Prognostic awareness in family caregivers of patients with terminal illness: a scoping review

Abstract

Objective

To map and synthesise the existing literature on the prognostic awareness of family caregivers of terminally ill patients with advanced disease.

Design

Scoping review following the Joanna Briggs Institute methodology and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines.

Data sources

A comprehensive search was conducted in six nursing and healthcare databases: CINAHL, Cochrane, ILISI, PubMed, PsycINFO and Scopus. The literature search was conducted in August 2024 without date limitations.

Eligibility criteria

Research studies of any design focusing on prognostic awareness in family caregivers of patients with terminal illness were included. Studies were included if they were published in English, Spanish or Italian. Reviews, editorials and grey literature were excluded.

Data extraction and synthesis

Two reviewers independently screened and selected studies, extracted data and charted results. A descriptive synthesis was performed to summarise study characteristics, conceptual definitions of PA, measurement approaches and main findings.

Results

18 studies were included, highlighting four main themes and related subthemes. (1) Factors influencing caregivers’ prognostic awareness: these include caregiver-specific factors (eg, sociodemographic characteristics, relationship with the patient, emotional burden), caregiving context (eg, patient’s trigger events, healthcare settings) and communication dynamics (eg, delays, insufficient communication, tailored approaches). (2) Prognostic concordance: discordance among patients, caregivers and healthcare providers is common and linked to miscommunication, emotional unpreparedness and differing treatment goals. (3) Outcomes of prognostic awareness: accurate awareness facilitates palliative care decisions and improves patient quality of life but may increase caregiver stress and depressive symptoms when emotional preparedness is lacking. (4) Evolution of prognostic awareness: awareness evolves with illness progression but fluctuates based on emotional and cognitive adaptation.

Conclusions

Caregivers’ prognostic awareness is critical to end-of-life care planning, facilitating transitions to palliative care and reducing unnecessary aggressive treatments. However, it also poses psychological challenges for caregivers, highlighting the need for tailored communication strategies and emotional support.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• The study follows the guidelines of the Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, ensuring transparency, reliability and replicability throughout the review process.

• The search was conducted across six major databases (CINAHL, Cochrane, ILISI, PubMed, PsycINFO, Scopus), ensuring comprehensive and inclusive retrieval of the available literature.

• The use of tools like Rayyan for blinded screening and comparisons among independent reviewers minimised the risk of bias.

• In line with the nature of scoping reviews, no critical appraisal of the quality of the included studies was performed, limiting the understanding of the robustness of the evidence.

• Variations in definitions, methodologies and cultural contexts make direct comparisons challenging and reduce the generalisability of the findings.

Introduction

Prognostic awareness is a central concept in palliative care, particularly as it relates to patients with terminal illnesses. Defined as the patient’s ability to comprehend the incurable nature of their illness, its terminal course and the limited life expectancy,¹ prognostic awareness extends beyond rational understanding. It also encompasses emotional and psychological acceptance, influencing the patient’s coping strategies and decision-making processes. As such, it is a dynamic and multifaceted phenomenon, evolving with disease progression and is shaped by cognitive, emotional and cultural dimensions.

Accurate prognostic awareness is linked to numerous positive outcomes for patients. It enables them to actively participate in decision-making regarding their end-of-life care, ensuring that their preferences are respected.² Furthermore, it promotes better care planning by reducing unnecessary aggressive treatments while enhancing attention to comfort and quality of life during the terminal stages.¹ Another key benefit is the potential for patients to die in their preferred location, accompanied by appropriate psychological support for both the patient and their family.³ In addition, sufficient prognostic awareness facilitates the patient’s acceptance of their illness.⁴ It encourages the completion of critical decisions such as do-not-resuscitate orders.⁵ Moreover, it allows the patient and their family to approach the end-of-life process with greater awareness, enabling more informed and prepared decisions.^{3 6} Fully accepting a terminal prognosis may also have negative emotional and psychological effects. For instance, realising the gravity of one’s condition can provoke anxiety, depression and psychological distress,⁷ potentially diminishing spiritual well-being and negatively impacting the quality of life.⁸ However, despite these challenges, clear and honest communication remains essential.

In the context of terminal illness, family caregivers (ie, individuals providing unpaid care to patients with chronic or terminal conditions)⁹ play a pivotal role in patient outcomes.¹⁰ They offer practical support¹¹ and significant emotional assistance, often becoming central figures in the patient’s journey through illness.¹² However, family caregivers often face substantial emotional and practical challenges in managing their loved one’s prognosis, navigating both the physical and psychological demands of the caregiving process.¹³ For example, caregivers frequently experience high levels of psychological distress, including anxiety and depression, due to the emotional burden of witnessing their loved one’s suffering and the uncertainty of the illness trajectory.^{14 15} Additionally, the physical toll of caregiving can manifest through exhaustion, sleep disturbances and even the neglect of their health needs.¹⁶ These challenges are further exacerbated by inadequate resources or social support, leaving many caregivers feeling isolated and overwhelmed.¹⁷ Addressing these issues requires targeted interventions, such as psychoeducation, counselling and access to respite care, which have been shown to alleviate some of the burdens associated with caregiving.¹⁸ In this context, prognostic awareness allows caregivers to anticipate care needs, participate in informed decision-making and emotionally prepare for end-of-life stages, thus improving overall care quality.

