Bereavement care in the intensive care unit (ICU) affects many patients and families (Berry et al, 2017). One in five patients admitted to critical care die during their hospital stay (Faculty of Intensive Care Medicine (FICM), 2019; Intensive Care National Audit & Research Centre (ICNARC), 2019), and global estimates of death in critical care range from 10% to 29% (Coombs et al, 2012; Society of Critical Care Medicine, 2021). The ICNARC estimated that admissions to critical care in 2018-2019 totalled 175 700 (ICNARC, 2019). Of these admissions, 22 069 (13.6%) patients died in intensive care, with a further 8126 patients dying before being discharged from hospital (ICNARC, 2019).
The Collins English Dictionary (www.collinsdictionary.com) defines bereavement as the sorrow felt when a relative or close friend dies. The literature states that losing a loved one in the ICU can be a traumatic experience (Kentish-Barnes et al, 2017a)—death in the ICU can be complicated, unexpected and traumatic, so the bereavement process can be complex, which may lead to unresolved or protracted grief (Kurian et al, 2014; Buckley et al, 2015; Beiermann et al, 2017). Furthermore, due to the nature of ICU and life-limiting illness, relatives may grieve before death (anticipated grief) (Intensive Care Society (ICS), 1998; Coombs, 2010). For relatives of a person who has died in ICU, this is an extraordinarily stressful event and can lead to symptoms of stress, anxiety, depression, post-traumatic stress disorder (PTSD) and prolonged grief (Lautrette et al, 2007; Siegel et al, 2008; Kentish-Barnes et al, 2015a; Berry et al, 2017; Kentish-Barnes et al, 2017a).
Caring for bereaved families is an important aspect of the nursing role in critical care (Mitchell et al, 2017), and advanced and proactive communication is a vital aspect of the care nurses provide in ICU (Lautrette et al, 2007). The plethora of interventions and strategies to support the bereaved, described in the literature, includes memorial services, condolence letters, follow-up meetings, written and verbal information, diaries, memory boxes, an ECG Memento (this is a printed ECG rhythm strip used as an object for memory making), use of music, cultural-specific practices and community support services (Valks et al, 2005; Cuypers and Delaporta, 2008; Holm et al, 2012; Coombs et al, 2017; Kentish-Barnes et al, 2017b, Johansson et al, 2018; McAdam and Puntillo, 2018).
A UK national audit exploring bereavement care found that 96% of ICUs gave written bereavement information, 53% provided training and 19% undertook their own audit (Berry et al, 2017). Just under one-third (27%) of ICUs did not meet ICS (1998) recommended guidelines for bereavement care (Box 1). There is also a lack of reference to bereavement care in ICUs in the Guidelines for Provision of Intensive Care Services (FICM, 2019), further highlighting the nonexistent focus on bereavement pathways or up-to-date recommendations in ICU.
Box 1.Intensive Care Society guidelines for bereavement care
- All intensive care staff should have access to training in bereavement care and in communication skills training
- Staff support programmes should be instituted to allow staff to understand their own responses to loss, allowing them to deliver bereavement care more effectively
- Information must be available to staff about cultural and religious rites around the time of death. Moreover, information should be accessible to staff about local services and groups that are able to help bereaved families
- Practical information regarding what to do after a death and the help available must be readily accessible to family members
- Efforts must be made to ensure the privacy of grieving relatives, and comfortable facilities should be provided
- The patient's GP must be informed of the death
- Facilities should be available to follow up bereaved relatives
- Each intensive care unit (ICU) must have a written bereavement policy, with provision for audit and continuing quality review
- A named member of staff should be responsible for training ICU staff in bereavement care. The person should also be responsible for writing, auditing and developing the bereavement care policy, as well ensuring the availability of information and liaising with local groups offering related services
Source: Intensive Care Society, 1998
The ICU in the authors' Trust is a 20-bed medical/surgical/transplant centre. A bereavement service was developed in 2016: this introduced a memorial service and a bereavement box and brought together critical care nurse specialists and psychological support. The bereavement box contains equipment that staff can use to promote bereavement care and memory making for families, creating a single resource and place where these objects are kept. The unit complies with the ICS (1998) guidelines, except on the issues of access to training and audit. Cambridge University Hospitals NHS Foundation Trust's policy on ‘withdrawal of life-sustaining care’ describes the withdrawal of treatment and end-of-life care (EOLC), but it only briefly outlines the expected bereavement care.
