Caregiver needs in end-of-life care are diverse, yet invisible: a narrative review

Introduction

When a terminally ill patient is at home for their end-of-life (EOL), their family members or friends typically take on primary caregiving duties. As informal caregivers, they handle daily care tasks, manage medical routines, and fulfil the patients’ ad-hoc needs. As caregiving can often be on a 24/7 schedule, with income and personal needs being sacrificed with little compensation, the impact on caregivers’ well-being can be stressful and deleterious. In a study by Stenberg (1), over 200 problems and burdens were identified across nearly 160 papers, highlighting the various stressors and challenges that caregivers face.

Although the impact of EOL caregiving has been described (2-4), caregivers continue to receive relatively little attention in policy and practice. For example, family caregivers for patients with serious illness in the United States are equivalent to a major workforce, yet they receive minimal support (5). Within healthcare, caregivers may sometimes be perceived as ‘second-order clients’; the patients’ well-being are prioritized over theirs (6). A common sentiment among EOL caregivers was the sense of being simultaneously visible and invisible (7), where they are neither fully integrated in the patient’s medical care nor merely onlookers; their presence was crucial, yet their own needs are often overlooked.

Ultimately, the ‘liminality’ of EOL caregivers as described by Dahlborg Lyckhage and Lindahl (7) would likely persist unless more attention was given to their well-being and meeting their needs (8-10). In particular, Ewing & Grande (11) highlighted this gap by describing carer needs into two broad groups: (I) ‘care-enabling needs’ that enable them to provide care for the patient, and (II) the more ‘direct support needs’ for their own well-being (Table 1).

There is a need for a conceptualization of EOL caregiver needs that provides a more comprehensive view of the state of EOL caregiving needs, that accounts for the caregivers’ personal well-being. However, there remains gaps in current literature; caregivers’ needs tend to be studied within specific conditions, and with few examinations of the EOL caregivers as care recipients in their own right (12). We posit a need to address this gap with a description of caregivers’ needs with a ‘caregiver-centered’ perspective.

Given this, our team sought to provide a contemporary overview of EOL caregivers’ needs, placing the caregivers in the forefront as the primary clients. Charting recent developments in this area may inform more effective practice recommendations and future research considerations that will better support EOL caregivers. We present this article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-24-151/rc).

Methods

For this study, an unsystematic narrative review methodology was employed to provide an overview and synthesis of the existing literature regarding the needs of EOL caregivers, specifically framed from a perspective that treats caregivers as primary clients. To date, this ‘caregiver-as-client’ paradigm has not been extensively explored within the existing evidence base. Narrative reviews are apposite the examination of complex or under-researched topics with a new paradigm (13). Two review questions were crafted to guide the review:

• What are the distinct needs of family caregivers among terminally ill patients and how they may be influenced by various factors?
• What knowledge gaps and barriers exist that hinder effective addressing of family caregivers’ needs in EOL care?

Our review process was summarized in Table 2. A systematic search was performed on PubMed over three periods: October 2023, July 2024, and December 2024. The search strategy focused on peer-reviewed articles and reports published in English between January 2019 to November 2024. Search terms included “caregiver needs”, “concerns”, “experiences”, “palliative”, “hospice”, and “end-of-life”. Boolean operators were employed to refine the search results.

The selection criteria encompassed studies involving caregivers of terminally ill patients at EOL, irrespective of prognostic timelines and setting, including literature reviews, quantitative and qualitative research (i.e., observational studies, case reports, cross-sectional and cohort studies). Studies must address caregivers’ comprehensive needs (including emotional, social, psychological, and spiritual dimensions), beyond the basic caregiving tasks. Studies examining how caregiver needs vary due to factors such as patient’s disease type, cultural influences, and interactions with healthcare professionals were included. Furthermore, articles featuring EOL caregiver needs assessment, as well as barriers and gaps from caregivers’ perspectives were considered. Studies were excluded if they did not focus on the EOL context, those not centered on caregiver-specific needs or perspectives, and literature lacking relevant data regarding caregiver needs or barriers to support.

