End-life visits

Thousands of people have died because of the Covid-19 pandemic. Each number is a person who lost their life; each death was a loss for both loved ones and staff. On this page, you can listen to people speak about their experiences with end-life visits and their friends’ and family members’ death on the Intensive Care Unit (ICU).

This page covers:

  • Getting a call to come into hospital
  • In-person end-life visits
  • Virtual end-life visits

Getting a call to come into hospital

After an initial period at the start of the pandemic when only staff were permitted in hospital, family members were allowed to visit their loved ones in the intensive care unit (ICU) when their loved one was thought to be nearing the end of their life. Being invited to come into hospital was highly emotional and difficult for family members, as it meant that their loved one was likely not to survive. Elizabeth’s husband Alexander suffered kidney failure and a bleed on the brain whilst in ICU with Covid. A nurse called to ask Elizabeth and her two children if they would come to see him. Rani received a call from a doctor to say that things were not looking good for Nahied.

Doctors told Rani that her sister was unlikely to wake up from coma and asked her to come to the ICU.

Staff members from the ICU sometimes helped families make decisions about who would visit. Some family members were scared about the risks that visits to the ICU might entail for other family members who were vulnerable. Others chose not to go in because they felt it was too emotionally daunting or too risky. Deborah, initially, did not want her daughter to come to the hospital to see Shaun to protect her from being exposed to Covid. A doctor spoke to her and recommended that her daughter make the visit, as she felt Shaun may not make it.

Deborah was afraid to expose her daughter to the risk of Covid in hospital, but the consultant told her to come.

We spoke to an ICU nurse, Melanie, whose longstanding friend, Rhod, was admitted to the ICU in the hospital where she worked. Although she did not provide care for him directly, she could visit him, which she would otherwise not have been able to. For Melanie being close to Rhod in his last days of life was a privilege, especially considering that so many people could not sit by their loved one’s bedside at that time. However, she did worry about the responsibilities and burdens that came with these visits, such as informing others who could not be with him in person. That her roles as a professional and a friend became blurred and needed delineating was confusing and difficult for her.

Melanie was at work in the hospital when a consultant colleague asked to speak to her about her friend Rhod’s deterioration.

Hospitals allowed a restricted number of visitors on the ward for end-life visits (see also ‘Staying in touch during the visitor ban’). The number of visitors allowed varied, and some NHS Trusts were more flexible than others. When the number of people wanting to visit exceeded the maximum allowed, this could lead to difficult choices for families, friends and staff. Sadia recalled that her brother said she and their mum should go to hospital, should it come to that. Donna and her daughter received a phone call from her husband’s consultant asking them to come into hospital to see him. There were more than four of them wanting to visit, and they were allowed to visit in sets of three.

Her brother stepped aside to allow Sadia and their mother to go to hospital for an end-life visit. Thankfully, it did not come to this.

In person end-life visits

For many who went into hospital for an end-life visit, there was a mixture of difficult emotions. Most saw their loved one in person for the first time in weeks. Seeing a loved one in ICU is upsetting (see also Seeing the patient in ICU for the first time), particularly when they are close to death. Alisha felt happy that she was able to visit to her dying father in ICU, although at the same time, she found it “scary”: her father’s body had changed in such a way that he no longer looked like himself.

Alisha was asked to come to the hospital to see her father. Her mother came with her.

For most family members, this was the first time that they met staff members in-person. The doctors and nurses helped them prepare for what they would see. While many were comforted to see that staff had tried everything they could, hearing from doctors about what would happen next could be very distressing.

The consultant told Deborah and her two children that if Shaun would not respond well to being turned around, they would let him go quietly.

The people we interviewed described these end-life visits as surreal, daunting and traumatic. These feelings were enhanced by having to wear personal protective equipment (PPE) that included a surgical face mask, gloves and an apron, and the PPE limited touch and created a barrier between them and their loved one.

Some chose to be with their loved one when they were taken off life support; others preferred not to be. Some were not offered the choice and waited outside.