The bereavement box was developed by staff to support them in providing families with opportunities to create memories of their loved one. It can include fingerprints, handprints (which can be made into jewellery), locks of hair, two-part key rings, forget-me-knot seeds and electric candles (for ambience). Relatives are given an information booklet on what to do after the death and an invitation to a memorial service a few months after the event. The ICU runs a bereavement follow-up service with a consultant, to answer any questions the bereaved may have.
Aims
The main aim was to evaluate the service delivery of the bereavement care that is provided in a 20-bed general ICU. In addition, the study aimed to explore the experience of bereavement care currently provided in the ICU and to compare the findings with practice nationally and internationally.
Methods
A literature review was undertaken to inform the questionnaire. The review attempted to pool, summarise and interpret all empirical data (published and unpublished) in an inductive fashion, relating to the bereavement care of the critically ill patient and their relatives. A population intervention comparison outcome study strategy was adopted to refine the literature search question (Richardson et al, 1995; Liberati et al, 2009).
Articles were identified by searching Cochrane, EMBASE, Medline and CINAHL; snowballing was further applied in order to produce a comprehensive search and identify all available evidence (Liberati et al, 2009). The search procedure was underpinned by set eligibility criteria:
- Adult ICU OR critical care AND bereavement care
- Article written in English
- The study could be worldwide
- Dated after 2000.
Details of the search process and the results were kept in bibliographic software and summarised in a PRISMA (Moher et al, 2009) diagram (Figure 1).
Figure 1. PRISMA flow diagram for undertaking a literature review
The literature review and the experience of the authors led to the development of the questionnaire to gain insight into ICU staff knowledge, perceptions and experiences of bereavement care in the unit to evaluate the service provided.
It was considered that a questionnaire would provide insight into the level of staff knowledge, and their perceptions and lived experiences of bereavement care. Criterion validity was assessed prior to data collection. It was examined for content validity by three nurses and contained a demographic data question to assess roles, along with a series of open questions (Box 2).
Box 2.Questionnaire surveyThank you for taking your time to complete this short surveyThe aim of this survey is to gather insight and feedback from all those who work in the intensive care unit (ICU) about current bereavement care in the ICUBy proceeding you are consenting to your answers to be used in this service evaluation. If at any point you wish to withdraw your answers or have any further questions, please email Daniel.Harris@addenbrookes.nhs.uk
- Please select your role:
- Registered nurse
- Sister/charge nurse
- Senior sister/charge nurse
- Healthcare assistant
- Doctor
- Allied health professional
- Other (please specify)
- What does bereavement care in ICU mean to you?
- Have you participated in bereavement care in ICU?
- When you do think we should start talking to patient and family about bereavement care?
- What do you think bereavement care in the ICU includes?
- What bereavement care have you offered?
- Have you used anything from the bereavement box?
- Yes
- Unsure
- No (please comment)
- If you have used the bereavement box, what did you think? Any comments or feedback from the relatives?
- Is there anything we can add to improve our bereavement care in ICU?
- Any other comments or feedback regarding bereavement care in ICU?
* The survey was administered via SurveyMonkey
The questionnaire was introduced to all ICU staff by work-based email and staff WhatsApp/Facebook groups. All staff received a link to access the anonymous online survey. Staff who were willing to participate completed the bereavement questionnaire via SurveyMonkey. A reminder email and message was sent one week after. No incentives were offered for completion.
Ethics
This was a service evaluation and so it did not require formal research and ethical committee approval in accordance with local policy for clinical audit and service evaluation. In addition, no patients or their relatives were to be included in the sample and only those working in ICU were to be included. The service evaluation was registered with the Cambridge University Hospitals Service Evaluation and Audit Team, Ref. Number 2033. A participant information sheet was part of the introduction when using the online questionnaire: if participants proceeded to undertake the questionnaire implied consent was presumed. Responses remained anonymous and were all assigned a participant number.