Data was extracted focusing on caregiver needs, influencing factors, identified knowledge gaps, and systemic barriers. A thematic analysis approach was used to synthesize findings. Data were organized into a table (see Table S1) to facilitate comparison, identify commonalities, and highlight other relationships across findings. Through this process, distinct needs and structural challenges were categorized and discussed in the context of a ‘caregiver-as-client’ framework.

Findings

The search retrieved 856 records, and 52 articles were selected after screening by title and abstract. An additional 11 articles were included via backwards chaining, leading to a final yield of 63 articles (see Table S1). Many were reports of studies of needs, burden or quality of life of terminally ill patients and their informal caregivers, either qualitatively through interviews (10,14-26), or through the use of scales, tools and surveys (27-34). Caregiver burden, quality of life, anxiety, depression and stress were commonly used as indicators of needs or impact of caregiving (31,35,36).

Studies spanned across various conditions which may benefit from palliative support, including less prevalent cancers (19,27,37) and non-cancer diseases (16,25,33,38,39). Some studies explored palliative care needs and caregivers’ needs in specific settings such as intensive care unit (ICU) (14,26,28), urban slums (40) and military deployments (15). Another group of studies focused on a single aspect of caregivers needs, such as the impact of death rattle (24), witnessing ‘scary’ symptoms in home care (34), spiritual needs (41) and death anxiety (42). In addition, there were exploratory studies that primarily explored patients’ palliative care needs but contained information of caregivers’ needs via their sharing of experiences as contextual information.

Findings also demonstrated the various impact of caregiving on caregivers. Many reported poorer quality of life, exhaustion, sleep disturbance, and negative effects on health (15,31,33,43-45). Caregivers were likely to ignore their own health needs and were in poor health (30,46,47). Emotional distress including depression, anxiety, and loneliness, coupled with spiritual and existential challenges such as meaning loss and isolation, profoundly impact caregivers’ overall well-being (5,16,40,44). A number of studies highlighted the anxiety and uncertainty felt by caregivers facing the impending and possible sudden loss (16,39).

Care-enabling needs

Literature on supporting caregivers or unmet care needs tended to highlight practical support requirements for caregivers. Commonly identified needs included the need for timely and accurate information (10,14,39), skills and knowledge related to care (34,38,43,48,49), practical assistance such as financial help, equipment support, round-the-clock access to medical advice (36,43,50), and respite support (39,43). A few studies highlighted the importance of communication with health care team, not only in frequency and clarity (19,26,34,51), but also in communicating with empathy, humanity, sensitivity and assurance (17,22). Even in studies where caregivers were the main subjects of study, caregivers were still observed to discuss patient care and care-enabling needs as having higher priority over their own needs (36,45).

Direct support needs

When direct support needs were described and engaged in professionals’ practice, they were often defined into broad domains of caregiver well-being, such as ‘emotional distress’, ‘role integrity’, or ‘feeling supported’ (10,29,52). Across the literature, some common themes emerged:

Need for validation

While caregivers often prioritised the needs of their sick loved ones over their own, caregivers did report the importance of recognition and validation of their role and contributions to caregiving (26,53-55). Many caregivers who participated in supportive interventions reflected that the fact of being asked about their needs and their views mattered greatly to them and their sense of well-being (53,54).

Need for autonomy

Caregiver autonomy refers to the caregivers’ right to self-determination: to make independent and voluntary decisions regarding the care they provide to the patient and not be burdened by undue expectations or judgement. This encompasses aspects such as being given choices and time to make decisions, empathy and respect for their choices, and collaborative problem-solving (10,14,23,26). However, this appeared to remain a gap in the EOL care process; one caregiver observed that healthcare professionals had the practice of noting their concern but would still assign more caregiving tasks (55). The assumption of responsibility and lack of alternatives could be a source of stress to caregivers. Healthcare professionals should recognize that caregivers’ individuality and initiative in their caregiving roles and should not take for granted that they will or should provide care out of obligation (17).