Elizabeth and her son chose to be present when Alexander was extubated. They stood behind a screen a form of infection control and could spend some time with him immediately afterwards.

Several of the parents who were present when life support was withdrawn alongside their adult children, felt they had to stay strong. Elizabeth wished that she had had some time with her husband alone to be able to say goodbye to him.

Elizabeth would have liked a few minutes with Alexander alone before he was extubated.

Some patients died whilst on full life support, such as Melanie’s friend Rhod. Melanie was able to sing Rhod songs as his family members were too vulnerable to visit, and sit with him when he died.

Melanie sang to her friend Rhod when he was dying. Only later did she realise her colleagues in ICU had been listening and the impact of her grief on them.

Although Melanie had already seen many patients die with Covid as part of her job, when Rhod died, the pain was personal. Melanie described her friend Rhod as “one of the many, but he was a special one of the many, because of those connections really.” Witnessing Melanie’s distress was hard on her colleagues and added to everything else that was going on in the ICU.

After death, family members often had the chance to spend some time with their loved one, without the machinery and without the time pressure.

Donna found it particularly difficult that she and her daughter were not able to touch or hold her husband Simon in his last moments. She found it difficult to know when to leave his side.

Donna found the end-life visit to her husband Simon traumatic, both for her and her daughter.

Several people found it helpful to speak to the nurses after their loved one had died. The hardest thing for Elizabeth, who has provided palliative and end-life care in the community, continued to be that she was unable to give this care to her husband: “I haven’t done any intensive care but I’ve worked in the community, I’ve done a lot of palliative end-life and that is something that I’ve always felt incredibly privileged. And I know it’s a different scenario but I struggled, really struggled, with the fact that what I’d given to other people I couldn’t give to my husband. I couldn’t be there for him.”

People were advised that, after returning home, they wash their clothes immediately, and in some cases, self-isolate for a number of days. They were also asked to take their loved one’s belongings on the day, rather than later. The hospital preferred it this way to minimise the contact between staff and family members. But, for family members, this was often difficult.

In the days after Alexander’s death, what had happened had not yet fully sunk in. Elizabeth could not unpack Alexander’s belongings that she had taken from hospital.

Virtual end-life visits

Some people were not able to visit in person. For instance, if they tested positive for Covid themselves and were self-isolating, or if they were shielding because they themselves were vulnerable. Some people lived too far away to visit when time was short at the end and there were often restrictions on travel.

Sometimes, deterioration happened so quickly that the only way to be with a loved one was via video call. When the doctor called Alisha and her mother, Rita, to say that, if they could, then it was time for them to come see Arjun (their father and husband), Alisha was still testing positive for Covid. So, Rita went to the hospital alone, and video called Alisha from the hospital. As soon as Alisha tested negative, she was able to visit.

Alisha still tested positive for Covid when the doctors asked her and her mother to come to the hospital, so her mother went alone and video called her.

When it was not possible to visit a loved one in ICU, people could contact loved ones through video or telephone calls, and, sometimes, letters. Health care teams supported all these ways of keeping in touch through iPads and mobile telephones.

Some family members called other family members when they were at the bedside of their loved one. While video calls were never a substitute for being present, in-person, but they could be both helpful and shocking for those family/friends on the other end of the call, particularly, if they hadn’t seen them for a long time.

During the end-life visit, Donna “Facetimed” her parents, who were shielding, to enable them to say goodbye to her husband.

When Arjun passed away, neither Alisha nor her mother could be in the hospital. They spent hours with him via video call before he died and afterwards.

One day after Rita and Alisha had visited Arjun in ICU, he died whilst his family member spoke to him via a videocall.

Enabling family members to video call their loved one when they were dying was also difficult for staff who were present with the patient and witnessed these emotional moments. That so many family members were unable to be with their loved ones at/near death, weighed heavily on family members, friends and staff.

In her role as an intensive care nurse, Melanie advocated for more family visits wherever possible within the circumstances.

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