Communication

The challenges of communicating with patients in ICUs who are at the end of their lives were highlighted in the studies in this literature review, particularly in relation to patients in ICUs often being too unwell to engage in decision-making (McCormick et al 2007, Friedenberg et al 2012). Communication difficulties may lead to unanswered questions about patients’ wishes regarding their end of life care (Crump et al 2010, Zomorodi and Lynn 2010, Losa Iglesias et al 2013). In Friedenberg et al’s (2012) study, 67% of doctors stated that patients not being able to take part in discussions about end of life care was a significant barrier to the provision of effective care. Doctors sampled in another study stated that open and transparent discussions that address patients’ wishes can lead to enhanced end of life care (Brooks et al 2017).

Communicating with families was an important subtheme that emerged from this scoping literature review. Doctors and nurses in Brooks et al’s (2017) study identified that families often travel on ‘a journey of understanding’, which is different for every family. However, nurses and doctors in several studies identified that patients and families can have unrealistic expectations of the effectiveness of ICU care, with participants suggesting that families did not always understand the severity of the patient’s condition (Friedenberg et al 2012, Tirgari et al 2016, Brooks et al 2017). In Beckstrand et al’s (2017) survey study, nurses identified that ‘patients and families do not understand what the phrase “lifesaving measures” really means’ and this was the most significant challenge to providing effective end of life care, while nurse participants in Brooks et al’s (2017) study stated that clinicians sometimes hide the unpleasant elements of ICU care from families, for example by asking them to leave the bed space when a patient experiences seizures or dangerously low blood pressure. This might inhibit families’ understanding of how unwell the patient actually is.

Communication between doctors and other healthcare professionals was mentioned in all of the studies. Nurses stated that a lack of effective communication resulted in fragmentation of care (Zomorodi and Lynn 2010, Gélinas et al 2012), nurses feeling that their clinical opinion was not valued (Crump et al 2010, Attia et al 2013, Beckstrand et al 2017) and nurses feeling that they were not involved in decision-making (Gélinas et al 2012). The extent to which doctors rated communication between clinicians to be a challenge varied. For example, Friedenberg et al’s (2012) study reported that 9% of medical residents identified suboptimal multidisciplinary team communication as a challenge, but Brooks et al’s (2017) study reported that suboptimal communication between the ICU medical team and other medical teams was a barrier to providing effective end of life care.

Family involvement

Family involvement was identified as both a challenge and a support across several studies. Where families displayed behaviour perceived by healthcare professionals to be challenging – such as asking too many questions, insisting on curative treatment or challenging clinical decisions – participants in several studies rated such family involvement as a considerable barrier to delivering end of life care to patients in the ICU (McCormick et al 2007, Crump et al 2010, Attia et al 2013,

Losa Iglesias et al 2013, Beckstrand et al 2017). Furthermore, patients’ families were at the centre of four of the ten most challenging barriers identified in one study (Beckstrand et al 2017). Practical issues, such as a language barrier or, for social workers, not having the time to engage with families, were also identified as barriers to delivering end of life care (McCormick et al 2007, Crump et al 2010, Friedenberg et al 2012).

Engaging with families was also among the supports or facilitators identified by participants (McCormick et al 2007, Losa Iglesias et al 2013). Social workers were increasingly likely to be satisfied with their work if they had positively engaged with the patient’s family (McCormick et al 2007). In Losa Iglesias et al’s (2013) study, nurses strongly identified family presence at the bedside of the dying patient to be a supportive practice, and found it beneficial to educate families about how to behave around the dying patient.

