Introduction
Burns are traumatic injuries that represent a personal catastrophe (Brusselaers et al. Reference Brusselaers, Monstrey and Vogelaers2010), having physical, psychosocial, and economic consequences (AbdelWahab et al. Reference AbdelWahab, Sadaka and Elbana2018; Sierra Zúñiga et al. Reference Sierra Zúñiga, Castro Delgado and Merchán-Galvis2016; Spronk et al. Reference Spronk, Van Loey and Sewalt2020). Advances allowed to extend the lives of patients whose burn injuries would have previously been invariably fatal (Kamolz Reference Kamolz2010; Kearney et al. Reference Kearney, Francis and Clover2018; Lee et al. Reference Lee, Joory and Moiemen2014).
Burns are a global public health problem, accounting for around 300,000 deaths annually (Forbinake et al. Reference Forbinake, Ohandza and Fai2020; Stokes and Johnson Reference Stokes and Johnson2017; WHO 2018). Evidence shows that 25% of patients aged 45–65 years with severe burns die (Ray et al. Reference Ray, Karlekar and Crouse2017). Moreover, burns are among the leading causes of disability-adjusted life years and morbidity, causing unbearable suffering (Bayuo et al. Reference Bayuo, Bristowe and Harding2019; WHO 2018, 2019). Patients who survive burn injuries are often left with symptoms, rehabilitation needs, and quality of life challenges (Cook et al. Reference Cook, Langston and Jaramillo2020).
Patients’ circumstances in burn intensive care units (Burn ICUs) can change rapidly (Higginson et al. Reference Higginson, Koffman and Hopkins2013b). Symptom management and communication in this context are very challenging. Furthermore, it is paramount to identify and optimally address patients’ specific needs, including the declination that may occur before death (Cohen-Mansfield et al. Reference Cohen-Mansfield, Skornick-Bouchbinder and Brill2018; Fanning et al. Reference Fanning, Farkas and DeWitt2017; Ray et al. Reference Ray, Karlekar and Crouse2017).
End-of-life care requires a specific set of competencies to enable improved quality of life, comfort, and family support. Nonetheless, end-of-life care is often neglected (Higginson et al. Reference Higginson, Evans and Grande2013a), particularly in Burn ICUs where it is rarely studied and frequently perceived as a clinical failure. End-of-life care processes in Burn ICUs can be challenging, raising relevant ethico-clinical questions about decision-making processes, informed consent, patient autonomy, patient–family–clinician relationship, and medical futility (Kerever et al. Reference Kerever, Jacquens and Smail-Faugeron2019; Teven and Gottlieb Reference Teven and Gottlieb2018). A timely recognition of the end-of-life stage allows patients and families to discuss values and preferences and make advance care plans, and clinicians to introduce appropriate, proportionate care (Stow et al. Reference Stow, Matthews and Hanratty2018). Protocols for decision-making and goals of care for critically burned patients at the end-of-life are feasible and improve end-of-life processes (Cook et al. Reference Cook, Langston and Jaramillo2020).
Palliative care (PC) improves patients and caregivers’ quality of life (Krug et al. Reference Krug, Miksch and Peters-Klimm2016; Perpina-Galvan et al. Reference Perpina-Galvan, Orts-Beneito and Fernandez-Alcantara2019; Sawatzky et al. Reference Sawatzky, Laforest and Schick-Makaroff2017), promotes cost savings (O’Connor et al. Reference O’Connor, Junker and Appel2018; Ruiz et al. Reference Ruiz, Snyder and Giuriceo2017; Sawatzky et al. Reference Sawatzky, Laforest and Schick-Makaroff2017), and relieves suffering (Streeck Reference Streeck2019). It may be provided both to patients who are likely to die within a short period of time and to seriously ill patients at any stage of their disease (Hua et al. Reference Hua, Li and Blinderman2014).
While there is not a consensual list of triggers for PC consultation in intensive care units (ICUs), it is possible to identify the following: (i) ICU after 10 or more days of hospitalization; (ii) patients over 80 years old, with 2 or more life-threatening comorbidities, where we may include burned patients; (iii) diagnosis of active stage IV malignancy metastatic disease; (iv) status after cardiac arrest; and (v) diagnosis of intracerebral hemorrhage requiring mechanical ventilation (Bradley et al. Reference Bradley, Weaver and Brasel2010; Hua et al. Reference Hua, Li and Blinderman2014; Norton et al. Reference Norton, Hogan and Holloway2007). Identifying scores with the Acute Physiology and Chronic Health Evaluation III, the Burns Wean Assessment Program, the Therapeutic Intervention Scoring System, and the Wean Index may enable to explore appropriate interventions for each stage of a patient’s burns and predict weaning outcomes (Burns et al. Reference Burns, Fisher and Earven Tribble2010; Gilani et al. Reference Gilani, Razavi and Azad2014; Jeong and Lee Reference Jeong and Lee2018; Singh et al. Reference Singh, Pathak and Sharma2018; Todd et al. Reference Todd, Gepp and Richards2019). Evidence suggests that end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments in Burn ICUs (Cook et al. Reference Cook, Langston and Jaramillo2020) and proportionate care (Abdelrahman et al. Reference Abdelrahman, Elmasry and Fredrikson2018; Collins et al. Reference Collins, Cato and Albers2013). Anticipating the identification and referral of patients in ICUs who have PC needs and require care planning can optimize end-of-life care and avoid in-hospital death (Gao et al. Reference Gao, Ho and Verne2013; Sierra Zúñiga et al. Reference Sierra Zúñiga, Castro Delgado and Merchán-Galvis2016).