Need for regular review

Related to respecting the need for caregiver autonomy was the need for them to receive consistent follow-up. Caregiver priorities and needs may change over time (10); Caregivers who were initially committed to care may find themselves unprepared when the patient was near death (10,24) or when the care burden increases (44,56,57). Changes in circumstance may even necessitate a review of Advance Care Plans with the caregivers (51). Regular assessment of the caregivers’ situation and regular review of care plans would be essential, so that care options can be discussed and changed accordingly (55).

Relational needs

In their work of validating assessment for caregiver needs, Micklewright and Farquhar (39) included the impact that EOL caregiving can have on the relationships of the caregivers with others. Their relationship with the patient can be significantly altered (43); caregivers described the impact as having their own living sphere shrunk together with the patient (39), losing intimate connections (58), as well as finding difficulty disconnecting from the carer’s role (16). Caregivers may also feel restrained from relating with others as they take care to avoid discussions about their loss in order to not be ‘overbearing’ (16) or cause loss of hope and positivity (17). The importance of social support in the literature goes beyond the practical and emotional resources that the caregivers’ network can provide—it involves fostering meaningful dynamics that validate the caregivers’ sense of personhood (35).

Contextual factors affecting caregivers’ needs

Several papers examined how the prioritization of caregiver needs can vary greatly across different contexts. Major elements identified were:

Patient trajectory and care responsibilities

Caregivers’ needs were deeply inter-related with the progression of the patient’s condition and the care responsibilities that followed. These may differ based on the specific illness, resulting in diverse lived experiences for the caregivers (20,45). A number of studies examined caregiver needs within less-studied diseases. For example, caregivers of chronic obstructive pulmonary disease (COPD) patients reported high anxiety due to its unpredictability (39); observing patients struggling to breathe was particularly distressing for them (14). In some cases, challenges were hidden as patients’ fragility may not be visible (14,21), such as delays in referral to palliative care due to uncertainty in prognosis (21).

As the patient’s condition deteriorates, EOL caregiver needs may change from practical to psychosocial concerns (43). Tarberg et al. (10) mapped caregivers’ experience from the beginning of palliative care to bereavement. The study found that caregivers was generally informed but had limited participation at the beginning as patient’s wish was the main concern; towards the middle phase, patients’ care took precedent over caregivers’ own unmet needs, leaving them feeling overwhelmed and unsupported. Available resources for caregivers also differed between cancer and non-cancer patients (36,39,43,44). Supportive services for caregivers of patients with rarer cancers (59) or diseases such as Motor Neurone Disease (MND) and Amyotrophic Lateral Sclerosis (ALS) can be very limited and uncoordinated (36). On the other hand, the care of non-cancer patients may lead to higher caregiver burden compared to caregivers of cancer patients (57).

It was also not uncommon to see competing opinions and conflicts regarding care decisions within the family, such as whether to have the patient receive further treatment, or whether to administer opioids during a pain crisis (51). This reflected how caregivers’ own desires and needs differed from that of the patient’s (10). Caregivers felt particularly unprepared for the dying phase; burden increased towards the end (56). The witnessing of some symptoms could cause fear and helplessness in caregivers (24,34), affecting their caregiving experience.

Another element was the challenging task of administering medication. Complex drug regimen was shown to increase caregiver burden and stress, especially when caregivers were told to administer medicines “only when needed” (57). Only one study in our review attempted to identify risk factors of having unmet needs in following medication regimen (60).

Caregivers’ resourcefulness

Internal and external resources accessible to caregiver also presented an impact on their needs and ability to cope. Some studies highlighted caregivers’ internal resources. For example, caregivers were found to be active agents in providing care, comfort and emotional support to patients, where frequently they had to do so without sufficient knowledge and skills (61). In one study, ‘objective’ caregiver burden was found to have increased over time, but the perceived burden was more stable (62), showing the capacity of caregivers to adapt. Having positive interpretation of caregiving experience has a positive impact on overall care experience (63) and was also a coping strategy for some caregivers (45).

