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Examining how goals of care communication are conducted between doctors and patients with severe acute illness in hospital settings: A realist systematic review

  • Jamie Gross,

    Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Supervision, Validation, Visualization, Writing – original draft, Writing – review & editing

    Affiliations Northwick Park and Central Middlesex Hospitals, London North West University Healthcare NHS Trust, Harrow, United Kingdom, King’s College London, Cicely Saunders Institute, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, London, United Kingdom

  • Jonathan Koffman

    Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Supervision, Validation, Visualization, Writing – review & editing

    Jonathan.koffman@hyms.ac.uk

    Affiliation Hull York Medical School, Wolfson Palliative Care Research Centre, University of Hull, Hull, United Kingdom

Abstract

Background

Patient involvement in goals of care decision-making has shown to enhance satisfaction, affective-cognitive outcomes, allocative efficiency, and reduce unwarranted clinical variation. However, the involvement of patients in goals of care planning within hospitals remains limited, particularly where mismatches in shared understanding between doctors and patients are present.

Aim

To identify and critically examine factors influencing goals of care conversations between doctors and patients during acute hospital illness.

Design

Realist systematic review following the RAMESES standards. A protocol has been published in PROSPERO (CRD42021297410). The review utilised realist synthesis methodology, including a scoping literature search to generate initial theories, theory refinement through stakeholder consultation, and a systematic literature search to support program theory.

Data sources

Data were collected from Medline, PubMed, Embase, CINAHL, PsychINFO, Scopus databases (1946 to 14 July 2023), citation tracking, and Google Scholar. Open-Grey was utilized to identify relevant grey literature. Studies were selected based on relevance and rigor to support theory development.

Results

Our analysis included 52 papers, supporting seven context-mechanism-output (CMO) hypotheses. Findings suggest that shared doctor-patient understanding relies on doctors being confident, competent, and personable to foster trusting relationships with patients. Low doctor confidence often leads to avoidance of discussions. Moreover, information provided to patients is often inconsistent, biased, procedure-focused, and lacks personalisation. Acute illness, medical jargon, poor health literacy, and high emotional states further hinder patient understanding.

Conclusions

Goals of care conversations in hospitals are nuanced and often suboptimal. To improve patient experiences and outcome of care interventions should be personalised and tailored to individual needs, emphasizing effective communication and trusting relationships among patients, families, doctors, and healthcare teams. Inclusion of caregivers and acknowledgment at the service level are crucial for achieving desired outcomes. Implications for policy, research, and clinical practice, including further training and skills development for doctors, are discussed.

Introduction

Involving patients in medical decisions improves patient satisfaction [1, 2], affective-cognitive outcomes[3], allocative efficiency [4] and reduces unwarranted clinical variation [5]. The operational definition of goals of care states “the overarching aims of medical care for a patient that are informed by patients’ underlying values and priorities, established within the existing clinical context, and used to guide decisions about the use of or limitation(s) on specific medical interventions” [6]. Its importance relates to the promotion of patient autonomy and patient-centred care, the promotion of valued but avoidance of unwanted care, and the psychological and emotional support provided to patients and families at a time of increased vulnerability [6].

However, in the acute hospital setting true patient-centred care may be more nuanced [7]. Inter-personal and professional differences in knowledge, values, relationships and trust within the confines of a complex healthcare system have witnessed low patient and family involvement in goals of care planning with their doctor [817]. In crises, for example in worsening critical illness such as progressive septicaemia, this may be further exacerbated by fluctuant states in the mental capacity of patients from acute illness. High emotional states and other external influences, including lack of time, necessitate decisive action by doctors and can also hinder goals of care discussions taking place between doctors and patients and their families [9, 1823].

Current evidence supports the reality that patient involvement in goals of care decision-making in hospitals is sub-optimal. Le Guen and colleagues demonstrated that only 12.7% of elderly attendees (aged ≥ 80 years) presenting at an emergency department with a condition potentially requiring intensive care were consulted. A United Kingdom (UK) ethnographic study also demonstrated a low level of engagement with patients and families for Intensive Care Unit (ICU) admission decisions [24]. Reasons included the inability of doctors and patients and/or their families to meet at mutually convenient times and the impact of acute illness on some patients’ ability to have meaningful conversations. This qualitative work informed an ICU decision-making model that included patients’ wishes and values. However, it does not inform health providers of the practicalities of achieving this, nor does it recommend the desired nature of relevant doctor-patient-family interactions.

A UK nationwide quality improvement initiative—the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) programme—aims to encourage healthcare professionals and patients to discuss and co-plan for emergency care [25]. However, its widespread adoption into clinical practice has been variable. Subsequent follow-up evaluation studies reveal mismatches between doctors’ clinical priorities, the immediate needs of patients and families and shared understanding [22, 26].

Optimal practice should strive to promote meaningful and trusted conversations between doctor and patient about goals of care so that best-interest decisions can be made that are informed and understood by both patient and doctor. This can only be achieved when patients have the appropriate understanding of their illness, the treatment options available, prognosis and degree of uncertainty relating to these, and doctors have an understanding of patients’ cultural and personal values and the skill to incorporate these into any decision-making process.

These studies suggest that there is an incomplete understanding of the key drivers and barriers to initiating goals of care conversations and what the most effective communication approaches are between healthcare professionals and patients. Little is also known about the external influences and biases in information exchange.

This study therefore aims to identify and critically examine factors that influence: i) the extent to which goals of care conversations occur between doctor and patient in acute illness in acute hospital settings and ii) how these goals of care conversations are conducted in acute illness.

Methods

The UK Medical Research Council guidance on the development and evaluation of complex interventions [27] and the Methods of Researching End-of-Life Care statement [28] recommends that new healthcare-related interventions are most likely to be effective when they are underpinned by a “conceptual framework”[28]. This includes a theoretical understanding of the key processes involved in delivering interventions and the contexts in which they are required to operate. This realist review specifically addresses the requirement for theory and conceptual framework development and was developed in December 2021 and published in PROSPERO (registration number: CRD42-21297410 (https://tinyurl.com/mpwsubx4). Realist reviews are a theory-driven systematic approach that is particularly suited to helping understand causation; they aim to investigate what works (or fails to work) for whom, in what circumstances, and how, by identifying processes (mechanisms) that lead to desired outcomes in particular contexts [29, 30]. Furthermore, they examine how mechanisms or ‘underlying causal forces or powers’ are triggered in particular contexts and lead to outcomes [30]. This specifically relies on using ‘context-mechanism-output’ configurations (CMOs); these represent testable hypotheses that explain how the context can trigger mechanisms and lead to a variety of outcomes [30]. A three-staged approach was adopted using the RAMSES realist standards [30] and Pawson’s realist methodology [29].

1. Defining the scope of review by concept mining and theory building

A scoping literature search was performed initially between 1 December 2021 to 24 February 2022 to clarify the purpose of this review and generate initial theories. The PubMed database and Google scholar were primarily used to seek articles relating to the study’s aims. These included systematic and non-systematic review articles, key primary studies and any other article type that had relevance to goals of care discussions in acute hospital illness. Knowledge acquisition and abductive reasoning informed the construction of seven preliminary hypotheses, constructed in a Context-Mechanism-Output (CMO) format (i.e. “if (C)…then (M)…which results in (O)” (Table 1).

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Table 1. Context-mechanism-output configuration to generate hypotheses for realist synthesis.

https://doi.org/10.1371/journal.pone.0299933.t001

Adapted from Mitchell et al [31], Papoutsi et al [32] and Cottrell et al [33]

2. Stakeholder consultation and refinement of initial theory

The CMO hypotheses were refined following consultation with 16 key stakeholders that had clinical, research or patient experience relating to goals of care conversations and decision-making, an approach adopted in previous realist reviews [33, 34].

Stakeholders were identified within existing networks of both authors and selected based on their personal and/or professional background, their level of experience and if it was felt that they would add value to theory building. Efforts were made to involve a range of different stakeholders from different personal and professional backgrounds to give a rounded insight. Discussions were held individually and were face-to-face, via video or audio call depending on their preference. The 16 stakeholders consulted included 10 hospital-based doctors (specialising in intensive care medicine, general medicine, emergency medicine and palliative care), one specialist nurse (critical care outreach), two hospital managers, one physiotherapist and one former patient with experience of having been cared for in an ICU, and their spouse. Each consultation lasted between 30–60 minutes. Each interview involved a short presentation of the latest iteration of the CMO hypotheses and open-ended questions to ascertain their general thoughts and feelings towards these and whether or not they would recommend any modifications based on their experiences. Field notes were taken with reflective summaries and modifications made to the CMOs where appropriate. When there was doubt and/or ambiguity, agreement was sought between JG and JK. Table 2 presents the resulting CMO following consultation with all 16 stakeholders with relevant modifications made.