Repeated exposure to death and grief may lead health-care professionals to occupational stress and burnout (Shorter and Stayt Reference Shorter and Stayt2010; Velarde-Garcia et al. Reference Velarde-Garcia, Luengo-Gonzalez and Gonzalez-Hervias2016). These work-related problems can cause emotional disengagement, causing a negative impact on patients and families’ quality of life (Shorter and Stayt Reference Shorter and Stayt2010). Preventive measures, such as ICU working groups, improving communication and shared decision-making during end-of-life care, preventing and managing conflicts within the team, and also integrating a PC approach in ICUs should be used (Le Gall et al. Reference Le Gall, Azoulay and Embriaco2011; Martins Pereira et al. Reference Martins Pereira, Teixeira and Carvalho2016; Moon and Kim Reference Moon and Kim2015). Integrating PC can foster the discussion of care goals within the multidisciplinary team, helping patients, families, and professionals to better cope with and manage end-of-life issues (Coffey et al. Reference Coffey, Everett and Miller2011).
End-of-life care after making end-of-life decisions (e.g., withdrawing life-sustaining treatments) remains under-analyzed and needs further research (Martins Pereira et al. Reference Martins Pereira, Fradique and Hernandez-Marrero2018; Penders et al. Reference Penders, Bopp and Zellweger2020). Multiple predisposing factors and circumstances may shape the nature of care of the dying and the grief process of their loved ones (Shorter and Stayt Reference Shorter and Stayt2010).
A recent systematic review concluded that integrating PC in Burn ICUs improves patients’ comfort, decision-making processes, and family care (Ribeiro et al. Reference Ribeiro, Martins Pereira and Gomes2019). However, it seems to be mostly confined to the end-of-life period, suggesting that it is not fully integrated in the care process (Bayuo et al. Reference Bayuo, Bristowe and Harding2019). Although this integration is perceived as an opportunity to improve end-of-life care and the dying and death processes, it is still underutilized and under-protocolized (Lilley et al. Reference Lilley, Lee and Scott2018), warranting further research.
Objectives
The objective of this study is to review, appraise, and synthesize the existing evidence about end-of-life in Burn ICUs.
Methods
A systematically conducted scoping review was performed as the general purpose was to identify and map the available evidence about end-of-life care in Burn ICUs (Munn et al. Reference Munn, Peters and Stern2018). We used the Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews (PRISMA-ScR) as reporting guideline (Moher et al. Reference Moher, Liberati and Tetzlaff2009; Tricco et al. Reference Tricco, Lillie and Zarin2018) and followed Arksey and O’Malley (Reference Arksey and O’Malley2005) as a methodological framework, with the refinements proposed by Levac et al. (Reference Levac, Colquhoun and O’Brien2010). This framework is particularly useful when a body of literature has not yet been comprehensively reviewed. It may also be undertaken as an exercise to summarize and disseminate research findings, identify research gaps, and make recommendations for further research (Arksey and O’Malley Reference Arksey and O’Malley2005; Khalil et al. Reference Khalil, Peters and Godfrey2016; Levac et al. Reference Levac, Colquhoun and O’Brien2010; Munn et al. Reference Munn, Peters and Stern2018; Peters et al. Reference Peters, Godfrey and Khalil2015, Reference Peters, Marnie and Colquhoun2021a, Reference Peters, Marnie and Tricco2021b).
Search strategy
Searches were performed in 3 databases, as recommended by the Joanne Briggs Institute (JBI) Reviewers’ Manual (JBI 2015), as follows: PubMed, Web of Science, and EBSCO. MeSH terms or other possible terms related to the following 3 core sets/dimensions were used: Phenomenon of interest – end-of-life, dying, and death; Patient group – burned patients; and Context – (Burn) ICUs. The strategies were adapted as necessary for each database. No limit was placed on the year of publication or language of published articles. Thus, any document from inception until July 2020 was eligible for selection. Searches were updated in September 2021. Full search strategies and histories are provided in the Appendix.
Eligibility criteria
Population: Articles related to end-of-life for patients aged 18 and above, in Burn ICUs in English, Spanish, German, or Portuguese.
Intervention: Articles describing characteristics or care interventions in patients dying in Burn ICUs.
Comparator: No comparator was considered.
