At home until the end? A qualitative study of experiences of in-home aged care programs in the context of caring for older adults with a life-limiting illness

Abstract

Background:

A growing proportion of older adults are living longer and dying with life-limiting illnesses. While the majority express a preference for end-of-life care at home, there is often a disparity between this preference and settings in which care and death continue to occur. Alongside other determinants, the nature of available care at home at the end of life shapes the realisation of preferences. Yet there is limited understanding of the experience and effectiveness of programs of in-home aged care in supporting end-of-life care at home.

Objectives:

The study aimed to explore the experiences of informal carers of older adults with a life-limiting illness in the last year of life who received forms of in-home aged care.

Design and methods:

A qualitative design utilised semi-structured interviews to elicit experiences of current or former (bereaved) carers of an older adult (n = 14), who currently or previously received support through programs of Australian government-funded in-home aged care. Analysis of interview data employed reflexive thematic analysis.

Results:

Findings highlight features of in-home care that shape and constrain effective and equitable end-of-life care provision over the arc of experience, from the point of accessing this care. Themes pertained to the centrality of navigational support, the need for responsivity and flexibility to meet needs and preferences, the function of specific knowledge and skills and the importance of a relational orientation in facilitating continuity. Carer positionality, associated with individual capacity and resources, influenced the potential to mitigate gaps in care.

Conclusion:

Approaches that support system navigation and the tailoring of features of in-home aged care to meet complex end-of-life needs are indicated, alongside further attention to education and support of the in-home aged care workforce. Implications are timely and possess relevance across sectors of aged and health care seeking to enable end-of-life care for older adults at home.

Plain language summary

Understanding the experiences of carers of older adults with a life-limiting illness who receive in-home aged care

More older adults are living longer and developing life-limiting illnesses. Most say they would prefer to be cared for and die at home, yet this doesn’t always happen. The kind of care that is available plays a major role in whether this preference can be met. However, we still don’t know much about how well in-home aged care programs enable care at home at the end of life. The research team studied experiences of people who cared for older adults with a life-limiting illness at home during their final year of life, and received government-funded in-home aged care in Australia. Researchers used interviews to better understand in what ways aspects of in-home aged care helped and hindered care at home at the end of life. The study found certain features of care can enable or limit the potential to provide care at the end of life at home. From the time that people start using in-home care, they need help to understand and navigate the system. Care needs to be flexible and responsive to meet complex and changing needs and wishes. Regarding care providers, specific knowledge and skills in end-of-life care are important, and strong relationships help to ensure care is consistent. The ability of carers to manage gaps in care depends on their own context and situation, which includes their own resources and supports. This study identifies a need to tailor features of in-home aged care to meet complex and increasing needs at the end of life. Further specific training and support for the workforce providing this care will be vital. Findings are timely and relevant for sectors of aged and health care that aim to help older people remain at home at the end of life.

Introduction

Reflective of trends in other high-income countries, an increasing proportion of older Australians are living longer and dying with life-limiting illnesses.^1–3 For older adults, end of life is often associated with multi-comorbidities, frailty, cognitive decline ⁴ and burdensome transitions between settings of care, including home, residential care and hospital. ⁵ Globally, the burden of serious health-related suffering is predicted to increase most rapidly among older adults and people with dementia, ⁶ necessitating urgent attention to integrating end-of-life care across these settings. However, given care will be increasingly required beyond hospital or specialist palliative care settings, focused attention on home as a setting of end-of-life care for older adults is warranted.

Australian policy rhetoric places a high value on independence and favours older adults remaining at home for as long as possible.^7–9 Driving this emphasis is significant, unsustainable costs associated with residential and acute care. ¹⁰ Although most older adults broadly express a preference for end-of-life care and death at home,^11–14 this is not reflected in settings in which care and death occur. Australia had the second lowest proportion of home deaths among OECD countries in 2014, ¹⁵ and in 2021, around half of all deaths of older Australians occurred in hospital, with over a third in residential aged care. ¹⁶ In a recent nationwide study, while 80% of older Australians receiving end-of-life care at home expressed a preference to die at home, only 22% were able to do so. ¹⁷