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Table 2. Proposed CMOs following scoping literature search and stakeholder engagement.

https://doi.org/10.1371/journal.pone.0299933.t002

3. Searching for and appraising the evidence

The refined CMO hypotheses informed a search strategy for the main literature search (S1 Appendix). Searches were run using Medline, Pubmed, Embase, CINAHL, PsychINFO and Scopus databases from 1946 to 14 July 2023. Purposive searching for additional relevant articles that would contribute to programme theory building and theory testing was performed iteratively. These were identified by citation tracking from papers already identified and Google Scholar. Relevant non-published grey literature was also sought using OpenGrey and Google search engines. The screening and selection of articles were based on (i) relevance: whether they contribute to theory building and testing and (ii) rigour: whether the method used to generate that particular piece of data is credible and trustworthy [35]. Although there were no geographic restrictions, papers were limited to those written in English.

Relevance screening.

Articles were screened for relevance (eligibility) based on their ability to contribute to the evidence of theory building (CMOs) and the study’s initial aims and objectives [30]. The inclusion criteria included articles that had any relevance to any of the CMOs. This was purposely kept broad to reduce the risk of paper selection bias. There were no absolute exclusion criteria as this allowed for important themes to be extracted that might be highly relevant to the programme theory, for example, if they were outside the context of the acute hospital setting but thought to be highly applicable to our study aim (e.g. ethics or behavioural science studies). Exclusion criteria included clinical-based studies: (i) that did not involve adult patients (adults defined ≥as 18 years of age), (ii) that took place exclusively outside the hospital setting (e.g. primary care) (iii) where patients were not admitted to hospital due to acute illness (e.g. hospital outpatients, rehabilitation centres) and iv) did not involve a direct conversation with the patient. For any article meeting any relative exclusion criteria, but still considered to be highly relevant to programme theory building an agreement was sought between JG and JK. Relevance screening conformed to two stages: (i) title and abstract alone, (ii) the whole article.

Rigour screening.

The final screening process involved critical appraisal of the evidence using well-established quality appraisal checklists developed by the Joanna-Briggs Institute (JBI) [36]. JBI appraisal tools were used for analytical cross-sectional studies, case series, cohort studies, qualitative studies, quasi-experimental studies, randomised control trials, systematic reviews, text and opinion articles. For ethics-related studies, Jansen and Ellerton’s Ethics critical appraisal worksheet [37] was used and the Mixed Methods Appraisal Tool for mixed methods studies [38]. Each article was assessed against each of the criteria of the appropriate checklist according to the study design, to give a final absolute score and a relative score as a percentage of the total number of scoring criteria assessed against (S2 Appendix). Articles were given a final quality grade rating depending on relative scoring ranges of less than 60% (low), 60–79% (moderate) and greater than or equal to 80% (high) (Table 3). Expert opinion and ethical argument papers were all rated as low-quality grade rating irrespective of the absolute or relative scores. This is consistent with internationally recognised guidance of hierarchal evidence [39, 40], where expert opinion has the highest risk of bias and therefore thought to be the least trustworthy for this review.

4. Extracting data and synthesis of findings

Data analysis and synthesis processes were flexible, iterative, and creative. To maintain transparency, JG and JK kept notes from a series of meetings during which they discussed each article and its contribution to the CMOs. We used abductive reasoning for the non-observable data to create associations and to recontextualise the data, creating new plausible conclusions [30, 41]. Moving between theory and data, we used retroduction to explore, compare and explain observable patterns in data, whilst also looking for other relevant themes not captured by initial programme theories. Abductive reasoning was used to create associations between theories. For both processes, JG and JK discussed potential explanations, new findings, and strategies to refine and revise the CMOs. We retained notes and a schematic as an audit trail of decisions made. The final synthesis represents an interpretive, yet robust collation of the supporting evidence located for each of the CMOs.

Results

Following de-duplication, relevance and rigour screening, 52 articles were selected for the final realist synthesis. The data screening processes using the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) are depicted in Fig 1. Articles were principally from the USA and European countries (Table 3). Article types represented were qualitative (n = 27), randomised controlled trials (n = 2) observational analytical (n = 3), quasi-experimental (n = 2), cohort (n = 1), mixed methods (n = 5), systematic reviews (n = 3), ethical debate (n = 1), guidance documents/non-systematic review and expert opinion pieces (n = 8). Of the three included systematic reviews, only one of the reviews contained two articles featured in this review [42] (Deep et al, 2008 [43, 44]]. Table 3 summarises study characteristics which include evaluation of relevance and rigour analysis. To promote transparency, the data presented in Table 4 are direct quotations from the supporting literature [30].

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Fig 1. Preferred reporting items for systematic reviews and meta-analysis (PRISMA).

https://doi.org/10.1371/journal.pone.0299933.g001

CMO One: Information provided to patients in a personalised and acceptable way that allows them to fully understand about their illness, the benefits and burdens of treatment options and potential outcomes, will ensure they are more informed to be able to participate in more meaningful goals of care conversations

Information provided to patients and or their relatives about their clinical condition, likely prognosis and benefits and burdens of life-sustaining and alternative treatments were explored in 26 articles [16, 22, 23, 42, 43, 45, 51, 52, 56, 58, 63, 67, 70, 7379, 8186, 89]. Collective analysis of these papers yielded six sub-themes that related to (i) patient preconditions to receiving information, (ii) inconsistencies in information provision by a doctor to a patient (iii) personalisation of information, (iv) the role of decision aids, (v) patient understanding of information and (vi) consequences of being poorly or misinformed.

i) Preconditions to receiving information

The patient’s or their family’s perception that the content discussed is considered to apply to them was an important prerequisite when engaging in any goals of care conversation [22, 58]. This was particularly relevant for patients at the end-of-life. Elderly patients with frailty and multiple comorbidities were less likely to relate to conversations relating to end-of-life care due to a lack of awareness that they are more likely to be in the last phase of life compared to those with a clearer end-of-life trajectory (e.g. people with cancer) [23].

ii) Inconsistencies in the content of information provided to patients

Inconsistencies in the content of information provided to patients were common and related to the variability of doctors’ explanation of a patient’s clinical condition, prognosis and the risks versus benefits of different treatment options [45, 84]. Conversations relating to do-not-attempt cardiopulmonary resuscitation (DNACPR) were more common than other life-sustaining interventions. Prognostic uncertainty was perceived by doctors to be difficult to manage and communicate [16, 86]. The words “death” and “dying” were infrequently mentioned [45, 79] and implied rather than expressed [79]. Moreover, palliative care-related options were not as readily discussed [45] and in some cases only discussed after patients had expressed wishes to forgo life-sustaining care [45]. Information provision was incomplete when doctors perceived the risk of information ‘overload’ or the risk of confusing the patient, particularly when the doctor considered that the topic of conversation was not immediately relevant to the patient [22]. Information provided was also considered to be inadequate if the doctor sensed rising tension or conflict with the patient and or their family due to disagreements or divergent views between them and the patient or family [22].

iii) Information not being provided in a personalised manner

Information provided by doctors commonly focussed more on medical or procedural interventions and less on broader life values [42, 43, 45, 47, 56, 58, 75, 77, 82]. Factors associated with this included the doctor’s perception that the patient was not at the end-of-life [67, 76], when a medical intervention or surgical procedure was proposed [81], the perception by the doctor that quality of life was a “softer topic” [16], the perception that medical intervention was easier to communicate than personalised life goals [89]. Language barriers presented additional challenges for doctors in providing personalised information to patients [51]. When quality of life was mentioned by patients, doctors did not always ask patients to elaborate further [45] and often reverted to how they viewed quality of life, which may differ from the quality of life as perceived by the patient.

iv) The role of decision aids

The purpose of decision aids is to assist patients in understanding their clinical situation and facilitate communication between doctor and patient. Their underlying purpose is to help patients participate in medical decisions that relate to them [51, 52]. Two studies demonstrated that decision aids allowed more consistent information to be delivered to patients. However, this was not specific to the needs of minority ethnic and or vulnerable patient groups [51, 52].

