The Role of Palliative Care in Burns: A Scoping Review

Journal Pre-proof The Role of Palliative Care in Burns: A Scoping Review Jonathan Bayuo, RN, Katherine Bristowe, PhD, Richard Harding, PhD, Frank Bediako Agyei, RN, Anita Eseenam Agbeko, MD, PhD, Pius Agbenorku, MD, PhD, Prince Kyei Baffour, RN, Gabriel Allotey, RN, Paa Ekow Hoyte-Williams, MD, FWACS PII:

S0885-3924(19)30653-0

DOI:

https://doi.org/10.1016/j.jpainsymman.2019.11.006

Reference:

JPS 10297

To appear in:

Journal of Pain and Symptom Management

Received Date: 1 August 2019 Revised Date:

6 November 2019

Accepted Date: 6 November 2019

Please cite this article as: Bayuo J, Bristowe K, Harding R, Agyei FB, Agbeko AE, Agbenorku P, Baffour PK, Allotey G, Hoyte-Williams PE, The Role of Palliative Care in Burns: A Scoping Review, Journal of Pain and Symptom Management (2019), doi: https://doi.org/10.1016/j.jpainsymman.2019.11.006. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine

Title- The Role of Palliative Care in Burns: A Scoping Review Jonathan Bayuo RN1, Katherine Bristowe PhD2, Richard Harding PhD2, Frank Bediako Agyei RN1, Anita Eseenam Agbeko3 MD, PhD, Pius Agbenorku MD, PhD4, 5, Prince Kyei Baffour RN6, Gabriel Allotey RN6, Paa Ekow Hoyte-Williams MD, FWACS4 1

Department of Nursing, Faculty of Health and Medical Sciences, Presbyterian University

College- Ghana 2

Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders

Institute, Kings College- London 3

Directorate of Surgery, Komfo Anokye Teaching Hospital, Kumasi-Ghana

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School of Medical Sciences, Kwame Nkrumah University of Science and Technology

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Plastics, Burns and Reconstructive Surgical Division, Directorate of Surgery, Komfo

Anokye Teaching Hospital, Kumasi- Ghana 6

Burns Intensive Care Unit, Plastics and Reconstructive Surgical Unit, Directorate of

Surgery, Komfo Anokye Teaching Hospital, Kumasi- Ghana

Corresponding Author Jonathan Bayuo Presbyterian University College- Ghana P.O. Box 42 Agogo Number of tables: 1 Number of figures: 1 Number of references: 76 Word Count (body text): 5461

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ABSTRACT Context: Patients with severe burns may face distressing symptoms with a high risk of mortality as a result of their injury. The role of palliative care in burns management remains unclear. Objective: To appraise the literature on the role of palliative care in burns management. Methods: Scoping review with searches in twelve databases from their inception to August 2019. The citation retrieval and retention are reported in a PRISMA statement. Findings: 39 papers comprising of 30 primary studies (26 from high income and 4 from middle income countries), 4 reviews, 2 editorials, 2 guidelines and 1 expert board review document were retained in the review. Palliative care is used synonymously with comfort and end of life care in burns literature. Comfort care is mostly initiated when active treatment is withheld (early deaths) or withdrawn (late deaths), limiting its overall benefits to burn patients, their families and health care professionals. Futility decisions are usually complex and challenging, particularly for patients in the late death category and it is unclear if these decisions result in timely commencement of comfort care measures. Two comfort care pathways were identified but it remained unclear how these pathways evaluated ‘good death’ or supported the family which creates the need for the development of other evidence-based guidelines. Conclusion: Palliative care is applicable in burns management but its current role is mostly confined to the end of life period suggesting that it is not been fully integrated in the management process. Evidence-based guidelines are needed to support the integration and delivery of palliative care in the burn patient population. Keywords: burns; end of life; evidenced-based guidelines; comfort care; palliative care 2

Running title: Palliative Care in Burns Introduction Burns injuries primarily affect the integument and occasionally deeper structures such as the bones. The World Health Organisation has named burns as the fourth most common form of trauma following road traffic accidents, falls and interpersonal violence [1]. In developed settings such as the United States of America, approximately 486,000 persons receive treatment for burns annually, with 40,000 hospitalisations [2]. In England and Wales, childhood burns alone result in approximately 37,703 emergency admissions annually [3]. In developing countries such as India and Bangladesh, the World Health Organisation reports approximately 173,000 paediatric burns annually [1]. The lack of a national burn repositories in low and middle income countries (LMIC) prevents detailed data on burn injury incidence and mortality, although evidence suggests that in countries such as Ghana burn care requires greater attention due the injury’s common occurrence and severity [4]. Burn care aims to enhance survival outcomes and improve functional abilities. Despite the advances made in burns care such as early excision/ grafting, fluid resuscitation and critical care, the mortality risk for those with severe burns remains high and 25% of those aged 45 years and above with severe burns may die [5]. The World Health Organisation reports approximately 180,000 deaths resulting from burns annually [1]. These patients do not respond to therapies, or active treatments may be deemed inappropriate, with the majority of deaths occurring in LMIC [1]. For the burn patient at the end of life, symptoms such as delirium and pain may be present [6, 7], and psychosocial problems are reported among both patients and families [8]. Nurses’ inability to resolve these symptoms lead to feelings of powerlessness, helplessness and frustration [6]. Thus, Mosenthal and Murphy [9] have argued the need to streamline palliative care into trauma care.

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Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial and spiritual [10]. Palliative care is often used interchangeably with end of life care in literature [11]. However, palliative care can be delivered from the point of a patient’s diagnosis of a life-limiting illness or injury, whereas end of life care is directed toward persons who are in the final phase of their life (often defined as the last year of life) [11, 12]. Early introduction of palliative care improves quality of life, depression, improves satisfaction with care and reduces hospital costs [13-17]. Palliative care offers great potential to deliver these benefits for burn patients and their families [9]. Although burn trauma is not included in the Global Atlas of Palliative Care at the End of Life [18], the Lancet Commission on Palliative Care and Pain Relief observed that the burden of serious health-related suffering could in large part be alleviated with palliative care and pain relief [19], especially as LMIC are projected to see a massive increase of deaths with serious health-related suffering [20]. In line with this assertion, the International Society of Burn Injuries (ISBI) has recommended the focus of end of life care in burns to include relief from pain and anxiety and emotional support of the patient and significant others [21]. The American College of Surgeons also state the need for a palliative care physician to participate in attaining an organised approach to end of life care of persons with trauma [22]. However, the evidence to support the integration and delivery of palliative care in the burn unit is small [23]. To strengthen the evidence base and guide further research, there is a need to appraise existing literature to delineate what is known. The objective of this paper was to identify what is known about the role of palliative care in burns. To achieve this broad objective, the following review questions were formulated: i) what is the place of palliative 4

care in burns management, ii) what guidelines/ tools/ care pathways exist to address the utilisation of palliative care in burns, iii) how is mortality/ futility addressed in the context of burns management? iv) how is palliative care introduced into burns management? Methods Review Design We utilised the scoping review method of Arksey and O’Malley [24] to provide an overview of a broad topic serving the following purposes: to provide an overview of a field of research, to provide a focused synthesis, potentially with more speed and to draw conclusions and identify gaps in the existing literature. The scoping review approach proceeded through: identifying the research questions; identifying the relevant studies; study selection; charting the data; collating, summarizing, and reporting the data. The review title has been registered with the Joanna Briggs Institute (JBI) database. Search strategy The databases of PubMed, EMBASE, PsychINFO, Scopus, ScienceDirect, Google Scholar, CINAHL via EBSCO Host and ProQuest Dissertations and Theses Global database were searched for articles and dissertations from their inception till August 2019. Trove, Agency for Healthcare Research and Quality, MedNar and OpenGrey were searched for grey literature. References of retrieved papers were also manually searched for potential papers. The key words used were “palliative” OR “palliate” OR “palliation” OR “palliative care” OR “comfort care” OR “end of life care”, “terminal care” AND “burn trauma” OR “burn injury” OR “burns ” OR “ burns care ” OR “ burn death” OR “futility”. Additional filters were added and this included full text or abstract availability in English and species (human). In