Critical reflection on the social and structural determinants of end-of-life care at home is essential. While achieving care at home is often conceptualised as ‘success’,^18,19 it requires substantial input from informal carers ²⁰ and adequate financial and emotional resources. ²¹ Factors such as patient comfort, costs, perceived family burdens^22,23 or ‘non-traditional’ conceptualisations of home ²⁴ may drive alternate preferences and needs regarding place of care. Material environments also differ across the social gradient, ²⁵ with populations in areas of higher deprivation less likely to die at home. ²⁶ While in-home palliative care is associated with increased quality of life, ²⁷ reduced use of hospital-based care^28,29 and death at home where preferred^30,31; access to end-of-life care at home varies. Palliative care services are historically cancer-centric, with underutilisation and delayed referrals prevalent among other life-limiting illnesses.^27,32 The oldest old and those with non-cancer diagnoses such as dementia continue to encounter unequal access to hospice care, including specialist care in community. ³³

In this milieu, programs of in-home aged care also constitute a determinant of care and death at home for older adults with life-limiting illnesses. The average increase in demand for these programs in Australia is projected to double by 2042, ³⁴ meaning programs must be equipped for growing, complex needs. ³⁵ However, fragmented funding and delivery of essential components of end-of-life care, alongside conflict and obfuscation regarding cross-sectoral care coordination, drive varied approaches. ³⁶ Furthermore, there is no standard model for end-of-life or palliative home care in Australia, ³⁷ nor international standards for home care at the end of life. ³⁸

Contextualised understanding of the effectiveness of existing government-funded programs of in-home aged care at end of life is needed, yet research on lived experiences of these programs in relation to life-limiting illness is limited. Accordingly, this study focuses on the end-of-life experience of older Australians receiving support from two existing, federally-funded programs of in-home aged care at the time of this research: the Commonwealth Home Support Program (CHSP) and the Home Care Packages Program (HCPP). These programs support care at home for eligible older Australians (over 65 years, or over 50 years for Aboriginal and Torres Strait Islander people). Eligibility for these programs is determined through an aged care assessment, which older adults can obtain through ‘My Aged Care’ (My Aged Care is a free government service (online and telephone) and the starting point to access government-funded aged care services in Australia. The My Aged Care website provides information for older adults, their families and carers. Older Australians can register to arrange assessment and access to forms of in-home care and residential care). The CHSP delivers a higher volume of lower cost, entry-level support services,^39,40 including domestic assistance, transport, meals, personal care, home maintenance and social support. ⁴¹ The HCPP delivers higher cost services for more complex needs to a smaller population, ⁴⁰ including continence management, care management and clinical care.^41,42 There are four levels of support, from basic (Level 1 Home Care Packages or HCPs) to high needs (Level 4 HCPs), with differentiated funding. To deliver services through the CHSP or HCPP, providers must comply with established regulatory processes and quality standards.

The aim of this study was to understand the experiences of current or former (bereaved) carers, caring for a family member with a life-limiting illness in the last year of life, who currently or previously received support through the CHSP or HCPP. Objectives included to explore the experience of this care, identify barriers and enablers of care and death at home, and identify improvements that might support end-of-life care at home. This research builds upon a related study, which synthesised HCPP managers’ perspectives regarding existing service models and end-of-life care at home. ⁴³

Methods

Qualitative research design was employed, using semi-structured interviews and reflexive thematic analysis. ⁴⁴ The elicitation of current and retrospective carer perspectives informed contextualised, co-creation of knowledge regarding lived experiences of in-home aged care. The study is presented with consideration of relevant principles within reporting guidelines for reflexive thematic analysis. ⁴⁵

Data generation

Participants were recruited through an online service called StepUp for Research (Funded by the Australian Government Department of Health and implemented by a dedicated team at The University of Sydney), ⁴⁶ which enables volunteers to self-register their interest in dementia- and/or ageing-related research. Volunteers who responded to a study advertisement were contacted to discuss participation. These individuals initially self-identified as eligible, based on the inclusion criteria provided in the advertisement, and none were excluded. To meet the inclusion criteria, carers were 18 years or over with adequate English proficiency for participation. Current carers were providing unpaid care for someone with a life-limiting illness in the community, who they identified to be within the last 12 months of life and receiving CHSP or HCPP support. Bereaved carers were at least 2 months post-bereavement and had provided unpaid care for someone who received support through one of these programs in their last year of life.