Analysis
Qualitative data were extracted from the questionnaires verbatim. A six-phase framework (Braun and Clarke, 2006) was used to conduct a thematic analysis of all the questions in each category separately. All authors (DH, PP and LE) conducted the framework analysis and agreed on the final themes. The framework is valuable in identifying patterns, themes and offers a clear and practical guidance to ensure the credibility of analysis (Clarke and Braun, 2013; Nowell et al, 2017).
Results
There were 35 respondents from among 190 potential respondents to the online questionnaire, a response rate of 18.4%. The questionnaire was completed by 31 nurses, one allied health professional, and three participants were part of the medical team. The main themes identified across all the responses to the questionnaire were:
- Timing
- Care, dignity and respect
- Support
- Information and education
- Making memories.
Timing
Participants were asked at which point in care they thought that bereavement care should be discussed, and the general consensus was that the earlier the better. However, there was not complete agreement, with some responses highlighting the need to use an individualised approach, namely ‘read[ing] the situation’ (P18) versus pre-empting it, with others specifying that ‘it is good practice to inform all patients and relatives’ (P22) about the severity of the prognosis in ICU where death is a likely outcome. Two participants stated that they were unsure at which point bereavement care should be discussed. One pointed out that families may be experiencing bereavement, even though the patient is not ‘immediately dying’ (P34)— knowledge that the patients is living with a life-limiting disease starts the bereavement process.
One participant (P15) referred to national ReSPECT (2018) documentation, which supports early discussion with patients and families that death is a likely outcome. This participant suggested that ReSPECT documentation can be utilised as ‘a passport’ for patients' wishes.
There appeared to be confusion between respondents as to what constitutes bereavement care: one indicated that bereavement care means ‘after death’ and is the reflection of care given and experience shared (P1), while others suggested that bereavement care should begin before death.
Care, dignity and respect
Another area identified as a main theme was care, dignity and respect. It was clear that the patient's and their relatives' holistic needs, as well as promoting dignity, comfort and respect were at the forefront of staff priorities. The language used around the bereavement care delivered in ICU was powerful and positive, and ran across all the responses. For example:
‘… ensuring that patient[s] and their family have the best possible experience …’
Participant 4 (P4)
‘… honouring [their] wishes …’
P8
Another wrote that staff:
‘… allow family to participate in care, follow patients' wishes and provide time for staff to do so.’
P25
According to another respondent, bereavement care involved providing:
‘… support to patient and family, nursing care, looking at identifying psychological and psychosocial needs of the family, spiritual care.’
P14
Another respondent suggested that:
‘… bereavement care means that our objectives have changed from life saving to optimal care and comfort [while ensuring individualised, holistic care and respecting the patient's wishes].’
P22
Participants used strong language to describe the value of bereavement care, stating:
‘It is as important as saving someone's life.’
P6
‘… end-of-life care is just as important and valuable as active treatment.’
P34
There was repeated evidence that staff were passionate about providing bereavement care and that the topic was clearly emotive.
Support
The importance of supporting family members during a patient's final hours of life, creating memories and allowing family members to be actively involved in the process, if they so wished, was made apparent by many participants. They indicated that it was crucial to support patients and families emotionally, spiritually, as well as physically, highlighting:
‘… individual support, psychological support … pamphlets.’
P3
‘… support from the bedside team of doctors and nurses, ICU psychologist … comfort care for the patient … making the situation as least stressful as possible for all involved.’
P34
Such support helps relatives to accept and deal with the death, allowing them to grieve and understand what to do next. It also offers them the opportunity to discuss things, give information and to attend the memorial service.
A strong theme of offering support and referring to expert colleagues, such as palliative care specialists and the chaplain, ran through many responses, with one mention of ‘counselling and hospice care’ (P13).
Information and education
Information was another key theme, highlighting the need for more education and teaching about the subject of bereavement care. Respondents commented on the need for ‘further staff education’ (P9) and:
‘more information about death wishes for different cultures.’
P1
Supporting the need for education, one participant stated:
‘I think a lot of staff are very uncomfortable with it, as [staff are] not sure of what support is there for them.’
P11
Doctors specified that they offered ‘family discussion’ (P15) and ‘bereavement follow-up meetings’ (P10). Information giving was also an area that was evident throughout all the responses, with P4 stating: ‘… able to give information about what happens next.’
