏥💙 (@Sister_Medicine) April 6, 2020
Although hospital visiting has been massively restricted for all patients, not just those who have COVID-19, in some places visiting is still possible, although it will be minimal. According to Sandra Campbell, a nurse consultant in palliative care with NHS Forth Valley in Scotland, it’s not clear-cut.
‘We’re about to see a tsunami of grief in the coming weeks and months and I think we’ll feel the ripple of that for many years to come’
Sandra Campbell, nurse consultant in palliative care, NHS Forth Valley, Scotland
‘There is a risk of people being infected – of course there is. But we have to balance that with the potential psychological trauma of not being with their relative and the risk of future post-traumatic stress.
‘We’re about to see a tsunami of grief in the coming weeks and months and I think we’ll feel the ripple of that for many years to come.’
Tips for communicating with patients and their loved ones in lockdown
Advice for nurses from Sandra Campbell, nurse consultant in palliative care at NHS Forth Valley:
- When talking to patients and relatives on the phone, acknowledge openly that you would not choose to deliver services in this way and you’d much rather speak face-to-face, however the circumstances mean you have to do it this way
- Understand that sometimes families will be upset or even angry In these circumstances use phrases such as ‘I’m really sorry’, ‘Nobody could have predicted we would be in this situation’ and ‘We wouldn’t choose to restrict visitors’
- Where you would normally touch someone, or otherwise be close to comfort them, say you’re really sorry you can’t do that, that in normal circumstances you would be doing things differently, and you regret that you can’t do what you would like to do because of coronavirus restrictions
- When having difficult conversations, don’t have a full script in your head, that wouldn’t sound natural, but be aware there are frameworks you can use, for example the SPIKES model for delivering bad news
- Establish the person’s understanding of the situation before moving on with the conversation, rather than going in ‘cold’
- Honesty is the best policy – but be gentle
Video calls can allow families to see patients and receive care updates
At time of writing, NHS Forth Valley is allowing relatives to visit patients who are at or near the end of life, but under restricted circumstances.
‘In normal care of the dying or end of life care, families would be allowed to stay as long as they wish,’ says Ms Campbell. ‘Because of the risk of infection and exposure, the time is limited now, usually up to an hour. That means the chances of someone being with a relative when they actually die is greatly reduced – they’re not sitting with them for hours and days as some families do.’
- RELATED: Challenges and facilitators in providing effective end of life care in intensive care units
People with dementia, a learning disability, women giving birth or those who need support can also have a visitor, Ms Campbell says, adding that this is in line with guidance from the Scottish Government.
‘We’re trying to minimise the distress caused by the circumstances, and the nursing teams are accommodating that as best they can,’ she says. ‘It’s very much case-by-case and the charge nurse will make the decision.’
When it comes to patients in intensive care, it is even more challenging, she concedes.
‘ICU is different, and decisions have to be taken on an individual basis because of the nature of the risk,’ she concedes. ‘The risk is increased for visitors and it’s more complex to accommodate them. But we’re encouraging the use of technology, including video calls, to help families make contact.’
Ms Campbell, whose strategic role covers both hospital and community settings, says NHS Forth Valley has been given 25 iPads from an Edinburgh investment firm.
‘That came out of the blue and was a fantastic gift,’ she says. ‘And in our care homes as well, the staff are doing a fantastic job with Skype and FaceTime, keeping people in touch.’
Overcoming the barriers created by wearing PPE
Nursing staff will support patients to use the iPads, she says, but this can bring its own challenges because they are wearing personal protective equipment (PPE).
‘That in itself can be a barrier,’ she says. ‘The mask becomes a barrier. Nurses are used to wearing gloves during procedures but not for all contact. Not being able to touch sometimes, for example during a very sensitive conversation. I suggest that they use phrases like “I’m really sorry that I have to wear a mask”.’
Difficult conversations to inform relatives that a loved one is dying, or has died, will also often take place on the phone – something that Ms Campbell says feels ‘alien’. ‘You would try as much as possible to have a face-to-face conversation but because of the circumstances, many more of these conversations are on the phone.’