A semi-structured interview protocol (Supplemental Table 1) was developed, based on research objectives. Interviews were conducted online or via telephone by an experienced qualitative researcher (S.I.) with no prior relationship with participants. Prior to interviews, participants were given information about the research and their involvement, including the option to withdraw at any time. All participants provided informed verbal consent, and interviews were undertaken between July and October 2023, audio recorded, transcribed verbatim using a professional service, deidentified and entered into NVivo (Version 12) for analysis. In recognition of their contribution, participants were offered a voucher payment (AU$25). Personal information was managed confidentially according to the study protocol. Ethics approval was granted by the University of Technology Sydney Human Research Ethics Committee (ETH23-8184).

Data analysis

Aligned with a reflexive approach to thematic analysis, researchers actively constructed patterns of meaning in pursuing a coherent thematic conceptualisation. ⁴⁴ Interpretation occurred at the intersection of the dataset, the skills and positioning of researchers, and underlying theoretical assumptions.^47,48 A constructionist lens underpinned analysis, with a primarily inductive orientation to data that utilised semantic and latent coding to explore explicit and underlying meanings. ⁴⁴ Authors approached analysis collaboratively, possessing experience in health and social research, different disciplinary orientations (nursing, social work), and lived experience of caring. These positionalities suggest researchers held both ‘insider’ and ‘outsider’ locations. ⁴⁴ Ongoing discussion facilitated critical engagement with the influence of researcher positionalities upon analysis, supporting richer interpretation of data.^47,48

Initially, two authors (K.B., O.R.W.) verified all transcripts against audio recordings, then independently reviewed two transcripts and inductively generated preliminary codes for team review. The two authors then generated codes across the entire dataset, meeting regularly together and with the team to explore coding. Informed by the concept of ‘information power’, the team determined that the number of interviewees was adequate, and that interview data offered sufficient insights to contribute substantially to understanding the research objectives. ⁴⁹ Considerations that guided this determination included the focused objectives, informed by prior research ⁴³ and the quality of interview dialogue, ⁴⁹ given the interviewer’s research experience. Candidate themes and sub-themes were generated and refined through iterative engagement with the dataset. Any differences in perspective were explored, to support enriched interpretation. Themes, sub-themes and relationships were mapped using ‘MindMeister’ software, alongside the development of narrative description.

Findings

Participants (n = 14) were current (n = 11) and bereaved (n = 3) carers of people who were receiving or had received support through the CHSP or HCPP. For two current carers, care recipients were living in residential care, meaning nine carers were currently caring at home. The primary condition of almost all care recipients was dementia (n = 12). Interviews were conducted online (Zoom/MS Teams, n = 11) or via telephone (n = 3), and lasted between 31 and 85 min (mean, 54.79 min). Participant characteristics are summarised in Table 1.

Table 1.

Participant characteristics.

Variable	Characteristics	Frequency (n = 14)
Gender	Female	10
	Male	4
Age	50–59	6
	60–69	1
	70–79	6
	90–99	1
Relationship of care recipient to participant	Partner	7
	Parent	7
Current employment status	Not in the workforce (retired)	6
	Not in the workforce (other – e.g. volunteering)	4
	In the workforce full-time	3
	In the workforce part-time	1
Primary identified condition of care recipient	Dementia	6
	Alzheimer’s disease	3
	Vascular dementia	2
	Vascular dementia and Alzheimer’s disease	1
	Other	2
Last type of packaged in-home aged care approved or received	CHSP	1
	HCP Level 2	3
	HCP Level 3	5
	HCP Level 4	4
	Unsure	1

CHSP: Commonwealth Home Support Program; HCP: Home Care Package.

Most care recipients (n = 9) were last approved for or receiving the two highest levels of packaged care. A range of services (Figure 1) were reportedly received, yet no carers reported receiving nursing services.

Figure 1.