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ScienceDirect, CINAHL and Google Scholar additional combinations (“burns palliative care”, “palliative care in burns”, “end of life care in burns”) were utilised. The inclusion criteria were: papers reported in English on palliative care for burn patients of any age; for papers reporting primary data any study design was acceptable, with burn management data disaggregated from samples with multiple injuries (we excluded these papers if details were not provided regarding the care of the burn patient). To fully scope existing literature we did not exclude non-primary research (e.g. reviews, editorials, case/ clinical reports and clinical guidelines). Conference abstracts were however excluded as we could not have access to the full presentation. The criteria were broad to meet the scoping review goals. The search yield and retention were reported in PRISMA flowchart and presented as Figure 1. Analysis Details of all papers were extracted into a common table based on the study type (primary data or clinical guideline), and if primary data, further details such as authors, year, country of study, aim, design/ sample and main findings were added. Recommendations were obtained from all papers based on which narrative synthesis was undertaken. Results A total of 562 articles were identified in the first round of searches (See Figure 1 for the PRISMA flowchart). Duplicates were removed at this stage and a total of 408 papers remained. Title and abstract screening were undertaken and 347 were excluded as they were not relevant to the topic under investigation. Twenty (20) papers were also excluded as they focused on palliative care in the emergency settings/ mixed injuries. Two (2) papers were also excluded as they were not reported in English. At the end of the screening process, 39

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papers were retained. The references of the 39 papers were retrieved to obtain their full-text versions for analysis and inclusion in the review. References of the 39 papers were also manually searched for potential papers.

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Study Characteristics The studies retained in this review and their key findings are summarised in Table 1. The publications years ranged from 1984 to 2019. The studies comprised of 17 retrospective record reviews of burn patients [7, 26-28, 30, 31, 33, 34, 35, 39, 41, 45-50, 58]; 4 cross sectional surveys [25, 36, 38, 55]; 5 qualitative studies [6, 42, 43, 47, 52], 3 prospective surveys [32, 40, 56], 4 reviews [23, 37, 53, 57]; 2 editorials [29, 51]; 1 case report [8], 2 guidelines [21, 43] and 1 interdisciplinary expert advisory board review [54]. The settings of the primary studies include United States of America (15), United Kingdom (4), Ghana (3), Australia (3), Netherlands (2), Ireland (1), Europe (1), Spain (1), India (1) and Iran (1). The aims of the studies included examining the characteristics of burn patients who die/ burns prognostication [6, 8, 26, 27, 28, 30, 31, 32, 33, 35, 40, 48, 49, 56]; care pathways/ guidelines [7, 21, 25, 43, 44, 47]; use of palliative care services in the burn unit/ burn patients [23, 34, 37, 45, 51, 52, 53, 54, 55] and goals of care [29, 36, 38, 41, 42, 46, 50]. Four themes were developed from the literature. Theme 1: The Place of Palliative Care in Management of Burn Patients Palliative care in burns management is usually confined to the end of life period though it may apply to burn patients who are recovering. Commencing this form of care requires a change in the goals of care towards meeting the needs that may emerge at the end of life period and attain comfort care. Comfort care Palliative care has been used synonymously with end of life/ comfort care in burns literature. The focus of comfort care pathway is to attain relief from pain and discomfort for burn patients at the end of life [27, 29]. Comfort care in burns does not imply “no care”;

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instead, it reflects end of life care for a burn patient whose injuries are deemed unsurvivable [23, 25, 29, 34, 37, 46]. When the comfort care pathway is initiated, the focus shifts to maintaining relief from suffering instead of undertaking reconstructive surgical interventions [34]. Also, commencing comfort care may go alongside a Do Not Attempt Resuscitation (DNAR) order [58]. Comfort care is considered either after withholding active treatment (patients experiencing early death) or withdrawal of life sustaining treatment (patients experiencing late death) [7, 21, 27, 35, 38]. Whilst withdrawal of care was associated with cessation of active treatment, withholding care involved not initiating active treatment, and each requires a decision to be made by the burn care team [29, 37, 38]. Regarding the initiation of goals of care discussion, palliative care specialists appear to be more familiar with the process, comfortable to initiate and conduct these discussions compared to burn surgeons [36]. The goals of comfort care may not be limited to the burn patient alone, but also significant others [23] which makes it important to have open communication among all parties involved if possible and document preferences [23, 34, 35, 36, 37, 38, 39, 40]. The main outcome of the comfort care pathway is symptom management to achieve a comfortable and dignified death, with post-bereavement support for the family members [27, 29, 34]. Limited resources in developing settings may however not permit burn patients requiring comfort care to be admitted [47]. Beyond the end of life period, one study observed that persons recovering from burns may need to find meaning and come to terms with their new self as they deal with altered appearance, loss of function and psychosocial distress; thus a need to consider palliative care for burn patients who are recovering [43]. Needs of burn patients, families and burn care team The burn patient at the end of life may experience multisystem organ failure, systemic inflammatory response syndrome and sepsis [26, 28, 45]. Four studies identified multisystem organ failure as a primary cause of death in burn patients [28, 30, 45, 48] and this has been 9

observed to follow a particular sequence which may guide burn care practitioners to anticipate the symptoms that may emerge: lung failure, gut, nervous system dysfunctioning, vasomotor, cardiac, haematologic, liver and renal failure [48]. Other symptoms identified in burn patients at the end of life include uncontrolled pain, delirium, restlessness and incoherent speech [6]. Family members may feel overwhelmed by the patient’s symptoms [6, 8] and burn care nurses may experience feelings of helplessness, powerlessness, frustrations and emotional exhaustion following their inability to resolve these symptoms [6]. Following the death of the burn patient, nurses and burn surgeons may find it emotionally difficult to support the bereaved family [55]. It has therefore been suggested that end of life care in the burn unit requires emotional strength to support oneself and the bereaved family [46] as well as adequate educational/ practical preparation [55]. Zamanzadeh et al., [43] have also observed that burn patients on the recovery pathway may also have several biopsychosocial needs such as body image/ altered self-concept and pain during rehabilitation which may require palliative care intervention [43]. Theme 2: Guidelines, tools and care pathway Three care pathways/ tools for the delivery of comfort/end of life care were identified in this review. These are the Burn Modified Liverpool Care Pathway (BM-LCP) [7], comfort care protocol [51] and Do Not Resuscitate –Comfort Measures Only (DNR-CMO) [58]. Additionally, two guidelines were identified which suggest the point of commencing comfort care: the ISBI guideline which support the commencement of comfort care as soon as active treatment is stopped [21] and the operational guidelines by Upstate University Hospital suggest a palliative care consult should be placed for all patients with extensive burns and significant inhalational injury [44].