The present review

Although existing literature provides numerous studies on patients’ prognostic awareness,19,22 there remains a significant gap in research that addresses the prognostic awareness of family caregivers. This gap is particularly important, as caregivers’ perceptions of the illness and its progression can profoundly influence decisions related to care and end-of-life management.²³ Caregivers’ understanding of the prognosis affects not only the well-being of the patient but also the caregivers’ psychological health, often increasing the risk of emotional stress, burnout and psychological distress.¹² Research indicates that caregivers with an inaccurate or limited understanding of the patient’s prognosis may struggle to align care decisions with the patient’s preferences, potentially leading to overly aggressive treatments or delays in initiating palliative care.²⁴ This can exacerbate both the patient’s suffering and the caregiver’s emotional burden. Additionally, caregivers who are not adequately informed about the patient’s prognosis often report feelings of helplessness and inadequacy, which can significantly undermine their ability to provide effective support.²⁵

Furthermore, because caregivers are typically involved in planning end-of-life care, understanding how they interpret and manage the prognosis is crucial for healthcare providers. When caregivers are included in transparent and empathetic discussions about the prognosis, they are more likely to feel empowered to make informed decisions honouring the patient’s values and preferences.²⁶ Such communication also has a protective effect on caregivers’ mental health, as it reduces the likelihood of decisional regret and improves their ability to cope with bereavement.²⁷

Aim

This scoping review seeks to map and synthesise the existing literature on the prognostic awareness of family caregivers of terminally ill patients with advanced disease.

Methods

Design

A scoping review was conducted following the methodology outlined by the Joanna Briggs Institute (JBI)²⁸ and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines for scoping reviews.²⁹

The review protocol was registered on the Open Science Framework (DOI: https://doi.org/10.17605/OSF.IO/GHB72).

The scoping review approach was chosen as it allows for a comprehensive mapping of existing research, identifying key themes, gaps and the scope of available evidence on prognostic awareness among family caregivers.

The research question guiding this review was: ‘What are the factors influencing family caregivers’ prognostic awareness of terminal illnesses?’

Eligibility criteria

The inclusion criteria for this review comprised studies specifically addressing the prognostic awareness of family caregivers of adult patients with end-stage disease, irrespective of the underlying illness. Studies were eligible for inclusion if they were published in English or Italian, included an abstract and were available in full-text format. No restrictions were applied regarding the publication date.

Studies were excluded if they did not primarily focus on the prognostic awareness of caregivers, were centred on patients rather than caregivers, or involved caregivers of paediatric patients. Additionally, studies published in languages other than English or Italian, or those lacking either an abstract or full-text availability, were not considered for inclusion.

Information sources

A comprehensive search was conducted on the main nursing databases, including CINAHL, Cochrane, ILISI, PubMed, PsycINFO and Scopus. The search strings were designed using the keywords “prognostic awareness,” “caregiver” and “family,” which were adapted to the specific vocabulary of each database. Search filters were applied to ensure that the key terms, when possible, were present in the article’s title, abstract or keywords.

The literature search was conducted in August 2024 without date limitations, allowing for the inclusion of all relevant studies regardless of the year of publication. The specific search strings used are presented in table 1.

Table 1. Search strings for each consulted database.

Database	Consultation date	Search string	Results
CINAHL	01/08/2024	(TI (prognos* aware* OR prognostic awareness OR prognosis awareness) OR AB (prognos* aware* OR prognostic awareness OR prognosis awareness)) AND (TI (caregiv* OR caregiver OR caregivers OR family OR famil*) OR AB (caregiv* OR caregiver OR caregivers OR family OR famil*))	91
Cochrane	01/08/2024	(prognos* aware*) OR (prognostic awareness) OR (prognosis awareness) in Title Abstract Keyword AND (caregiv*) OR (caregiver OR caregivers) OR (family OR famil*) in Title Abstract Keyword - (Word variations have been searched)	4
ILISI	01/08/2024	(consapevol AND prognos AND caregiv) OR (Consapevol AND prognos AND famil) OR (Consapevol AND prognos AND famigl)	15
JBI EBP	01/08/2024	((prognos* aware* or prognostic awareness or prognosis awareness) and (caregiv* or caregiver or caregivers or family or famil*)).ab,kw,ti.	0
PsycInfo	01/08/2024	((prognos* aware* or prognostic awareness or prognosis awareness) and (caregiv* or caregiver or caregivers or family or famil*)).ab,hw,mh, sh, ti.	25
PubMed	01/08/2024	(((prognos* aware*(Title/Abstract)) OR (prognostic awareness(Title/Abstract))) OR (prognosis awareness(Title/Abstract))) AND (((((caregiv*(Title/Abstract)) OR (caregiver(Title/Abstract))) OR (caregivers(Title/Abstract))) OR (family(Title/Abstract))) OR (famil*(Title/Abstract)))	72
Scopus	01/08/2024	(TITLE-ABS-KEY ((prognos* AND aware*) OR (prognostic AND awareness) OR (prognosis AND awareness)) AND TITLE-ABS-KEY ((caregiv*) OR (caregiver) OR (caregivers) OR (family OR famil*))) AND (LIMIT-TO (SUBJAREA, “NURS”))	193

CINAHL, Cumulative Index to Nursing and Allied Health Literature; ILISI, Indice della Letteratura Italiana di Scienze Infermieristiche; JBI EBP, Joanna Briggs Institute Evidence-Based-Practice.