v) Understanding of information

Patient’s understanding of the information provided to them was influenced by their lack of mental capacity due to pre-existing cognitive impairment, for example, dementia [83], the effects of acute illness including, the presence of physical pain or other associated discomfort [56, 58, 73, 82]. For patients who were deemed to have mental capacity, information was often poorly or incompletely understood. This occurred when the information provided by the doctor exceeded the patient’s ability or capacity to understand and retain specific items of information. Doctor factors that were associated with information overload included the overuse of medical jargon [42, 45, 73], talking too quickly [58] and providing too much information at a specified point in time [42, 45, 58, 73]. Patient factors that were associated with a lower proficiency for understanding were low health and information literacy [51, 70], high emotional states [78, 82] and language barriers [51]. These all contributed to poor understanding between doctor and patient. Prior patient experience of hospital treatment and doctors checking understanding of any new information provided contributed to improved understanding [47]. Although doctors acknowledged the importance of patient understanding and recognised patients’ expectations, wishes and values [47], these were inconsistently explored and patients did not always feel empowered to speak up or own up in the event of a lack of understanding [42]. This resulted in patients being less informed [42].

vi) Consequences of being poorly or misinformed

Poor or misinformation resulted in poor recollection by the patient of the contents and nature of discussions about the goals of care. This had the potential to contribute to fluctuating patient treatment preferences, increase conflict between patients and their families and doctors and increase the possibility of discordant treatment [43, 75, 77].

CMO Two: Patients receiving information about treatment options and their potential outcomes that is biased, together with the impact of other external factors, will have an influence on the judgments patients make about their wishes for future care and decrease the likelihood of a shared decision-making approach

A) Doctors

Intuition often predominates over analytical decision-making by doctors in acute hospital illnesses [54, 57, 82]. Intuition uses experience, feelings and accumulated judgments that culminate in heuristics (mental shortcuts). These are prone to error and bias which can translate into communication biases [86] or conversation avoidance [49]. Although some doctors acknowledged the importance of remaining neutral, factual and non-influential when providing information [47] this was contrary to what was observed in practice. Conversation-framing bias was reported in eight studies [42, 47, 54, 55, 58, 59, 69, 79] and was more common in situations where higher clinical uncertainty was present [69]. ‘Framing’ is a cognitive bias that relates to how a patient’s decision or thought process may be influenced by the way information is presented to them by their doctor. Evidence demonstrated that doctors sometimes persuade patients to agree with their thoughts about the goals of care [42, 54, 55, 58, 59, 69, 79]. The rationale described was superior clinical knowledge to make better ‘best interest’ decisions. It was also thought to minimise the influence of highly charged emotions experienced by families concerning acute illness that could potentially contradict the patient’s long-term goals [42, 58, 59].

Fears of repercussions were reported as a barrier to having goals of care discussions and were perceived to change the nature of such conversations. These were related to fears of causing undue suffering and distress, fears of a “difficult reaction” from family or patients, leading to conflict and fears of medico-legal repercussions [80]. As a consequence, this resulted in doctors being more hesitant about withholding life-sustaining treatment [85].

B) Influence by families

Families played a varying role in goals of care conversations. This may be influenced by different personal sociocultural beliefs about illness and the role that they (and their patient relative) were expected to play in such conversations [52]. There were examples of situations where patients viewed their family members as integral to goals of care discussions, sometimes even deferring to them for all discussions and decisions relating to their medical care. However, this was not always identified by their doctors who sometimes made efforts to speak with the patient when family members were not present [58]. Discordant views regarding treatment options also existed between patients and family members [47]. This occurred when patients and their families held different motives and priorities relating to what they viewed as desirable medical treatments and associated outcomes [43, 75, 85], for example, the family prioritising survival whilst underappreciating the trade-offs of physical and mental morbidity (e.g. delirium and psychosis) associated with life-sustaining treatment [85]. Strongly expressed views from a family member were shown to influence a patient’s thought processes relating to goals of care [80]. This was particularly relevant when the intra-family conflict was present and had the potential to harm trusting relations between doctors, family and patient [73] culminating in fewer goals of care conversations [49]. Doctors also recalled some of their patients’ wishes centred more on what their family wanted rather than them, which in some circumstances contradicted their values [46].

The impact of a family’s emotional state was intrinsically linked to the appropriate timing of conversation about goals of care [23, 54, 63, 73, 83, 85]. This was particularly relevant to crises where there was an imminent risk of death [65]. Highly charged emotions were identified as being further intensified by the presence of low health and information literacy among family members [54, 80]. This sometimes resulted in instability of expressed preferences and views based more on feelings and less on facts or balanced opinions [82]. Unrealistic expectations, usually associated with undue optimism relating to prognosis and treatment were also evident [49, 90].

c) Other influencers on Information provided

The internet and media reporting, for example, the reporting of “miracle cases”, may be influential towards patient and family misconceptions about treatments and prognosis before goals of care conversations [60, 83], potentially leading to mistrust [60, 83]. Prior discussions with doctors that had inconsistent themes were also shown to impact conversations. This was particularly relevant when patients and their families had the desire to “snatch” clinical news from different conversations, hoping to get a custom-made truth that better fitted their emotional desires regardless of their positive or negative value [87]. Language barriers and the use of translators resulted in additional biases, omissions or additions introduced by the interpreter and are thought to have potentially significant consequences on goals of care conversations [71].

CMO Three and Four: Doctors that have the confidence and interpersonal skills to form more trusting relationships with their patients, will result in patients feeling more supported and empowered to speak more openly about their goals of care in acute illness, leading to a better shared understanding between them and their doctor

The type and strength of the doctor-patient relationship were integral to the development of mutually trusting relationships.

(A) Skills of doctors (clinical expertise, communication and interpersonal skills) to develop trusting relationships

Appropriately skilled doctors were perceived by patients/families to have credibility, clinical expertise and a high level of competence [58, 60, 61]. Appropriate interpersonal skills were also perceived as important. These included measures such as introducing themselves, addressing patients or surrogates by their name, being personable [47, 72] and warm [61, 85], being approachable [85], listening to and understanding patients’ queries and concerns [23, 60, 63], providing information in a clear and jargon-free manner [19, 47, 61, 73, 82], showing honesty [85], compassion [47, 61, 73] and treating patients with respect and dignity [16]. The inclusion of family members in discussions (with the approval of the patient) was also deemed important in certain situations [19]. In situations when a patient lacked capacity, some family members took more of an advocacy role as the patient’s spokesperson, sometimes by default. This sometimes resulted in guilt, either expressed or implied by the family, particularly when asked for their input on potentially withdrawing or withholding life-sustaining care for those at the end-of-life. Doctors who acknowledged this and were understanding, supportive and compassionate resulted in more trusting relations and paved the way for families to discuss such issues more openly [23]. Continuity of care associated with its physical presence and frequent communication were also integral to building a relationship, rapport and mutual trust between doctors and patients [19, 23, 42, 60, 63, 72, 79, 85].

However, doctors frequently admitted lacking confidence and skills in discussing goals of care. Fear and anxiety of “taking away hope” and or getting into conflict with patients or families were reported, particularly when the patient and their families were perceived to have unrealistic expectations [16, 42, 79]. Patient or family trust was also perceived by doctors to be threatened when decisions to limit or withhold life-sustaining treatments were suggested, due to fear of abandonment and inferior care [85]. Doctors felt poorly equipped in managing and communicating prognostic uncertainty and making treatment recommendations when uncertainty was present [23, 45, 63, 76, 80, 85]. This culminated in doctors providing patients with what was viewed as sub-optimal and inconsistent information [76], requesting patients make treatment choices that risked contradicting their best interests and personal values [42, 57, 76, 81], or doctors avoiding goals of care discussions altogether [23, 49, 57, 63, 86].

Further communication skills training and support, for example, via mentoring were welcomed by doctors [19, 63, 67, 72]. However, the effectiveness of training interventions has not been established [76]. Uncertainties remain as to where the focus and content should lie, what are the most effective ways of delivering training, the optimal intensity and frequency of training interventions, how to measure their effectiveness in the short and longer term and how to engage less motivated learners [45]. The role of interpersonal accuracy and behavioural adaptability is also unclear. This relates to a doctor’s ability to recognise emotions and motivating factors or thoughts in patients (interpersonal accuracy), and adapt their communication style accordingly (behavioural adaptability) [47]. In one study, female doctors had positive correlations between interpersonal accuracy and verbal and non-verbal behavioural adaptability which translated to more positive patient consultation outcomes (for non-verbal adaptability) [50]. However, for male doctors, better interpersonal accuracy was linked to less non-verbal adaptability for unclear reasons [50].