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The BM-LCP pathway comprised of alleviating physical symptoms such as nausea, pain, agitation; spiritual aspects of care; patient and family communication; removal of lines and tubes that are not essential; burn wound care and odour control; and post-bereavement care. The BM-LCP was applied to 14 burn patients (7 patients started the care pathway on admission as their injuries were deemed unsurvivable and the remaining 7 were started on the pathway after a period of active treatment). The timeline from commencement of the comfort care pathway and occurrence of death ranged from 3 hours to 48 hours. The authors noted the pathway facilitated the development of clearly defined treatment goals which made staff feel more comfortable and confident in caring for the dying patients [7]. The comfort care protocol [51] and DNR-CMO [58] follow a similar pattern with the goal of enhancing pain and symptom management, providing respiratory support, discontinuing antibiotics, wound care, avoiding surgical procedures/ laboratory studies and permitting liberal visiting hours. The pathways/ tools were observed to be applied after a futility decision has been made by the burn care team. Achieving consensus on the DNR-CMO at the time of admission for paediatric burns was identified to be difficult unless other features such as severe carbon monoxide poisoning, cardiac arrest or brain death were present [58]. Despite this difficulty, burn care professionals were comfortable writing the DNR-CMO orders [58]. Besides guidelines/tools/ care pathways, team consensus within the burn team [58] and collaboration between medical specialties is identified as important in delivering comfort care to burn patients. Ray et al., [23] highlight the need for a concerted effort between palliative care specialists and primary care physicians in the burn unit as the latter usually possess basic competencies required by all clinicians whilst the former are well trained in handling complex cases. This form of collaboration is recommended by Partain et al., [35] who also suggested partnership between the burns multi-disciplinary team and palliative care specialists. Collaboration between the burn and palliative care teams can facilitate better 11

management of the patient’s suffering [52] and enhance the decision making process regarding futility [53, 54]. This form of collaboration to deliver comfort care however may not always occur as Ismail et al., [27] observed in their study that of 63 burn patients who died in their facility, only 3 received input from the hospital palliative care team. Theme 3: Addressing mortality/ futility in the context of burns management Though den Hollander [57] posits that defining futility is difficult, the ISBI [21] suggest that it represents a high degree of certainty that goals of care for active treatment cannot be met. Addressing mortality or futility of treatment and thus initiating comfort/end of life care in burns management involves two key issues. These are making a decision to either withhold (the decision not to give a life-sustaining treatment) [38] or withdraw treatment (cessation of active treatment following a decision to discontinue active management made after the 24 h period post admission) [29]. These decisions are the cornerstone to the initiation of the comfort care pathway. Undertaking these futility decisions were observed to be a complex and challenging activity for the burn care team. The decision to either withdraw or withhold care is based on the injury characteristics/ risk of mortality and not bed availability pressures [38], cost effectiveness or other external drivers [27, 46]. Metaxa and Lavrentieva [38] observed that majority of burn ICU physicians preferred to withhold active treatment rather than to withdraw care based on the patients’ high probability of death, unresponsiveness to therapy and poor outcome in terms of quality of life [38]. Several papers included in the review cited age and total burn surface area (TBSA) as significant factors in addressing mortality or futility [27, 30, 32, 33-35, 39-41, 44, 46, 51, 58]. The existence of co-morbidities such as diabetes mellitus [27] and multisystem organ failure with sepsis [28, 30, 58] were identified as triggers to withdraw treatment in the presence of increasing age and extensive burns. Though some papers in the review suggested

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the presence of inhalational injury as a major predictor of mortality [33, 41, 44, 46, 49, 58], Galeiras et al., [40] specified in their burn mortality prediction model that after adjusting for age, TBSA and inhalational injury, the requirement of mechanical ventilation was strongly associated with mortality. Scoring systems which take into consideration the age of the patient and TBSA have also been employed to guide the decision making process. The Revised Baux and Belgian Outcome in Burn Injury Score have been used in prognostication [31]. A Baux score 120-150 (a burn prognostication tool calculated based on the TBSA and age of the patient in years) is associated with increased risk of mortality [34, 44]. Even for those who are discharged, increasing age was associated with greater risk of long-term mortality [56]. The presence of increasing TBSA, age and inhalational injury usually drive burn surgeons to consider initiating discussions regarding withholding active treatment (early death) [35] whilst the presence of two or more major organ failure that do not respond to maximal therapy is a major precursor to initiate discussions regarding withdrawal of active treatment (late death) [58]. These discussions are usually undertaken by the multidisciplinary burn care team with or without the family after several considerations of issues such as the patient’s/ family’s views and wishes where possible, co-morbidities and capacity to return to independent living [29, 39, 51, 58]. Some studies report the practice of a shared decision making [7, 25, 29, 24, 51]. A suggestion was made that this decision making process could be undertaken in a stepwise fashion [39]. The stepwise process, based on a standardised protocol, begins with preparation (end of life care decision making involving care providers, patient and family and signing of the Do Not Attempt Resuscitation order); this stepwise process was reported to lead to the provision of adequate analgesia and sedation, weaning and terminal discontinuation from the ventilator. Cleland [29] also recommends an active approach to the mortality/ futility decision-making process which should commence as soon 13

as practically possible with the burn care team, patient (if possible) and family. Communication is described as an essential tool to establish and achieve the goals of care established during the shared decision making process [7, 25, 27, 37]. Ray et al., [23] suggest that palliative care specialists could facilitate communication in situations of prognostic uncertainty, complex family dynamics and to death disclosure. Theme 4: How Palliative Care is introduced in Burns Management

Mortality in the burn unit is classified as early or late death. Early deaths have been reported to occur within 72 hours of admission to the burn unit [48, 49, 58] with late deaths occurring after a period of active treatment (usually in the order of days or weeks) [58]. Three studies indicate that a greater proportion of burn patients experience late death as compared to early death [48, 49, 56]. Introducing palliative care in burns corresponds with the decision to withhold active treatment for patients experiencing early deaths [21] or withdraw active treatment for patients who were previously deemed survivable (late deaths) [29, 58].

The time from the decision to either withhold active treatment or withdraw care till death seems to be brief. Ismail et al., [27] report that the average time after burns injury to issuing a Do-Not-Attempt-Resuscitation (DNAR) order was 14 days for younger patients and 12 days for persons aged 65 years and above; with few minutes/ hours to death after withdrawal of the life-sustaining treatment from their study in the UK [27]. An average time of 11 hours (range 3 – 48 hours) from commencement of the Burn Modified Liverpool Care Pathway to death is also reported by Hemington-Gorse et al., [47] from the UK. In USA, O’Mara et al., [50] observed a median timeline of 2.75 hours from writing a DNAR order and the death among paediatric burn patients. Cleland [29] reports that more than half of burn patients who die may do so after comfort care has been instituted within 24 hours of 14

admission (early death), and that actively treated patients with poor prognosis usually die after withdrawal of active treatment. It is recommended that comfort care decisions should be made with the patient/ family within the first 24 hours of presentation notwithstanding the commencement of initial resuscitation measures [29, 57]. However, Platt et al., [25] indicate that such decisions with the patient may be rarely possible as the patient may be transferred in a sedated or intubated state. In this instance, the decision regarding comfort care should be made with the family as soon as practically possible [36, 51].