Outcome: The description of end-of-life in Burn ICUs.
Design: All research designs and types of articles were considered, except for systematic reviews.
Study selection
Titles and abstracts of retrieved articles were independently screened for relevance by 2 reviewers (A.F.R. and S.M.P.). Relevant publications, potentially eligible for inclusion, were read in full-text by 2 researchers (A.F.R. and S.M.P.), summarized, and discussed with a third researcher (P.H.-M.). Disagreements were resolved by discussion until reaching consensus among these 3 researchers (A.F.R., S.M.P., and P.H.-M.). Summary tables were presented to the other member of the team (R.N.). Figure 1 illustrates the PRISMA-ScR flowchart (Page et al. Reference Page, McKenzie and Bossuyt2021; Tricco et al. Reference Tricco, Lillie and Zarin2018). Endnote X9 was used to remove duplicates and for reference management.
PRISMA extension for Scoping Reviews (PRISMA-ScR) flowchart.
Quality assessment
Although quality assessment is not a required element of a scoping review (Arksey and O’Malley Reference Arksey and O’Malley2005; Brien et al. Reference Brien, Lorenzetti and Lewis2010), as our review has implications for both clinical practice and service organization (JBI 2015; Kazi et al. Reference Kazi, Chowdhury and Chowdhury2021) we appraised the methodological quality of the articles included in the analysis using Hawker et al. (Reference Hawker, Payne and Kerr2002)’s criteria.
Data analysis and synthesis
Data were independently extracted from eligible papers by 3 researchers (A.F.R., S.M.P., and P.H.-M.) using structured data forms purposively developed for this study. These forms were based on and adapted from PICOD’s tool (Eriksen and Frandsen Reference Eriksen and Frandsen2018; Methley et al. Reference Methley, Campbell and Chew-Graham2014): P = Participants (burned patients), I = Phenomena of interest (end-of-life, dying, and death), C = Context (Burn ICUs), O = Outcomes (end-of-life care), D = Design (all research designs, except systematic reviews, policy reports, or case reports). The forms also included the name of the authors, country, and methodological quality. A narrative and thematic synthesis was performed. First, we performed a textual narrative synthesis, systematizing and reporting on study characteristics, context, quality, and findings, using the scope, differences, and similarities among included articles. Second, a thematic synthesis, in which we grouped and aggregated data into themes, was conducted. No themes were defined a priori. The following key themes emerged from the analysis: (i) characteristics of the end-of-life in Burn ICUs, including end-of-life decisions, decision-making processes, causes of death, and trajectories of death; (ii) symptom control at the end-of-life in Burn ICUs focusing on patients’ comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and PC. Table 1 synthesizes the main findings aligned with Arksey and O’Malley (Reference Arksey and O’Malley2005)’s framework.
Operationalization of Arksey and O’Malley’s framework in this scoping review
Results
Database searches retrieved a total of 16,287 articles; 35 articles were full-text assessed for eligibility. Eighteen articles were included in our review, as illustrated in the PRISMA-ScR flowchart (Figure 1).
Description of the articles included for analysis and synthesis
Three main themes were identified: (i) characteristics of the end-of-life care in Burn ICUs; (ii) symptom control at the end-of-life in Burn ICUs; and (iii) concepts, models, and designs of the care provided. Other subthemes that emerged within these main topics were comfort care in critically ill burned patients, end-of-life decisions, and trajectories to death in patients with burn injuries. Figure 2 illustrates and synthesizes these themes and subthemes, relating them to main stakeholders.
Experiencing end-of-life in burn intensive care units: synthesis of themes and subthemes.
One of the included articles studied the use of a care pathway, which was a valid tool, improving the quality of end-of-life care (Hemington-Gorse et al. Reference Hemington-Gorse, Clover and Macdonald2011). It was based on the Liverpool Care Pathway, which is an evidence-based framework of care for the dying patient, providing guidance on comfort measures, discontinuation of inappropriate interventions, anticipatory prescribing, holistic care, and bereavement care (Al-Benna Reference Al-Benna2013).
End-of-life decision-making processes were studied in 6 of the selected articles. In 5 of them, retrospective case notes reviews were undertaken, retrieving information from 8,639 patients whose care provision required end-of-life decision-making sustained in burn severity and associated comorbidities (Bartley et al. Reference Bartley, Atwell and Cairns2019; Hemington-Gorse et al. Reference Hemington-Gorse, Clover and Macdonald2011; Ismail et al. Reference Ismail, Long and Moiemen2011; Partain et al. Reference Partain, Subramanian and Hodgman2016; Pham et al. Reference Pham, Andrew Otto and Bradley Kramer2012). In another article, an electronic survey was randomly applied to burn specialists from several countries participating in 2 scientific events (Metaxa and Lavrentieva Reference Metaxa and Lavrentieva2015). Their main concerns in the decision-making processes were the severity of burns, no response to treatment, and poor quality of life.