External resources referred to caregivers’ access to informal and formal support. Graven et al. (32) showed that families of heart failure patients with less resources were more likely to experience depression, burden and negative consequences.

Not all informal support were equal; two studies in Hong Kong suggested that different types of informal support could have a different impact on caregiver burden, based on how the support was perceived (35,50). In extreme cases, caregiving became very challenging, e.g., refugees being cut off from their original support network (18), families living in remote areas, or living in extreme poverty (15,31). In these situations, tangible support such as sustenance, transportation and financial support would be the priority, and personal needs would be greatly de-emphasized.

Demographic factors

Gender seemed to play a role in the variance of EOL caregiving needs; Zavagli et al. (45) found that female caregivers reported more negative effects in their wellbeing; male caregivers had access to fewer informal support (31). Women reported more spiritual concerns but were more likely to benefit from spiritual coping (41).

Cultural context

Caregiver needs priorities were also affected by cultural expectations and norms. For example, faith, spirituality, and family cohesion feature strongly in Muslim caregivers as needs that meet their well-being (14). In Asian settings, many caregivers prefer to make decisions with their family unit (48,64,65) and might have a different perspective about disclosure and care responsibilities versus informal support compared to their Western counterpart (35,65,66). The need for recognition and acknowledgement may feature heavily in settings where there was discrimination or stigmatization of patients and their family members (67) and in communities with lower socio-economic status (64).

Interventions for caregivers

A few studies discussed the feasibility or impact of new initiatives to include caregivers in palliative care. One report was on the development of a portal where access would be opened to caregivers (20); a one-year pilot of tele-support for advanced cardiorespiratory disease patients and their caregivers provided by a psychologist was reported (30); a community-based volunteer program was initiated in Australia to reduce isolation of caregivers of palliative patients (38); an online training of spousal caregivers of ALS patients where peer support was promoted (68); the use of tools such as the Caregivers Support Needs Assessment Tool (CSNAT) (54,69) or Care Alert Thermometer (38) as intervention tools was also reported. We could see the trend of improving accessibility and engagement of caregivers independent of patients in these attempts.

Barriers in meeting caregivers’ needs

While the evidence demonstrates the importance for providing appropriate support to meet caregivers’ needs, there remains significant barriers faced by caregivers to fulfil their needs, including some that may be described as self-imposed.

First, it was common for caregivers to prioritize their sick family members’ care over their own. Underlying reasons were explored in some studies in the current review. For example, the fear of negative judgement by people around them (35,55,67,70); the observation that professionals could only take note of their concerns but still give them more tasks (38,55); or that they were unable to do anything about these concerns due to reasons such as the lack of resources (15,41,52), discomfort to initiate EOL matters (21,26,42) or concern that the care focus will shift away from patients (20,71). Moreover, the coping strategy of ‘take one day at a time’ which could limit caregivers’ willingness to make plans for care (55); talking about or making plans about death could upset the caregivers’ own balance needed to cope with the care (54).

The lack of regular and consistent assessment was also a major barrier. Despite of the number of studies in the past two decades showing the importance of supporting informal caregivers, majority of cancer practice units participating in a US study did not practise regular screening of caregivers’ needs, only assessing at critical points such as diagnosis and treatment. There also appeared to be a lack of suitable screening and assessment tools that comprehensively assesses caregivers. For example, a single item distress scale was the most used screening tool for caregivers in oncological settings (72,73). Other tools commonly seen in this review were scales to measure caregiver burden, quality of life, anxiety, depression and stress (27-34), and specific tools for very narrowly defined phenomenon (34). These assessment tools captured consequences of needs rather than the needs themselves, which could contribute to the invisibility of these needs. In our review, CSNAT, developed over a decade ago as a quick screening tool for palliative nurses, was a major tool that sought to identify and assess needs and priorities as defined by the caregiver (39,50,54,69,71). Its feasibility as a frontline tool for regular screening was still being tested (69). Another tool named Cancer Caregiving Tasks, Consequences, and Needs (CaTCoN) was used in one study of caregivers’ unmet needs (45), with 72 items, which may be too cumbersome for regular screening purpose.