Here’s a short guide to compassionate phone communication and sharing uncertainty during COVID-19 that myself and colleagues developed (thanks to @jimfieldsmith for design input). Please use and share widely. @WestMidHospital @ChelwestFT @drkathrynmannix #covid19UK #pallicovid pic.twitter.com/LjwLJikyUl— Antonia Field-Smith (@DrAntoniaFS) April 3, 2020
Giving bad news can be extremely difficult while observing restrictions
Ms Credland agrees PPE makes conversation tougher. ‘You can’t see each other, you can’t get facial expressions, it’s harder to hear what other people are saying. There are lots of complexities and it is far from even remotely ideal.
‘Having said that, we’ve got a responsibility to our patients, our families and our staff – we don’t want to put staff at any more risk than we absolutely need to, and they’re already at enough risk as it is.’
She understands that some relatives – particularly parents of younger people – might be desperate to be with patients, despite restrictions on visiting. But she has not heard of cases where families have attended hospital and become aggressive because of restrictions.
‘More often I hear about the difficulties of trying to explain complicated information or give bad news over the telephone or virtual system,’ she says.
Nurses are stressed, and families even more so
Ms Credland advocates openness and honesty, particularly when having difficult conversations with families. ‘It’s about putting yourself in the shoes of people you’re talking to,’ she says.
‘It’s hard for all of us when we get into extremely stressful and difficult conversations, in situations that are outside what is normal, to remember however stressed we are, the families will be even more stressed and upset.
'So it’s about taking a step back and thinking about what it is those families will remember most.
‘It will be the last things you said to them, so be very careful and very clear. Speak with clarity, use terminology that is easy to understand, make sure you speak with compassion, and make sure you tell the truth. You can’t go far wrong in most things if you do that.’
Community in lockdown – how social distancing affects end of life care
The lockdown regulations are also having an impact on nursing in the community – with patients either unable to see their families as they normally would or families coming to stay to support loved ones, especially when they are near to the end of life.
This brings its own challenges for nurses trying to follow social distancing guidelines, says Rosemary Russell, a Marie Curie community nurse who covers an area outside Belfast, and it can be devastating for families.
‘A couple of weeks ago I was visiting a house where the husband was very unwell with cancer and his wife was standing in the kitchen crying with me.
‘She was saying that her son couldn’t come in, that he talked to her through the window. She was asking how she was going to cope as her husband's disease progresses.
‘With social distancing, I was at the other end of the kitchen talking to her and I just had to say “I’m sorry, this is horrible. I am so far away from you”. It just seemed so unnatural, not to go to her.
‘He has since died, but where normally she would have had the support of family and friends going in and helping her, they couldn’t visit. So she was much more on her own.
‘It’s just so horrible. There were even silly things, like she said they’d had the heating on all day as they’d had the window open because people had come to talk to them through it.
'You want to be there and put your hand on them. You just have to acknowledge it and say this isn’t how we would normally do this.’
A special message from Nurse Rosemary after finishing her night shift 💛— Marie Curie NI (@MarieCurieNI) April 1, 2020
Please help us continue to provide care and support to terminally ill people in Northern Ireland by donating to our emergency appeal: https://t.co/ZO14WUreva
Thank you for your support. pic.twitter.com/1sb1NGx2zl
Reassurance to families unable to visit care homes
The Marie Curie nurses have also been asked to work in care homes during the pandemic. ‘I spoke to one of my colleagues who has done a couple of shifts this week and she says she spent a lot of the time with a patient who had COVID-19, doing video calls with family and reading messages, being that go-between,’ says Ms Russell.
'The patients she was allocated were very much at the end of life and she was keeping in touch with the families to tell them what was happening and to reassure them she was there, caring for their loved one, being with them so that they weren’t alone. That’s a challenge.'
Resources for nurses
- The British Association of Critical Care Nurses (BACCN) has made available free educational resources on COVID-19. You don’t have to be a member to access them, but you do have to enter your contact details
- SPIKES and RED-MAP are among the tools and frameworks available for delivering bad news and having difficult conversations
- Palliative care doctor Antonia Field-Smith and colleagues have made available a guide to telephone conversations specifically for use during the COVID-19 pandemic
Jennifer Trueland is a health journalist