B) Other external threats to trust

Pre-conceived views by patients and their families influenced trust in their treating doctor. Negative prior experiences with healthcare and information retrieved from the internet and other public sources of information contributed to a lower level of trust by the patient and family [60]. This was more prominent among those with relatively low health literacy, those who were less well educated, unemployed, with no medical insurance (in a fully privatised healthcare system), or those who were homeless [51]. Mistrust was also threatened when patients felt stigmatised because of their medical conditions such as human immunodeficiency virus and Acquired Immune deficiency syndrome (HIV/AIDS), psychiatric illness, including anorexia, bulimia, and substance abuse, sickle cell anaemia and other physical disabilities [51].

Cultural differences between doctors and patients and or families combined with a low level of cultural literacy (understanding) amongst doctors were detrimental to a trusting relationship [46]. Cultural differences might relate to “do not attempt cardiopulmonary resuscitation” (DNACPR) orders, the taboo around death and how death is perceived and communicated [46, 82]. However, families of culturally diverse backgrounds lacked awareness of how to communicate their cultural needs which sometimes resulted in conflict [49] or being stereotyped based on their religion or culture when their values were not always completely aligned [46].

Power differentials between doctors and patients and their families influenced trust [23, 63, 68, 80]. Furthermore, a disproportionate level of delegated power from doctor to patient and their family was considered a risk to the ongoing doctor-patient and family relationship, particularly when there were discordant views between both parties [23, 63, 68, 80].

C) The Impact of Trust and Mistrust

Mutual trust between doctors and patients and their families facilitated improved understanding and positively enhanced ongoing relationships and rapport [60, 73]. Conversely, a lack of trust or misconception about treatments translated to feelings of abandonment, neglect or inferior care by the patient and their family [60, 63]. This sometimes resulted in more invasive care that was not always perceived to be appropriate but thought necessary by the doctor to avoid further conflict [60]. Frequent end-of-life communication and conflict resolution [63] had the potential to cause a high emotional burden for the doctor, avoidance of further engagement between doctor and patient in goals of care planning, or a breakdown in mutual trust between the two respective parties [16, 23, 51, 86].

CMO Five: Doctors that are better able to identify patients who are most likely to benefit from goals of care conversations in acute severe illness will prioritise those most in need of such conversations, ensuring these conversations are initiated

Conversations were delayed due to a lack of precipitating events that prompted doctors to have goals of care conversations [23]. In hospital, focus was often placed on physiological parameters without recognition of the dying process [86]. Moreover, some patients had unpredictable disease trajectories which made it difficult to judge the best time to have conversations [79]. Doctors were sometimes prompted by nurses to hold conversations when the nurse perceived a patient was deteriorating and felt a discussion was needed, or when assertive family members felt uninformed and desired further information [22, 85].

In quality improvement studies, electronic health alerts combined with coaching did not increase the proportion of documented goals of care conversations [66, 72]. Intervention bundles used to facilitate conversations increased the frequency of discussions but did not improve the quality of information discussed [63, 72]. It is unclear whether this was due to the direct impact of the bundle itself or whether the bundle prompted a culture shift that indirectly improved the frequency of discussions [63, 72].

CMO Six: Doctors who see the benefits and value of holding goals of care conversations in acute severe illness are more likely to be motivated and incentivised to hold such conversations which increases the number of conversations that are initiated

Preventing non-beneficial treatment during acute hospitalisations was a motivator for doctors to hold goals of care discussions [67]. Doctors who also witnessed other benefits of complex interventions designed to promote goals of care conversations, for example, the Serious Illness Conversations Programme (SICP) were incentivised to engage. Perceived benefits included the ability to provide better patient care, giving the platform for patients to “open up” and adding to their skill mix [64]. Doctors also reported being more satisfied with their work due to being able to connect with the patient and family at a deeper level and reducing moral distress [64]. However, goals of care conversations were also perceived as a “tick box” exercise [82]. Moreover, it was not always obvious whose responsibility and role it was to hold or initiate them [42]. The path of least resistance was considered to be a disincentive to engage in early goals of care conversations. Specifically, it was considered to be easier to withdraw life-sustaining treatments once the patient had experienced such treatment and expressed that they did not want it to continue as opposed to deciding to withhold life-sustaining treatment, including accompanying patient and family discussions, from the outset [16].

CMO Seven: Healthcare organisational “buy-in” and a better understanding of organisational related facilitators and barriers to conducting goals of care conversations will allow the necessary organisation changes to be made that promote and facilitate these conversations between doctors and patients in acute severe illness

Organisational policies that promoted shared decision-making and the presence of prior positive patient and or family experiences enhanced patient trust and their willingness to engage in goals of care conversations. Organisational barriers to goals of care conversations included the perceived lack of an appropriate location in a busy clinical environment to hold sensitive discussions [23, 80] and lack of doctor time due to other competing interests [16, 23, 58, 70, 80, 82, 88]. This was further compounded by the lack of administrative support to arrange and document the conversation [80], the lack of continuity of care or when the informational needs of the patient or family were high or discordant views were present between doctor and patient and or family [16, 23, 80, 82, 88]. Mistrust in the organisation from the patient and family perspective based on prior negative experiences translated to concerns about inferior ward treatment for DNACPR decisions [70].

Despite their willingness to be more involved, nurses often felt underutilised and undervalued in goals of care conversations. They reported their value included merely acting as an intermediary role between doctors and patients and their families. For example, priming patients and their families for these discussions [16, 63], facilitating information exchange between doctors, patients and their families [16], playing a supportive follow-up role in situations when doctors delivered bad news and reinforcing information [63]. However, they felt they could improve continuity of care if organisational work challenges allowed them to do so. In the analysis of the SICP, having a unit champion to undertake the administrative roles relating to goals of care conversations was well received and had the potential to facilitate conversations further [64]. Importantly, none of the included studies explored the roles of other allied healthcare professionals, for example, physiotherapists, clinical psychologists and social workers. Aside from staffing, other themes were suggestive of institutions needing to be culturally aware and inclusive of the needs of patients from ethnically diverse and minoritised communities to maintain trust [51, 52].

Discussion

We present the first realist review to develop and refine an initial theory to explain goals of care communication between doctors and patients with severe acute illness in hospital settings. Through examination of our seven CMOs, we identify that patient-centred care in acute illness in hospitals requires shared understanding between doctor and patient about treatment goals and priorities. Achieving this requires a universal yet nuanced understanding of the multiple facilitators, barriers and complexities involved across each of the stakeholders.

Whilst quality improvement initiatives have attempted to increase patient and family engagement in goals of care planning, for example, the AMBER Care bundle and ReSPECT [48, 91, 92] they have struggled to gain widespread adoption [22] or to become routinised into mainstream practice [93]. Follow-up evaluation studies highlight a mismatch in communication and understanding between doctor and patient [64] and difficulties in identifying the most suitable patients to hold goals of care [93]conversations with at the most appropriate times. Although these studies partially explain the reasons for the low uptake of these initiatives in clinical practice, which include, for example, the absence of a champion to consistently support the delivery of interventions with fidelity or the absence of adequate training [93], they nevertheless, overlook other important factors. The use of realist methodology has allowed us to explore this further. This approach offers advantages to a traditional systematic review because instead of aiming to address a solitary research question, this approach incorporates the most relevant factors that may influence goals of care discussions and how these factors may be inter-related with one another, culminating in a much broader understanding of what happens in real-life practice.

Review and further refinement of CMO hypotheses

Further analysis and reasoning suggest that if we are to understand with more confidence what happens in real-life practice in goals of care planning in acute illness, considering each CMO separately and in isolation is likely to be oversimplified. It is more appropriate to first consider the factors that influence to what extent goals of care conversations are initiated.

Here, the onus lies largely with the doctor and their motivation and willingness to engage. Our collated evidence suggests that this motivation requires “buy-in” from the doctor about the benefits of goals of care planning (“context” hypothesis 6) together with feeling appropriately trained, skilled and confident to hold such conversations (“context” hypothesis 4). Therefore hypotheses 4 and 6 are closely intertwined and share the same “mechanism", in this case, motivation, that translates to a new "outcome” of interest–initial engagement in goals of care conversations between doctor and patient. In addition, hypothesis 5 relates to a process or system, where patients most likely to benefit from goals of care conversations could be better identified (“context” hypothesis 5) to aid clinical prioritisation (“mechanism” hypothesis 5), in promoting goals of care conversations. However, existing evidence is lacking to support this theory at present.