Making memories
Making memories was a thread that ran throughout the participants' responses. Specific interventions such as the use of the bereavement box and making memories (handprints) were mentioned by five respondents. Three discussed the memorial service and follow-up care. Many respondents listed very personal interventions, such as:
‘… offered families keepsakes after the death of their loved one, such as fingerprints and locks of hair’.
P21
Many of the staff had used memory boxes. Four specifically mentioned supporting young children. P27 had arranged two weddings and had also arranged for pets to visit, demonstrating the individualisation of care and an attention to detail.
Most respondents (76.5%; n=26) had used the bereavement box and described the positive experience of doing so. None of the doctors had used the bereavement box, one indicated:
‘I don't feel that this is the role of the consultant.’
P15
Another doctor answered that it was ‘not relevant to my role’ (P11). In addition, one participant highlighted their experiences, saying that ‘sometimes families [don't] want anything’ (P9). Another simply stated: ‘[I] don't like using it’ (P7).
A total of eight respondents reported receiving positive feedback from families and three specifically mentioned using the children's resources. Two commented that the bereavement box needed more supplies. Another participant (P28), in response to question 8, stated that they ‘don't like using it’, but provided no explanation as to why.
Discussion
This service evaluation has highlighted the complexity of bereavement care and the improvements required. It was apparent from the responses that the care delivered in the ICU is dignified and respectful, and is in accordance with the national and local guidelines for EOLC and bereavement care (General Medical Council, 2013; Health and Care Professions Council, 2016; Nursing and Midwifery Council, 2018; National Institute for Health and Care Excellence (NICE), 2019).
Providing support to families, patients and staff (emotional, physical and spiritual) was deemed to be a vital aspect of bereavement care. This is supported throughout the literature (Mosenthal et al, 2008; Kurian et al, 2014; Kentish-Barnes et al, 2016; Beiermann et al, 2017; Johansson et al, 2018). Simple and small acts, as discussed by Kentish-Barnes et al (2017b), enabled the bereaved to feel supported, for example when they had received a condolence letter.
On the topic of information giving, respondents specified the importance of providing leaflets, signposting services and offering appropriate verbal information. This is in agreement with Beiermann et al (2017), who reported that information giving was a highly valuable aspect of providing spiritual and emotional support; their study also indicated that families required logistical guidance around funeral arrangements and support groups. Staff rated highly bereavement follow-up in the form of a memorial service or a follow-up interview and were happy to raise the subject with families, indicating that it helped to offer closure—and this is supported in the literature (van der Klink et al, 2010).
The final key theme centred on the process of memory making. Many of the examples provided in the responses demonstrated pride and a sense of achievement at offering individualised care, such as bringing pets into ICU, arranging weddings and taking people home for the day on a ventilator. There is a growing body of evidence, supported by the palliative care movement, that the use of objects allows a bond to be formed with the deceased and aids the bereavement process (Beiermann et al, 2017). The staff used hand prints, key rings and took locks of hair with families at the bedside to create such a bond. However, it was noted that such actions were not appropriate for all families.
Klass et al (1996) recognised the importance of a continuing bond with the deceased as a means to honour the lost relationship while also moving forward with life. This is a key issue in ICU bereavement care because grief and loss can be complicated. Memory making with families is a relatively new aspect of bereavement care being introduced to the authors' ICU, but one that will need to be carefully monitored and audited. Thus, making memories in ICU, which can be appropriate for some bereaved relatives, is not applicable in every case—and the same applies to staff.
Bereavement care is an integrated part of the EOLC strategy (NICE, 2019), which describes it as taking place after death. However, according to respondents to the survey, bereavement care should be discussed before death. There was consensus that approaching a family at an earlier stage rather than later was better, with emphasis being placed on an individualised approach and reading the situation.
Access to information that is easy to understand and appropriate to an individual situation can reduce anxiety, as well as enable and empower people to cope more effectively (McAdam and Puntillo, 2018). People often feel most powerless and vulnerable during a time of bereavement when they do not understand and have little information, as identified by Lautrette et al (2007). Their findings showed that providing the relatives of patients who are dying in the ICU with a brochure on bereavement, using a proactive communication strategy and encouraging family members to talk may help lessen the burden of bereavement. In Lautrette et al's (2007) study those who received a proactive communication strategy had a significantly lower prevalence of PTSD-related symptoms and fewer symptoms of anxiety and depression. Early discussions may also lead to preparing occasions and rituals for remembrance.