Incidence of service types received through CHSP or HCPP funding.

CHSP: Commonwealth Home Support Program; HCPP: Home Care Packages Program.

Four overarching themes were generated in relation to supporting and sustaining care at home in the context of life-limiting illness (Table 2). Themes related to the trajectory of the experience of packaged care, including entry to the aged care system, package delivery and as needs increased. Concurrently, the positioning of carers shaped experiences of care.

Table 2.

Themes and sub-themes.

	Overarching themes and sub-themes
	Navigational support is central and essential	Responsivity and flexibility are essential to meeting needs and preferences	Needs are complex and require specific knowledge and skills	Relational orientation supports connection and continuity
Critical dimensions over trajectory of receiving packaged care
Accessing and commencing package	• Lack of clarity of entry and progression processes • Lack of clear and specific information and communication	• Delays in assessment and access	• Dementia-informed and carer-inclusive initial assessment
Package delivery (workers, services, providers/processes)	• Lack of transparency of funding, fees and charges • Valued facilitation of ongoing navigational work	• Inefficient and untailored patterns of service delivery	• Dementia- and discipline-specific knowledge and skills of care workers • Dementia-informed coordination by providers	• Approach of care workers underpinned by trust and connection • Unreliability and inconsistency of care workers undermine connection and familiarity • Forms of respite facilitate relational well-being
Changing/increasing needs	• Needed navigational support in relation to transitioning to residential care	• Degree of flexibility of package features to support changing needs • Delays in reassessment create gaps and drive transitions between care settings	• Facilitation of discussions about end-of-life planning and care • A palliative approach that facilitates end-of-life care according to needs and preferences
Carer positionality
Carer capacity and resources	• Cultural and economic capital supports system navigation	• Capacity to implement strategies for challenging systemic barriers to preferences and needs • Capacity to continue in paid employment	• Awareness of signs of increasing needs supports recognition of implications for care • Capacity for engagement in future-oriented planning supports attention to complex needs and implications for care	• Social capital (informal and formal) can support relational connection and information sharing

Navigational support is central and essential

Features of in-home aged care generated significant system navigation ‘work’, or forms of labour for carers. Navigational support was considered necessary to manage a package, including coordination and guidance regarding interactions with in-home care providers. For many, lacking clarity regarding access-related processes drove navigational support needs. Information online (via the ‘My Aged Care’ website) was often experienced as inadequate or opaque, and progress through assessment unclear. Related navigational work drove confusion and distress:

I am just so shocked. . . I tend to be quite dogged. If I think that I need to do something, or something needs to be done, I will just be really persistent and I’ll get it done at the end of the day. But I have found this process, the bureaucratic process of getting a package, to be absolutely excruciating. . . I’m just so shocked at how many people just don’t do it. They embark on the process of applying and they give up. . . Out of our [support] group. . . I think one other has got a package and the others they’ve either started to apply and given up, or they haven’t embarked on it in the first place, because they’ve just looked at the process and decided that it’s just too hard. (C6)

After approval, challenges in engaging service providers produced information saturation and fatigue, including difficulty identifying appropriate or local providers through the website search tool.

Issues associated with fees and billing perpetuated frustration and confusion. Incorrect charges in some instances necessitated carer advocacy. For some, invoices lacked explanation, or charges did not seem justifiable where carers perceived they were undertaking significant navigational work:

I would sometimes ring them when I got their statement and go, so I read your statement. It doesn’t make any sense. Can you explain it? . . . Then there were little line items like package administration. I’m like, well what’s that for? That’s our fee for administering the package. . . I found that particular fee quite gave me a little jolt. I’m like, well, I think I’m the one who’s administering the package. What have you guys done? (C11)

Ongoing aspects of package management generated burdensome coordination across multiple services (within and beyond aged care), amplifying navigational labour. Several carers valued providers proactively facilitating coordination:

This new person said, yeah, okay, leave it all to me. I will contact [Service] and make all the arrangements and work out how it’s going to be done. She did that in about 15 minutes, and got back to me and said, yeah, right, it’s all set up. All you have to do is phone [Service] and go along and have the talk to them . . . She sorted it, sorted out a problem . . . solved the problem I didn’t know how to solve by talking to [Service]. She understood the issues and then how the agreement was working, which I didn’t. (C2)

As needs increased, some participants described an unmet need for navigational support in relation to transitioning to residential care, which was a particularly distressing and practically challenging period.