Personal factors

Several nurses reported that the ethos of ICU, where the goal is successful life-saving treatment, did not lend itself well to caring for dying patients, thereby causing moral distress for the nurses (Gélinas et al 2012, Tirgari et al 2016). Some nurses also found it emotionally challenging to provide active care to patients who were not going to survive (Zomorodi and Lynn 2010). Other challenges identified by nurses included the belief that most patients who die in the ICU would not have chosen the critical care setting as their preferred place of death and the perceived belief that providing comfort care was of less value, or involved using fewer nursing skills, than the provision of active treatment (Gélinas et al 2012, Tirgari et al 2016). To counteract such feelings, nurses found it beneficial to receive encouragement, positive feedback and emotional support from fellow nurses and from patients’ families (Crump et al 2010, Attia et al 2013, Losa Iglesias et al 2013).

Lack of end of life care guidance and lack of education were also identified as significant barriers, with one study reporting that 60% (n=42/70) of the nurse participants identified lack of education as a significant barrier to the provision of effective end of life care (Attia et al 2013). Lack of end of life care guidance meant that nurses were unsure whether the decisions they made were correct, and some nurses reported being fearful of legal responsibility for certain end of life care practices such as the administration of opiates and the withdrawal of treatment (Zomorodi and Lynn 2010, Friedenberg et al 2012). This fear of litigation was more pronounced in nurses than in doctors. Some doctors and nurses reported that they receive most of their end of life care education ‘on the job’ because of a lack of practical guidance (Zomorodi and Lynn 2010, Brooks et al 2017). A lack of education about the specific challenges of communicating with patients and families about end of life care was identified in one study, with participants stating that some multidisciplinary team members avoided challenging conversations, for example concerning the transition from active treatment to comfort care, because of a lack of relevant training (Brooks et al 2017).

Intensive care unit environment

Challenges relating to the ICU environment were identified in all studies. Participants in several studies identified that ICUs lacked private space for communicating with the patient and family, and reported that the design of the ICU did not always enable family members to be physically close to the dying patient (McCormick et al 2007, Gélinas et al 2012, Attia et al 2013, Brooks et al 2017). Some nurses also identified that families seldom have a private space where they can rest (Attia et al 2013). Even when private rooms were available for the patient and their family, the presence of specialist equipment at the bedside and the proximity of other patients who are unwell were identified as barriers to enabling a peaceful death (Zomorodi and Lynn 2010, Gélinas et al 2012, Attia et al 2013, Brooks et al 2017). Nurses reported removing or switching off non-essential monitoring equipment to reduce noise at the bedside and to enable the family to spend time with the patient in a private, quiet setting (Gélinas et al 2012).

In McCormick et al’s (2007) study, lack of time and high workload were identified as environmental barriers, with social workers reporting that increases in workload negatively affected their ability to deliver effective care. In Losa Iglesias et al’s (2013) qualitative study, it was reported that a lack of staff resulted in one nurse having to care for a dying patient alongside other patients. Doctors also reported that conflicting demands on their time made providing end of life care in the ICU setting increasingly challenging (Friedenberg et al 2012).

Limitations

The aim of this scoping literature review was to explore issues that affect the delivery of end of life care in ICU settings. While the literature review included the perspectives of nurses, doctors and social workers, most of the articles included in the literature review focused on nurses’ views only. This means that this scoping literature review could not effectively represent the challenges and facilitators experienced by the wider multidisciplinary team in the delivery of end of life care in the ICU. Similarly, direct comparison between the studies included is complicated by the fact that they were undertaken in different countries, which have different healthcare systems, and different cultural and ethical beliefs. Nonetheless, the main themes identified in this scoping literature review transcend these differences, and therefore confirm that some of the challenges and facilitators that healthcare professionals experience in the delivery of end of life care in the ICU are related to the ICU setting itself.

Future developments in practice

Future developments in practice should consider the role that effective multidisciplinary team-working has in improving end of life care. Initiatives such as multidisciplinary ward rounds and multidisciplinary debrief sessions could contribute to effective communication practices. Joint training in end of life care might lead to improved team-working and address some of the uncertainties that healthcare professionals reported experiencing in this scoping literature review. It would be preferable if such training focused on themes specific to end of life care in the ICU setting, such as communicating with families of dying patients, limits of care and treatment withdrawal, as well as addressing the general principles of effective end of life care.