Selection of sources of evidence

Screening and selection processes were carried out in multiple stages to ensure precision and minimise bias. All eligible studies meeting the inclusion criteria were initially retrieved from databases, downloaded in BiBiText format and imported into EndNote for duplicate removal. The cleaned citations were then transferred to Rayyan, an online platform for systematic reviewers,³⁰ which enabled blind screening. This feature allowed reviewers to make independent decisions without being influenced by one another’s choices.

Two independent researchers (IB and MF) conducted the selection using a two-step blind review process. In the first step, titles and abstracts were screened blindly. Afterwards, the blind mode was disabled to compare their decisions. Discrepancies were resolved through discussion, and unresolved cases advanced to the full-text screening phase. The second step involved blind full-text screening of the eligible articles, performed independently by the same reviewers. Like the initial phase, the blind mode was removed after screening to compare outcomes, with any conflicts resolved through discussion. A third researcher (PA) was consulted when a consensus could not be reached. Finally, the research team collectively reviewed and confirmed the inclusion of the selected articles.

Data charting process and data items

Data were extracted using the JBI data extraction tool²⁸ and organised into an Excel spreadsheet. Two researchers (IB and MF) independently recorded key information about study details (eg, author and year of publication, country of study, study purpose, study design, setting, sample size, data collection methods, data analysis methods, key findings and study limitations) to ensure accuracy and consistency. Discrepancies between the researchers were addressed through discussion or, if necessary, resolved by consulting a third reviewer (PA). This rigorous process reduced bias and enhanced the reliability of the extracted data.

Critical appraisal of individual sources of evidence

In line with the JBI methodology for scoping reviews, a critical appraisal of the included studies was not conducted.^{31 32} Given the exploratory nature of scoping reviews and the focus on mapping the breadth of existing literature, quality assessment was considered unnecessary for this review.

Synthesis of results

Data extracted from the selected studies were narratively synthesised, following a thematic approach to identify recurring patterns and gaps. Key findings were grouped into categories. All authors engaged in detailed discussions after thoroughly reviewing the articles, during which a mind map was drawn to visually display specific words and concepts found in the studies. Similarities and differences between these words and concepts formed the basis for agreeing on the final categories described in the results.³² This organisation allowed a complete topic mapping, highlighting relevant themes and providing a structured overview of the existing literature. 

Patient and public involvement

None.

Findings

Selection of sources of evidence

Reports retrieved from the above databases (n=400) were exported to Rayyan³⁰ for screening, following the PRISMA-ScR.²⁹ 170 potential duplicates were identified, with 104 duplicates manually removed. From the primary screening of the remaining 296 studies, based on the review of titles and abstracts, 260 records were excluded. These were excluded for the following reasons: main theme unrelated to prognostic awareness (n=223), incorrect population (n=54), absence of abstract (n=4) and language other than Italian/English (n=1).

The remaining 36 articles were screened in full text, and 18 were excluded: 6 articles did not focus on caregivers, and 12 articles had prognostic awareness as a background theme. A total of 18 primary studies were included in the scoping review. The study identification process is illustrated in figure 1.

Figure 1. PRISMA-ScR flow chart for new systematic reviews that included only database and registry searches. PRISMA-ScR, Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews.

Characteristics of sources of evidence

Of the 18 studies included, 7 were conducted in the USA,633,38 6 in China,525 39,42 1 in Italy,⁴³ 1 in South Korea,⁴⁴ 1 in Canada,⁴⁵ 1 in the Czech Republic²³ and 1 in the UK.⁴⁶ Among the 18 studies, 7 were longitudinal studies,2334 39,42 46 3 were cross-sectional studies,^{25 35 36} 3 were prospective studies,^{33 37 44} 2 were mixed-methods studies,^{6 45} 1 was a retrospective study,⁵ 1 was a phenomenological study⁴³ and 1 was a descriptive qualitative study.³⁸

Clinical context of included studies

Most of the included studies focused on caregivers of patients with advanced cancer. Specifically, nine studies addressed broader populations of terminal cancer patients.523 36 39,42 44 46 Three studies were conducted in the context of malignant glioma.^{6 33 37} Six studies^{25 34 35 38 43 45} explored caregiver experiences in generalised end-of-life conditions.

Synthesis of results

From the analysis of the studies included in this scoping review, several common themes emerged across multiple articles (table 2).

Table 2. Results of synthesis.