Carer positionality shaped navigational support needs. Some carers leveraged forms of economic capital (e.g. access to savings, partial pension) to purchase legal and financial advice. Some carers drew upon forms of cultural capital, or acquired knowledge and resources,^50,51 including previous experiences of working in aged care, the disability sector and local government, as well as past caring experiences. However, this was not consistently sufficient to support system navigation:

[I]n 2021, I resigned from my job as director of nursing in an aged care facility [laughs]. Here I was thinking that would never happen to me, oh my God. I couldn’t work out why I couldn’t get through the aged care system . . . [I]f I couldn’t understand, what was happening for all these other poor people out in society? My doctor, he said, well [Name], if you can’t do it, I can’t do it, how’s everybody else surviving? (C4)

Responsivity and flexibility are essential to meeting needs and preferences

Responsivity and flexibility concerned the extent to which carers perceived features of packaged care reacted appropriately and efficiently to support needs and preferences. Experiences of delays in accessing care were common, with lengthy wait times for assessment and approval that were inappropriate given significant needs of some care recipients. One carer purchased private care while awaiting packaged care, and delays fuelled distress:

There’s so much money flying around. None of it’s going to where it needs to be, on the ground in the lounge rooms and kitchens of the people who need the support. What is going on? How do we bump up the ladder? She [at assessing organisation] said, I’ve heard your frustration for the last six, eight, nine months. I’ll give it to you straight. . . Let’s say there’s 100,000 packages available. . . and they’re all being used right now. One will become available when somebody dies, and then your Mum will move up a spot. . . I just collapsed. I just thought that was, oh my God. It’s like being on a transplant list. Yes, that was just terrible. (C10)

Particular features of service delivery were experienced as inefficient and inflexible. For instance, where service provision duplicated tasks carers were capable of, or where patterns of service provision were untailored and failed to support time for carers to manage other priorities. Service delivery was at times viewed as poor value, including where care was not informed by basic knowledge of the care recipient to meet fundamental needs.

As needs increased, flexibility in coordination and administration of packages were appreciated by carers. Many carers valued flexibility to accumulate funding, where packages were not fully utilised. Accumulated funds enabled equipment purchases, supported increasing needs, or were anticipated as valuable to support future needs. However, where existing care became inadequate due to increasing needs, delays in reassessment and accessing higher levels of care had evident consequences. In one situation, reassessment was abandoned as needs increased before this could be arranged. Another care recipient experienced a stroke while awaiting a Level 3 HCP, with approval coinciding with entry to permanent care. Two carers paid for private care while awaiting higher-level packages:

She was put initially on the [Level 3] care package and there was a 12 month wait for that. So, she went on the waiting list for three months. . . By the time that came through she was . . . reassessed again at Level 4. So, she was back on the waiting list for the Level 4 care package. . . In the meantime, we privately paid carers. (C7)

In contrast, two carers assumed that future reassessment for higher-level packages would be timely, and three were hopeful higher levels of care would assist to adequately support future needs at home. However, these assumptions were not mirrored in reported experiences where needs had already increased.

Some carers generated individual solutions to address unmet needs. Four carers provided examples of advocacy where needs were intensifying. With a preference to avoid residential care, one carer perceived her advocacy for expedited services for her father had significant impact: ‘I don’t even want to know what the quality of life for him would’ve been if I didn’t know that and I didn’t insist on that’ (C14). The need to continue in paid employment was also essential for some carers, although packaged care was experienced as not necessarily able to flexibly enable this need:

Now, if you work full-time . . .You’ve got two hours only where you get paid care, so you’ve got to work out the other seven hours with a. . . late stage dementia patient. It’s just impossible. . . you either give up your job completely and look after her full-time, which was not a fit for me, . . . My stress was coming from not being able to go to work with no one to care for my Mum. (C7)

Needs are complex and require specific knowledge and skills

Care recipients presented complex needs perceived to require particular knowledge and skills to support nuanced care at home. Carer stress was compounded where assessment was not experienced as dementia-informed. For example, where assessors without a sound understanding of dementia dismissed the carer’s perspective and acted on inaccurate commentary from care recipients, services were delayed.