Another study considered 6,212 cases reported from regional and national Burn Repository databases in the USA. The majority of burn deaths had a specific burn pattern, allowing the distinction and characterization of 4 types of trajectories (Swanson et al. Reference Swanson, Otto and Gibran2013). Mortality and acute burden were also studied (Weng et al. Reference Weng, Lee and Wei2019). Two studies analyzed 7,020 deaths, finding that multiple organ failure was the most common cause of death among burned patients (Bloemsma et al. Reference Bloemsma, Dokter and Boxma2008; Dokter et al. Reference Dokter, Felix and Pieta Krijnen2015). To improve the approach for the critically burned patients’ families, other studies evaluated the effect of training and early PC consultation programs applied to multidisciplinary teams from trauma/Burn ICUs and implemented gold standards for comfort care for burn patients (Carmichael et al. Reference Carmichael, Brackett and Scott2021a, Reference Carmichael, Mather and Smith2021b; Wessman et al. Reference Wessman, Sona and Schallom2017; Zack-Williams et al. Reference Zack-Williams, Gurusinghe and Tridente2021).
Finally, 2 articles explored, qualitatively, the experiences of professionals and relatives of patients who were cared in Burn ICUs at the end-of-life. These studies highlight the experiences of “hanging in balance” and managing uncertainty, suggesting the need for a better integration of PC in Burn ICUs (Bayuo et al. Reference Bayuo, Bristowe and Agbeko2021a, Reference Bayuo, Bristowe and Harding2021b).
A summary of the characteristics of the articles included in our analysis and synthesis is presented in Table 2. To better understand end-of-life experiences and care in Burn ICUs, we provide an overview of the content of these articles focusing on the preparation for the end-of-life, provision of end-of-life care, and follow-up for families/professional caregivers (Table 3). Table 4 synthesizes the key themes and subthemes about the end-of-life in Burn ICUs.
Characteristics of the articles (n = 18) included for analysis
Overview of the experiences related to the end-of-life in burn intensive care units
Synthesis of the key themes and subthemes about the end-of-life in burn intensive care units
a Step (iv) in Arksey and O’Malley’s framework, as reported in Table 1.
What are the main characteristics of the end-of-life and end-of-life care in Burn ICUs?
End-of-life care and decisions
Forgoing (i.e., withdrawing/withholding) treatment is the most frequent decision made in Burn ICUs. Withdrawing treatment is the deliberate cessation of life-sustaining treatment, despite the awareness that this might lead to the patient’s death; withholding treatment consists of the decision to not give a life-sustaining treatment. This conceptual clarification was considered to be important as well as do-not-attempt to resuscitate orders (Ismail et al. Reference Ismail, Long and Moiemen2011; Metaxa and Lavrentieva Reference Metaxa and Lavrentieva2015).
It is vital to understand decision-making rationales and provide quality and proportionate care at the end-of-life (Swanson et al. Reference Swanson, Otto and Gibran2013). Encouraging new developments (e.g., better understanding of fluid creep, computer-assisted decision support of fluid resuscitation, and rescue therapies) may improve early end-of-life care, defined as the terminal care provided for patients with early rapid decline of their health status, due to burn shock, and also for those with early organ failure after Burn ICU admission, mainly with sepsis or multiple organ failure (Swanson et al. Reference Swanson, Otto and Gibran2013).
The main reasons to decide between withholding and withdrawing treatment were severity of burns (78%), no response to the treatment (68%), and high probability of dying (68%) (Metaxa and Lavrentieva Reference Metaxa and Lavrentieva2015). The most significant aspects for making end-of-life decisions in burned patients were the likelihood of returning to independent living (Pham et al. Reference Pham, Andrew Otto and Bradley Kramer2012) and, for patients aged under 65 years, the size/severity of their burns, and, in older patients, the presence of comorbidities (Ismail et al. Reference Ismail, Long and Moiemen2011).
Physicians in Burn ICUs often experience reluctance to forgo life-sustaining therapies (Metaxa and Lavrentieva Reference Metaxa and Lavrentieva2015), which may delay comfort care (Bayuo et al. Reference Bayuo, Bristowe and Agbeko2021a). One study reported that 73% of the participant clinicians considered withholding and withdrawing decisions as being ethically distinct; 30% of these physicians considered that they would forgo (i.e., withhold/withdraw) the treatment of conscious patients without discussing it with their families (Metaxa and Lavrentieva Reference Metaxa and Lavrentieva2015). The same study found that nurses participated in less than 50% of end-of-life decisions and 81% of the intensivists would not forgo treatment if patients’ families held a different opinion. When forgoing treatment decisions were made, 42% of the physicians would choose to withhold treatment, 37% to withdraw, and 22% neither of the options, but would apply do-not-attempt-to-resuscitate orders (Metaxa and Lavrentieva Reference Metaxa and Lavrentieva2015). Implementing a protocolized withdrawal procedure allowed to consistently improve the palliation of end-of-life symptoms without hastening death (Pham et al. Reference Pham, Andrew Otto and Bradley Kramer2012).
