Trajectory of palliative and end-of-life caregivers

WHO ARE THEY?

Palliative or end-of-life caregivers are those who provide non-professional, unpaid support to a loved one with a serious illness or incapacity that limits their life expectancy. Caregiving in this context may span weeks, months or years, and unfold along a trajectory marked by significant emotional upheaval. Indeed, these caregivers are apt to experience considerable ordeals as they witness their loved one’s capacity progressively decline from the time of diagnosis until death (2).

Throughout the trajectory, palliative or end-of-life caregivers take on a wide range of responsibilities. These may span personal care and day-to-day activities — eating, personal hygiene, getting dressed, and so on — as well as administrative and logistical considerations like scheduling appointments, coordinating transportation, and managing finances (3, 4, 5).

At home, caregiving responsibilities can include managing pain, nutrition, and medical equipment, in addition to administering medication (4). Given that such care requires a comprehensive understanding of the medical situation, including treatment options and care settings (6), gaps in knowledge or an inability to manage symptoms can be a source of caregiver anxiety:

Often, as the end of life draws near, the caregiver’s role intensifies accordingly. The focus here can turn to maximizing the loved one’s comfort and quality of life, and sometimes on maintaining a constant bedside presence, especially when death is imminent (8, 9).

Supporting a loved one through the palliative or end-of-life phase goes well beyond routine care, taking a significant emotional and human toll. In many cases, caregivers are a chief source of emotional support, ready to listen and offer comfort and empathy as their loved one comes to terms with their mortality — a process that, in itself, can evoke profound fears, uncertainties and existential distress (10, 11). This experience can stir deep and sometimes conflicting emotions in the caregiver, including anxiety, sadness, guilt, and hope. Such feelings are part of a grieving process that begins well before death, as caregivers anticipate the loss of their loved one and the prospect of life without them (12, 13, 14).

All the same, if being a palliative or end-of-life caregiver can be emotionally, physically and mentally draining, it can also prove a significant and positive experience:

A multifaceted reality

Their trajectories may share certain features, but palliative and end-of-life caregivers are by no means a homogeneous group. Their experiences will vary according to multiple factors ranging from age and relationship with the care recipient to gender, financial situation, access to resources, and type of illness or incapacity (see Factors influencing the trajectory). Some will be considered primary caregivers and assume the bulk of the care, support and decision-making responsibilities; others will play a secondary or intermittent role, according to their abilities, geographic proximity, or connection to the person receiving care (3).

In palliative and end-of-life contexts, multiple family members and others who are close to the care recipient may be mobilized concurrently, particularly during the advanced stages, turning the provision of support into a collective effort (3). Caregiving may thus be shared, transferred, or redefined throughout the trajectory, in keeping with each person’s abilities, availability, and relationship to the care recipient. As such, a primary caregiver may be supported by others, be temporarily replaced, or see their role change as their network becomes involved (3).

Familial and cultural configurations play into this plurality. Among certain immigrant families, for example, caregiving will involve multiple primary caregivers, while in some Indigenous communities, caregiving is part of a community dynamic that mobilizes an extended network (3, 16).

Age

Age shapes the experience of palliative or end-of-life caregiving in numerous ways.

Caregivers who support a loved one at the end of life are very often elderly themselves. This trend aligns with a broader demographic shift: in Quebec, for example, people aged 65 and up are expected to account for roughly 25% of the population by 2031 (143). Given the aging population, it is increasingly common for end-of-life caregivers to be aged 50 or older, or even fall within the 60, 70-, or 80-plus age groups (5, 8, 13, 16, 30, 72, 78, 93, 135, 144, 145, 146, 147).

Older caregivers often have health issues of their own that can affect their physical or psychological ability to provide care throughout the trajectory, rendering the role more difficult (148, 149, 150). From a psychological perspective, advanced age is associated with higher levels of depression and lower subjective well-being, particularly among caregivers (128).

Younger caregivers can face a different set of challenges. Many belong to the “sandwich generation” meaning they must simultaneously juggle their responsibilities as the parents of young children with caring for aging parents, in addition to holding down a job. This accumulation of roles can represent a significant burden and leave them with little time for themselves (76).

These age-related variations highlight the importance of adopting a nuanced approach to caregiver support, taking into account where each individual is in their own life course (149, 150).

Gender

Women are disproportionately more likely than men to be caregivers of a loved one (3, 88). This overrepresentation is especially pronounced among spousal or partner caregivers, largely because women tend to outlive their partners, thereby increasing the likelihood that they will be the ones to provide end-of-life care (88).

As well as representing the majority of caregivers, women predominantly handle personal care, emotional support, and domestic tasks, while men tend to see to financial and administrative matters (3). This division is largely driven by internalized gender roles and expectations.

Gender also shapes the experience of caregiving. Female caregivers are more likely to view caregiving as a “normal” responsibility, ascribing a sense of duty and dedication to the role and taking it on without complaint (54). Consequently, being a woman contributes to naturalizing and downplaying the role, while simultaneously masking its inherent difficulties (54). This gender bias is reflected in practice: it is often simply assumed by family, friends, and professionals that a woman will provide care to her partner, with little regard as to her limits or her right to choose. Societal norms thus reduce a woman’s caregiving to a mere extension of marital or moral commitments (22) — a dynamic that does not necessarily apply to their male counterparts.

But male caregivers in palliative and end-of-life contexts face their own set of hurdles. These include limited recognition of their role, a lower inclination to seek psychosocial support, and unmet informational or navigational needs. Because the available services are rarely tailored to their realities, their distress and sense of isolation can intensify throughout the trajectory (71).

Socioeconomic status

Socioeconomic status heavily influences a caregiver’s ability to support their loved one without compromising their own well-being. This disparity stems largely from how financial security affects access to support resources and shapes the practical choices available across the trajectory.

Caregivers with limited means face substantial additional stressors driven by the out-of-pocket costs of care, medications, or private support services (158). Low income also restricts the feasibility of home-based end-of-life care, as managing a patient at home entails expenses not covered by public insurance plans (specialized equipment, equipment rentals, transportation, hospital parking, etc.) that can accumulate into a crushing financial liability (4, 159).

Employment status further conditions the caregiving experience; those who remain in the workforce must continuously balance professional duties with care-related responsibilities (16). In some cases, the intensive nature of this support forces a deliberate withdrawal from the workforce (5), with severe financial fallout that disproportionately affects families who are already economically vulnerable.

A caregiver’s education level can act as a proxy protective factor. Higher education, which often supports financial security, also facilitates system navigation and access to support services, thereby indirectly alleviating isolation and financial strain for caregivers (131). Conversely, the systemic barriers faced by those with lower formal education can present added hurdles, potentially complicating the grieving process both before and after the patient’s death (160, 161).

Socioeconomic inequalities do not operate in isolation. They can combine with other forms of marginalization to create situations of heightened vulnerability for certain caregivers, exacerbating the difficulties encountered at various stages of the trajectory (15).

For example:

• Employed caregivers from ethnocultural minority backgrounds, who are statistically more likely to hold precarious jobs, often face limited access to caregiving leave (158, 162). They also tend to make less use of end-of-life residential care services, particularly when they have low incomes — a reality that can heavily compound the physical, psychological, and financial burdens of care (163, 164).
• When caregiving occurs in a context of housing instability, economic precariousness is often accompanied by other forms of social exclusion (78). In these scenarios, caregivers — who often come from the care recipient’s “street family” and may experience housing instability themselves — must fulfil their role under conditions of extreme vulnerability. As a result, the boundaries between basic survival, mutual support and care can become blurred, intensifying the hardships encountered along the trajectory (78).

Spirituality and religious beliefs

Spirituality and religious beliefs can make adversity easier to cope with — but they can also become factors that complicate the end-of-life experience, particularly during bereavement (82).