Several carers emphasised the importance of care workers possessing dementia- and discipline-specific knowledge and skills. This included capacity to manage challenging behaviours compassionately, underpinned by in-depth knowledge of the care recipient; characterised as intricate work:

They need to be well trained in dementia. They need to be very patient, they need to be respectful. . . they need to know that they might need to write things down, they’re going to have to keep repeating things . . . they have to sort of somehow give the illusion of allowing the person to be independent but – maintaining oversight, and being vigilant about things going wrong, because things do go wrong, and they need to be conscientious about making sure that the person is safe, and that they feel safe. Then they also need to be skilled in mood management, as well. They’ve got to have the skills of a mental health nurse in many respects. . . . So yeah, it’s a high bar. (C6)

Some carers valued forms of disciplinary expertise (e.g. diversional therapy) in meeting dementia-related needs. Noted unmet needs included more intensive clinical and allied health support (e.g. occupational therapy). Carers also valued skilful provider coordination regarding complex dementia-related needs. Provider ability to facilitate continuity of care was considered highly important by several carers, although perceived to be undermined by staffing constraints. One carer noted the way in which a provider matched workers with the care recipient, given their understanding of dementia and this individual.

As needs increased, several carers experienced discussions informed by knowledge about end of life. However, these conversations were facilitated by residential care staff, and medical and nursing staff in hospitals. Discussions explored prioritising quality of life and symptom management, and appeared to support decision-making regarding end of life. While most care recipients had no contact with specialist palliative care services, three reported receiving palliative care, although not at home. Two carers described receiving palliative care in residential care prior to the death, and one carer described a brief admission to an inpatient palliative care unit prior to transfer to residential care. Palliative care within residential care was experienced as involving skilful communication and support. One carer reported that an ‘in-reach’ palliative care team (including nurse practitioners) enabled care guided by the advanced care directive, promoted General Practitioner (GP) linkage, mitigated transfer to hospital and facilitated confidence about care provision. The other carer indicated that palliative care for her mother in residential care ensured that her father (living in same facility) could be present at end of life, as per their wishes. Despite believing that this setting was appropriate, this carer expressed concerns that pain was not consistently managed in this setting.

Some carers were aware of signs that would indicate increasing needs in future, potentially making care at home unsustainable (e.g. incontinence, behavioural issues), and prompting reflection on the constraints of packaged care. Where a care recipient had transitioned to permanent care or hospital, four carers felt that complex needs could not possibly be supported through existing levels of packaged care. For example:

She’d agreed that she can’t stay at home any longer, even with all of this high level, Level 4, care people daily. There were people coming in the morning for medication, shower, housework, shopping and then somebody would return in the evening to make sure medication. We’d gone to that level, but she just wasn’t able to stay at home anymore. (C11)

Additionally, carer capacity to anticipate and plan for increasing needs varied, with potential consequences for meeting complex care at home. Some carers had engaged in legal, financial and practical planning (e.g. home modifications), while others highlighted associated challenges and fear:

Because it’s not only a progressive, degenerative trajectory that you’re on, but it also changes from day to day. . . . . I find the future frightening, and it’s very difficult when you’re setting up a household to know what’s appropriate, and how long that’s going to be appropriate down the track in terms of needing residential support as well. (C6)

Relational orientation supports connection and continuity

Relationally-oriented approaches to packaged care were characterised by trust and knowledge of the care recipient, which facilitated consistency, familiarity and routine; highlighted as vitally important by most carers. The quality of connection with care workers appeared to promote comfort and reassurance. Relationally-oriented workers anticipated needs, interacted empathically and sensitively mitigated issues through individualised engagement:

She had this – had the right way of treating her. Not talking down to her or being overly officious in anything. You know . . . more friendly. Come on, time to go and have a shower now. Come on, we’ll get your clothes off. She sort of more, I suppose – [care recipient] took more to that approach because it was more on a friendly tone or something she could relate to. (C8)

Unreliable or impersonal communication about care was viewed to undermine continuity of care, and inconsistently scheduled care workers eroded a sense of familiarity and trust, with one carer stating “If we want people to stay at home, we need consistency” (C4).

