Contact between partners/families and clinical staff

When family members could not visit, staying up to date with how their loved ones were doing became the most important daily activity. Because patients in the intensive care unit (ICU) were very unwell or sedated, they were often unable to use their phones (see also ‘Admission to the ward-when a loved one no longer responds’). This meant that family members depended on doctors and nurses to update and share information with them.

Below you can listen to family members as they talk about:

  • Organising communication between home and hospital
  • Receiving calls from the ICU
  • Calling the hospital
  • Family liaison/family communication team

Organising communication between home and hospital

For hospital wards and ICUs across the NHS, the Covid-19 pandemic required a radical shift away from the standard ways of communicating with family members, and presented significant challenges. Staff had to change the ways they communicated with family members.

What is the role of family members on the intensive care unit? How have relationships between staff in ICU and family members chanced due to Covid19?

For family members at home it was important to be informed how their loved one was doing. Previously, staff could update family members on any changes in their loved one’s condition when they came to see them on the ward, whilst going about their work. Bad news would never be broken on the phone if staff could avoid it. During the Covid-19 pandemic, with patient numbers higher than usual and family members absent from hospital wards (due to the visitor ban), communication with family members became an additional task for staff. Bad news had to be shared over the phone, often when staff members and family members had never seen each other face to face. For staff this was significant extra workload. The absence of family members from the ward and these new ways of communicating were also seen as a source of mental distress to staff.

In the absence of organised ways of communication between hospital staff and family members in the early days of the pandemic, the family members we spoke to felt cut off from their loved one, isolated, disempowered and desperate for information (see also ‘Staying in touch during the visitor ban’). Calling the hospital was the only way to gain a sense of how a loved one was doing, and a way to care at a distance. Due to staff redeployment it was near impossible to establish relationships with specific staff members. Dana counted up the 24 doctors and 64 nurses she spoke to during her husband’s admission.

Calling the hospital was the only way for Dana to look after her husband.

After the initial phase when many hospitals were still working out how best to update family members at home, individual NHS trusts quickly developed more structured ways to do so. Communication between home and hospital took three forms:

  1. The doctors and nurses on intensive care ward phoned the family members,
  2. Family members phoned the intensive care ward
  3. In some hospitals, a so-called ‘hospital liaison team’ or ‘family communication team’ phoned family members and answered incoming calls.

Whilst communication over the phone was of crucial importance for family members we spoke to, key aspects of communication got lost. For instance, Dana found it hard to hear nurses if they were in full PPE and calls were often short and “really harsh”. Mike found it difficult to understand doctors with a strong accent when he was unable to see them.

Designated contact persons

In an attempt to ensure clinical staff had as much time as possible for patient care, family members were often asked to nominate one individual to be the contact person to receive information from the hospital and ask questions. This person could be the partner, a child, a sibling, or another family member. Some volunteered themselves, other families chose to volunteer the closest relative who had a medical background, as they would have a better understanding of what the doctors were saying and pass information onto others.

Shireen’s son was the designated contact person for the doctors, as she felt his training as a GP gave him the appropriate knowledge to understand what was said.

Of course, when doctors called, members of the same household could huddle around the phone and be part of the call. Deborah described that whenever she phoned the ICU, her daughter would be on another line “so she could listen in … and ask questions.” For Elizabeth and Deborah taking these calls while in the presence of others was an additional worry, and they tried to ‘keep it together’ to shield those close to them from their own emotions.

Being the designated contact person in a family came with the responsibility of passing information on to others. Some asked those they called to “cascade” this information to other family members and friends. Michael’s sister had a WhatsApp group where she updated the transnational family, which he described as the “daily press release”. Emma’s husband also had a WhatsApp group:

Emma’s husband passed updates from the clinical staff on to other family members, and asked questions on their behalf.

Elizabeth and Donna found passing the information to others a big responsibility, as it involved managing the hopes of others as well as their own. This added to emotional strain to an already difficult situation. For others, having to take calls from the hospital became too much, so they asked others to step in.

Donna had many messages from friends and family who were wanting to know how her husband was doing.

Speaking to doctors and nurses

Doctors and nurses had different kinds of information to share with family members. Doctors called when there was a significant change in how somebody was doing, when a decision needed to be taken, and to ask family members to come in for a visit if they felt a patient was approaching the end-of-life. Nurses called family members for the daily ICU update, details of the oxygen levels and other medical indicators, and to learn more about how they could personalise their care (see also ‘Caring at a distance’).