For many caregivers, spirituality and religion offer structure, comfort, and guidance in navigating the illness and loss of a loved one (3). Religious or spiritual rituals, practices, and traditions can support the search for meaning and facilitate the grieving process. Religious and spiritual communities may also represent a significant source of support, helping to alleviate isolation and strengthen the sense of belonging (130).

How people understand life, suffering, and death is deeply rooted in their cultural, spiritual, and existential backgrounds (23). Notably, these frames of reference can influence expectations and decisions regarding care. For example, some caregivers may prioritize sustaining life at all costs, or place particular importance on observing specific rituals:

Beliefs about the body of the deceased can be a particularly sensitive issue. Tensions can arise when caregivers and other family members hold differing views on funeral rites. Such differences can complicate the grieving process by creating conflict and adding to the emotional burden, particularly when caregivers feel excluded from decision-making or disagree with the choices made (129).

Beliefs and spirituality merit recognition both as resources that can support interventions and as essential to understanding individual experiences. Recognizing these dimensions is key to a person-centred approach to care that promotes cultural safety. Indeed, the beliefs held by caregivers and the person receiving end-of-life care may be misunderstood — or even rendered invisible — by professionals, especially when they diverge from dominant Western cultural and spiritual norms (23).

Caregiver health

A caregiver’s own health is a critical factor in how the trajectory unfolds. It directly dictates their capacity to take on daily responsibilities, determines the external resources they choose to bring in, and shapes the major decisions made along the way (52, 182).

The sustained demands of caregiving can trigger a wide array of physical, psychological, and emotional symptoms — stress, fatigue, exhaustion, anxiety, insomnia, heart palpitations and so on — that can drastically erode quality of life (24, 25, 67). In some cases, this relentless strain may cause such profound burnout that the caregivers themselves become patients, requiring intensive medical and psychological intervention (102).

For those already navigating functional limitations, chronic pain, or physical health problems, adding caregiving to the mix introduces extra challenges that significantly affect their ability to provide support (182). Similarly, underlying mental health issues make it much harder to manage both the acute stress of a disease’s progression and the mounting responsibilities it entails (182).

In the end, caregivers with fragile or at-risk health require a more robust safety net in order to sustain their efforts (182). When the available resources can no longer compensate for a caregiver’s physical or psychological limitations, a transition in care — such as relocating the care recipient to a hospital or long-term care facility — becomes unavoidable, regardless of anyone’s wishes (182). Critically, these turning points are rarely about caregiver capabilities alone; in reality, they stem from the complex interplay between the care recipient’s medical decline, the caregiver’s failing health, and the availability of formal support structures.

Keeping caregivers healthy is fundamental to sustaining their engagement and ensuring their well-being. This reality underscores the necessity of recognizing caregivers not merely as partners in care, but also as individuals who may have support needs of their own that merit attention. Ultimately, caregivers who are able to maintain their own identity, personal interests and life balance will be far better equipped to withstand the demands and daily stresses associated with providing care and support to someone else (11).

Minority group membership

Caregiver trajectories in palliative and end-of-life trajectory are also shaped by factors related to affiliation with one or more minority groups.

Ethnocultural diversity

Caregivers from ethnocultural minority communities frequently encounter distinct hurdles across the trajectory:

• Systemic racism and discrimination: experienced in interactions with health and social service workers can limit a caregiver’s willingness to seek help and use the available resources (15).
• Barriers to service access: Caregivers from ethnocultural minorities are less likely to be aware of or access institutional programs. This lack of connection inevitably heightens the physical, psychological, and financial burden of caregiving (163, 165).
• Language and communication gaps: Barriers related to language fluency — particularly with regard to French proficiency in Quebec — can disproportionately affect minority families. These difficulties extend beyond sharing or understanding information; they can also stall dialogue with care teams, affect caregivers’ sense of being heard, and erode confidence in the health and social services system (166). Such isolating experiences can feed feelings of powerlessness and insecurity, undermining trust in professionals, complicating the caregiving trajectory, and potentially widening existing inequalities (69, 166, 167, 168).

Caregiving in end-of-life situations may also be influenced by specific cultural values ​​that shape family dynamics and decision-making processes (69, 166). Approaches centred on individual patient autonomy that are characteristic of Western healthcare may conflict with other family and community-based concepts of care. For example, a physician’s request for family members and loved ones to leave the room in order to address the care recipient directly may be perceived as inappropriate and insensitive:

Indigenous caregivers

For Indigenous people, access to health services — diagnosis, testing, etc. — can be complicated, particularly in rural or remote regions, delaying access to appropriate care and intensifying the burden on caregivers (169). This is particularly well documented in cases of neurocognitive disorders, including dementia, which in some communities remain poorly understood, making early symptom identification more difficult and stalling the delivery of adapted care (170).

A further consideration is the central role of family, friends and collective structures in Indigenous cultures, particularly regarding end-of-life decision-making and support. Broader community involvement is deeply valued, provided that all choices are in the patient’s best interests (169). There is also a strong preference for having end-of-life care take place at home. Overall, limited access to formal healthcare resources, coupled with cultural values that emphasize family responsibility, can render the caregiving role exceptionally demanding.

Few studies have examined the issues facing Indigenous caregivers in palliative and end-of-life contexts, and even fewer have focused on those living in urban areas. The latter, however, may face specific challenges, such as social isolation, distance from support networks, and limited access to certain resources (26).

Health professionals must adopt approaches that are culturally safe, holistic, and centred equally on patients and their families, notably by recognizing both the role of spirituality and the impacts of colonialism, including trauma associated with the residential schools and the historical relationship with the healthcare system (169).

2SLGBTQIA+ communities

One of the most well-documented barriers facing 2SLGBTQIA+ caregivers is the lack of legal recognition for chosen relationships, particularly when supporting a partner. Consequently, if a caregiver has not been formally designated as a substitute decision-maker, they may find themselves excluded from clinical decisions or even barred from visiting the bedside, with preference given to the patient’s biological family (77). The final wishes of both patients and their caregivers may likewise be disregarded or overridden by biological family members who hold legal rights. Moreover, when a patient receiving end-of-life care is admitted to a facility, staff routinely default to contacting biological relatives, further undermining the recognition of chosen partners.

The issue of relationship disclosure can pose an additional hurdle. Fearing discrimination or a hostile reaction, some 2SLGBTQIA+ caregivers choose to withhold the true nature of their relationship from clinical staff. However, this protective non-disclosure can render them entirely invisible to the care team, restricting not only their access to medical updates, but also erasing acknowledgement of their role (171).

Navigating these fears of prejudice and forced invisibility complicates the emotional weight carried by 2SLGBTQIA+ caregivers, who must process anticipatory grief while remaining hyper-vigilant within the care setting (140).

Connections with the care recipient and the broader circle

Caregiving at the end of life covers a wide range of relationships, from close friends to relatives, although the role is typically assumed by spouses, partners or adult children (3, 4, 5, 9, 90, 91, 147, 155, 156, 173). The extent of caregiver involvement is largely determined by proximity to the person receiving care. Those in the immediate circle are therefore the most likely to provide primary care, with grandchildren and friends tending to play a more secondary role (3).

Partner caregivers

When a spouse or partner assumes this role, the couple’s relationship becomes central to the caregiving experience. Their bond can be transformed, sometimes dramatically, as the dynamic shifts from life partners and companions to a relationship centred on caregiving:

Type of illness or incapacity of the person receiving care

The care recipient’s illness or incapacity considerably affects the kinds of caregiving support provided (3, 4, 5).