Main causes of death and end-of-life trajectories
The most common comorbidities of burn patients were circulatory and endocrine conditions (Dokter et al. Reference Dokter, Felix and Pieta Krijnen2015). The most common causes of death were multiple organ failure (Bloemsma et al. Reference Bloemsma, Dokter and Boxma2008; Dokter et al. Reference Dokter, Felix and Pieta Krijnen2015; Kallinen et al. Reference Kallinen, Maisniemi and Bohling2012; Swanson et al. Reference Swanson, Otto and Gibran2013), burn shock (36%), sepsis or multi-organ failure (28%), and lung injuries (14%) (Swanson et al. Reference Swanson, Otto and Gibran2013). Different typical pathways were also identified for burn-related deaths: (i) most patients with burn injuries followed a pattern of steady deterioration and died in an early rapid decline regardless of age, mainly due to burn shock (62%); (ii) sepsis/multi-organ failure were the main causes for early organ failures that lead to patients’ deaths; (iii) patients who were stable, until they experienced myocardial infarction or pulmonary embolus and died of late sudden death; and (iv) late terminal illness decline trajectory in patients that initially tolerated resuscitation, but developed subsequent complications, as wound infections or even pneumonia, urging a downward trajectory to death that lasted over than 24 h.
Patients with more severe injuries had an early decision for comfort care, experienced a shorter time to death, and fewer interventions, such as surgeries (Bartley et al. Reference Bartley, Atwell and Cairns2019; Partain et al. Reference Partain, Subramanian and Hodgman2016). Nevertheless, as highlighted by family members and professionals, end-of-life trajectories were characterized by uncertainties in the period preceding death. Experiencing the end-of-life trajectory of a loved one with severe burns in a Burn ICU was perceived as journeying through uncertainty, ebbing away, and coming to terms with a loss (Bayuo et al. Reference Bayuo, Bristowe and Harding2021b).
How is symptom control provided at the end-of-life in Burn ICUs?
Symptom control and patients’ comfort
Symptom control is an integrated part of care provision in Burn ICUs. One article highlighted that a large proportion of patients had no comprehensive documentation of the care they received at the end-of-life (Ismail et al. Reference Ismail, Long and Moiemen2011). While there are multiple references to comfort care, there is no mention of specific care interventions (Bartley et al. Reference Bartley, Atwell and Cairns2019; Swanson et al. Reference Swanson, Otto and Gibran2013; Wessman et al. Reference Wessman, Sona and Schallom2017). Using a PC framework and approach improves patients’ comfort and reduces symptom burden. It also allows highlighting areas where the goals of care have not been attained (e.g., symptoms requiring attention and specific clinical interventions) (Hemington-Gorse et al. Reference Hemington-Gorse, Clover and Macdonald2011). Participants from one study mentioned pain as a physical need, noting how loneliness due to isolation could exacerbate pain. Deteriorating conditions were also noted to be unable to tolerate oral feeding leading to emaciation, and some patients became unconscious with breathing difficulties (Bayuo et al. Reference Bayuo, Bristowe and Agbeko2021a).
What are the concepts, models, and designs of care provision at the end-of-life in Burn ICUs?
Care approaches
Most burned patients at the end-of-life in Burn ICUs show early and repeated instability, although a potentially protracted course. More than three-quarters of burn deaths are attributable to failure or significant decompensation beginning in the resuscitation phase (Swanson et al. Reference Swanson, Otto and Gibran2013). The Injury Severity Score and the Abbreviated Burn Severity Score are used to calculate the acuity of multiple organ systems, while the Charlson Comorbidities Index is used to evaluate the burden of preexisting comorbidities for patients in Burn ICUs (Bartley et al. Reference Bartley, Atwell and Cairns2019; Kallinen et al. Reference Kallinen, Maisniemi and Bohling2012; Swanson et al. Reference Swanson, Otto and Gibran2013).
In one study, most burns (68%) were due to flames. The average total body surface burned area was 53% in patients under 65 years of age, compared to 17% in patients over 65 years. In total, 96% of the patients over 65 years had significant comorbidities, including diabetes mellitus, cardiovascular diseases, epilepsy, alcoholism, and chronic obstructive pulmonary disease (Ismail et al. Reference Ismail, Long and Moiemen2011).
The Burn Modified Liverpool Care Pathway is a care model, with positive results for patients, their relatives, and teams (Hemington-Gorse et al. Reference Hemington-Gorse, Clover and Macdonald2011). This pathway was easy to adhere to and well received. Training/educational programs with multiple inputs about end-of-life care are used to improve health care, order sets, and resources to support end-of-life care in Burn ICUs (Wessman et al. Reference Wessman, Sona and Schallom2017).