Discussion Findings from the review suggest that the place of palliative care in burns management is mostly confined to the end of life period though it may be extended to burn patients who are recovering. Though distinct, palliative care is used synonymously to end of life care and comfort care in burns literature. Comfort care in the burn unit is usually initiated when active treatment is withheld for burn patients within 72 hours of admission (early deaths) or withdrawn (late deaths). The comfort care pathway guided by guidelines/ protocols and team approach may facilitate adequate management of suffering [52], decreased likelihood of surgical interventions [34], discontinuation of treatment modalities deemed unnecessary [7] and enhance the decision making process between healthcare providers, burn patients and families (if possible). Despite the benefits, the review findings suggest that comfort care may not be routinely integrated into burns management. Also irrespective of the pathway (early or late death), the duration of comfort care may be short given the brief time from comfort care initiation to occurrence of death. Thus, these findings may imply that the benefits of palliative care have not been realised fully in the burn unit.

‘Palliative care’ in burns seeks to provide relief from pain and discomfort with the knowledge that the injury is unsurvivable [29 p.786]. The evidence suggests that its place in

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burns care is to ensure the initiation of end of life care by delivering only comfort care (for early deaths) or facilitate change in goals of care from active treatment to comfort care (for late deaths). For burn patients who experience early death (within 72 hours following admission), the boundary between their injury trajectory and end of life period may appear blurred and possibly overlap. Given the limited time from admission to death for this category of burn patients, it may be inferred that comfort care is delivered throughout the period. The role of comfort care in this direction appears congruent with the definition of palliative care by the International Association for Hospice and Palliative Care which focuses on the active holistic care of individuals with serious health-related suffering due to severe illness and especially of those near the end of life [59]. From a clinical perspective, the point a burn patient gets to the end of life phase may be challenging to ascertain even though prognostication outcome may suggest that the injury is unsurvivable. Thus, they may receive comfort care from diagnosis to time of death. This could explain the synonymous usage of palliative and end of life care in some studies included in this review. This assertion however does not apply to burn patients in the late death category as there is a clearly defined period of active treatment (usually in the order of days and weeks) which is later halted after a futility decision has been made [29].

Though majority of the studies included in this review focused on comfort care of burn patients at the end of life, Zamanzadeh et al., [43] highlight the need to consider an extended role of this form of care to burn patients who are recovering at home. Burn patients who are discharged home may be faced with several physical (pain, itch, and sleep problems), psychosocial problems (body image disturbances, anxiety, worry and grief) and existential issues which affect their quality of life adversely. Hopelessness, grief, fear of loss of dignity, social isolation, subjective sense of incompetence, loss of meaning, and existential distress associated with chronic illness such as cancer [60] are common in burns [61-63]. 16

Thus, even though a burn is an acute injury its recovery mimics living with a chronic condition [64]. Further to this is the fact that increasing long-term mortality rates have been reported among persons who were previously considered to have survived burns [56, 65-67]. These assertions suggest that being discharged from the burn unit does not necessarily mean complete recovery has been attained as ongoing professional support may still be required even years after discharge [68, 69]. The goal of palliative care is to improve the patient and family’s quality of life irrespective of the outcome which may make it an essential component in caring for burn patients. Moving in this direction may indicate a need to redefine what palliative care means in burns management to focus on all burn patients instead of only on those whose injuries are deemed unsurvivable. This approach represents a broader scope of palliative care focusing on both specialist and generalist palliative care services in the hospital, community or home [70]. Palliative care may have other implications for burn patients beyond the end of life period. Further studies are needed to clarify this assertion and examine how palliative care intersects with burns recovery.

Guidelines/ pathway from the Burn Modified version of the Liverpool Care Pathway (BM-LCP) which was used by Hemington-Gorse et al., [6] appears to be a good fit in meeting the needs of the burn patient at the end of life as it encompasses pain management, distressing symptom management, dealing with existential issues, availability of relatives with patients, respect and dignity and overall, achieving a good death. Similarly, the comfort care protocol [51] and DNR-CMO [58] offer a practical guide to supporting the dying burn patient. However, these care pathways do not make it clear how the notion of “good death” is to be measured. Also, how family members experience the pathway remain unclear. It is worthwhile noting that the LCP has been withdrawn in the UK due to implementation problems and widespread usage of the intervention preceding evidence of its effectiveness. Palliative/ end of life care guidelines and interventions exist in cancer [71, 72], heart failure 17

[73] and dementia [74] but evidence-based guidelines are also needed for burn patients, their families and the burn care team [27]. The International Society for Burn Injuries [21] proposes only a time point for commencing the end of life care component of palliative care (that is, after a futility decision has been made) but offers no guidelines regarding how this form of care can be organised or evaluated. Additionally, robust evidence of outcomes for burn patients and their families requiring end of life care is also lacking.

Our review supports a team approach to make futility decisions or prognostication and facilitate timely introduction of comfort care in the burn unit. Team approach in this context may imply only the burn care team or the burn team collaborating with the palliative care team. den Hollander [57] describes futility decisions as more like Gestalt integrations, identified as a particular pattern of clinical features in a patient which suggests a need to consider the expertise of the burn care/ palliative care teams in addition to existing burns prognostication guidelines. Arriving at a futility decision is particularly challenging for patients who experience late deaths and usually involves maintaining a balance between diagnosis, therapeutics and ethics [51]. Prognostic uncertainty may exist [51] and it is at this point that Ray and colleagues [23] recommend collaboration with the specialist palliative care team.

Findings from the review also point to the existence of some evidence regarding the predictors of mortality/ futility which make up burns prognostication tools. However, these tools have been critiqued in recent times with recommendation to additionally focus on biochemical markers [75]. The utilisation of co-ordinated team efforts with stronger prognostication tools may lead to an effective approach to the timely introduction of comfort care in the burn unit. Further studies are needed to understand the decision making process involving both burns and palliative care teams, the differences in the decision making process

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with or without the burn patient, the team dynamics during decision-making and the outcomes of these decisions. Additionally, the family’s preparedness to participate in the escalation and de-escalation process requires further exploration. Future studies may also need to examine the relationship between biochemical markers and mortality to strengthen the existing burn prognostication models.

Irrespective of the pathway (early or late death), the immediacy of death for burn patients is in the order of hours or days, which highlights the importance of timely decision making regarding the introduction end of life/ comfort care to achieve comfortable and dignified death [45]. Though it has been recommended that end of life care discussions/ decisions should be initiated early in the course of treatment due to relatively rapid death following burns [23, 34, 35, 45], burn patients experiencing late deaths are more likely to undergo a period of formal resuscitation as an assessment of their physiological robustness to “see how they do” (p.755) [25]. The approach of trying to “see how they do” can delay comfort care initiation and may have significant ramifications such as emotional distress and poor outcomes for the burn patient, family and burn care staff [29]. Besides, some burn patients may have premorbid conditions which can worsen due to the injury or vice versa leading to varied comfort care needs. Thus, it remains unclear if the limited period of delivering comfort care, particularly for the late death category, actually commensurate with the nature and intensity of needs. Limited resources in LMICs may also make it difficult to admit the burn patient requiring comfort care which can affect timely introduction of the comfort care pathway [47].