Respite, or services that facilitated ‘time out’ from caring tasks, were particularly valued. These services supported social interaction and well-being activities, family relationships and capacity to continue caring. For one carer, such services enabled meaningful presence in the “last stages” at home:

It gave me more time to be able to be with them rather than having to race around for them. To me, it gave me – like I didn’t have to go and do Mum’s shopping. I could just sit with them. . . . just checking their overall wellness, I suppose, to try and help them in the last stages of being able to live at home. (C9)

Five participants discussed barriers to accessing appropriate respite, including the scarcity of respite beds in residential care and the lack of available respite in times of crisis.

Carers drew upon forms of social capital that supported a sense of connection and potentially sustained care at home. For some, formal resources (e.g. GPs) facilitated needed referrals to geriatricians. Informal networks (e.g. family, friends) provided emotional and practical support (e.g. crisis assistance, informal respite), and along with carer support groups enabled information sharing about navigating the aged care system. However, several carers noted the limits of informal networks, which were not necessarily experienced as supportive, or consistently available.

Discussion

This research synthesised the experiences of receiving in-home aged care while caring for a family member in the last year of life. Ultimately, existing programs of in-home care at the time of this research were not perceived to be sufficiently navigable, responsive, nor underpinned by specific knowledge and skills to consistently support equitable care at home at the end of life. Several limitations require consideration. Findings must be contextualised, given experiences overwhelmingly related to care of someone with dementia. Levels of care under these programs varied, with implementation of program reforms pending at the time analysis was conducted. The determination that current recipients accessed programs within the last 12 months of life was also carer-estimated. Regardless, a strength of findings is the central positioning of carer voices in illuminating experiences of packaged care, generating novel considerations of import for the increasing number of older adults with non-malignant life-limiting illnesses within Australia and comparable contexts. Additionally, findings are timely given the unfolding Australian program reforms and pending evaluation, as well as the necessity of ongoing broader reflection on the effectiveness of programs of in-home care. Implications are explored below, and pertain to intersecting individual, care-related and organisational or systemic domains.

In this study, support to undertake system navigation, or the labour associated with coordinating and facilitating continuity of care,^52,53 was experienced as critical to enabling care at home. Findings reflect well-known barriers faced by older adults in navigating fragmented health, social and aged care systems in Australia^54,55 and elsewhere,^52,56 that drive structural burdens for carers.^52,57 While some carers leveraged personal knowledge, skills and resources, this was not consistently effective, and carers were not equally positioned. Known intersecting social locations related to cognitive ability, literacy, education and other resources impact capacity to make informed choices about care^58–60 and to navigate complex systems. Challenges of system navigation likely also intensify at end of life, given siloed systems of aged and health and palliative care. ⁵⁵ While some carers recommended resources to address informational needs to support system navigation (e.g. plain language updates regarding packages), an over-reliance on individualised approaches, which assume that all can enact sufficient agency, is problematic^61–63 and potentially disadvantages the most vulnerably positioned individuals. ⁶⁴ As inequities associated with systems of care are amplified in critical periods of the life course such as end of life, ⁶⁵ strategies to address ongoing systemic barriers to navigation are vital, given the need for enhanced coordination between services engaged in in-home and specialist palliative care. ⁶⁶ Future research should explore and evaluate initiatives to improve the navigability and integration of systems engaged in end-of-life care at home, such as designated roles for cross-sectoral care coordination.