A few barriers in the medical professions for meeting caregivers’ needs were identified. For example, medical professionals were often unsure if they could handle what caregivers might request for (20,26,69), particularly in settings where the mission was to save lives (26). Where supportive services were piloted, it could be seen as additional work by frontline nurses who often felt overwhelmed with their existing workload (53,69). The focus of medical professionals on outcome measurement and performances also caused difficulties in implementing supportive interventions where effects cannot be directly measured in terms of health outcomes (69). Overall, the medical profession is still patient-centric and disease-oriented, which makes it hard for them to meet caregivers’ needs which are more psychosocial in nature. A patient-centric stance also manifested in documentations; a study of US caregivers showed that only one caregiver was registered in the system with minimal information on coping of the family, making caregivers invisible in the system (5).

The lack of availability, flexibility and timeliness of official support were observed (19,52). Financial aids were usually not immediately available for caregivers who had to reduce or quit work for the care; transportation support and affordable respite care was often absent (5,52). Insurance claims (59) and the potential housing instability after death required time, effort and a certain level of literacy on the side of the family caregiver to tackle (52), making it a potential barrier for many caregivers to find relief. The lack of information support was especially felt by minorities where literacy and access to online information can be a barrier (5).

Discussion

Overall, care-enabling needs identified in this review were largely aligned with needs identified in earlier research (74). We continue to see caregivers wanting to have the necessary information, skills and roadmaps to do their job right. However, they also collectively highlight a critical gap in the literature—a need to expand focus beyond mere task-oriented support to embrace the holistic well-being of caregivers. Existing systems appear to neglect the need to distinguish between varied needs of caregivers, typically emphasizing logistical aspects like medical coordination and daily task management (i.e., care-enabling needs). These visible needs align with healthcare goals focused on patient outcomes, but often overshadow caregivers’ holistic well-being needs, such as emotional, social, psychological, and spiritual supports. Visibility must shift to holistically encompass both the logistical and personal dimensions of caregiving to provide comprehensive support and ultimately foster caregiver resilience.

Recognizing this holistic need is essential, particularly in light of the recursive relationship between caregiver burden and patient symptom distress. Wittenberg-Lyles et al. (6) labelled this phenomenon as ‘reciprocal suffering’. This perspective provides a strong imperative to see patient-caregiver as a unit of care and intervention.

While there is broad agreement on the necessity of supporting informal caregivers, the medical field continues to face challenges in effectively integrating the caregiver’s role within the healthcare framework. Caregivers were often perceived as supplementary, crucial yet not fully integrated components of the care ecosystem. Findings have shown that such mindset is not only that of healthcare professionals but caregivers themselves too. Healthcare providers were reluctant to discuss supporting caregivers’ needs, as they were concerned this may shift focus away from patient care, while caregivers themselves found it unusual to address their own needs (71).

There is an urgent need for more in-depth dialogue and clearer conceptualization of caregivers’ roles; this could broaden the avenues through which they are supported, nurtured, or empowered. Our findings indicate that a primary support need for caregivers of terminally ill family members is the pursuit of finding meaning in their caregiving efforts and feeling that they have performed their role well. This underscores the need for appropriate validation, comprehensive information, and practical support.

Although the beneficial aspects of caregiving were frequently overlooked in research, it is recognized that a positive perception of the caregiving experience significantly enhances the overall quality perception of EOL care, subsequently influencing favourable bereavement outcomes (63). Future efforts to support caregivers must have a deeper appreciation of what constitutes meaningful caregiving experience for a caregiver, and to plan a process that support caregivers’ meaning making, independent of patients’ care needs, and on top of linking up caregivers with tangible support. Studies which involved caregivers’ input in defining their own needs (23,53,54) show that engaging caregivers has the potential to meet these needs by validating their effort and importance, through the rapport built in the process.