Provision of care
Decision-making processes affect care. Swanson et al. (Reference Swanson, Otto and Gibran2013) suggested that efforts should concern 2 divergent aims: first, an early institution of comfort care, the most humane option in massive injuries, and a better understanding of decision-making rationales and high-quality end-of-life care; second, difficult resuscitations, encouraging developments that may improve early care, such as a better understanding of fluid creep, computer-assisted decision support for fluid resuscitation, and rescue therapies.
How professionals are organized in Burn ICUs may also play a relevant role in quality of care. A US survey found that more than 60% of the participating hospitals had a nurse–patients ratio of 1:2 or less, which was associated with reduced incidence of withholding/withdrawing treatment (Metaxa and Lavrentieva Reference Metaxa and Lavrentieva2015). Structural aspects may also be identified. In one study, all surgeries were performed in the burn operating room, and burned patients in the ICUs were cared for in a discrete area of the central unit. Two teams were involved in the process of care: the burns team (i.e., specialists in burn treatment) and the team of intensivists and anesthetists (Ismail et al. Reference Ismail, Long and Moiemen2011). Multidisciplinary teams were composed of a surgeon, a burns anesthetist, a senior nursing staff, and a therapist (Hemington-Gorse et al. Reference Hemington-Gorse, Clover and Macdonald2011). PC teams were not involved in the care of most of these patients.
Besides being difficult to make, end-of-life decisions may not have happened on time. Out of the 63 patients participating in one study, only 3 had an input from the PC team (Ismail et al. Reference Ismail, Long and Moiemen2011).
Palliative care
PC was rarely involved in end-of-life care in Burn ICUs. Four studies highlighted the input of a PC team, but for a minority of patients (Carmichael et al. Reference Carmichael, Brackett and Scott2021a, Reference Carmichael, Mather and Smith2021b; Dokter et al. Reference Dokter, Felix and Pieta Krijnen2015; Ismail et al. Reference Ismail, Long and Moiemen2011). Qualitative studies with professionals and family members emphasized that PC should come alongside active treatment for severely burned (Bayuo et al. Reference Bayuo, Bristowe and Agbeko2021a, Reference Bayuo, Bristowe and Harding2021b), focusing on communication, symptom management, and post-bereavement support for relatives and staff (Bayuo et al. Reference Bayuo, Bristowe and Harding2019, Reference Bayuo, Bristowe and Agbeko2021a, Reference Bayuo, Bristowe and Harding2021b). PC may have the benefit of attaining person and family-centered care at the end-of-life and needs to be integrated in Burn ICUs to ensure that persons whose injuries are deemed unsurvivable and their families receive adequate support (Bayuo et al. Reference Bayuo, Bristowe and Harding2021b).
Discussion
This scoping review shows the paucity of studies focusing on end-of-life care in Burn ICUs. Included articles were heterogeneous and focused mostly on clinical records/databases or professionals’ (physicians) perspectives. The main findings suggest the presence of different trajectories to death in patients with burn injuries. Most deaths in Burn ICUs are preceded by end-of-life decisions. The complexity of making end-of-life decisions and inherent decision-making processes is also explored. It seems that symptom control in critically ill burned patients facing the end-of-life in Burn ICUs has received little attention. Specialist PC was rarely involved in end-of-life care in these units.
Deaths in Burn ICUs are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Nevertheless, there is a need to further improve decision-making processes, increasing the discussion about the goals of care with patients, family members, and even with other team members (e.g., nurses), and managing uncertainty.
End-of-life care is a major step in the care provided to critically ill burned patients in Burn ICUs and their families. It requires a specific set of competencies to enable improved quality of life, comfort, and optimum family support. Still, end-of-life care in Burn ICUs is often neglected, and there is a scarcity of studies on this specific topic.
Communication with critically ill burned patients and their families is difficult for professionals working in Burn ICUs. Often, professionals feel unprepared to face end-of-life situations. Communication obstacles are mostly related to family engagement, information exchange, process transparency, and standardization for both clinicians and family members in Burn ICUs (Fanning et al. Reference Fanning, Farkas and DeWitt2017). There is a long way still to improve communication, particularly for patients to express their end-of-life wishes. Among teams, roles need to be better clarified, and guidelines should be developed alongside competencies and changes in the organizational and physical environment (Bernacki et al. Reference Bernacki and Block2014; Bergenholtz et al. Reference Bergenholtz, Timm and Missel2019).
Communication is a key element to manage decisions, particularly those surrounded by uncertainty (Bayuo et al. Reference Bayuo, Bristowe and Harding2021b, Reference Bayuo, Bristowe and Harding2019). These decisions are based on clinical knowledge, previous experiences, and personal beliefs (Ismail et al. Reference Ismail, Long and Moiemen2011). Improving end-of-life care is part of high-quality intensive care (Curtis et al. Reference Curtis, Patrick and Shannon2001; Gramling et al. Reference Gramling, Sanders and Ladwig2015), particularly in Burn ICUs. Patient-centered care approaches with shared decision-making processes (Elwyn et al. Reference Elwyn, Dehlendorf and Epstein2014) featured, for example, by family conferences can improve the quality of communication between family members and teams (Curtis et al. Reference Curtis, Patrick and Shannon2001). Family satisfaction increases when they are involved in the process associated with the withdrawal of life support (Gries et al. Reference Gries, Curtis and Wall2008).