For instance, when a patient faces severe physical impairment — for example, advanced pulmonary disorders or amyotrophic lateral sclerosis (ALS) — caregiving tends to revolve around complex medical tasks, such as managing pain or acute respiratory failure (24, 90). Meanwhile, progressive conditions like neurocognitive disorders demand a continuously mounting level of caregiver support, imposing a long-term physical and emotional burden that intensifies over time (24). Finally, illnesses characterized by erratic timelines complicate care even further by making it hard to anticipate future needs. This unpredictability is common in non-cancerous conditions, where establishing a clear prognosis is notoriously complex — an ambiguity that hinders the caregiver’s ability to prepare and significantly heightens their anxiety about the future (5, 69).

Unequal access to care

A patient’s diagnosis often seals their fate when it comes to accessing specialized care and services. While those with advanced cancer generally benefit from an earlier, more structured palliative pathway, individuals battling non-cancer or age-related conditions are routinely left out in the cold, accessing these vital services only at a later stage, long after their health has severely deteriorated and their autonomy has vanished (66, 67, 68).

This systemic inequality in access to palliative care has direct, real-world consequences for caregivers. Those supporting non-cancer patients must frequently absorb a heavier, more exhausting workload while receiving significantly less institutional backing. Without a palliative framework to guide them, caregivers may be left with too many unanswered questions, adding considerable strain to their overall burden (4, 32, 34) (see Absence of a palliative approach to care).

Care recipient wishes and caregiver capacity

The final wishes expressed by people in palliative and end-of-life contexts can have profound repercussions for their caregivers.

As death approaches, these wishes often become a hallowed ideal — for example, dying in a chosen setting surrounded by loved ones, with certain symbolic touches (music, atmosphere, etc.). However, bringing these wishes to life falls squarely on caregivers who are already balancing complex responsibilities. Grafted onto their daily duties are the logistical demands of stage-managing the process of dying itself — a role that entails actively managing the physical environment, overseeing visitors, and curating a peaceful end-of-life atmosphere (19).

Some caregivers report feeling pressured to fulfil this role, driven by a sense of duty, societal expectations, or both. However, despite a profound desire to honour their loved one’s final wishes, they often lack the underlying resources, support, or capacity to do so. This mismatch frequently triggers stress, guilt, and a painful conflict between the desired ideal and what is realistically possible. Ultimately, the ideal of a perfectly orchestrated end-of-life experience, while deeply human, tends to mask the practical constraints and logistical burdens placed on caregivers (22, 182).

The wish to end life at home

Remaining at home in a familiar environment, rather than fading away in a hospital ward or care home, is one of the most common final wishes expressed by people at the end of life (159). However, while caregivers may embrace this wish, a strong cultural tendency to idealize at-home end-of-life care frames it as the gold standard for a “good” death, glossing over the actual impact of such a choice on the person who provides the care (22).

Indeed, the desire to avoid hospitalization at all costs can have significant repercussions for caregivers, who must shoulder a considerable medical and emotional load, often in complete isolation. In this context, a loved one’s final wishes can trap caregivers with a painful quandary — especially when the required care is beyond their capacity, forcing them to draw hard boundaries at the risk of feeling judged or experiencing regret (17).

This silent pressure can also be compounded by “guilt tripping,” where others imply that the success of home care rests entirely on the caregiver’s shoulders (22):

I was told in no uncertain terms that, if I couldn’t provide a particular treatment or level of care, there’d be no choice but to hospitalize [the care recipient] — even though [their] wish was to die at home. [Free translation]
Caregiver (cited in 34)

In this context, professionals must bear in mind that caregivers are also experiencing the ordeal of their loved one’s impending death and may feel guilty for being unable to honour their final wishes (34). Thus, without calling at-home end-of-life care into question, the notion that home is the ideal setting for a “good death” must be nuanced. Equally essential is acknowledging the caregiver’s role and boundaries in this scenario so that they may be provided with the appropriate support (22).

Service organization and access

Access to specialized palliative and end-of-life services in Quebec and Canada remains highly uneven.

To begin with, palliative care generally remains limited to certain settings (hospital units or hospices) and to the terminal phase of an illness. Consequently, eligibility is restricted for many people who have age-related incapacities or degenerative, cardiac, or pulmonary diseases. This can also apply to other life-limiting conditions, due to the difficulty, if not impossibility, of establishing a clear prognosis or of tracking disease progression and the individual’s decline with any certainty (5, 68). As a result, during times of acute need — such as periods of declining autonomy — accessing palliative care is perceived as complex and poorly coordinated, fundamentally increasing the burden on caregivers as they struggle to manage rapidly changing symptoms and treatments (62).

On a related note, in a context marked by capacity constraints and a policy directive prioritizing at-home palliative and end-of-life care whenever possible, a growing number of patients are spending their final days at home. This can entail significant responsibilities for caregivers, who may not always have the information, preparation, or support needed to provide such care (109, 122).

Many caregivers also deplore the widespread lack of coordination that makes it difficult to connect diverse professionals and identify available resources — a state of affairs that compromises continuity of care and encumbers caregivers with avoidable additional stress, thereby worsening an already significant burden (5).

Moreover, even when palliative and end-of-life services exist on paper, caregivers can encounter a bruising uphill battle to actually access them, being routinely met with unreturned calls or left adrift during critical times, such as a loved one’s rapid decline or the aftermath of their death (17). This organizational inertia forces caregivers to redouble their efforts, hounding administrators and pushing through systemic silence and rejection (154). Thus, access to care is not dictated by clinical urgency alone: it also demands that caregivers successfully navigate a system that, in many cases, actively locks them out.

Systemic barriers can also create deep inequalities among caregivers.

For example:

• When precarious immigration status means exclusion from public coverage, caregivers are forced to either assume the full burden of care themselves, or resort to costly private resources (23).
• Low-income caregivers are disproportionately penalized, obliged to pay significant out-of-pocket sums to secure care or services that the public system cannot supply (5).
• Living in a rural or remote region presents distinct challenges. Limited local services often compel caregivers to travel long distances — a situation that saps time, energy, and financial resources (26, 136, 187).

Geographic location

Living in a rural or remote area adds a unique set of challenges to the experience of caregiving:

• The distances involved frequently limit access to specialized services, medications, medical equipment, and formal support resources (138).

• Chronic shortages in qualified professionals can reduce access to home care visits, respite programs, and psychosocial interventions, heavily increasing the caregiver’s workload (138).

• Caregivers must take on a much larger share of home care duties themselves, notably because institutional resources are distant or less accessible (138).

• The desire to remain at home until death is often stronger in rural areas, driven by a deep attachment to place and a cultural emphasis on self-sufficiency. Honouring this choice often relies heavily on the involvement of caregivers, who assume a central role in supporting a death at home (138).

• Some caregivers find themselves shouldering their responsibilities in isolation, with no one nearby who truly understands their daily reality — a dynamic that can trigger a deep sense of loneliness (152).

Taken together, the relentless demands of the role, combined with little to no respite, isolation, difficulty accessing services and a paucity of emotional support, leave rural caregivers highly vulnerable to anxiety, psychological distress, and burnout (137).

Conversely, rural locations can be characterized by strong community ties, informal support networks, and a deep-seated culture of ​​mutual aid, all of which can benefit caregivers extensively.

Informal resources can partially compensate for the lack of formal services. However, they cannot replace structured clinical support, particularly regarding psychological counseling, bereavement care, and complex symptom management (15).

Care settings

The care setting has an important influence on the caregiving experience.

At home

The home can quickly transform into a demanding, even overwhelming, care setting. Caregivers must contend with complex medical tasks, the requirement to be continually present, and the weight of emotionally charged decisions, such as balancing the desire to prolong a loved one’s life with the need to preserve their comfort and dignity (6). These combined responsibilities can escalate into a near-constant presence, especially in the final stages of life, when some caregivers must maintain a round-the-clock vigil at the bedside (8).

Certain times of day may also be more difficult:

Despite these challenges, caregiving at home can yield profoundly positive experiences, strengthening emotional bonds and imbuing the act of care with profound personal meaning. Honouring a loved one’s wishes to die at home often serves as a powerful source of fulfillment, giving caregivers a lasting sense of purpose in their commitment (58, 122).