The second consideration involves the nuances in how conversations are conducted once initial engagement has occurred. This involves a more complex relationship between the “context” and “mechanisms” of hypotheses 1 (information provision), 3 (mutual trust) and 4 (skills and confidence of doctors) than our initial theory suggested. Our proposed model (Fig 2) depicts how the “context” and “mechanisms” of these hypotheses may inter-relate and combine to achieve the final “outcome” of interest–a shared understanding between doctor and patient regarding treatment goals and priorities. In this model, it is of note that the skills, confidence and interpersonal relations of doctors ("context” hypothesis 4) play a dual role in conversation initiation and the conversation process after initiation via two separate “mechanisms” and is therefore a critical component of goals of care communication in this setting. Our data did not suggest any refinements needed for CMO2 (communication bias) or CMO 7 (organisational influence) which are both relevant.

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Fig 2. Model proposing how CMO hypotheses may be inter-related.

https://doi.org/10.1371/journal.pone.0299933.g002

Exploring the evidence further

Initiation of goals of care conversations requires doctors to value the importance of and acknowledge the benefits of a patient-centred approach [64]. Decreasing the likelihood of non-beneficial interventions, providing better patient care and allowing more open communication with the patient and their relatives were reasons cited by doctors that motivated and incentivised them to engage with patients and families about goals of care [64]. However, despite this, time pressures from competing work and the lack of any validated tools to identify patients most likely to benefit from goals of care conversations at the most appropriate times present additional challenges [23, 79, 86]. Conversations held too early risk mistrust among patients, particularly when they perceive the information provided is not relevant to them at all, or just yet [22, 58]. Conversations held too late may be limited by high emotional states at crisis points that have the potential to contradict a patient’s longer-term values and increase the risk of burdensome care [54, 65].

Evidence also supported doctors lacking confidence and competence in initiating and holding goals of care conversations often due to fear of conflict when discordant views were present or anxieties relating to discussing end-of-life issues [16, 23, 42, 45, 49, 57, 63, 76, 7981, 8486]. Communication skills training was frequently welcomed by doctors and studies show a range of training formats. However, evidence shows the effectiveness of any communication training is generally lacking [63, 72, 76, 83, 94, 95]

A key aim is for doctors to harbour a positive relationship with their patients and families and foster trust. Open and honest communication (in a clear way that the patient can understand), showing competence and confidence, being personable, and “warm” and continuity of care were key factors described by patients/families to gain a trusting relationship with their doctor [58, 60, 61, 73]. However, information provided by doctors was frequently inconsistent [45, 84], biased [42, 54, 55, 58, 59, 69, 79], not personalised [42, 43, 45, 56, 58, 77, 82] and often poorly or misunderstood [42, 45, 58, 73]. These can negatively impact trust leading to discordant views, all of which have the potential to result in higher burdensome non-beneficial treatment [60]. Low cultural literacy and lack of cultural awareness amongst doctors risk them failing to adapt conversations to the needs of patients from minority ethnic communities. This can be of further detriment to trusting relationships between doctor, patient and family [46, 80].

Proposals for further research, training and role allocation

Future work should focus on ways of ensuring that doctors are aware of and initiate and deliver goals of care conversations aligned to factors highlighted in this realist review. This could be accompanied by a realist evaluation [9698] of training in this area with emphasis on how doctors are currently trained and how existing training could be modified to ensure doctors have the appropriate skills and confidence to effectively identify and communicate with patients and their families about goals of care in acute illness. Moreover, the development of validated training outcomes and patient experience measures would pave the way for the development of effective training methods and approaches [94, 95] Aside from doctor training, the role of nurses and other allied healthcare professionals requires further exploration. Our findings identify that nurses are currently underutilised and undervalued in goals of care conversations [16, 63]. Their contribution may be limited because there is no defined formal nursing role. However, nurses have considerable potential to facilitate communication between doctors and patients by enhancing mutual understanding, communicating patient concerns to doctors, and providing emotional support to patients and families. These have the potential to foster better relationships, increase the level of mutual trust and promote more timely conversations [16, 63, 78]. This is particularly relevant in a busy healthcare system where doctors are often time-pressured to have two-way communication between themselves and patients and or families. Although this review did not highlight any role for other allied healthcare professionals, for example, but not exclusive to physiotherapists, clinical psychologists, speech and language therapists and social workers; this may well be worth exploring further in future studies. Each allied health professional may offer a different perspective and skill mix, which may be of benefit to doctors, patients and their families in the context of goals of care discussions. Furthermore, this may also pave the way for multi-professional training which has been shown to improve confidence, knowledge and skills amongst healthcare professionals who underwent a training workshop in “difficult conversations” [95].

There is a need to further understand organisational and healthcare systems in addition to wider societal influences on the doctor-patient interaction. Finally, there is a need to explore the nuance of goals of care discussions. It is here that health professionals for example doctors may use a variety of ‘voices’: the ‘doctor voice’ to ask specific questions; the ‘educator voice’ to share information and help patients understand their illness, situation and treatment, and the ‘fellow human voice’ to convey empathy. By showing empathy through comments for example “I understand” or “That must be really tough”, health professionals share a ‘fellow human voice’ encouraging patients to discuss goals of care [33].

Strengths and limitations of this review

A strength of this realist review is both its explanatory and theoretical nature- to understand the complex mechanisms underlying goals of care discussions with patients with severe acute illness in hospital settings. This style of synthesis shifts the focus from specific interventions and services to broader underlying mechanisms or principles. Second, we actively incorporated key stakeholders’ views alongside published literature to refine the review focus to areas considered most pertinent to clinical practice. Twenty-seven of the studies included within the review were qualitative and five were mixed method, a strength being that studies of this type permitted salient contexts, mechanisms and outcomes to be understood in detail, particularly where ‘thick’ accounts were evident.

However, the findings and recommendations of this review would not be complete without reference to the limitations of this work. Whilst a high number of studies in this review were qualitatively orientated which allow for a deeper understanding of the key concepts, few studies made use of methodological approaches that permit wider generalisation from their findings. Second, most of the identified studies were from Global North and Westernised countries (Australia, Canada, USA, UK or other European locations) and may not translate to non-westernised societies. Third, the influence of cultural values was not explored in detail nor was any detailed analysis of the family influence and patient-family relations [99]. This might include any possible impact of family persuasion or dominance in conversations between patients and doctors and discordant views between patients and families. Fourth, many included studies were classified as being ‘weak’ to ‘moderate’ concerning their methodological design and therefore subject to potential bias (Table 3). Fifth, this review did not explore how shared understanding between patient and doctor relates to the type of patient-doctor relationship. This relates to how decisions are made once there is mutual understanding between patient and doctor of treatment goals and priorities and incorporates a spectrum of decision-making from a paternalistic approach through to pure shared decision-making [100]. This is regarded as a separate entity and warrants a separate study. Sixth, multiple ‘wrap-around’ preconditions that underpin successful shared decision-making may also be present. This necessitates a socioecological lens [101] in which a whole systems strategic approach acknowledges multiple, interconnected elements potentially exist and reside at different societal and organisational levels of influence (microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (healthcare services/systems) and the macrosystem (societal influences). All may be necessary to consider before, during and after implementing shared decision-making conversations and warrant further exploration.

Conclusion

This realist review highlights the factors that contribute to a shared understanding of treatment goals and priorities between patients living with acute life-threatening illnesses and healthcare professionals caring for them. Moreover, it examines the respective roles of patients, their families, and healthcare professionals, and the ways they inter-relate with each other throughout this process, which at times can be highly nuanced. The challenge now is to operationalise the ways this information provides mutual benefit to patients, their families and those who care for them, whilst acknowledging being flexible to the continually changing landscape of healthcare and wider society. Based on the findings from this review, we suggest that local educational hubs are organised, and geared towards continual professional development and learning to capacity-build healthcare professionals’ skills and competencies when undertaking goals of care discussions. This could be achieved using repeated ‘plan-do-check-act’ (PDCA) cycle loops [102], either making use of role-play in a simulated environment or real-life, real-time settings, acquiring constructive feedback from colleagues and where appropriate from patients and their families. We also believe the themes from this review should serve to guide the planning, execution and resultant learning from goals of care discussions, thereby continually modifying and developing clinical practice and experience. Consistent exposure and engagement in PDCA-specific goals of care discussions may improve competence and confidence over time, one of the barriers we identified in this review.