End-of-life decision-making is particularly challenging (Emanuel and Scandrett Reference Emanuel and Scandrett2010). Specifically, decisions to forgo (i.e., withhold/withdraw) life-sustaining treatments in ICUs are difficult. A large heterogeneity is observed worldwide with respect to making decisions to forgo life-sustaining treatments in ICUs (Lobo et al. Reference Lobo, De Simoni and Jakob2017; Sprung et al. Reference Sprung, Ricou and Hartog2019). Declining to provide a treatment that is medically inappropriate or futile is ethically sound (Botti and Vaccari Reference Botti and Vaccari2019; Wilkinson and Savulescu Reference Wilkinson and Savulescu2011). Despite the expectation that patients would die sooner if invasive interventions were forgone, no such association was found (Ramazzotti et al. Reference Ramazzotti, Clardy and Celi2019).
Early comfort care may be the most humane option for massive burn injuries, requiring a better understanding of both decision-making rationales and processes, and ways to promote high-quality end-of-life care (Bartley et al. Reference Bartley, Atwell and Cairns2019; Swanson et al. Reference Swanson, Otto and Gibran2013; Wessman et al. Reference Wessman, Sona and Schallom2017). It is paramount to ensure person-centered care approaches, involving multidisciplinary teams in end-of-life decision-making processes.
A large proportion of patients in Burn ICUs had no comprehensive documentation of the care they received at the end-of-life (Ismail et al. Reference Ismail, Long and Moiemen2011). Indeed, only one study reported effective symptom control at the end-of-life (Hemington-Gorse et al. Reference Hemington-Gorse, Clover and Macdonald2011). Interventions to manage pain, agitation, breathlessness, mouth problems, secretions, nausea, vomiting, wound care, adequate use of medication, psychological support, and family support are core elements and should be implemented to ensure comfort for critically ill burned patients at the end-of-life.
Based on this review, it seems that PC is suboptimal in Burn ICUs. Only 4 studies referred to the involvement of PC in end-of-life care provided to a very small number of severely burned dying patients (Carmichael et al. Reference Carmichael, Brackett and Scott2021a, Reference Carmichael, Mather and Smith2021b; Dokter et al. Reference Dokter, Felix and Pieta Krijnen2015; Ismail et al. Reference Ismail, Long and Moiemen2011). Most of these studies were quality improvement initiatives. Studies show that PC teams are still not involved in clinical decisions, definition of goals, and end-of-life care in Burn ICUs (Ismail et al. Reference Ismail, Long and Moiemen2011). Although PC is applicable in burn care, its current role is mostly confined to the end-of-life, suggesting that it is not fully integrated in the care process (Bayuo et al. Reference Bayuo, Bristowe and Harding2019). PC specialists and burn surgeons perceive that end-of-life discussions, particularly those concerning goals of care, should occur within the first 72 h of admission (Carmichael et al. Reference Carmichael, Brackett and Scott2021a, Reference Carmichael, Mather and Smith2021b; Cunningham et al. Reference Cunningham, Scielzo and Nakonezny2018). This shows the need for an early identification of PC needs, timely PC referrals, and identification and standardization of triggers for PC referrals.
Well-developed guidelines and protocols exist to promote the appropriate integration of PC in other specialties, including intensive care (Ismail et al. Reference Ismail, Long and Moiemen2011). Yet, they do not directly transfer to the unique needs of critically burned patients and, therefore, are difficult to implement in Burn ICUs. Identifying, clarifying, and prioritizing patients’ goals are paramount to develop patient-centered care processes and can provide the rationale for timely PC referral (Gramling et al. Reference Gramling, Sanders and Ladwig2015), as suggested for other health-care settings (Hui et al. Reference Hui, Hannon and Zimmermann2018, Reference Hui, Heung and Bruera2022). Evidence shows that PC consultation teams help to meet patients’ goals of care, wishes, and preferences (Quill et al. Reference Quill, Norton and Shah2006). The early integration of PC is associated with improved quality of life and survival (Mittmann et al. Reference Mittmann, Liu and MacKinnon2020). Nevertheless, although the integration of PC in Burn ICUs was mostly implemented to improve end-of-life care, no distinction was made concerning early and late deaths in Burn ICUs. As pinpointed by Hui et al. (Reference Hui, Hannon and Zimmermann2018, Reference Hui, Heung and Bruera2022) in the context of cancer care, more than focusing on “early PC integration” it is paramount to ensure “timely PC,” which is a systematic process to identify patients with high supportive care needs and to refer these individuals to specialist PC in a timely manner based on standardized referral criteria.