In summary, providing palliative or end-of-life care at home is a deeply individual experience, uniquely shaped by the personal values, resources, and limitations of each caregiver. The final impact of home care hinges not only on access to round-the-clock professional support, but also how thoroughly caregivers are prepared for what lies ahead and whether they can reconcile the demands of continuous care with safeguarding their own well-being (7, 94, 122).

Other care settings

Within facilities like hospitals, hospices, and long-term care centres, a caregiver’s role naturally shifts toward physical presence, emotional support, and shared decision-making, though their involvement remains pivotal (6). Institutional care requires families to establish a relationship of trust with the care team to ensure their loved one’s dignity and care needs are met (11). When this relationship is lacking, weakens, or breaks down entirely, the consequences are immediate: caregivers can become hyper-vigilant and feel compelled to maintain a constant presence, stepping back into active caregiving, escalating complaints to management, or policing staff to ensure they do their duties (11).

However, deep-seated structural factors create stark inequalities in the quality of care provided across different settings. Not all facilities consistently share information regarding the care recipient’s condition or the next steps in their care path. In certain contexts — particularly within CHSLDs, Quebec’s public long-term care facilities — chronic staff shortages and being continually redirected toward different professionals make it exceptionally challenging to access reliable information (8). Furthermore, since not all care settings embed a palliative approach into their operations, many individuals receive care unsuited to their condition, leaving caregivers unable to access essential support (see Integrating a palliative approach to care) (23).

By mandate, the CHSLDs house older adults experiencing a severe loss of autonomy who require continuous clinical oversight, rendering them unable to remain at home (84). Consequently, these facilities accommodate a high volume of individuals at the end of life. However, the institutional environment is not always tailored to end-of-life care, leaving caregivers feeling helpless as they witness a decline that is sometimes accelerated by inadequate care and a poorly adapted physical layout (23). Some caregivers describe an end-of-life experience marred by a sense of haste and an overly bureaucratic atmosphere — a far cry from the peaceful environment they had hoped for. They also report feeling drained from the constant travel to meet facility demands (8), compounded by communication failures that, in some cases, deprived them of the chance to be present at their loved one’s death (8).

These severe systemic shortfalls within CHSLDs underscore the urgent need to integrate a palliative approach immediately upon admission, while guaranteeing continuous support for caregivers, including bereavement counselling after death (135).

ENTRY INTO CAREGIVING

The caregiving journey often begins long before the transition to palliative or end-of-life context. Many caregivers assume the role gradually, supporting a loved one through a chronic illness, health crisis or form of incapacity that is not necessarily terminal. Because such support can span years, it is not uncommon to enter the end-of-life phase already carrying a profound sense of physical and emotional fatigue. To learn more about what caregivers’ experience prior to this phase, see the Observatory’s other caregiving trajectories.

However, caregiving can also begin overnight with an unexpected terminal diagnosis or unfavourable prognosis. In these situations, the entry into caregiving is abrupt and shocking, often accompanied by a rapid escalation of responsibilities amid a now-uncertain future.

Diagnosis and prognosis

With or without an end-of-life prognosis, a diagnosis of serious or incurable illness marks a pivotal shift in the caregiving trajectory. Even when caregiving is well established — for example, when it has been ongoing for months or years — such a shift can profoundly transform the caregiver’s role. The illness takes on new significance as the caregiver moves beyond providing day-to-day care to navigating a condition that will progressively change until the final stages of life (20, 21).

A serious diagnosis is often experienced as a major shock, which some have likened to “a slap in the face” (22, p. 80). The prospect of their loved one’s death may thrust caregivers into a state of deep uncertainty marked by the loss of hope for recovery, a struggle to make sense of what is happening, and an inability to envision the future (4). Beyond the practical need to organize care and support, this moment often prompts a profound reflection on death (22).

Lastly, the way in which a diagnosis is relayed can have a major impact on the caregiving trajectory (15, 23, 24, 25). A diagnosis communicated abruptly, with little information or guidance, can leave care recipients and caregivers without a clear understanding of the implications or what to expect (24, 25).

The start of a grieving process

A diagnosis of a serious and incurable illness marks a major turning point in the caregiving trajectory. For many caregivers, it signals the start of a grief process that involves grieving the loss of the person they once knew, as well as letting go of any hope for a cure (9, 21). Some must also grapple with the realization that the future they had once imagined with their loved one may never come to pass. That realization is often accompanied by uncertainty, bewilderment, and difficulty envisioning what lies ahead as the illness gradually transforms the relationship (4, 21). Diagnosis can therefore initiate a process of redefining the bonds between the caregiver and care recipient as they adapt to the prospect of eventual loss (22, 30).

In some situations, years may elapse between the initial diagnosis and death, allowing caregivers to prepare for the loss of their loved one (9). However, some illnesses progress rapidly, leaving little opportunity to get ready for the end of life (24).

Advance care planning

Advance care planning can represent a pivotal step in the caregiving trajectory, particularly when the caregiver must make decisions on behalf of a loved one who has become incapacitated (32). It is especially relevant in the context of neurocognitive disorders like dementia or Alzheimer’s, since it provides an opportunity to discuss issues related to healthcare, finances, legal matters, and end-of-life wishes while the care recipient still has capacity (33).

Advance care planning can provide critical support to the caregivers of someone who has lost capacity, inasmuch as the care recipient’s wishes and preferences have been considered beforehand. However, as the disease progresses, their preferences and wishes may evolve. ACP must therefore be seen as an ongoing process — one that is best initiated early in the trajectory — to ensure it remains aligned with changes in the situation (35, 36).

Advance medical directives

Advance medical directives can be part of the broader ACP process. They are not specific to the palliative care context and can be completed by anyone aged 18 or older. They consist of recording, in a legal document, the wishes of a person who has capacity regarding the medical care they will agree or refuse to receive, should they lose the ability to provide consent (37).

However, because physicians are often unfamiliar with advance medical directives, they may not routinely check whether a directive is in place. To date, the advance medical directive framework has not functioned effectively, and its impact on the health and social services system has been virtually negligible, largely because it is rarely used by health professionals, and since few individuals have completed the process (39).

It is therefore important to maintain the discussion between care recipients, caregivers, and health professionals throughout the advance care planning process. Such conversations can help foster an evolving understanding of the person’s wishes, values, and care preferences (39).

Level of care and cardiopulmonary resuscitation (CPR)

The Quebec health system’s levels of care and cardiopulmonary resuscitation form is designed to clarify the goals of care (i.e., prolonging life or ensuring comfort) as well as the interventions to be undertaken when the health of a person at the end of life deteriorates (40). The form is completed following a clinical assessment and discussions, and must be signed by a physician or specialized nurse practitioner. If the patient has lost capacity, this tool can allow their representatives to participate in discussions and decision-making about their care, based on the following four levels:

• Prolong life through any means necessary
• Prolong life through limited care
• Prioritize comfort over prolonging life
• Ensure comfort only, without aiming to prolong life

The form also records the choice made by the patient or their representative regarding whether or not to attempt cardiopulmonary resuscitation.

Caregivers may be involved to varying degrees in this process, including participating in discussions, supporting decision-making, or acting as substitute decision-makers. The form therefore serves two purposes: affirming their place in the process, and helping them prepare for their role throughout the care trajectory.

Advance requests for medical assistance in dying

The extent of caregiver involvement in MAiD depends on the stages that follow a diagnosis and the disease progression (43, 44).

While it is generally the person receiving the care who first expresses interest in MAiD, their caregiver may be involved in the search for information about the process, as well as in finding a physician or specialized nurse practitioner to formally initiate the request.