It is also vital to recognise the context of how these conversations are enacted. Recognition must also be placed on prior understanding of the most appropriate type of encounter between health care professionals and patients necessary for each clinical context [100]. For example, this may include a more paternalistic approach for situations where there is little or no chance of recovery or a more shared decision-making approach where situations of clinical uncertainty are present [103] and where a greater need for patient engagement is possible.

On a wider scale, the key is to provide value to doctors, patients and healthcare planners. Objective outcome measures that demonstrate effective communication in this field need to be defined and developed for each key stakeholder. From a healthcare professional and patient perspective, the focus may lie on improving the healthcare experience, whilst healthcare planners may also be interested in how more effective goals of care communication may positively influence other value-based metrics, for example, the use of scarce healthcare resources and ensuring they are equitably accessed by those who stand to benefit from them. This requires collaboration between all parties including service users to consider the most important outcome measures which could then be developed and validated using more traditional research methods. The combination of these shorter and longer-term strategies provides a foundation for further development towards optimal engagement and communication relating to goals of care.

References

  1. 1. Belanger E. Shared decision-making in palliative care: Research priorities to align care with patients’ values. Palliative Medicine. 2017;31(7):585–6. pmid:28618900
  2. 2. Kuosmanen L, Hupli M, Ahtiluoto S, Haavisto E. Patient participation in shared decision-making in palliative care–an integrative review. Journal of Clinical Nursing. 2021;30(23–24):3415–28. pmid:34028923
  3. 3. Shay LA, Lafata JE. Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Making. 2015;35(1):114–31. pmid:25351843
  4. 4. Mulley AG. 30 The role of shared decision making in achieving allocative efficiency in health systems. In: Elwyn G, Edwards A, Thompson R, editors. Shared Decision Making in Health Care: Achieving evidence-based patient choice: Oxford University Press; 2016. ISBN: 9780198723448
  5. 5. Brabers AE, van Dijk L, Groenewegen PP, van Peperstraten AM, de Jong JD. Does a strategy to promote shared decision-making reduce medical practice variation in the choice of either single or double embryo transfer after in vitro fertilisation? A secondary analysis of a randomised controlled trial. BMJ Open. 2016;6(5):e010894. pmid:27154481
  6. 6. Secunda K, Wirpsa MJ, Neely KJ, Szmuilowicz E, Wood GJ, Panozzo E, et al. Use and Meaning of "Goals of Care" in the Healthcare Literature: a Systematic Review and Qualitative Discourse Analysis. J Gen Intern Med. 2020;35(5):1559–66. pmid:31637653
  7. 7. Tonelli MR, Sullivan MD. Person-centred shared decision making. Journal of Evaluation in Clinical Practice. 2019;25(6):1057–62. pmid:31407417
  8. 8. Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns. 2014;94(3):291–309. pmid:24305642
  9. 9. Giuliani E, Melegari G, Carrieri F, Barbieri A. Overview of the main challenges in shared decision making in a multicultural and diverse society in the intensive and critical care setting. J Eval Clin Pract. 2020;26(2):520–3. pmid:31661726
  10. 10. Beldhuis IE, Marapin RS, Jiang YY, Simoes de Souza NF, Georgiou A, Kaufmann T, et al. Cognitive biases, environmental, patient and personal factors associated with critical care decision making: A scoping review. J Crit Care. 2021;64:144–53. pmid:33906103
  11. 11. Fried TR. Shared Decision Making—Finding the Sweet Spot. New England Journal of Medicine. 2016;374(2):104–6. pmid:26760081
  12. 12. Pel-Littel RE, Snaterse M, Teppich NM, Buurman BM, van Etten-Jamaludin FS, van Weert JCM, et al. Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review. BMC Geriatr. 2021;21(1):112. pmid:33549059
  13. 13. Stalnikowicz R, Brezis M. Meaningful shared decision-making: complex process demanding cognitive and emotional skills. J Eval Clin Pract. 2020;26(2):431–8. pmid:31989727
  14. 14. Triantaphyllou E, Yanase J. The seven key challenges for life-critical shared decision making systems. Int J Med Inform. 2021;148:104377. pmid:33517102
  15. 15. Waddell A, Lennox A, Spassova G, Bragge P. Barriers and facilitators to shared decision-making in hospitals from policy to practice: a systematic review. Implement Sci. 2021;16(1):74. pmid:34332601
  16. 16. Wubben N, Van Den Boogaard M, Van Der Hoeven JG, Zegers M. Shared decision-making in the ICU from the perspective of physicians, nurses and patients: A qualitative interview study. BMJ Open. 2021;11(8). pmid:34380728
  17. 17. You JJ, Downar J, Fowler RA, Lamontagne F, Ma IWY, Jayaraman D, et al. Barriers to Goals of Care Discussions With Seriously Ill Hospitalized Patients and Their Families: A Multicenter Survey of Clinicians. JAMA Internal Medicine. 2015;175(4):549–56. pmid:25642797
  18. 18. Lau N, Curtis JR. Identifying the Best Approach to Patient-Centered Decisions About Serious Illness Care: What’s Autonomy Got to Do With It? JAMA Netw Open. 2019;2(1):e187872. pmid:30681706
  19. 19. Mentzelopoulos SD, Slowther AM, Fritz Z, Sandroni C, Xanthos T, Callaway C, et al. Ethical challenges in resuscitation. Intensive Care Med. 2018;44(6):703–16. pmid:29748717
  20. 20. Roh H, Park KH. A Scoping Review: Communication Between Emergency Physicians and Patients in the Emergency Department. J Emerg Med. 2016;50(5):734–43. pmid:26818383
  21. 21. Hess EP, Grudzen CR, Thomson R, Raja AS, Carpenter CR. Shared Decision-making in the Emergency Department: Respecting Patient Autonomy When Seconds Count. Acad Emerg Med. 2015;22(7):856–64. pmid:26112797
  22. 22. Eli K, Hawkes CA, Ochieng C, Huxley CJ, Baldock C, Fortune PM, et al. Why, when and how do secondary-care clinicians have emergency care and treatment planning conversations? Qualitative findings from the ReSPECT Evaluation study. Resuscitation. 2021;162:343–50. pmid:33482270
  23. 23. Schonfeld TL, Stevens EA, Lampman MA, Lyons WL. Assessing challenges in end-of-life conversations with elderly patients with multiple morbidities. Am J Hosp Palliat Care. 2012;29(4):260–7. pmid:21868427
  24. 24. Bassford C, Griffiths F, Svantesson M, Ryan M, Krucien N, Dale J, et al. Developing an intervention around referral and admissions to intensive care: a mixed-methods study. Health Services and Delivery Research. Southampton (UK)2019.
  25. 25. Fritz Z, Slowther A-M, Perkins GD. Resuscitation policy should focus on the patient, not the decision. BMJ. 2017;356:j813. pmid:28246084
  26. 26. Chikhladze N, Janberidze E, Velijanashvili M, Chkhartishvili N, Jintcharadze M, Verne J, et al. Mismatch between physicians and family members views on communications about patients with chronic incurable diseases receiving care in critical and intensive care settings in Georgia: a quantitative observational survey. BMC Palliative Care. 2016;15(1):63. pmid:27449224
  27. 27. Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby JM, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ. 2021;374:n2061. pmid:34593508
  28. 28. Evans C, Higginson I, Manthorpe J. MRC guidance on developing and evaluating complex interventions: application to research on palliative and end of life care. 2013. ISBN 9780853284741
  29. 29. Pawson R, Greenhalgh T, Harvey G, Walshe K. Realist review—a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy. 2005;10 Suppl 1:21–34. pmid:16053581
  30. 30. Wong G, Greenhalgh T, Westhorp G, Buckingham J, Pawson R. RAMESES publication standards: realist syntheses. BMC Medicine. 2013;11(1):21. pmid:23360677