Cleland [29] has stated that a “wrong” decision to either palliate or not to palliate could be harmful due to the existing pattern in which the burn patient either receives active treatment or end of life/ comfort care alone. Given that burn patients’ death occur early or

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late and there may be some dilemma surrounding withdrawal of care, a question raised is “what if all burn patients undergo preliminary palliative assessment whilst receiving active treatment instead of awaiting a futility decision?” In this regard, the scope of comfort care may be expanded to begin early in the course of treatment which can escalate after a firm decision regarding futility has been made, particularly for persons likely to experience late death. This will mean the need to conduct a palliative care assessment on admission where the inter-professional team undertakes pain and symptom assessment, evaluation of any advance directive/ patient preferences, cultural and spiritual assessment, determination of likely outcomes of ICU stay, and family assessment; these could inform the decision to be made subsequently regarding continuing active treatment or transitioning to comfort care [76]. Moving in this direction may facilitate better integration of comfort care in the burn unit; but will still require evidence-based guidelines, resources and skills [9].

The strength of the present review is the systematic and extensive approach to identifying and analysing the studies. Despite the scoping nature of the review, a limitation of this review is the inclusion of only papers reported in English.

Conclusion

The review highlights the dearth of evidence-based guidelines to support the delivery of comfort care in the burn unit and the lack of outcomes-focused evidence. Palliative care in burns care is currently limited to the end of life period and the service is not universal in burns care services. How to commence and continue palliative care in the whole spectrum of burns care from time of injury till death or recovery and beyond; instead of only at the end of life, requires further study. Guidelines are also needed to enhance organisation and delivery of palliative care in the burns unit.

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Disclosure/ Conflict of Interest

The authors declare no conflict of interest

Acknowledgement

The authors wish to thank nurses and doctors in the Burn Unit of the Komfo Anokye Teaching Hospital.

Funding: This study is a part of an ongoing study supported by a BuildCare Africa Grant from the Cicely Saunders Institute, Kings College- London.

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Table 1: Summary of studies retained in the review (n=39) Author/ Year/ Aim Country Platt, Phipps and To examine the practice Judkins [25] of comfort care in burns among burn unit directors United Kingdom

Bloesma et al., [26] Netherlands

To describe the burn patient population in terms of causes of burns, compare results between Rotterdam Burn Centre (RBC) and American National Burn Repository and analyse causes of death following burns Ismail et al., To review burned [27] patients’ deaths, to Birmingham, establish whether a DoUnited Kingdom Not-AttemptResuscitation order was issued, whether a decision was taken to withdraw life sustaining treatment, the logistics of these decisions and the

Design and Sample

Key findings

Survey of twenty seven (27) burn unit directors with eight hypothetical burn case histories (active resuscitation vs. comfort care)

Recommendations

An important consideration in the initial management of a severe burn might be the wishes of the patient but such a discussion with the patient is rarely possible, as the majority of patients are transferred from a referring centre where active treatment has already been initiated; The decision is therefore almost always made by a consultant in consultation with close family members; there is sometimes great difficulty in determining the point at which active resuscitation is futile Retrospective review The most common cause of death of clinical records of appeared to be multisystem organ 1946 burn patients failure (64.9%), 93% developed admitted to RBC systemic inflammatory response from 1996 to 2006 syndrome at the time of death and in 45.9%, infection was deemed responsible for the fatal clinical deterioration.

‘Comfort care' does not mean ‘no care'. Initiating palliative care discussion should be early in the course of the treatment to know the wishes and desires of the patient.

Retrospective case note reviews of 63 burn in-patient deaths from 1st April 2001 to 31st December 2007.

There is a need to initiate palliative care discussions early in the treatment process involving the patient, family and palliative care and burns care teams.

End of life decisions in younger patients (under age 65 years) were often due to the burn severity. In those older than 65 years, reasons were due to comorbidities and these were made late in the patient’s admission. Palliative care team was not involved in the care of majority of patients due to the short period of time of survival postwithdrawal.

Development of multi-system organ failure and systemic inflammatory response syndrome in the burn patient are signs to clinical deterioration which could serve as clues to commencing palliative care.

palliation of these patients HemingtonTo introduce the Burn Gorse et al., [7] Modified Liverpool Care Chelmsford, Pathway and share early United Kingdom experiences of its use

Retrospective case series of 22 burn inpatient deaths from 1st January 2008 to 31st December 2009

Krishnan et al., [28] Chelmsford, United Kingdom

To undertake analysis of burn deaths and correlation with coroner’s autopsy findings from a large regional burn unit.

Cleland [29]

In the author’s institution, more than half of burn patients who die do so after palliative care is instituted (usually within 24 hours of admission). Actively treated burned patients usually die after withdrawal of active treatment. Principle of early engagement in active decision making will help to avoid confusion about therapeutic goals and burdensome unnecessary treatment. To investigate the Retrospective record Mortality was associated with increasing clinical aspects (age, review of 70 patients TBSA, increasing age and presence of total body surface area (out of 3340 several co-morbidities. The main cause burned (TBSA %) and patients) whose of death in the early withdrawal of care full thickness surface injuries were group was the primary burn injury or area burned (FTSA %) of considered either burn shock whilst multi-organ failure burn patients whose survivable or nonwas identified as the cause of death in injuries were considered survivable on the late withdrawal of care category. either survivable or non- admission from survivable on admission. January 2001 to

Mahar et al., [30] Victoria, Australia

Retrospective medical note review of 92 in-patient burn deaths (out of 4745 burn patients) from January 2005 to April 2011 Editorial (with personal/ professional experience at Victorian Adult Burns Service, Australia)

The concept of good death is important. The dying patient should be treated with respect and dignity and should be without pain and distressing symptoms. Using the Burn Modified Liverpool Care Pathway in a timely manner improves the end of life care experience for patients, family and staff. Multiple organ failure was identified as the main primary cause of death; with sepsis being the primary trigger.

The experience of good death benefits not only the patient but the family and the health care professionals as well. Thus, all attempts should be instituted to ensure that it is achieved in the burned patient.

The development of multi-organ failure and sepsis in the burn patient are clues to the commencement of palliative care in the burn patient.

While a wrong decision to palliate is harmful to the patient, a wrong decision not to palliate also has potential to cause suffering and harm to patients and their families and this has to be discussed early in the management process with active engagement of all team members.

Presence of increasing TBSA, increasing age and presence of several co-morbidities in a burn patient may suggest the initiation of comfort care measures rather than active treatment.

Woods et al., [31] Republic of Ireland

Jeschke et al., [32] United States of America

Muller, Pegg and Rule [33] Queensland, Australia

Sheckter et al., [34] United States of America

To validate and compare the utility of four scoring systems (Revised Baux Score, Belgian Outcome in Burn Injury, Boston Score, Abbreviated Burn Severity Index) in an Irish population. To determine burn sizes that are associated with increased mortality and morbidity after burn.