Caregivers may also be involved in completing the MAiD request form, which entails identifying the clinical manifestations that will trigger the implementation of MAiD after the person loses capacity. In this context, they may help their loved one specify the conditions that will prompt the administration of MAiD, encourage reflection, steer conversations, provide reminders, and so on. This stage can generate significant stress for caregivers, sparked by a sense of urgency to complete the request before their loved one can no longer provide their consent (43).

As part of the MAiD process, caregivers may be designated as trusted third parties by their loved one. In this capacity, they act primarily as a monitor, alerting the care team when the care recipient reaches the stage of incapacity and exhibits the symptoms described in their MAiD request (44). This role can elicit feelings of guilt, as some caregivers may feel they are indirectly contributing to their loved one’s death by essentially “sounding the alarm” (19). The result can be significant stress and emotional strain (43) — a burden that falls within a broader context where, in many cases, the caregiver already acts as an intermediary between the care recipient and care team.

Advocating for their loved one can also place caregivers in delicate decision-making situations, particularly as the former’s neurocognitive condition deteriorates (30, 32). It is therefore essential that support for caregivers be integrated into the care continuum to ensure they are well prepared for these responsibilities when the time comes, and not left to face them on their own.

Should the request result in the provision of MAiD, the caregiver’s role at this stage is more limited: they play no direct part in assessing the care recipient’s health, do not decide on the timing of the procedure, and do not have the authority to delay or cancel the request (44). However, they may be consulted regarding preliminary arrangements, including the date and time MAiD will be administered.

Medical assistance in dying

Medical assistance in dying (MAiD) involves the administration of medication by a physician or specialized nurse practitioner (SNP), at the person’s request, with the aim of causing death and relieving suffering (172). The request may be made contemporaneously, with a view to receiving MAiD in the short term, or in advance.

It is important to note that making a request for MAiD does not guarantee its provision (113). For example, a person who has requested MAiD might die naturally before it can be administered, or, in the case of a contemporaneous request, may have lost the ability to express consent by the time the medication is to be administered (114).

The decision to request MAiD can elicit a strong emotional response among the patient’s family and friends, particularly their caregivers. This decision may conflict with the caregivers’ own values ​​and beliefs, or run counter to their desire to keep their loved one with them for as long as possible (3, 84).

While MAiD is generally accepted, certain taboos persist. Not all caregivers are comfortable speaking openly about their experience, sometimes for fear of being judged or misunderstood:

However, the opposite is true for some caregivers, who are quite open to discussing their experience (116), pointing out that MAiD puts an end to the care recipient’s suffering and lets them die with dignity (116). Some also feel it gives them a sense of control over a highly emotionally charged situation (116). Crucially, knowing the precise time of death allows them to honour their loved one’s final wishes, schedule visits from family and friends, cherish those last moments, and say goodbye:

Nonetheless, even if they are well prepared and support their loved one’s decision to receive MAiD, caregivers may find that the process, from the initial request until death, unfolded very quickly or even felt rushed (17, 115).

Integrating a palliative approach to care

Implemented at time of diagnosis and throughout the course of the illness or incapacity, palliative care can be delivered at home, in hospitals, in long-term care facilities, or through community-based services to ensure continuity of care for patients and their families (37, 47).

A palliative approach aims to:

• Manage pain, complications, and unexpected symptoms by providing support to the care recipient and their caregivers (48, 49, 50).

• Offer caregivers support, psychosocial guidance, information and respite, including during the post-death bereavement process (48).

• Better prepare the patient and their loved ones for the end of life (51).

• Facilitate dialogue regarding any decisions and wishes that may need to be addressed throughout the trajectory (18).

• Ensure better continuity of care by coordinating services and support in line with the evolving needs of the care recipient and their caregivers (4).

In the caregiving trajectory, early access to palliative care ensures both care recipients and caregivers a better quality of life and a smoother experience as the disease progresses (23, 53). All too often, however, a palliative approach is overlooked or introduced only at the very end (see Absence of a palliative approach to care).

Within this framework, caregivers fulfil a dual role: they are vital care partners supporting their loved ones, but they are also recipients of services and support themselves (55). This overlap can create tension, particularly when a caregiver’s firsthand knowledge clashes with care team recommendations. To avoid conflict during critical moments, the caregiver’s distinct role must be clearly understood and acknowledged from the outset (56) (see Communication and partnership with care teams).

The role of professionals in integrating a palliative approach

Helping caregivers understand the palliative approach

A clear understanding of the palliative approach and its true purpose helps reassure caregivers and alleviate their fears (48). However, some professionals deliver palliative-style interventions without explicitly labeling them as such, possibly for fear of upsetting the family or inadvertently diminishing hopes for recovery. Unfortunately, this silence only fuels apprehension. In particular, it reinforces the misconception that a palliative approach spells imminent death, making the eventual transition much harder. Professionals should instead proactively offer reassurance by explaining the key goals of palliative care: improving quality of life; and connecting patients and their families with valuable support resources (48).

Fostering early integration of a palliative approach

All too often, the integration of a palliative approach is delayed, if not entirely absent. This stems not only from a lack of professional training, but also from the lingering discomfort, fears, and taboos that still surround the topic (33, 58). In this environment, caregivers themselves frequently have to request palliative care for their loved one. Making this request, however, can bring a profound sense of guilt, as caregivers may feel uniquely responsible for setting in motion the final stages of their loved one’s life (19).

Support throughout the trajectory

Deep disparities in the availability of palliative services mean that caregivers often receive inconsistent, insufficient support across the care path (33, 59). Even when a palliative approach is available, a lack of seamless integration can make it more difficult to access specific kinds of support (59).

Conversely, a well-structured palliative framework provides support to caregivers from start to finish. This continuous backing empowers them choose their own level of involvement, prioritize self-care, manage stress, burnout, and distress, and feel genuinely equipped to navigate the realities of caregiving (59, p. 380; 60).

Keeping the lines of communication open

Early access to palliative care helps unlock dialogue about highly sensitive topics all the sooner, paving the way for advance care planning (see Advanced care planning).

Moreover, transparent communication from health professionals ensures caregivers feel valued and included in treatment decisions, giving them a chance to voice their concerns with the care team and establish their own personal limits (6, 34).

Fostering seamless home care coordination

Given the immense commitment entailed in providing palliative care at home, a properly integrated approach ensures that families don’t have to hunt for the support they need. By bringing together an array of partners — including pharmacists, physicians, nurses, and community workers — this model streamlines coordination, anticipates needs early on, and prevents complex, distressing issues from arising (4).

Absence of a palliative approach to care

A diagnosis of incurable illness does not imply that a palliative approach will be offered as a matter of course, or even discussed (24) (see Integrating a palliative approach to care). Indeed, data from Quebec showing that many people at the end of life continue to receive only intensive curative care — including through emergency department visits and ICU admissions — reflect the delayed integration of palliative care into the trajectory (64).

The lack of a palliative approach may:

• Prevent caregivers and the care recipient from accessing crucial information about disease progression and the available treatments.
• Limit access to the appropriate support.
• Make transitions in care more difficult.
• Contribute to rushed and uninformed decision-making.
• Focus attention solely on the care recipient, with the emphasis on medical care alone (17, 32).

Many factors contribute to the absence or delay of a palliative approach:

• People whose incapacities are related to chronic illness or aging often access these services only after their health has severely deteriorated and their daily functioning has sharply declined (66, 67, 68) (see Type of illness or incapacity of the person receiving care).
• The erratic course of certain illnesses makes it difficult to establish a clear prognosis, which in turn complicates the integration of a palliative approach (5, 67, 68, 69, 70).
• Negative perceptions that equate palliative care with the loss of hope, the cessation of treatment, and death can stymie vital conversations on this topic (48, 58, 71).
• Staff and resource deficits within the health and social services system are a major roadblock to accessing specialized end-of-life care (69).
• A widespread lack of frontline training in palliative approaches delays the early identification of individuals who could benefit from this care (183, 184).