  31. 31. Mitchell S, Bennett K, Morris A, Slowther AM, Coad J, Dale J. Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review. Palliat Med. 2020;34(3):387–402. pmid:31431129
  32. 32. Papoutsi C, Mattick K, Pearson M, Brennan N, Briscoe S, Wong G. Interventions to improve antimicrobial prescribing of doctors in training (IMPACT): a realist review. Health Serv Deliv Res 2018;6 (10).
  33. 33. Cottrell L, Economos G, Evans C, Silber E, Burman R, Nicholas R, et al. A realist review of advance care planning for people with multiple sclerosis and their families. PLOS ONE. 2020;15(10):e0240815. pmid:33064749
  34. 34. Rycroft-Malone J, McCormack B, Hutchinson AM, DeCorby K, Bucknall TK, Kent B, et al. Realist synthesis: illustrating the method for implementation research. Implementation Science. 2012;7(1):33. pmid:22515663
  35. 35. Rycroft-Malone J, McCormack B, Hutchinson AM, DeCorby K, Bucknall TK, Kent B, et al. Realist synthesis: illustrating the method for implementation research. Implement Sci. 2012;7:33. pmid:22515663
  36. 36. Aromataris E, Fernandez R, Godfrey CM, Holly C, Khalil H, Tungpunkom P. Summarizing systematic reviews: methodological development, conduct and reporting of an umbrella review approach. JBI Evidence Implementation. 2015;13(3):132–40. pmid:26360830
  37. 37. Jansen M, Ellerton P. How to read an ethics paper. Journal of Medical Ethics. 2018;44(12):810–3. pmid:30135108
  38. 38. Hong QN, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, et al. The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Education for information. 2018;34(4):285–91.
  39. 39. Harris RP, Helfand M, Woolf SH, Lohr KN, Mulrow CD, Teutsch SM, et al. Current methods of the U.S. Preventive Services Task Force: A review of the process. American Journal of Preventive Medicine. 2001;20(3, Supplement 1):21–35. pmid:11306229
  40. 40. Oxford Centre for Evidence-Based Medicine Working Group. The Oxford 2011 Levels of Evidence. Oxford2011.
  41. 41. Danermark B, Ekström M, Jakobsen L, Karlsson J. Explaining Society: Critical Realism in Social Sciences2002.ISBN 9781351017831
  42. 42. Vanderhaeghen B, Van Beek K, De Pril M, Bossuyt I, Menten J, Rober P. What do hospitalists experience as barriers and helpful factors for having ACP conversations? A systematic qualitative evidence synthesis. Perspect Public Health. 2019;139(2):97–105. pmid:30010486
  43. 43. Deep KS, Griffith CH, Wilson JF. Communication and decision making about life-sustaining treatment: examining the experiences of resident physicians and seriously-ill hospitalized patients. Journal of General Internal Medicine.23(11):1877–82. pmid:18800206
  44. 44. Deep KS, Griffith CH, Wilson JF. Discussing preferences for cardiopulmonary resuscitation: what do resident physicians and their hospitalized patients think was decided? Patient Education & Counseling.72(1):20–5. pmid:18337051
  45. 45. Anderson WG, Chase R, Pantilat SZ, Tulsky JA, Auerbach AD. Code status discussions between attending hospitalist physicians and medical patients at hospital admission. J Gen Intern Med. 2011;26(4):359–66. pmid:21104036
  46. 46. Ashana DC, D’Arcangelo N, Gazarian PK, Gupta A, Perez S, Reich AJ, et al. "Don’t Talk to Them About Goals of Care": Understanding Disparities in Advance Care Planning. Journals of Gerontology Series A-Biological Sciences & Medical Sciences. 2022;77(2):339–46. pmid:33780534
  47. 47. Bedulli M, Falvo I, Merlani P, Hurst S, Fadda M. Obstacles to patient inclusion in CPR/DNAR decisions and challenging conversations: A qualitative study with internal medicine physicians in Southern Switzerland. PLoS ONE [Electronic Resource]. 2023;18(3):e0282270. pmid:36947569
  48. 48. Bristowe K, Carey I, Hopper A, Shouls S, Prentice W, Caulkin R, et al. Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle. Palliat Med. 2015;29(9):797–807. pmid:25829443
  49. 49. Brooks LA, Bloomer MJ, Manias E. Culturally sensitive communication at the end-of-life in the intensive care unit: A systematic review. Australian Critical Care. 2019;32(6):516–23. pmid:30237059
  50. 50. Carrard V, Schmid Mast M, Jaunin-Stalder N, Junod Perron N, Sommer J. Patient-Centeredness as Physician Behavioral Adaptability to Patient Preferences. Health Communication. 2018;33(5):593–600. pmid:28278605
  51. 51. Castaneda‐Guarderas A, Glassberg J, Grudzen CR, Ngai KM, Samuels‐Kalow ME, Shelton E, et al. Shared Decision Making With Vulnerable Populations in the Emergency Department. Academic Emergency Medicine. 2016;23(12):1410–6. pmid:27860022
  52. 52. Charles C, Gafni A, Whelan T, O’Brien MA. Cultural influences on the physician-patient encounter: The case of shared treatment decision-making. Patient Educ Couns. 2006;63(3):262–7. pmid:17000073
  53. 53. Deptola AZ, Riggs J. Inpatient Goals-of-Care Conversations Reduce Intensive Care Unit Transfers in High-Risk Patients. American Journal of Hospice & Palliative Medicine. 2019;36(7):583–6. pmid:30654632
  54. 54. Dubov A. Emotions, intuitions and risk perception in critical care. Dissertation Abstracts International: Section B: The Sciences and Engineering. 2018;79(5-B(E)):No Pagination Specified. https://dsc.duq.edu/etd/209
  55. 55. Dzeng E, Colaianni A, Roland M, Chander G, Smith TJ, Kelly MP, et al. Influence of institutional culture and policies on do-not-resuscitate decision making at the end of life. JAMA Intern Med. 2015;175(5):812–9. pmid:25845020
  56. 56. Griffiths F, Svantesson M, Bassford C, Dale J, Blake C, McCreedy A, et al. Decision-making around admission to intensive care in the UK pre-COVID-19: a multicentre ethnographic study. Anaesthesia. 2021;76(4):489–99. pmid:33141939
  57. 57. Haliko S, Downs J, Mohan D, Arnold R, Barnato AE. Hospital-Based Physicians’ Intubation Decisions and Associated Mental Models when Managing a Critically and Terminally Ill Older Patient. Med Decis Making. 2018;38(3):344–54. pmid:29166565
  58. 58. Harris E, Eng D, Ang Q, Clarke E, Sinha A. Goals of care discussions in acute hospital admissions—Qualitative description of perspectives from patients, family and their doctors. Patient Educ Couns. 2021;104(12):2877–87. pmid:34598803
  59. 59. Hart J, Yadav K, Szymanski S, Summer A, Tannenbaum A, Zlatev J, et al. Choice architecture in physician-patient communication: a mixed-methods assessments of physicians’ competency. BMJ Quality & Safety. 2021;30(5):362–71. pmid:33402381
  60. 60. Hayes B. Trust and distrust in CPR decisions. Journal of Bioethical Inquiry. 2010;7(1):111–22.
  61. 61. Hutchison PJ, McLaughlin K, Corbridge T, Michelson KN, Emanuel L, Sporn PHS, et al. Dimensions and Role-Specific Mediators of Surrogate Trust in the ICU. Critical Care Medicine. 2016;44(12):2208–14. pmid:27513360
  62. 62. Kon AA, Davidson JE, Morrison W, Danis M, White DB. Shared decision making in ICUs: An American college of critical care medicine and American thoracic society policy statement. Critical Care Medicine. 2016;44(1):188–201. pmid:26509317
  63. 63. Kryworuchko J, Strachan PH, Nouvet E, Downar J, You JJ. Factors influencing communication and decision-making about life-sustaining technology during serious illness: a qualitative study. BMJ Open. 2016;6(5):e010451. pmid:27217281
  64. 64. Lagrotteria A, Swinton M, Simon J, King S, Boryski G, Ma IWY, et al. Clinicians’ Perspectives After Implementation of the Serious Illness Care Program: A Qualitative Study. JAMA Netw Open. 2021;4(8):e2121517. pmid:34406399
  65. 65. Loewenstein G. Hot-cold empathy gaps and medical decision making. Health Psychol. 2005;24(4s):S49–56. pmid:16045419
  66. 66. Lee RY, Kross EK, Downey L, Paul SR, Heywood J, Nielsen EL, et al. Efficacy of a Communication-Priming Intervention on Documented Goals-of-Care Discussions in Hospitalized Patients With Serious Illness: A Randomized Clinical Trial. JAMA Netw Open. 2022;5(4):e225088. pmid:35363271