To examine the factors that increase the risk of death among burned patients treated at a tertiary burn referral centre

To identify inpatient burn population likely to receive palliative care services and characterise temporal changes in palliative care and determine whether palliative care services have an impact on

March 2011 Retrospective record review from 2010 to 2014. 743 patients were admitted during the period with 31 in-patient deaths

Prospective study involving six burn centres; a total of 573 patients were recruited over the 8 year study period; data prospectively obtained (injury characteristics and outcomes) Retrospective outcome analysis of burn patients from 1972 – 1996; out of 4094 patients over the study period, 146 in-patient deaths were recorded Retrospective review of nationwide inpatient burn admissions from 2002 to 2011. A sample size of 7424 recorded: 1.9% of all hospitalisations received palliative

The four scoring systems (Revised Baux, ABSI, Belgian and Boston) evaluated scoring systems in this study proved to be valid in an Irish population. The most accurate, reliable, and, therefore, useful predictors of mortality were considered to be the Revised Baux score and the Belgian Outcome in Burn Injury scoring system. In the modern burn care setting, adults with over 40% total body surface area burned and children with over 60% total body surface area burned are at high risk for morbidity and mortality, even in highly specialized centres.

Appropriate scoring systems may be used to predict mortality outcomes in burns.

Increasing burn size, increasing age, inhalational injury and female sex increased the risk of death among burned patients

Presence of increasing burn size, increasing age and inhalational injury may offer clues regarding burns prognostication and commencement of comfort care measures

Increasing usage of palliative care services and these services in highly moribund burn patients do not impact survival and may decrease the likelihood of surgical intervention in some patients

Palliative care services were more common in the elderly, co-morbid and larger burns suggesting that increasing age, increasing TBSA and presence of premorbid conditions may offer a clue to which burned patients may need palliative care most

Presence of increasing TBSA may offer insight into commencing comfort measures in the burned patient.

unnecessary interventions in the highly moribund burn population.

care services and 92.8% of the patients died during their admission

Ray et al., [23]

Addressing unique issues Review of current arising in burn unit burn care practice palliative care and outcomes of burn injury

Partain et al., [35]

To examine the practices of burn surgeons for initiating end of life care discussions and the impact of these decisions/ discussions on outcomes in older burn patients who did not survive their injury

Retrospective cohort study of persons aged 65 years and above who died in a Level 1 burn service from 1st April 2009 to 31st December 2014 (n= 54)

To investigate the attitudes of burn surgeons and palliative care physicians towards goals of care (GoC) in burned geriatric patients

Survey of 45 burn surgeons (BS) and 244 palliative care specialists (PCS) recruited from the American Burn Association and American Academy for Hospice and Palliative Medicine respectively.

To illustrate the

Review of burns/

United States of America

Cunningham et al., [36] United States of America

Coffey et al.,

Providing an overview of burn care, pain and symptom management in the burn unit and addressing the special needs of critically ill burned patients, their families and clinicians The vast majority of geriatric burn deaths occurred after a discussion about end of life care. The timing of these discussions is driven by magnitude of the injury, and does not lead to higher proportions of an immediate decision for comfort care. The ‘early decision’ group (n= 38) were more severely injured than the ‘late decision’ group (n= 16) and died soon after the first goals of care discussion (mean of 3.3 days vs. 8.9 days respectively) PCS rated being more familiar with GoC, were more comfortable having a GoC discussion with laypeople, were more likely to have reported high quality training in performing GoC conversations, believed more palliative care physicians were needed in ICUs, and had more interest in conducting GoC conversations relative to BS; Both also generally agreed that GoC discussions should occur within 72 hours of admission.

Palliative care and burns care do intersect at a point and there is a need to explore the palliative care needs of burned patients.

Communicating and discussing issues in

Early use of palliative care as well as

Severity of injury may prompt an end of life care discussion implying that increasing TBSA may be linked to mortality in burns and initiating palliative care discussion should be early in the course of treatment.

Goals of care discussion should commence early in the treatment period. The discussion may be led by the burn surgeon or palliative care specialist.

[37]

challenges the critical care/ burn nurse face when caring for the dying burn patient

end of life care literature with a clinical vignette

Metaxa and Lavrentieva [38]

To evaluate physician beliefs, values, considerations and difficulties in end-of-life decisions in burn ICUs.

Electronic survey of end of life care practices in specialised burn ICUs among 250 burn specialists randomly selected from the directories of the 45th annual meeting of American Burn Association and the 15th European Burns Association Congresses.

To determine the frequency of life support withdrawal during the resuscitation period and the impact of implementing a withdrawal protocol at a Regional Burn Centre

13-year retrospective chart review of all burn patients aged 18 years and over and died within 72 hours of admission

Europe

Pham et al., [39] United States of America

the burn multidisciplinary team early in the course of the treatment of patients with large burns will provide the burn patient and family with the best outcomes. Moral difference between withdrawing and withholding was observed; Primary reasons given by physicians for the decision to withhold/withdraw the treatment were the patient's medical condition/high probability of death, unresponsiveness to therapy, severity of burn and poor outcome in terms of quality of life; majority of burn ICU physicians prefer to withhold not withdrawal treatment

honest discussions among the multidisciplinary burn care team will help patients and families with end of life issues.

Out of 4374 burn admissions, 252 died on admission (187 died within 72 hours of admission). Of the patients who died within 72 hours, 106 (84%) had withdrawal of life support compared with 20 (16%) who died with ongoing life support. Higher mean TBSA distinguished patients who died by withdrawal (61 vs 48%, P = .06). Since mid-2001, all 61 patients who had life support withdrawn were by protocol. Implementation of the protocol has led to more frequent use of opioid infusion (98 vs 87%, P = .07) and benzodiazepine infusion (95 vs 49%, P < .01), without hastening time to death

Majority of early burn deaths occurred via withdrawal of life support. Implementation of a withdrawal protocol resulted in more consistent provision of analgesia and sedation without hastening death.

The decision to withhold or withdraw treatment appears complex in the burn unit (particularly with the latter)

Galeiras et al., [40]

To develop a model for predicting mortality among burn victims

Madrid, Spain

Bartley et al., [41] United States of America

Bayuo [6] Ghana

To examine the predictors of withdrawal of life support in a Regional Burn Centre

To explore and describe the experiences of nurses’ caring for severely burned patients in a tertiary healthcare facility

Prospective study of 851 patients admitted from April 1992 to December 2005 with thermal burns, total burn surface area (TBSA) ≥20%, presence of inhalational injury, or less extensive burns depending on age and comorbidities Retrospective analysis (baseline demographic data, injury characteristics, and provide detailed information on medical comorbidities) of burn patients admitted from 2002 to 2012 Qualitative study with 7 nurses working in the Burn ICU (3 males and 4 females)

(median 5.0 vs 5.5 hours, P = .70). Age, total and full-thickness BSA burned, female gender and early mechanical ventilation were independently associated with mortality.

Mechanical ventilation and not inhalation injury is a mortality risk factor.

Of a total of 8371 burn patients, 237 died after withdrawal of life support. Female gender, pre-existing comorbidity, increasing age, increasing TBSA and presence of inhalational injury increased the odds of being withdrawn from life support.

The decision to withdraw life support is a complex and difficult decision. Predictors of withdrawal of life support align with those factors that are associated with increasing risk of mortality in the burn patient. End of life care decision making process needs to be explored further.