Periods of intensified support

Periods of intensified support occur when a care recipient’s physical or mental decline significantly increases caregiving demands (24, 89). These periods can require caregivers to reconfigure their role, and may also signal that the end of life is near.

Physical impairments — including difficulties walking, dressing, bathing, eating, speaking, or breathing independently — can substantially alter the nature and intensity of caregiving (90). As care needs increase, caregivers may feel increasingly overwhelmed, especially when life-sustaining technologies or more intensive forms of support are required. Much of this distress may stem from the pressure of feeling responsible for their loved one’s well-being at such a critical stage in their illness (83, 91).

Physical decline is not the only challenge. Changes in behaviour can gradually affect how the care recipient expresses themselves, as well as how others perceive them, obscuring or even eclipsing their identity and individuality. For caregivers, these changes can be stressful and cause significant suffering while adding to burden of care (9, 21, 92). Communication with the care recipient can also become increasingly difficult as their health deteriorates:

A trajectory focused on caregiving for people with Alzheimer’s disease or dementia is currently being prepared and is due for release in 2027.

Confusion and strong emotions

Seeing the care recipient’s autonomy wane can be heartbreaking. For spouses and partners, these emotional challenges are often compounded by the altered nature of the couple’s relationship.

Providing intensive care at home

In many cases, a major loss of autonomy occurs while the care recipient is living at home. During this period, the demands of caregiving tend to increase as the end of life approaches (3, 75, 93).

The growing needs of a person receiving care at home can raise concerns for caregivers:

• Medical needs: Caregivers frequently worry about their capacity to handle increasingly complex tasks — for example, administering medication and operating or monitoring medical equipment — as well as the toll these responsibilities might extract on their own well-being.

• Medication management: Administering and managing medication adds a heavy layer of responsibility to an already taxing routine. The constant vigilance required, particularly during dosage modifications and care transitions, can leave caregivers physically and emotionally drained, in some cases leading to burnout (63).
• Logistical demands: As the patient’s autonomy declines, the burden of planning care and organizing treatment increases. Caregivers must dedicate significant energy to arranging transportation, scheduling medical appointments and follow-ups, and overseeing transitions between different care settings.

Faced with these burgeoning requirements, some caregivers describe themselves as being in “survival mode,” feeling trapped by the demands of supporting their loved one at home. Loss of autonomy can require caregivers to remain physically present around the clock; some are reluctant to leave the house at all, either because they want to spend as much time as possible with their loved one (7) or because they fear bringing home a virus that could further compromise their health (3). This reluctance may be even greater when a care recipient’s survival depends on medical equipment, as caregivers may be unwilling to leave them without supervision (91).

Specific concerns for employed caregivers

Employed caregivers often face a difficult decision when their loved one first loses autonomy: should they take leave to provide support and coordinate care as needed, or save it for the later stages of the illness, including the final moments of life? In many cases, they exhaust their available leave early on; furthermore, they may be unable to access employment insurance benefits (see Caregiver resources and support). This can result in having to continue working as their loved one nears the end of life (9). Meanwhile, as the demands of caregiving rise over time, some caregivers experience professional burnout and are ultimately forced to take sick leave (9, 24, 85).

Employed caregivers can thus find themselves in an increasingly precarious financial situation, facing reduced income alongside mounting expenses — for example, costs related to transportation, home modifications, or medical equipment rentals. These financial pressures can further complicate an already stressful situation (4, 9, 24, 85).

Employed caregivers can thus find themselves in an increasingly precarious financial situation, facing reduced income alongside mounting expenses — for example, costs related to transportation, home modifications, or medical equipment rentals. These financial pressures can further complicate an already stressful situation (4, 9, 24, 85).

End-of-life care

Caregivers are often central to end-of-life care, particularly because of the decision-making needs that arise at this pivotal juncture — a role that becomes even more critical when a loved one loses the capacity to make decisions for themselves (30). Caregivers may be called upon to participate in discussions with the care team about such sensitive matters as whether to continue, adjust or withdraw treatment (35). This requires a clear grasp of the implications of each proposed option; it also implies, not just a familiarity with their loved one’s wishes, but also the ability to articulate and advocate for those wishes, even when they had not been clearly expressed verbally or in writing. The caregivers’ role in decision-making therefore requires them to reconcile their personal values with their understanding of the medical situation and their loved one’s presumed wishes, all within an emotionally charged context (35).

At-home end-of-life care

When end-of-life care takes place at home, managing medical equipment, organizing the return home, and coordinating different services can increase the complexity of care, requiring caregivers to assume a role that is at once technical, logistical and medical (5, 101). The resulting increase in responsibilities may heighten their stress and fatigue (98, 102).

A multidisciplinary approach involving a range of professionals and community organizations is often required. Such a model necessitates significant coordination among caregivers and the various stakeholders involved (103). The importance of coordination is particularly evident in the home setting, where gaps in communication can lead to misunderstandings between professionals and caregivers as to who is responsible for what, as well as disruptions in service (104).

Comfort care

Comfort care focuses primarily on relieving pain and easing symptoms with the aim of promoting the care recipient’s well-being and dignity during their final stages of life. It includes symptom management, assistance with hygiene and personal comfort, and psychological, social, and spiritual support tailored to the needs of the person receiving care and their caregivers (36, 104).

The transition to comfort care can be confronting for caregivers, as it may be perceived as signalling the end of treatment and a form of ‘letting go’ of their loved one. It is therefore essential to reassure families that transitioning to comfort care does not mean their loved one is being abandoned by the health and social services system (106).

In many cases, comfort care allows caregivers to remain at the bedside continuously until death. However, unlike medical assistance in dying (MAiD), where the timeline is established in advance, the duration of comfort care is fundamentally unpredictable. Caregivers may therefore find themselves maintaining a bedside vigil for an indeterminate period. While this sustained presence is almost always willingly undertaken, it can severely interfere with their professional and financial stability, forcing them to scale back working hours, take extended leaves, or exit the workforce entirely (3, 8, 85).

Continuous palliative sedation

Continuous palliative sedation consists of administering medication to a person at the end of life, at their request or the request of a loved one, with the aim of relieving their suffering by rendering them continuously unconscious until death (133).

Caregivers frequently play a central role in this context, particularly when they are the ones to initiate discussions about palliative sedation with the medical team (108). Furthermore, unlike MAiD, which can only be requested by the patient themselves, a request for continuous palliative sedation can be initiated by a caregiver or substitute decision-maker (99). Still, carrying the responsibility for decisions surrounding the administration of sedation can cause families deep emotional distress (108).

The distinction between continuous palliative sedation and MAiD is not always entirely clear to caregivers (110, 111). MAiD is intended to end a person’s life and is administered strictly at their request, whereas continuous palliative sedation aims to relieve severe symptoms by lowering the patient’s level of consciousness. Because both interventions occur in the context of severe suffering and may be associated with a hastening of death, they are sometimes conflated. Once adequately informed, however, caregivers generally recognize the necessity and comforting benefits of sedation, both for their loved one and for themselves (112).

Beyond the weight of the initial decision, caregivers may experience heightened anxiety before, during and after sedation is administered, along with inner turmoil and physical exhaustion. The reasons for this can include:

• Inner conflict (wishing to see their loved one’s suffering end versus wanting to enjoy their presence for as long as possible).
• The reality that they will no longer be able to interact with their loved one once sedation has been administered.
• The prolonged and unpredictable duration of the sedation.
• The time spent, often without sleep, at their loved one’s bedside, which can extend for days (108, 112).

Absence of end-of-life care

Whether driven by personal preference, a lack of information, or a stark absence of resources, some people reach the end of life without ever receiving formal palliative care (19). This absence can have serious repercussions for caregivers, who may find themselves bearing the weight of a loved one’s final days completely alone. Without professional support, these caregivers are often left in the dark as to what to expect, ill-equipped to make critical choices, and defenseless against the emotional upheaval surrounding their loved one’s decline and death (9).