  67. 67. Levinson M, Walker KJ, Hanning J, Dunlop W, Cheong E, Mills A. Medical perspectives regarding goals-of-care consultations in Emergency Departments. Psychology, Health & Medicine. 2019;24(9):1137–47. pmid:30924364
  68. 68. Lindberg C, Sivberg B, Willman A, Fagerström C. A trajectory towards partnership in care—Patient experiences of autonomy in intensive care: A qualitative study. Intensive & Critical Care Nursing. 2015;31(5):294–302. pmid:26279390
  69. 69. Lu A, Mohan D, Alexander SC, Mescher C, Barnato AE. The Language of End-of-Life Decision Making: A Simulation Study. Journal of Palliative Medicine. 2015;18(9):740–6. pmid:26186668
  70. 70. Periyakoil VS, Neri E, Kraemer H. No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients. PLoS One. 2015;10(4):e0122321. pmid:25902309
  71. 71. Pham K, Thornton JD, Engelberg RA, Jackson JC, Curtis JR. Alterations during medical interpretation of ICU family conferences that interfere with or enhance communication. Chest.134(1):109–16. pmid:18347204
  72. 72. Pollak KI, Gao X, Beliveau J, Griffith B, Kennedy D, Casarett D. Pilot Study to Improve Goals of Care Conversations Among Hospitalists. J Pain Symptom Manage. 2019;58(5):864–70. pmid:31422103
  73. 73. Rasmussen K, Raffin-Bouchal S, Redlich M, Simon J. Duty to defend: Patient and family experiences of advance care planning conversations held prior to intensive care unit admission. Canadian Journal of Critical Care Nursing. 2018;29(3):19–25.
  74. 74. Ros MM, van der Zaag-Loonen HJ, Hofhuis JGM, Spronk PE. SURvival PRediction In SEverely Ill Patients Study-The Prediction of Survival in Critically Ill Patients by ICU Physicians. Crit Care Explor. 2021;3(1):e0317. pmid:33458684
  75. 75. Shah K, Swinton M, You JJ. Barriers and facilitators for goals of care discussions between residents and hospitalised patients. Postgrad Med J. 2017;93(1097):127–32. pmid:27450314
  76. 76. Sharma RK, Jain N, Peswani N, Szmuilowicz E, Wayne DB, Cameron KA. Unpacking resident-led code status discussions: results from a mixed methods study. J Gen Intern Med. 2014;29(5):750–7. pmid:24526542
  77. 77. Sterie AC, Jones L, Jox RJ, Rubli Truchard E. ’It’s not magic’: A qualitative analysis of geriatric physicians’ explanations of cardio-pulmonary resuscitation in hospital admissions. Health Expect. 2021;24(3):790–9. pmid:33682993
  78. 78. Strachan PH, Kryworuchko J, Nouvet E, Downar J, You JJ. Canadian hospital nurses’ roles in communication and decision-making about goals of care: An interpretive description of critical incidents. Appl Nurs Res. 2018;40:26–33. pmid:29579495
  79. 79. Sullivan KE, Hebert PC, Logan J, O’Connor AM, McNeely PD. What do physicians tell patients with end-stage COPD about intubation and mechanical ventilation? Chest. 1996;109(1):258–64. pmid:8549194
  80. 80. Syed AA, Almas A, Naeem Q, Malik UF, Muhammad T. Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study. Palliative Medicine. 2017;31(2):147–57. pmid:27226151
  81. 81. Taylor LJ, Johnson SK, Nabozny MJ, Tucholka JL, Steffens NM, Kwekkeboom KL, et al. Barriers to Goal-concordant Care for Older Patients With Acute Surgical Illness: Communication Patterns Extrinsic to Decision Aids. Ann Surg. 2018;267(4):677–82. pmid:28448386
  82. 82. Thomas EC, Bass SB, Siminoff LA. Beyond rationality: Expanding the practice of shared decision making in modern medicine. Soc Sci Med. 2021;277:113900. pmid:33838448
  83. 83. Tulsky JA, Beach MC, Butow PN, Hickman SE, Mack JW, Morrison RS, et al. A Research Agenda for Communication Between Health Care Professionals and Patients Living With Serious Illness. JAMA Intern Med. 2017;177(9):1361–6. pmid:28672373
  84. 84. Uy J, White DB, Mohan D, Arnold RM, Barnato AE. Physicians’ decision-making roles for an acutely unstable critically and terminally ill patient. Crit Care Med. 2013;41(6):1511–7. pmid:23552510
  85. 85. Vanderhaeghen B, Bossuyt I, De Nys K, Menten J, Rober P. ’We need a physician who is a human being too’: exploration of barriers and facilitators for hospitalised palliative patients and their families to discuss advance care planning. International Journal of Palliative Nursing.25(12):603–9. pmid:31855521
  86. 86. Visser M, Deliens L, Houttekier D. Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review. Crit Care. 2014;18(6):604. pmid:25403291
  87. 87. Vitale F, Misseri G, Ingoglia G, Bonanno G, Gregoretti C, Giarratano A, et al. Fake news and patient-family-physician interaction in critical care: concepts, beliefs and potential countermeasures. Anaesthesiology Intensive Therapy. 2020;52(1):42–6. pmid:31995964
  88. 88. Weigl M, Müller A, Zupanc A, Angerer P. Participant observation of time allocation, direct patient contact and simultaneous activities in hospital physicians. BMC Health Services Research. 2009;9. pmid:19563625
  89. 89. You JJ, Jayaraman D, Swinton M, Jiang X, Heyland DK. Supporting shared decision-making about cardiopulmonary resuscitation using a video-based decision-support intervention in a hospital setting: a multisite before-after pilot study. CMAJ Open. 2019;7(4):E630–E7. pmid:31653647
  90. 90. Devery K, Winsall M, Rawlings D. A qualitative study exploring challenges and solutions to negotiating goals of care at the end of life in hospital settings. International Journal for Quality in Health Care. 2022;34(4):23. pmid:36305626
  91. 91. Hawkes CA, Fritz Z, Deas G, Ahmedzai SH, Richardson A, Pitcher D, et al. Development of the Recommended Summary Plan for eEmergency Care and Treatment (ReSPECT). Resuscitation. 2020;148:98–107. pmid:31945422
  92. 92. Carey I, Shouls S, Bristowe K, Morris M, Briant L, Robinson C, et al. Improving care for patients whose recovery is uncertain. The AMBER care bundle: design and implementation. BMJ Support Palliat Care. 2015;5(1):12–8. pmid:25183712
  93. 93. Johnson H, Yorganci E, Evans CJ, Barclay S, Murtagh FEM, Yi D, et al. Implementation of a complex intervention to improve care for patients whose situations are clinically uncertain in hospital settings: A multi-method study using normalisation process theory. PLoS One. 2020;15(9):e0239181. pmid:32936837
  94. 94. Selman LE, Brighton LJ, Hawkins A, McDonald C, O’Brien S, Robinson V, et al. The Effect of Communication Skills Training for Generalist Palliative Care Providers on Patient-Reported Outcomes and Clinician Behaviors: A Systematic Review and Meta-analysis. J Pain Symptom Manage. 2017;54(3):404–16 e5. pmid:28778560
  95. 95. Brighton LJ, Selman LE, Gough N, Nadicksbernd J, Bristowe K, Millington-Sanders C, et al. ‘Difficult Conversations’: evaluation of multiprofessional training. BMJ Supportive & Palliative Care. 2018;8(1):45–8. pmid:29118100
  96. 96. Kathryn J. What is realist evaluation? Evidence Based Nursing. 2022;25(4):111. pmid:35985802
  97. 97. Wong G, Westhorp G, Manzano A, Greenhalgh J, Jagosh J, Greenhalgh T. RAMESES II reporting standards for realist evaluations. BMC Medicine. 2016;14(1):96. pmid:27342217
  98. 98. Greenhalgh T, Wong G, Jagosh J, Greenhalgh J, Manzano A, Westhorp G, et al. Protocol—the RAMESES II study: developing guidance and reporting standards for realist evaluation. BMJ Open. 2015;5(8):e008567. pmid:26238395
  99. 99. Brown EA, Bekker HL, Davison SN, Koffman J, Schell JO. Supportive Care: Communication Strategies to Improve Cultural Competence in Shared Decision Making. Clin J Am Soc Nephrol. 2016;11(10):1902–8. pmid:27510456
  100. 100. Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16):2221–6. pmid:1556799
  101. 101. Bronfenbrenner U. The ecology of human development: Experiments by nature and design: Harvard university press; 1979.
  102. 102. Roopashree MR. Implementation of PDCA Cycle in Improving Communication Skill-Set for Training the Future Health Care Professionals. https://doi.org/10.54105/ijpmh.E1029.073523
  103. 103. Etkind SN, Koffman J. Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care. Postgrad Med J. 2016;92(1089):412–7. pmid:27129911