To concretely respond to these insights, we propose a model that centers around the visibility of caregiver needs (Figure 1). This model would provide a framework that accounts for care-enabling needs and direct support needs and describes how the awareness of needs is related to various factors. Our model posits that visibility of needs—or lack thereof—significantly influences how caregiver needs are understood, prioritized, and addressed within both healthcare practice and policy. Consequently, recognizing and adapting to the holistic needs of caregivers and fostering their well-being requires systemic shifts in attention, engagement, and action.

Figure 1 Model for visibility of caregiver needs in palliative and hospice care.

Visibility of EOL caregiver needs is influenced by multiple factors. Chiefly, awareness among healthcare providers and the caregivers themselves is pivotal; the very demands of caregiving, with its often-overwhelming focus on immediate patient-related tasks, can obscure direct support needs. Effective caregiver support should involve nurturing caregivers to have greater awareness of their own condition and encourage autonomy and control (37).

Access to network and resources is equally impactful in affecting the visibility of caregivers’ direct needs; in situations where medical care is not readily available, the visibility of caregivers’ direct support needs may be neglected in favour of the more ‘pressing’ patient needs (67).

Healthcare providers play a pivotal role in shaping the visibility of caregiver needs through the choice and use of assessment tools. Assessment tools offer a mechanism to unveil needs; as visibility improves through comprehensive assessments and targeted provider interventions, so too will the efficacy of support strategies that positively impact caregiver needs overall. However, many existing tools have limitations. They frequently measure caregiving impacts largely in logistical terms, without considering the holistic experience of caregivers. Furthermore, most tools fall short in capturing the subjective and evolving nature of caregiver needs (50), particularly regarding intrinsic motivations and desires for support.

Cultural and social norms further complicate this landscape; the personal needs of caregivers can vary widely across different cultures and socio-demographic contexts. Currently, many strategies are derived from Western contexts and may not fully capture the complexities of caregiving in diverse cultural settings. This underscores the need for tools and interventions that are culturally appropriate and sensitive to caregivers’ dynamic and subjective experiences.

Limitations

For this unsystematic narrative review, no systematic assessment of bias risk nor assessment of methodological rigour was done for the reviewed articles. However, we noted some key limitations that may constrain findings. Addressing these limitations is essential for a nuanced understanding of the review.

First, many studies rely on small samples or convenience samples. This may impact external validity. On the other hand, large-scale surveys that were included often lacked an exclusive emphasis on EOL caregiving, which may confound understanding across different disease groups or care settings. Additionally, many studies depend on retrospective data collection after the patient’s death, posing a risk of recall bias. Finally, articles often emphasize the experiences of single caregivers, which may not reflect diverse array of caregiving configurations present in EOL scenarios, such as the broader support networks among family members. Other critiques of the caregiver literature should also consider the diverse definitions of what constitutes a caregiver across settings, time, and cultures, which can complicate consistent identification and analysis.

There is a need for improved study designs capable of capturing the complexity of caregiver roles and the richness of their experiences, acknowledging how they negotiate between fulfilling their caregiver roles and their own personal well-being.

Conclusions

As care partners alongside professional providers, EOL caregivers should never remain invisible in palliative care. The informal caregiver of a dying patient has a myriad of support needs unique to the circumstances, and they straddle several domains. All aspects deserve targeted support from professional providers in the home setting, charged to provide patient care and family support as part of holistic and humanistic palliative care. Whilst significant progress has been made in addressing care-enabling needs, direct support needs of the caregiver remain inadequately managed for various reasons discussed in this review. We believe interventions will only be effective and meaningful when attention to system change at personal, organisational and societal levels are observed. Further research should be done to further clarify and reveal caregiver needs.

Acknowledgments

None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-151/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-151/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-151/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. This article did not require ethics board review as it is a narrative review of existing literature and does not involve human participants.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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