Macrotheme	Subtheme	Characteristic	Literature reference
Factors influencing caregiver’s prognostic awareness	Caregiver— specific factors	Sociodemographic factors: older caregivers tend to recognise terminal illness more frequently, while no significant associations exist for gender, except that female caregivers may have better awareness. Race is debated, with some studies linking white caregivers to higher awareness while others find no difference.	Applebaum et al6; Loučka et al23; Gray et al36; Tzuh et al42
		Relationship with patient: no significant association in some studies; however, children and close caregivers have more accurate prognostic awareness.	Loučka et al23; Gray et al36; Tzuh et al42
		Attitudes and behaviours: avoidance, conflicting preferences for prognostic information, curiosity, hope and reluctance to accept threatening information hinder awareness. Emotional burden increases awareness.	Applebaum et al6; Fried et al34; Gray et al36; Tzuh et al42
	Caregiving context	Trigger events: recognising physical decline, hospitalisations and external confirmations enhances awareness. Late recognition delays the transition to palliative care.	Gonella et al43
		Contextual characteristics: patient-centred care facilitates awareness, whereas fragmented care creates uncertainty and frustration among caregivers.	Gonella et al43; Stacey et al38
	Communication dynamics	Healthcare communication: delayed or insufficient communication reduces awareness and fosters mistrust. Continuous, clear and tailored communication improves awareness.	Gonella et al43; Krawczyk and Gallagher45; Rose46; Stacey et al38; Tzuh et al42
		Prognostic information: Caregivers value prognostic details to reduce uncertainty but may avoid them due to their threatening nature. Information sources (eg, the internet or doctors) do not significantly influence awareness.	Applebaum et al6; Loučka et al23; Fried et al34; Rose46
Prognostic concordance	Causes of discordance	Imprecise physician prognoses, miscommunication, caregiver emotional unpreparedness and divisive information lead to discordance.	Fried et al34; Gray et al36; Forst et al33; Tzuh et al42; Rose46
	Consequences of discordance	Prognostic discordance increases caregiver stress and dyadic conflicts, while concordance may reduce quality of life or hinder decision-making if awareness is inaccurate.	Gray et al36; Fried et al34; Kang et al44
Outcomes of prognostic awareness	For patients	End-of-life care: Limited awareness leads to preferences for aggressive treatments; accurate awareness facilitates palliative care choices.	Wen et al39; Wen et al40; Gonella et al43
		Patient–caregiver communication: Accurate awareness can hinder communication about illness severity; low awareness complicates understanding and discussions about preferences.	Loučka et al23; Chan25
		Quality of life: Higher caregiver awareness improves symptom management while conflicting evidence exists about its impact on anxiety symptoms.	Kang et al44; Chan25
	For caregivers	Quality of life: Higher awareness may worsen caregiver quality of life; contrasting studies found no association.	Kang et al44; Sharma et al37
		Psychological impact: Higher awareness increases depressive symptoms unless paired with emotional preparedness. Lack of information increases stress.	Kang et al44; Wen et al40; Rose46; Forst et al33; Gray et al36
Evolution of prognostic awareness	Changes over time	Prognostic awareness remains stable in some studies but fluctuates in others as the illness progresses. Patients show greater variability compared with caregivers and oncologists.	Loučka et al23; Sharma et al37; Fried et al34

1. Factors influencing caregivers’ prognostic awareness: These include caregiver-specific factors (eg, sociodemographic characteristics, relationship with the patient, caregiver’s attitudes and behaviours), caregiving context (eg, patient’s trigger events, healthcare setting), healthcare providers’ communication and prognostic information.

2. Prognostic concordance: The degree of alignment in prognostic understanding among patients, caregivers and healthcare providers, including causes of discrepancies and their effects on decision-making and care planning.

3. Outcomes of caregivers’ prognostic awareness on both patients and caregivers: These include end-of-life care, patient–caregiver communication, quality of life for patients, quality of life and psychological impact for caregivers.

4. Evolution of prognostic awareness: Changes in caregivers’ understanding over time as the patient’s condition progresses, highlighting its influence on caregiving practices and emotional readiness.

Factors influencing caregiver’s prognostic awareness

Caregivers’ prognostic awareness is shaped by several factors, categorised as caregiver-specific, caregiving context and communication dynamics.

Caregiver-specific factors

• Sociodemographic factors: The influence of age on awareness is debated. While some studies found no association,^{6 23} others observed that older caregivers were more likely to recognise terminality.³⁶ Middle-aged caregivers demonstrated higher accuracy in prognostic awareness than older groups.⁴² Gender showed no association with prognostic awareness Applebaum et al⁶ and Loučka et al,²³ while Gray et al³⁶ stated that women were more likely to recognise terminality. Concerning race, Gray et al³⁶ found that white caregivers were linked to greater awareness, while Applebaum et al⁶ found no racial differences.

• Relationship with the patient: Loučka et al²³ excluded the presence of an association between the patient–caregiver relationship and their prognostic awareness, while Tzuh et al⁴² stated that greater knowledge of the patient predisposes caregivers to have a more accurate prognostic awareness.^{23 42} Gray et al³⁶ stated that children of patients exhibited more accurate prognostic awareness than spouses or other family members, while Tzuh et al⁴² highlighted that those caring for children showed a greater propensity to have accurate prognostic awareness than patients’ spouses or other family caregivers.