Stephanie got a call from doctors when Peter was really poorly, but mostly talked to nurses about technical information.

In the absence of other information, some family members tried to deduce whether things would be serious from who called and the timing and frequency of calls. Donna and others noted the use or absence of particular words in the phone calls with doctors.

Deborah inferred how serious things were from which type of doctor rang her.

Sadia, Nahied’s sister and others described the honesty with which doctors and nurses shared information. While this was sometimes hard to take, on the whole family members really appreciated it. Nahied’s sister recalled that doctors were “really honest. … Not hiding anything from us. [They were honest] about her health, when they were talking to me, regarding her lungs, her heart, they were just telling me straightaway, that’s our plan, this is the medication we are trying. She’s not responding to the medication, so we’re going to try something else.”

Speaking face-to-face allows clinicians and family members to establish a relationship and a sense of trust. But without being able to visit and witness changes in their loved one’s condition first-hand, some family members found it hard to relate to what clinicians were telling them over the phone, especially as changes often could happen frequently and suddenly. This was stressful for both families and doctors. Sadia felt that messages from clinicians inconsistent, and that clinicians communicated treatment decisions in a harsh way.

Sadia found the messages from clinicians “very inconsistent” and “harsh”.

Not all family members were unfamiliar with the doctors they spoke to. Some had been hospitalised previously and encountered staff members they knew during their ICU admission with Covid. It was often helpful to know that somebody who had met their loved one at a time when they were not sedated. Deborah was glad that her husband’s haematologist was involved in his care, saying: “I always felt more comfortable with the fact that his haematologist was there, as well as his intensive…I felt like all bases were covered. … The fact that his haematologist knew him, and, you know, knew the holistic person, not just somebody that’s come in … because you don’t get to know them, do you know what I mean?” To make up for this lack of knowledge, nurses frequently called family members to get to know their patients (see ‘Sending pictures and audio to support nursing care- Caring at a distance’)

Calling the hospital

In addition to these routine calls from hospitals, many of the people we spoke to called the hospital themselves, often a couple of times a day. For Sadia it was important to learn about her father’s oxygen levels, and she contacted the nurses regularly for updates (such as his oxygen levels, known as saturation levels, or ‘sats’). Donna also called the hospital to learn about her husband’s sats, because her medical trained family members were asking for them, but she eventually found it more helpful to focus less on the numbers and more on how he was doing day to day.

Sadia called the ward to learn more about her father’s oxygen levels.

Dana and Elizabeth described how calling the hospital became a sort of ritual in a day otherwise characterised by uncertainty and anxiety (see also ‘Uncertain survival’).

Elizabeth started her day by calling the ward to hear that her husband was ok.

Many were mindful not to ring too much, and some felt guilty about calling, knowing how busy staff members were. Many also tried to time their calls to fit into the hospital routine of shifts and handovers. Dana, for instance, got up at 6 a.m. to try a catch nurses at the end of their shift.

Family Liaison services

Some hospitals developed family liaison services or family communication teams. These teams were commonly made up of medical students, retired consultants, and redeployed non-ICU consultants. They made daily phone calls with family members of patients who were in ICU, aimed at providing daily medical updates, asking family members to share the patient’s social and medical history, and to facilitate video calls between patients and family members. Communications by liaison teams were really appreciated by family members. For families of patients who were moved between hospitals, the differences between hospitals that were staffed sufficiently to set up such services and those that were not, were particularly notable.

When Victor was moved between hospitals, the impact of staffing on communication with family became particularly apparent to Paula.

Some family members we spoke to found the service invaluable, although sometimes felt they could not help with all the questions they had. Kate, whose husband was in hospital for two weeks in April 2020, felt the people on the service could not provide her with the “soft stuff” she was looking for., Although she felt that staff had done their best at the time, It was difficult for Kate to feel that things were not good enough. That a consultant on ICU took time to listen was really important to her.

Kate felt that the liaison team could not provide what the ICU doctors could.

Caring at a distance

With visiting restrictions in place in almost all NHS trusts, family members were not able to be with their loved one in hospital. Without visitors,...