Death of the care recipient

The death of the care recipient is a significant milestone in the caregiving trajectory. Though it doesn’t necessarily mark the end of the caregiver’s duties toward their loved one — tasks such as arranging the funeral, carrying out final wishes, sorting through personal belongings, and handling the will may still be part of their role (125) — their burden may decrease substantially as the need to provide direct medical and emotional support comes to an end (9).

Caregivers are not always prepared for the shock of death, nor for the intense and sometimes conflicting emotions it may bring, even when they knew it was imminent (3, 9, 67, 114, 123). At the same time, death may also elicit the profound relief of knowing that a loved one’s suffering has finally ended:

Although grieving is a lengthy process that may have begun earlier in the trajectory, caregivers often identify death as the start of their bereavement: a time of loss and sadness that is often compounded by accumulated fatigue from the demands of caregiving in the weeks or even months beforehand (9).

Death in the absence of a palliative approach to care

The absence of a palliative approach to care can severely compound the trauma experienced by caregivers when a loved one dies. Many report feeling abandoned, faced with a total lack of emotional and relational support from care teams — a failure that is most glaring in settings where palliative care is underdeveloped or insufficiently integrated, such as certain private seniors’ residences (23).

It was kind of a problem. When he passed away, we were in palliative care and it was really hard. The nurses kept shushing us — we’re a really big family — so no one was speaking. Then the nurse said, “I think some of you should leave.” Like, zero empathy! [Free translation]
Caregiver (cited in 23)

Experiences of this kind starkly highlight the limitations of an approach focused primarily on the administrative or clinical aspects of death, at the expense of providing caregivers and other loved ones with emotional, relational and family support.

Post-caregiving period

Rather than marking a return to normalcy, the end of a caregiving role often signals a new period of emotional, personal, and day-to-day adjustment. The shift away from active caregiving can be a time of significant adaptation, with far-reaching effects on the caregiver’s life. This is a time of dual loss: the loss of a loved one, and the loss of a role that, until then, may have occupied a central place in the caregiver’s identity (130).

Bereavement

Although grieving unfolds throughout the caregiving journey and intensifies at certain critical moments, the post-caregiving period can present its own distinct challenges.

The intensity and duration of bereavement will vary radically from one caregiver to the next. For those who struggle to accept the finality of death, the weeks or months following a loss can trigger a profound emotional and psychological upheaval that refuses to lift (20).

This tumultuous period is often marked by an active sense of protest — a confluence of anger, confusion, guilt and a bitter sense of injustice.

For some caregivers, making sense of the death and coming to terms with the permanence of the loss may involve looking for someone or something to blame, or trying to pinpoint a cause (20).

Most bereaved caregivers gradually enter a period of reorganization and adaptation that can span months or even years. As the pain of loss ebbs, they may start rediscovering pleasure and engaging in new activities or projects, slowly adjusting to life without their loved one and regaining a sense of balance (20). However, some remain frozen in their grief, unable to adapt without targeted professional intervention (5, 160, 161).

As with the rest of the trajectory, factors specific to each individual and their circumstances — minority group membership, age, socioeconomic status, beliefs and spirituality, etc. — can influence the grieving process. For many caregivers, the stresses, challenges, and distress accumulated throughout the trajectory significantly affect their bereavement and ability to adapt to the loss, making the transition all the more challenging (24, 121, 131, 132). Professionals must therefore take these factors into account when providing support during the post-caregiving period.

Reconfiguring the caregiver’s role

During active caregiving, the caregiver’s life is largely structured around the needs of the dying individual, from hygiene and nutrition to emotional support and keeping vigil at the bedside. When death occurs, the sudden, total disappearance of this structure can leave caregivers profoundly disoriented (2, 124, 130, 135).

This commitment can become so all-encompassing that it leaves little room for anything else, overshadowing the caregiver’s own desires, plans, or relationships (22).

Especially among women, the role can fuse entirely with personal identity (135). Death, therefore, marks a violent rupture with this sense of self. The post-caregiving period thus becomes a time of personal reorientation as caregivers slowly come to redefine who they are and find a new purpose (2, 135).

This identity transition can manifest as a loss of bearings, a sense of emptiness, difficulty finding meaning in daily life, questions about the future, and strained social and family relationships. The prevailing uncertainty of this phase can also generate anxiety, exacerbating the distress that accompanies the loss (2).

When all of this collides with the lingering emotional, psychological, physical, and financial impacts of caregiving, it severely compounds the trauma of bereavement. Ultimately, grief during the post-caregiving period extends far beyond mourning the loss of a loved one; it also entails the painful process of rebuilding oneself from scratch.

Final moments with the care recipient

For caregivers, the final days of a loved one’s life represent a critical threshold marked by escalating responsibilities and a direct, inescapable confrontation with mortality.

These final days or hours can impose significant additional demands on caregivers. As a loved one deteriorates and their needs become absolute, caregivers can be thrust into relentless hands-on care, providing comfort, maintaining basic hygiene, managing symptoms, and monitoring their overall condition — a reality felt most acutely in a home-care setting (118, 119). At the same time, they must frequently offer sustained emotional support, often while maintaining an unbroken vigil at the bedside (3, 85).

The final stretch is further complicated by the need to make complex medical decisions, particularly when the dying individual can no longer speak for themselves. Caregivers are thus compelled to navigate intricate, high-stakes choices at the very moment when they are under considerable emotional duress (3, 85).

As the illness gains its final ground, caregivers may grapple with a mix of worry, sadness, fear, frustration, and a crushing sense of powerlessness (2). Yet even in the shadow of impending loss, these emotions can coexist with a fierce desire to protect and cherish whatever precious time they have left together (120).

Caregiver recognition

There are two distinct aspects to caregiver recognition. If acknowledging their supportive role toward is essential, so too is having their own support needs recognized and addressed (23, 55, 56, 75). This dual recognition is particularly important at certain milestones, particularly when decisions need to be made about care and the end-of-life setting.

Caregiver recognition makes it possible to:

• Avoid having tensions arise between caregivers and clinicians (23, 55, 56).
• Ensure that caregivers obtain timely support as needed (11, 23).
• Avoid having caregivers taken for granted, thereby preventing them from being overwhelmed by the tasks and responsibilities of their role (23).
• Acknowledge caregivers’ vulnerability, rights, and evolving needs throughout the trajectory (75).
• Keep caregivers informed, and validate the extent to which they wish to be involved as experts on their loved one’s situation (23, 56).

Without recognition, caregivers may not receive the full measure of the support to which they are entitled, potentially affecting their health and well-being and leaving them feeling isolated (11, 23).

Caregiver self-identification

Self-identification — recognizing oneself as a caregiver — is a complex process, particularly in palliative and end-of-life situations. The tendency to see caregiving as a natural extension of family or spousal responsibilities, especially among women, normalizes the role and renders the associated involvement invisible (22, 54, 75).

The intense focus on the care recipient can also make it difficult for caregivers to acknowledge their own realities; as a result, they may minimize their own needs and the challenges they face. Isolation, taboos surrounding death, and a lack of social and institutional recognition can further obscure the role, including from caregivers themselves (11, 23, 75).

Communication and partnership with care teams

Establishing and maintaining a strong partnership between the care recipient, their caregivers, and health professionals is central to the end-of-life care pathway (4, 72). This collaborative mindset ensures, if they wish, that caregivers are recognized as true care partners who are fully involved at key milestones; it also empowers them to identify and respect their own limits (4, 23) while boosting their confidence and sense of security regarding the care their loved one receives (32, 56, 60, 72, 73).