• Caregiver attitudes and behaviours: Several caregiver behaviours influencing prognostic awareness emerged, including avoidance, conflicting preferences for prognostic information, curiosity and hope.⁶ Some caregivers resist receiving detailed prognostic information, while others seek more information, often turning to external sources like the internet, which may lead to misunderstandings.⁶ Often, maintaining hope conflicts with accurate awareness, though some caregivers balance both.^{6 36} Avoiding prognostic discussions to mitigate emotional distress reduces the potential threat of the information but increases their prognostic uncertainty.³⁴ Emotional burden also plays a role, as caregivers perceiving a higher burden are more likely to develop accurate prognostic awareness.⁴²

Caregiving context

• Patients’ trigger events: Recognition of physical decline, hospitalisations and external opinions helped caregivers understand terminality but was often delayed, hindering timely transitions to palliative care. Among the facilitators for the early recognition of trigger events is a patient-centred care context, which could promote the development of prognostic awareness in caregivers. In this regard, the studies highlighted that the early detection of these trigger events could facilitate the shift from curative treatments to palliative therapies, thereby reducing the so-called ‘therapeutic obstinacy’. However, in most cases, these conditions developed too late to ensure the transition to palliative care.⁴³

• Healthcare setting: Patient-centred care environments could facilitate the transition from curative treatments to palliative therapies. Staffing levels, staff training and knowledge, staff attitudes, continuity of care, the quality of relationships with the family and among healthcare providers, familiarity and institutional policies act as both barriers and facilitators within the patient-centred care environment, enhancing awareness through consistent staffing, strong provider–family relationships and supportive institutional policies.⁴³ Moreover, Stacey et al³⁸ highlighted that fragmented care, with poor coordination and lack of communication between professionals, created frustration and confusion, undermining prognostic understanding and potentially impacting patients’ illness trajectories.

Communication dynamics

Several studies link delayed or insufficient communication from healthcare providers to reduced caregiver prognostic awareness.^{38 42 43 45 46} Gonella et al⁴³ highlighted the absence of written protocols for end-of-life communication, stressing that collaboration with caregivers and regular updates improve awareness and relationship quality. Krawczyk and Gallagher⁴⁵ noted that the lack of prognostic communication from healthcare providers to caregivers can lead to reduced prognostic awareness among family members, causing caregivers to doubt the physicians and suspect a deliberate omission of information by the healthcare team. The use of euphemisms and false hope provided by doctors prevents family members from developing an adequate understanding of their loved one’s illness trajectory. As a result, they may fail to recognise that the patient is nearing the end of life, leading to uncertainty and suspicion that something might have been done wrong to cause the patient’s death.

Furthermore, when healthcare providers express their concerns about a patient’s prognosis and engage in clear, open and continuous communication, they facilitate an active dying process, positively impacting caregivers. This approach also influences how caregivers spend their final moments with their loved ones. Similarly, Rose⁴⁶ identified that the reluctance of healthcare providers to convey bad news to family members may stem from the assumption that prognostic knowledge is implicit or from the lack of precise answers, fearing that family members might fixate on specific details and dates. Communication tailored to caregivers requires physicians to avoid making assumptions or taking how caregivers process and assimilate information for granted. Stacey et al³⁸ emphasised that fragmented care and poor coordination lead to inconsistent information and caregiver uncertainty, encouraging selective focus on hopeful outcomes. Different healthcare providers addressing a small aspect of the patient’s clinical picture without proper communication often fail to convey consistent prognostic predictions to the patient’s caregivers.³⁸ Tzuh et al⁴² found that greater knowledge of the patient by the physician and a higher number of interactions with them appear to be associated with an increased likelihood of caregivers developing accurate prognostic awareness.⁴²

Prognostic information

Applebaum et al,⁶ Loučka et al,²³ Fried et al³⁴ and Rose⁴⁶ agreed that most caregivers want prognostic information regarding the illness trajectory of their loved ones. Caregivers often turn to physicians as their primary source of information; however, many also rely on other means, such as the internet, to gain knowledge about the patient’s illness progression.⁶ No association has been found between caregivers’ prognostic awareness and their satisfaction with the information received, although caregivers with accurate prognostic awareness tend to consider being informed about the prognosis more important than those who are partially or not aware.²³ Nonetheless, even when caregivers are provided with prognostic information, they often seem unable or unwilling to process it due to its threatening nature.³⁴ Having prognostic knowledge serves as a way for caregivers to manage potential uncertainty, which might otherwise increase their stress levels.⁴⁶ Finally, ‘divisive information’, when prognostic details are shared with the caregiver but not the patient, has been stressful for caregivers, as it can hinder the support within the patient–caregiver dyad and undermine their established relationship.