As more complex disease processes are manifesting in younger adults, ICUs are having to support their children at the bedside through the bereavement process. As highlighted in the results of this study, staff found this difficult and required specialist input and indicated that more education and training are needed:
‘[I have] contacted PICU in how to support children during the bereavement process.’
P32
Participants found it difficult to differentiate between bereavement and palliative care, and their roles within this domain of care. The ICU consultants' role in bereavement care principally goes hand in hand with EOLC, where the main concern is the patient, with consultants having EOLC discussions often providing bereavement information on what happens next. This leads to bereavement care after the death of the patient: after the medical team has issued the death certificate, they may hold discussion with the family, should they wish to clarify any aspects of the care provided or the patient's condition leading to death. In addition, consultants will attend bereavement meetings with the family 1-4 weeks after the patient's death, if the family accepts the invitation. Many bereaved consider that a follow-up bereavement service helps them to deal with the death of their family member, providing a way to have any remaining questions answered (van der Klink et al, 2010).
The service evaluation reported in this article has highlighted areas that require development. Although plans to introduce a series of bereavement educational sessions, which would include children support in ICU, are currently on hold due to COVID-19, the authors are in the process of designing a study day for ICU staff. In addition, the unit could review its bereavement policy and ensure that there is easy access to information about specific cultural and religious rites and support groups. It would be pertinent to evaluate the effectiveness of the unit's memorial service and the impact of the bereavement box on families. Patient involvement groups are powerful and insightful; however, due to ethical reasons, it is very difficult to engage with bereaved families.
Study limitations
This service evaluation used an untested questionnaire, so the methodology could be considered to be flawed and biased because the questionnaire and study were both designed and implemented by the authors. Limiting the literature review to include articles published in English only might have introduced some degree of language bias, missing articles written in other languages (Centre for Reviews and Dissemination, 2009). To gain insight into ICU staff 's true experiences it may also have been beneficial to include interviews or focus groups to gather richer data as part of the study.
Only health professionals were invited to respond to the questionnaire survey. Including families in bereavement research is important, for example Kentish-Barnes et al (2015b) argued that this should be done in order to improve the care provided by health professionals. If the study were to be repeated, powerful information could therefore be gained by interviewing bereaved families, which would enhance the data, although the highly emotive nature of a death would need to be carefully considered.
This was a single-centre study with a small sample and a low response rate, with an uneven split of health professionals. These factors mean that it would be difficult to extrapolate and apply the findings elsewhere, so they should be interpreted with caution.
Conclusion
This service evaluation explored and identified different aspects of bereavement care delivered in the authors' ICU. The five main themes identified were:
- Timing
- Care, dignity and respect
- Support
- Information and education
- Making memories.
It was clear that a good holistic multidisciplinary approach is key to providing care, and that it is vital to provide support not only to the patient but also to the bereaved family, friends and children. Most participants made clear that their aim is to deliver holistic care, yet some found this difficult for a range of reasons. There was a clear indication that doctors participated in discussions following a patient's death and answered questions of the bereaved families, but this appeared to be the limit of their bereavement care.
Participants described the different interventions they used as part of providing bereavement care, notably making memories. The bereavement box received high praise and all three critical care areas of the hospital have now implemented the same bereavement box, offering equal access to bereavement resources. The contents of the bereavement box, as developed in the authors' ICU, could be used in other ICUs both locally and nationally.
KEY POINTS
- Losing a loved one in the intensive care unit (ICU) can be a traumatic experience
- Dignity and respect, support, information and memory making emerged as themes that are imperative in bereavement care
- The survey showed that nurses and other health professionals used a range of interventions to support families: memorial services, condolence letters, follow-up meetings, diaries, the use of written information, memory boxes and support services
- This paper describes the interventions utilised and evaluates health professionals' perceptions and feedback from relatives about these
CPD reflective questions
- What bereavement practices do you apply in your unit?
- How do you think bereavement differs from a death that occurs in an area other than critical care?
- How would you feel about delivering some of the interventions described in this article?
- What bereavement practices can you take from this and implement in your area of practice?