Two themes emerged: exhaustion (physical and emotional) and concerns regarding outcomes of care. Emotional exhaustion was related to inability to resolve patient symptoms at the end of life (restlessness, delirium, patient’s pain and incoherent speech); physical exhaustion was due to increasing care demands at the end of life period. With regards to concerns about outcomes of care, participants expressed uncertainty

The burn patient at the end of life faces symptoms that distresses the patient and nurses. There is a need to develop burn specific palliative/ end of life care measures and streamline in the burns management process for patients with severe burns.

Bayuo [8]

To assess the applicability of Watson’s theory of human caring to end of life care in the Burn ICU

Case report of a 22year old severely burned male admitted to a tertiary facility

To explore the experiences of family caregivers of older burn patients who died in a tertiary healthcare facility

Qualitative study with 14 purposively recruited family caregivers of older burn patients who died (three males and 11 females)

International Society for Burn Injuries [21]

To define what constitutes futility and palliative care

Guideline

Zamanzadeh et al., [43]

To investigate burn patients’ experiences

Qualitative study with 17 burn

Ghana

Bayuo [42] Ghana

and an emotionally intense atmosphere at the end of life period coupled with feelings of frustration that even with the best care rendered, patients with severe burns still died. Application of Watson’s theory enhanced holistic approach to care as the patient had needs beyond the injury (psychosocial and existential) and promoted family participation/ communication. Caregiving in the context of burns occurred suddenly and without preparation. As the burned older person transitioned to the end of life period, the family caregivers were stressed by their symptoms (impaired verbal communication, difficulty recognising others and pain); therapeutic regimen such as mechanical ventilation also stressed them. Futility refers to the threshold at which, with a high degree of certainty, goals of care cannot be met at any time, and further efforts to reach these goals are not warranted; all decisions regarding futility should be made with the patient or his/her surrogate. Once a decision of futility has been reached, respect for persons and dignity still apply in the treatment process; palliative care is a continuation of treatment with emphasis on compassion (pain and anxiety relief; emotional support for the patient and significant others) The concept of “locating” was noted as the as the essence of the participants’

End of life care in the burn unit should encompass the holistic needs of the patient, family and support for the health care professionals

Family members are stressed by the distressing symptoms the older burned patient may have. Thus, there is a need to identify strategies to resolve these symptoms.

Palliative care should be initiated after cessation of active treatment and should focus on the patient and their significant others.

Burn survivors want to have a meaningful life and as a result they

Iran

regarding how to preserve self-concept in life after surviving burn injury in Iran

survivors (9 females and 8 males)

Upstate University Hospital, Clark Burn Centre [44] USA

To present palliative care Operational operational guidelines guidelines for adults with burns and/ or inhalational injury

Dokter et al., [45]

To determine the mortality and causes of death of burn patients in two Dutch burn centres (Rotterdam and Beverwijk) between January 2006 to December 2011 To report their experience regarding implementing a comfortcare protocol for burn patients whose survival is marginally possible, or possible but with exceptional disfigurement and disability

Netherlands

Wachtel, Frank and Nielsen et al., [46] USA

Retrospective clinical review of 2730 burn patients out of which 88 inpatient burn deaths were recorded.

Retrospective clinical review of 24 adult burn patients from 1st January 1978 to 15 January 1984

experience and related to selfexploration (exploring the changes in one's life); others’ exploration (exploring the changes in the life of family members and the relationship between self and others); position evaluation (self-position analysis); and self-concept preservation. End of life decision making and discussions can be difficult. Determining goals of care can be difficult for the family and burn care team due to the complexities of burns. Palliative care should be consulted when a burn patient has Baux Score > 100, burns in persons over 65 years with total burn surface area >20 per cent and burn patients with significant inhalational injury. The palliative care group (no active treatment; n = 28) experienced early death, that is within 48 hours of admission to the burn centre; the remaining 60 patients who experienced withdrawn active treatment died after 48hours (most common cause of mortality was multi-organ failure) Patients in the comfort care group had the following characteristics: sustained very severe burns (up to 95 per cent TBSA), severe inhalational injury, preexisting significant disease/ major additional trauma and some were advanced in age (up to 88 years). Prognostic indices and the experience of the burn care team needs to be considered when deciding futility.

focus on self-preservation strategies. The authors recommend the development of a burn specific palliative care program to support burn survivors on their recovery journey.

Clinical features of the patient such as age, burn surface area and presence of inhalational injury may be helpful in burns prognostication

Presence of multi-organ failure (MOF) observed to be related to late mortality. MOF in the burn patient may serve as a guide to commencing palliative care.

A decision to forego life-sustaining treatment is not a decision to abandon care, but rather, is a change in goals (enhance quality of life and ensure comfort as much as possible). Active decision making regarding futility requires maturity, expertise, emotional and physical strength.

Jagnoor et al., [47]

India

Sheridan et al., [48]

USA

Patient autonomy, if known, should be considered in reaching futility decisions. Family surrogates may experience shock and guilt which can impair their decision-making processes. To describe the capacity Consultative Due to resource limitations, burn of the Indian healthcare meetings with 17 patients who had little hope of survival system in providing burn care could often not be admitted for comfort appropriate and effective professionals care. Patients who survive are usually burns treatment and recruited from 7 deterred from returning to the districtrehabilitation services hospitals in four level facilities for rehabilitation as outIndian states patients due to long travel distances, travel costs and stigma. The absence of standardised, clinical guidelines for acute burns treatment and rehabilitation were identified as a key issue by a range of health professionals based at primary and district health facilities. To characterise the Retrospective review The sequence of organ failures follows sequence of organ over a 6 year period this pattern: lung, gut, central nervous failures and to identify (January 1989 to system, vasomotor, cardiac, whether multisystem December 1994); haematologic, liver and renal. organ failure followed by 1039 burn patients Multisystem organ failure was the most early withdrawal of were admitted over cause of death for burn patients support are the most the period but 76 undergoing active treatment (n=48), common cause of death died but data was followed by resuscitation failure (4) and in burn patients fully available for 71 isolated pulmonary infection (4). Death persons who died from early withdrawal occurred in 15 (15 were early patients. Patients who died from deaths for whom multisystem organ failure were support was clinically uninfected at the time of intentionally death. withdrawn within 72 hours of admission and 56 died later in the course of active treatment)

Standardised rehabilitation programmes in the communities and clinical guidelines are needed to improve the standard of burn care in India.

Systemic inflammation needs to be controlled in order to reduce the occurrence of MOF in burn patients.

Leopoldo et al.,[49]

USA

O’Mara et al.,[50]

USA

Frank and Wachtel [51]

USA

To review their experience with failure of resuscitation and to evaluate the ability to predict patients who fail resuscitation (die during the first 48 hours postburn despite receiving full resuscitative efforts)

To characterise the timing, indications, and documentation of DNR orders and the limitation of therapy in a paediatric burn ICU

To share their experiences in implementing a comfort care protocol for continuing care of a burn patient once the decision to withdraw life sustaining and curedirected treatment has been reached

Retrospective study over a 17 year period (1980-1997) involving review of 3807 thermally injured patients (62 failed resuscitation; 10 died within 48 hours post-burn; 3307 survived and 438 experienced late deaths) Retrospective review over a 7 year period (1997 – 2004) involving 1261 admissions to the burn ICU (29 paediatric burn patients died; 12 had DNR orders and 17 did not) Editorial

Patients who failed resuscitation were more severely injured (increasing TBSA, full thickness burns and increased prevalence of inhalational injury) than those who survived resuscitation

Increasing TBSA, deep burns and inhalational injury in a burn patient may provide clues as to commencement of palliative care.