Prognostic concordance among patients, caregivers and providers

Regarding prognostic concordance among patients, caregivers and healthcare providers, many authors describe the phenomenon of prognostic discordance.^{33 34 36 37 42 44 46} Prognostic discordance, defined as differing perceptions of treatment goals and the terminal nature of the illness, is common within the patient–caregiver provider triad. Among these groups, patients exhibited the greatest variability in perceptions, followed by caregivers and providers.³⁷

Causes of discordance

Among the possible causes of prognostic discordance are factors that can lead to misconceptions by patients and caregivers, including physicians’ inaccurate prognostic abilities, lack of training in communication skills and inability to discuss prognosis.³⁴ Other factors include the inability to process prognostic information, misinterpretation of the information provided (with a more optimistic outlook) by the patient or caregiver, or the capacity to address the prognosis being present only in one dyad member.³⁶ The patient’s hope or desire for a cure, often aiming for disease treatment rather than symptom palliation, also contributes to prognostic discordance.³³ Even when caregivers meticulously understood the patient’s unfavourable prognosis, they often lacked adequate emotional preparedness for their loved one’s death.⁴² Lastly, divisive information can also be a source of prognostic discordance.⁴⁶

Consequences of discordance

Several potential outcomes emerge from the level of prognostic concordance, such as the relationship between the patient and their family member. Differences in prognostic perceptions can create conflicts within the dyad.³⁶ Prognostic discordance may also impact caregivers’ stress levels due to their desire for a shared understanding of the illness with their loved one.³⁴

Studies highlighted a significant reduction in quality of life when prognostic concordance exists between patients and caregivers, especially if the prognosis is negative.⁴⁴ Finally, while prognostic discordance can lead to disagreements within the dyad, concordant but inaccurate awareness between patients and caregivers may hinder end-of-life decision-making.³⁶

Outcomes of caregivers’ prognostic awareness

Outcomes for patients

• End-of-life care: Caregivers’ prognostic awareness is closely associated with the end-of-life care provided to patients with end-stage illnesses.39,4143

  Several authors^{40 41} have demonstrated a correlation between caregivers’ levels of prognostic awareness and their preferences for life-sustaining treatments (LST), which include interventions such as enteral or parenteral nutrition, intensive care unit admissions, cardiopulmonary resuscitation, intubation and mechanical ventilation.³⁹ When caregivers have limited prognostic awareness and fail to understand the terminal nature of the illness or the patient’s imminent death, they tend to favour aggressive, curative treatments over palliative interventions.^{39 40} The preference for aggressive end-of-life care is more pronounced when caregivers’ prognostic awareness, which falls into one of four states of preparedness for death (no preparedness, cognitive-only preparedness, emotional-only preparedness and sufficient preparedness), lacks emotional preparation. Specifically, caregivers in a ‘no preparedness’ or ‘cognitive-only preparedness’ state are more likely to choose curative-oriented therapies.⁴⁰ Regarding LST, Wen et al³⁹ reported improved patient–caregiver concordance on end-of-life care preferences. However, despite this increased alignment, overall concordance remained low, reducing the likelihood of transitioning to palliative care.³⁹ The use of palliative care is often facilitated by recognising trigger events. Caregivers who failed to identify these triggers, such as the physical and functional decline of their loved ones, tended to pursue all possible means to prolong life. Conversely, caregivers who recognised these triggers, questioning the potential for the patient’s functional recovery, were more likely to opt for palliative treatments that enhanced the quality of the patient’s final days or months.⁴³

• Patient–caregiver communication: Loučka et al,²³ and Chan²⁵ highlighted a connection between caregivers’ prognostic awareness and patient communication. Loučka et al,²³ found that accurate prognostic awareness among caregivers could hinder discussions about the patient’s unfavourable disease trajectory. Their study revealed that caregivers with accurate awareness were less likely to discuss the severity of the patient’s condition than those with poor or absent awareness. Chan²⁵ also identified a relationship between caregiver awareness and patient communication, associating poor or absent awareness with greater difficulties in caregiver–patient interactions. Reduced awareness was hypothesised to make caregivers less attuned to patients’ needs, including the need for conversations about end-of-life preferences. Additionally, psychological distress among caregivers, stemming from difficulty accepting the patient’s condition, may further impair communication.²⁵

• Quality of life: The level of caregivers’ prognostic awareness can impact the quality of life for patients with end-stage illnesses, as evidenced by Kang et al,⁴⁴ which found that higher levels of prognostic awareness among caregivers were associated with better symptom-related quality of life for patients (eg, reduced dyspnoea, pain and appetite loss). Conversely, a reduced or absent cognitive perception of a poor prognosis could either lower the quality of life during the patient’s final days or leave it unchanged.⁴⁴ In contrast, Chan²⁵ did not show relevant links between the prognostic awareness of the caregiver and the anxiety symptoms developed by the patient, which is a dissenting opinion.