Packaged care was not experienced by participants as sufficiently responsive or flexible to support care at home. Delays in accessing appropriate in-home aged care are well-documented, ⁵⁵ with wait times of 6–12 months for higher-level HCPs reported around the time of analysis. ⁶⁷ For older adults with high needs, delays present a significant obstacle to facilitating end-of-life care at home, given associations with increased likelihood of entry to permanent care,^68,69 death prior to receiving appropriate in-home care ⁵⁵ and reduced longevity even after services commence. ⁶⁹ Fragmented and poor-quality care is also known to negatively impact carer mental health. ⁷⁰ Findings reiterate that not all possess sufficient economic capital to mitigate gaps in care through purchasing private services. Furthermore, financial costs associated with end-of-life care are found to increase as life-limiting illnesses advance, associated with carer burden ⁷¹ and heightened for low-income groups. ⁷² Given findings resonate with existing recognition of the inadequacy of higher levels of in-home aged care to meet increasing and complex needs, ⁵⁵ there is a clear need to more specifically tailor in-home aged care to meet needs at the end of life. Indicated features include provisions to expedite access for high needs, eligibility criteria inclusive of diverse trajectories of life-limiting illnesses, ³ and adequate funding to support more intensive personal and clinical care often required at end of life. ⁴³

While care of someone with a life-limiting illness at home necessitates specific knowledge and skills, participants did not appear to consistently experience informed care, receipt of clinical nursing support was not reported, end-of-life discussions were limited, and the few individuals known to palliative care did not receive this care at home. Considering the benefits associated with embedding palliative care across settings, guidance for non-specialist providers at home promotes regular assessment and preparation for end of life.^{39,41,73–75} Yet historically, the provision of end-of-life care by in-home care workers has received limited research attention. ⁷⁶ While personal care workers represent the overwhelming majority of the Australian HCPP workforce, ⁷⁷ they often receive little formal training for their roles and are frequently employed instead of health professionals, such as nurses, ⁶⁰ contributing to late identification of the end-of-life phase. ⁴³ Despite recommendations regarding dementia and palliative care training ⁵⁵ and creation of relevant educational resources, ⁷⁸ a 2020 report suggested that only a quarter of Australian HCP providers (24%) delivered training in palliative care to nurses and personal care workers. ⁷⁷ It is recognised that care workers often have limited access to structured education and supports (e.g. clinical supervision), ³⁸ with pay and working conditions that do not consistently reflect the complexity of this work. ⁷⁹ Establishing mandatory requirements for end-of-life training for in-home care assessors, care workers and providers is congruent with recommendations of the Lancet Commission on the Value of Death. ⁸⁰ However, attention to persistent systemic barriers to engagement in education is also necessary to enhance workforce capacity, alongside further development of cross-sectoral relationships that facilitate consultancy and information exchange. Additionally, given that the provision of end-of-life care at home is associated with significant emotional labour,^81–83 high rates of turnover due to working conditions, ⁸⁴ and isolation that contributes to workers feeling under-supported and underprepared, ³⁸ investment in the well-being of this workforce is vital to supporting retention and enabling capacity for high-quality end-of-life care.

Consistent with other research on home-based support for older adults,^85,86 most participants highlighted predictability, consistency and trust in relationships with care workers as fundamentally important. High-quality care relationships may possess protective potential at end of life, with other findings from within health care settings suggesting carers relate a sense of security to competent, trustworthy and professional providers, ⁸⁷ and that greater therapeutic alliance is associated with positive physical and mental health outcomes for carers in bereavement. ⁸⁸ Recognising the very present risk of ‘transaction-based’ care inherent within competitive market-based models of in-home care, ⁸⁹ deliberate cultivation of approaches to relational care in-home is indicated, including carer-inclusive, holistic approaches to assessment and support. Furthermore, given that many carers will need to maintain paid employment, this should include attention to the availability of appropriate, dementia-informed respite.

Conclusion

Alongside formal interdisciplinary and informal support, in-home aged care is vital to enabling end-of-life care at home. This study illuminates ways in which features of packaged care may function to facilitate and constrain the care of older adults at home at the end of life, through contextualised interpretation of the lived experiences of Australian carers. In particular, findings point to the value of strategies that support system navigation for carers and highlight the critical need to better equip and support the workforce delivering in-home aged care at the end of life. However, without prompt attention to in-home aged care that is more specifically tailored, integrated and resourced to meet the often complex needs of older adults with varied life-limiting illnesses, it seems gaps and inequities in care will persist, meaning institutional settings will likely be the context in which many continue to receive end-of-life care, regardless of their preferences.