However, several barriers can restrict caregiver involvement in discussions and decision-making. These include poor communication from medical staff; a feeling of being unheard; a lack of professional sensitivity toward the family’s suffering and concerns; insufficient clinical training; language barriers; and a lack of cultural awareness (23, 24, 25).

At critical turning points — diagnosis, a sharp decline in autonomy, or care transitions, for example — vague explanations from medical staff can trigger anger, distress and frustration. Given that most caregivers are deeply invested in understanding their loved one’s treatment, communication breakdowns can only breed mistrust of the care team (9, 23). Furthermore, caregivers who are sidelined or ignored report experiencing certain milestones like the death of their loved one and subsequent grief far more intensely, even as they grapple with feelings of guilt and a sense of missed opportunities. Lastly, those who are precluded from contributing their expertise during care planning or sharing their concerns are more likely to evaluate their loved one’s end-of-life care as deficient (69).

Conversely, proactive communication, timely updates and regular clinical contact serve to significantly stabilize and reassure caregivers (8, 60).

Changes in care setting and care team

At various junctures, a patient’s evolving condition may require a transfer to a more suitable setting — for example, their home, a hospital, a long-term care facility (CHSLD), or a palliative care hospice (5). Because end-of-life care spans a range of settings, moving between these environments can introduce significant complexity for patients and their families (74). Furthermore, relocation generally means adapting to an entirely new care team, which exacerbates the sense of instability. For caregivers, this can feel like starting again from scratch, constantly repeating their loved one’s medical history, preferences, and personal background to unfamiliar faces (17, 19).

Choice of care setting

While relocation is not always a matter of choice, it sometimes stems from a decision made by the person at the end of life and their family.

Where multiple options exist (e.g., intensive care units, hospices), then caregivers and their loved ones must evaluate which setting offers the care that best aligns with the patient’s dignity and values. Caregiver input in this context is paramount, particularly when the care recipient can no longer communicate preferences or provide informed consent.

However, caregivers rarely feel entirely free to choose, often finding themselves compelled by circumstances. They frequently feel constrained by their loved one’s explicit wishes, societal expectations, or a lack of viable alternatives — pressures that routinely breed guilt and internal conflict (80). Furthermore, admission to specialized units or hospices is strictly conditional on a short prognosis of just a few weeks or months (6, 74), which heavily restricts the availability of these resources.

Even when a patient qualifies for specialized care, they may be transferred to more standard long-term care (e.g., a CHSLD) if they outlive their initial clinical timeframe. Such late-stage relocations raise troubling human, ethical, and organizational dilemmas. For caregivers, watching a loved one uprooted and moved to a different facility, sometimes just days before death, can come as a severe shock and cause intense psychological distress (32).

Transitioning from home to a care setting

The transfer from home to a care setting generally occurs when the progression of the disease or condition creates care and support needs that can no longer be met at home, despite the caregiver’s best efforts (75).

This move is often perceived as a sign that death is imminent. For caregivers, it can be emotionally draining, evoking deep sadness and fear as they continually adjust their expectations in response to their loved one’s shifting health status (9, 75).

Caregiver resources and support

Access to support and resources is vital, particularly during emotionally demanding periods in the trajectory — times when caregivers must make complex and difficult decisions while managing the often-substantial responsibilities of providing care (9, 11, 81).

Support for caregivers can take many forms.

Support for the care recipient

One of the needs most clearly expressed by caregivers is help with supporting their loved one, especially when care is provided at home.

Resources such as assistance with dressing and meals, home modifications, and other practical supports can reduce the burden of care and help safeguard caregiver health (11). However, access to these services remains challenging, due to long wait times, inflexible schedules, and prohibitive financial costs — particularly when services are private (4, 82).

Psychological and emotional support

The profound upheavals and emotional intensity of palliative and end-of-life caregiving often leave caregivers with a sense of deep sadness and loneliness, sometimes coupled with a marked decline in their own physical and mental health (9, 11, 22, 83, 84). Professionals must therefore monitor caregiver health to deliver timely psychosocial interventions and resources, thereby preventing acute distress (81). Early outreach is vital to breaking through isolation, strengthening a caregiver’s ability to cope, and helping them process complex, painful emotions (81).

Family, friends and community

Beyond formal support, family members, friends, and the broader social circle play a critical role in sustaining caregivers (85). Support from these networks can give caregivers some much-needed respite, allowing them to step back from their responsibilities, take some time for themselves, and rest (11, 24, 86).

As well as providing help with daily tasks, family and friends can be a source of comfort. Simply being present and willing to listen can drastically alleviate the loneliness that is all too common in caregiving (22).

Peers and support groups

Peer support — which can come in many forms, from support groups and peer-assistance programs to more informal exchanges — allows caregivers to share their experiences with others who have faced similar circumstances (11, 73, 87, 185, 186). In these settings, complex emotions can be voiced more openly, including feelings that may be difficult to acknowledge to family and friends, such as exhaustion, anger, ambivalence, or even the wish for the care recipient’s suffering to end sooner. By helping to normalize these experiences, peer support can vastly reduce feelings of isolation, offering a safe space where caregivers can speak freely without fear of being judged (75, 185).

In professionally facilitated peer-support groups, facilitators do more than just guide the conversation. They also offer practical, personalized help with the concerns and challenges caregivers bring to the group, from navigating health and social services to identifying interventions and approaches that may be helpful (11, 87).

Information and training

A range of online resources and programs can help palliative and end-of-life caregivers build the knowledge, skills, and confidence they need to carry out their role (6). These resources are offered by organizations, provincial and federal government bodies, and community groups.

Training, coaching, and psychoeducational programs can also help caregivers prepare for and navigate the challenges of their role, while easing or preventing some of its demands (9, 11, 81). Such programs can deepen caregivers’ understanding of their loved one’s diagnosis and prognosis, helping them prepare emotionally for the loss to come (60).

Respite

Respite care offers caregivers a temporary break by entrusting their loved one’s care to a designated service. Respite options can take several forms (186):

• At-home respite: A professional or care worker comes to the home to provide care, giving the caregiver time to step away or rest, confident that their loved one is in good hands.
• Out-of-home respite: The care recipient spends a set period at a specialized facility, where they receive comprehensive care, often around the clock.
• Day programs: Though generally only available on weekdays, day centres (also known as “drop-in” centres) offer regular, short-term periods of respite, typically in a group setting.

In palliative and end-of-life context, respite can support caregiver well-being, strengthen their ability to cope with challenges, reduce the stresses of day-to-day caregiving, and help safeguard their quality of life. Yet despite its clear importance, access to respite remains uneven. Availability varies across regions, while the services are often of limited duration or frequency, falling far short of the needs of caregivers engaged in a prolonged care trajectory (186).

Balancing caregiving with work

Balancing work with caregiving presents a significant hurdle, particularly during the palliative or end-of-life phase. The heavy emotional and cognitive toll of caregiving can mean having to reduce working hours, take frequent leaves of absence, or put career advancement on hold — choices that routinely trigger financial hardship (15, 152). When employers fail to understand or accommodate these pressures, the lack of support may further intensify caregiver stress and exhaustion (9).

By contrast, workplaces that recognize these challenges and offer flexibility go a long way toward alleviating the tension between employment and care.

Financial assistance

Financial assistance can ease the economic strain of caregiving, particularly when caregivers need to reduce their working hours or take time off work. In Canada, the Employment Insurance compassionate care benefit provides temporary income support to eligible caregivers who need to provide care or support to someone with a serious medical condition and a significant risk of death within 26 weeks (six months). However, complex eligibility requirements, burdensome application procedures, and limited awareness of the available programs can make these benefits difficult to access, leaving many eligible caregivers struggling (143). Moreover, even when caregivers do receive the benefit, payments will cease at the end of the week in which the care recipient dies, potentially leaving them without financial support at a particularly vulnerable time (82, 186).