Outcomes for caregivers

• Quality of life: While some authors argue that there are no associations between the perception of the patient’s expected survival by his caregiver and the quality of life of the family member,³⁷ other authors have identified a correlation between the level of prognostic awareness of family caregivers and their quality of life.⁴⁴ Poor/absent level of prognostic perception correlated with higher scores of the quality of life of family members of terminal patients; conversely, ‘caregivers’ quality of life tended to decline as their patients’ awareness of the incurable disease increased’.⁴⁴

• Psychological impact: In contrast to the findings regarding accurate prognostic awareness improving depressive symptoms in patients, caregivers with heightened prognostic awareness showed increased depressive symptoms and lower quality of life when not accompanied by emotional preparedness for death.^{41 44} Others believe there is no association between caregivers’ recognition of a terminal prognosis in patients with end-stage illness and their symptoms of anxiety and depression.^{33 36} Another finding from the analysis was the link between limited information, reduced prognostic awareness and caregivers’ perceived stress levels. A lack of information generated uncertainty among family members, increasing their tension and reducing their ability to manage the situation effectively.⁴⁶

Evolution of caregivers’ prognostic awareness

Caregivers’ prognostic awareness evolves, with fluctuations influenced by illness progression. Patients exhibit the greatest variability, followed by caregivers and providers.³⁷ Some studies observed no changes in awareness levels,²³ while others noted shifts as caregivers adapted emotionally and cognitively.^{34 42}

Discussion

The primary aim of this scoping review was to analyse caregivers’ prognostic awareness of terminal illnesses, identifying its facilitators, outcomes for both patients and caregivers, concordance within the patient-caregiver-provider triad, and its evolution over time. Our findings highlighted that prognostic awareness is strongly influenced by extrinsic factors, such as communication quality and healthcare settings, while the caregiver’s specific factors remain inconsistent in their impact. Poor prognostic concordance among patients, caregivers and healthcare providers can undermine decision-making processes and negatively affect quality of life. At the same time, clear and accurate prognostic awareness supports timely palliative care decisions but may pose psychological challenges for caregivers.

The findings emphasised the crucial role of clear and open communication in enhancing caregivers’ prognostic awareness. Literature suggests that effective communication from healthcare providers is essential to support caregivers’ understanding of the prognosis.2,47 47 In contrast, euphemisms, delays in providing information and intentional omissions generate mistrust and hinder the development of accurate awareness.^{45 46} Contextual actors, such as trigger events (physical decline, frequent hospitalisations and external opinions) and the healthcare setting, significantly impacted caregivers’ prognostic awareness.⁴³ Conversely, the influence of individual factors, including age, gender and relationship to the patient, remains controversial. While some studies found no significant associations, others reported that children of patients exhibited higher levels of awareness compared with spouses or older caregivers.^{6 36 42}

Prognostic concordance within the patient-caregiver-provider triad was another central theme. Studies demonstrated significant discordance in prognostic perceptions attributed to inaccurate estimates, poor communication skills and emotional unpreparedness.^{33 34 36} Prognostic discordance between patients, caregivers and oncologists is common in advanced cancer care, occurring in 20%–35% of cases.⁴⁸ Oncologists tend to be more pessimistic than patients but more optimistic than caregivers.^{33 49} Prognostic discordance can hinder shared decision-making and end-of-life care planning while increasing caregiver stress. This discordance can further hinder effective end-of-life care planning and shared decision-making.⁵⁰ Factors contributing to discordance include patients’ fighting spirit, lack of prognostic discussions and physician uncertainty.⁴⁸ Whereas accurate concordance facilitates planning but may negatively affect the quality of life if based on inaccurate information.^{37 42} Interestingly, caregiver-oncologist prognostic concordance has been associated with greater depressive symptoms among caregivers, particularly in those with lower levels of mastery.⁵¹ Lower caregiving esteem appears to mediate this association, suggesting that shared prognostic understanding may intensify distress when not supported by psychological resources.⁴⁹

Caregivers’ prognostic awareness has notable implications for both patients and caregivers. Among patients, higher caregiver awareness supports decisions that prioritise palliative care and reduce unnecessary aggressive treatments.^{1 39 43} The ability of caregivers to recognise trigger events, such as physical and functional decline, facilitates appropriate care decisions, improving the quality of the patient’s final days.⁴³ However, for caregivers, heightened prognostic awareness is often associated with psychological distress, including increased symptoms of anxiety and depression.^{41 44} This effect is exacerbated when caregivers lack adequate emotional preparedness to process the reality of the terminal prognosis.⁵² While some studies identified no significant associations with anxiety or depression levels, others highlight the importance of emotional preparedness in mitigating these adverse outcomes.^{33 36}

The evolution of caregivers’ prognostic awareness remains underexplored in the literature. Some studies reported that awareness fluctuates as the illness progresses, with patients displaying greater variability in perceptions compared with caregivers and providers.³⁷ However, other findings observed no significant changes over time.²³ These discrepancies underscore the need for further longitudinal research to clarify how awareness evolves and influences end-of-life decision-making.