The writing of the DNR order was a late event, occurring a few hours before the patients’ death (median, 2.75 hours). Also, the decision to stop full supportive care for the burned child is a late decision.

For the burn injured child, guidelines are needed to help identify and address which patients should be considered for the limitation of care.

Comfort care candidates can be identified using prognostic indices such as age, sex, burn depth/ extent, preexisting disease and concurrent injuries. Comfort care decisions, if possible, should be reached with the patient before sepsis and medications are fogged into the brain or the ventilatory support is provided; close relatives need to be included. Though the decision lies with the physician, a team effort is needed to reach consensus regarding commencing comfort care. The decision making process should consider questions such as: what is wrong

Physicians must recognise their human limitations as they bring to bear their knowledge, experience and compassion in judging whether further therapeutic efforts are futile. They must have the courage to say “enough is enough” and when necessary help the patient and family to see that such is the case.

Tilden et al.,[52] To explore surgeons' attitudes and decisionmaking practices USA regarding utilization of palliative and supportive care for patients with a sudden advanced illness from traumatic injury or physiologic insult

Qualitative study with 9 attending trauma-burn surgeons and neurosurgeons

Ribeiro et al.,[53]

To review and appraise the existing evidence about the integration of palliative care in burn intensive care

Systematic review with narrative synthesis (5 papers included in the review)

Mosenthal et al.,[54]

To define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit.

Report based on review and interdisciplinary expert advisory board

USA

(diagnosis)? What can be done (therapeutics)? What ought to be done (ethics)? There is no single diagnostic or prognostic path to palliative care. Surgeons were less likely to involve palliative care if they felt the patient had a chance of a meaningful recovery. When the patients’ prognosis was poor or care was deemed to be futile, a palliative care consult was initiated. Also, if a patient’s condition involved end of life care issues, surgeons requested input from the palliative care team. Findings suggest that there may be benefits from integrating palliative care in burn units, specifically in terms of patients’ comfort, decision-making processes, and family care. Multidisciplinary teams may experience lower levels of burden as result of integrating palliative care in burn units. Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative

Collaboration between trauma-burn/ neurosurgeons and palliative care services can help to manage the multidimensional nature of suffering and provide a holistic approach to care.

Integration of palliative care in burn intensive care units improves patients’ comfort, decision-making process, and family care. How the integration of palliative care in burn intensive care units may be fostered and outcomes require further attention. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit.

Tinsley et al.,[55]

USA

To examine the attitudes of burn surgeons, nurses’ and bereaved families toward dying in the burn centre

Survey involving 36 participants (13 burn surgeons, 13 burn care nurses and 10 bereaved families)

care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. The majority of bum surgeons (six) and the bum nurses is even) found it to be emotionally difficult to support emotionally the bereaved family after the death of the patient. Over half the bum surgeons (seven) and nurses (seven) felt that the process of dealing with the bereaved family was different from that experienced in other hospital settings. I% surgeons attributed this difference to the long duration of the patients’ illnesses, while the nurses felt that it was due to the traumatic and painful qualities of bum injury. These emotional difficulties experienced by the staff in dealing with the dying patients were associated with a relatively low frequency of contact with the bereaved families after the patients’ death. While six bum surgeons and ten bum nurses contacted the bereaved families by telephone, only one surgeon and three nurses sent a sympathy card to the families. One bum surgeon notified the family about the autopsy results. Two bum nurses were the only health professionals to attend a patient’s funeral. All but one health professional felt that death and dying practices should be integrated into the medical school and nursing curricula. Despite the health professionals’ perceived emotional difficulty in death-telling and low frequency of contact with bereaved

Education about death and dying should be incorporated into medical and nursing school curricula. Faculty should discuss all aspects of patient death, including anticipation and coping skills, death notification, and guidance of the bereaved. Open discussions of the emotional impact of patient death on the health care providers should be an integral part of the educational programme. Residency training is another setting for education in patient death. Discussions on death and dying should be incorporated into bum centre orientation and major hospital conferences.

Duke et al.,[56]

Australia

den Hollander [57]

To assess if burn injury in older adults is associated with changes in long-term all-cause mortality and to estimate the increased risk of death attributable to burn injury.

To provide an overview of medical futility in burn patients

families, all bereaved family members expressed considerable satisfaction with the care of the dying patient as well as their emotional support. Their high level of satisfaction was attributed to their perception of excellence of patient care as well as constant and supportive communication. Population-based For those hospitalized with burns, 180 matched longitudinal (3%) died in hospital and 2498 (42%) study. A cohort of died after discharge. Individuals with 6014 individuals burn injury had a 1.4-fold greater who were aged at mortality rate than those with no injury least 45 years when (95% confidence interval, CI: 1.3–1.5). hospitalized for a In this cohort, the long-term mortality first burn injury in attributable to burn injury was 29%. 1980–2012 was Mortality risk was increased by both identified. A nonsevere and minor burns, with adjusted injury comparison mortality rate ratios of 1.3 (95% CI: cohort, randomly 1.1–1.9) and 2.1 (95% CI: 1.9–2.3), selected from respectively. Western Australia’s electoral roll (n=25759), was matched to the patients. Review of futility It is hard to provide a definition of and how it applies in futility that covers all situations where the care of burn the term is called into service. The patients principle of futility, although set up to curb patient autonomy, cannot work without listening to and negotiating with the patient and his or her family; yet patients and especially in the early stages of burns are often not able to make autonomous decisions and neither are their families.

Burn injury is associated with increased long-term mortality; burn care professionals should not rely solely on in-hospital deaths as it can lead to an underestimate of the true mortality burden associated with burn injury.

Futility decisions are like Gestalt integrations; recognising futility has often more similarity with recognizing a face than applying a list of rules.

Frantianne and Brandt [58]

Ohio, USA

To review how the process for determining futility has evolved in the burn unit and to evaluate the impact of the use of defined objective criteria to assist in these decisions

Retrospective record reviews of 3301 burn patients from January 1986 to December 1994; 114 deaths (3.45%) occurred within the first few days of admission and 70 patients died at a later date

A DNAR order with comfort measures only occurred for 33 patients. Criteria for early DNAR (no resuscitation at time of admission) include age, TBSA and inhalational injury; criteria for late DNAR include major organ system dysfunctioning (2 or more that do not respond to maximal therapy). Patients with DNAR-comfort measures only are maintained on IV morphine and lorazepam

An objective criteria for determining futility include the following parametres: age, extent of burns, presence of inhalational injury and major organ dysfunctioning.

Identification

Figure 1: PRISMA Flowchart on Selection of Studies

Records identified through database searching (n = 540)

Additional records identified through other sources (n =42)

Included

Eligibility

Screening

Records after duplicates removed (n =408)

Records screened (n =408)

Full-text articles assessed for eligibility (n =41)

Studies included in review (n =39)

Records excluded after title/ abstract screening (n =347) Records excluded because they focused on mixed injuries (n = 20)

Full-text articles excluded, as they were not reported in English (n =2)