Integrating PC in Burn ICUs is challenging but has shown to benefit patients, families, and professionals. It is paramount to ensure that decisions concerning the goals of care meet patients’ physical, psychological, social, existential, and spiritual needs, enabling the best outcomes for patients, families, and teams, regardless of survival rates (Bayuo et al. Reference Bayuo, Bristowe and Harding2019, Reference Bayuo, Bristowe and Agbeko2021a, Reference Bayuo, Bristowe and Harding2021b; Berlin Reference Berlin2017; Hemington-Gorse et al. Reference Hemington-Gorse, Clover and Macdonald2011). Health-care systems need to invest as much effort on quality and integrated end-of-life care as they do in maintaining the population alive and free from prominent, alarming diseases (Mitchell Reference Mitchell2017).
Although there is no worldwide consensus on the definition of PC (De Lima and Radbruch Reference De Lima and Radbruch2018; Knaul et al. Reference Knaul, Farmer and Krakauer2018), it is recognized that PC can contribute to ensure the best quality of life for patients and their families, particularly at the end-of-life (Berlin Reference Berlin2017; Mittmann et al. Reference Mittmann, Liu and MacKinnon2020; Payne et al. Reference Payne, Harding and Williams2022). As most of the deaths in Burn ICUs are preceded by a decision to forgo life-sustaining treatments, thus resulting in short periods of time survival, attending Burn ICU professionals might perceive it as impossible to timely refer these patients to PC. Another potential reason could be that professionals working in Burn ICUs consider that they already provide adequate comfort measures and care to dying burned patients, therefore not requiring any additional support from specialized PC teams. Indeed, evidence shows that specialized PC is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing PC needs (Beernaert et al. Reference Beernaert, Deliens and Pardon2015).
Predefining trajectories in dying and death for patients in Burn ICUs might be crucial to anticipate and better identify patients and families’ needs. Swanson et al. (Reference Swanson, Otto and Gibran2013) present 4 death trajectories in patients with burn injuries. Despite the perceived uncertainty of end-of-life trajectories in Burn ICUs (Bayuo et al. Reference Bayuo, Bristowe and Harding2019, Reference Bayuo, Bristowe and Agbeko2021a), this is of relevance. Understanding burns’ physiopathology may help to better identify triggers for PC referral, integrating PC in these patients’ care pathways. Further research should focus on the identification of these triggers for PC referral and admission, and on the outcomes resulting from integrating PC in the care processes and decisions of severely burned patients.
Strengths and limitations
The main strength of this review is its novelty. To the best of our knowledge, this is the first scoping review addressing end-of-life care and decisions in Burn ICUs. The systematic approach and methodological framework of this scoping review bring robustness to the findings. Nevertheless, our review is not without limitations. Due to the limited number of available studies on this topic and heterogeneity of the information provided (10 articles were based on patients’ records, 2 were on online surveys with professionals, 2 were quality improvement initiatives, 2 were qualitative interview studies, 2 were letters to the editor commenting on previous studies), caution is needed in the interpretation of our findings. Although we thoroughly followed the steps defined by Arksey and O’Malley (Reference Arksey and O’Malley2005), we did not perform the consultation exercise. This is an additional optional and parallel step involving key stakeholders to inform and validate study findings. As this review is part of a larger study on the integration of PC in Burn ICUs, this step will be undertaken when conducting interviews and focus groups with relevant stakeholders.
Conclusions
End-of-life care is paramount in the care provided to critically ill burned patients who are dying and their families. It requires specific competencies to enable improved quality of life, comfort, and family support. Nonetheless, end-of-life care in Burn ICUs is rarely studied and characterized by complexity and uncertainty. This review suggests that deaths in Burn ICUs are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different trajectories to death were identified and can be considered to develop triggers for timely PC referrals in Burn ICUs. Symptom control was not described in detail. PC was rarely involved in end-of-life care and decision-making processes.
Our work highlights the need for the early integration of PC and high-quality end-of-life care in the trajectories of critically burned patients. It also leads to a better understanding of dying and death in Burn ICUs. In fact, professionals and guidelines should consistently claim quality end-of-life care to be as important as life-sustaining care.
Further research is needed to (i) complete the additional optional step of this scoping review and involve key stakeholders to inform and validate study findings, (ii) identify triggers for PC referral in Burn ICUs, and (iii) study the best way to foster the timely integration of PC in the care provided to burned patients dying in Burn ICUs.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951522001389.
Acknowledgments
Sandra Martins Pereira is Principal Investigator funded by the Portuguese Foundation for Science and Technology (FCT) under the Scientific Employment Stimulus. CEGE – Research Center in Management and Economics receives financial support from FCT through project UIDB/00731/2020.
Author contributions
R.N. and P.H.-M. are equal last authors of this article.
Funding
The authors received no specific funding for this work.
Conflicts of interest
There are no conflicts of interest to declare, or disclosure of funding received for this investigation.
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