These findings suggest that to improve end-of-life care and mitigate caregiver distress, healthcare providers should systematically assess prognostic perceptions among both patients and caregivers, tailor communication accordingly and promote emotional resilience alongside prognostic understanding.^{50 51}

Strengths and limitations

This scoping review has several notable strengths that position it as a significant contribution to the field of palliative care research. By addressing the underexplored topic of prognostic awareness among family caregivers, the study fills a critical gap in the literature, emphasising the caregivers’ essential role in end-of-life decision-making and their emotional and cognitive needs. The rigorous methodological approach, guided by the JBI methodology and PRISMA-ScR guidelines, ensures transparency, reliability and replicability. A comprehensive search strategy across six major databases, with search strings tailored to each database’s vocabulary, guarantees thorough and inclusive identification of relevant studies, minimising the risk of publication bias. Furthermore, the inclusion of diverse geographical and cultural contexts enriches the findings, making them applicable to a wide range of healthcare settings. The innovative use of thematic synthesis provides a structured understanding of the factors influencing prognostic awareness, its outcomes and its evolution over time, offering actionable insights for both research and clinical practice. The study’s focus on family caregivers highlights the importance of tailored communication strategies and support interventions, with clear implications for improving caregiver engagement and patient outcomes. Finally, the transparency in documenting the search and synthesis processes enhances the reproducibility of the study, ensuring it serves as a reliable reference for future research.

However, several limitations must be acknowledged. The heterogeneity of studies, including variations in the definition and measurement of prognostic awareness, complicates direct comparisons and reduces the generalisability of findings. Cultural and geographical differences further influence perceptions and practices related to prognosis, which may affect the applicability of results across diverse contexts. The lack of longitudinal data limits understanding of how prognostic awareness evolves, particularly regarding its influence on treatment preferences and quality of life. In addition, including studies addressing various terminal illnesses introduces further heterogeneity, which may reduce comparability. The subjective nature of caregivers’ experiences, influenced by emotional and psychological factors, may also have led to inconsistent reporting of their prognostic understanding. Finally, the conflicting results regarding the association between prognostic awareness and caregivers’ quality of life underscore the need for further research to draw definitive conclusions.

Implications for clinical practice, research and organisations

For nurses, understanding caregivers’ prognostic awareness is fundamental to improving end-of-life care. Caregivers play a pivotal role in supporting patients’ understanding of their illness and facilitating decisions about treatment preferences. Nurses can provide more targeted and culturally sensitive care by identifying factors influencing caregivers’ choices and emotional responses. Effective communication strategies tailored to alleviate emotional burdens, promote dialogue and ensure patients’ preferences are respected are essential, particularly in complex family dynamics. Nurses’ proximity to patients and families allows them to establish trust, enhance awareness and guide caregivers toward informed decisions. This is particularly important when transitioning from curative treatments to palliative care, as adequate awareness helps caregivers reduce unnecessary aggressive interventions and focus on quality of life.

Beyond facilitating end-of-life decision-making, accurate prognostic awareness has been shown to influence caregivers’ psychological well-being, sense of control and relational closeness with the patient. When caregivers are adequately informed and emotionally prepared, they are more likely to experience reduced anxiety, improved confidence in their caregiving role and greater alignment with the patient’s values and care preferences. These outcomes can contribute to a more compassionate caregiving experience and may also ease the grieving process. To fully integrate caregivers into discussions around goals of care, healthcare providers should adopt a family-centred communication approach, ensure that prognostic information is conveyed in an accessible and sensitive manner, and create structured opportunities for caregivers to ask questions, express concerns and clarify expectations. Interprofessional collaboration, including the involvement of nurses, social workers and palliative care teams, can further support this integration, promote shared understanding and coordinate care planning.

From an organisational perspective, healthcare institutions should prioritise training programmes to improve healthcare professionals’ communication skills and develop structured protocols for conveying prognostic information. Enhanced interdisciplinary coordination is also necessary to overcome fragmented care and ensure consistent messaging among providers, which can significantly improve caregivers’ prognostic awareness and reduce uncertainty.

Further research is needed to explore caregivers’ emotional and cognitive experiences and better understand how their awareness develops over time. Additionally, future research should explore the determinants of caregivers’ prognostic awareness across diverse cultural and healthcare settings and investigate how this awareness evolves. Longitudinal studies are needed to clarify the relationships between awareness, emotional preparedness and decision-making processes in end-of-life care.

Conclusions

This review highlights the critical role of clear and effective communication, timely identification of patient trigger events and caregiver involvement in end-of-life decision-making. Caregivers’ prognostic awareness positively impacts patient care by reducing unnecessary aggressive treatments and facilitating transitions to palliative care, ultimately improving the quality of the patient’s final moments. However, it also presents psychological challenges for caregivers, increasing their anxiety and emotional distress, particularly when they lack adequate emotional preparedness. Addressing these challenges requires tailored support strategies, improved communication practices and enhanced interdisciplinary coordination among healthcare professionals.

The findings underline that accurate prognostic awareness supports informed decision-making regarding end-of-life treatments, reducing caregiver burnout and improving the overall care experience. Investment in healthcare providers’ training, particularly in communication skills and psychological support for caregivers, is essential to foster awareness and ensure high-quality end-of-life care. Additionally, enhancing the capacity to identify patient trigger events, such as physical decline and functional loss, can aid in timely care transitions.

Promoting caregivers’ prognostic awareness is fundamental to improving decision-making, facilitating palliative care interventions and enhancing the end-of-life care approach for terminally ill patients. Tailored interventions, healthcare provider training and caregiver support are essential components in achieving these goals and ensuring the well-being of both patients and their families.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.