Background
Population ageing is expected to have widespread global implications for healthcare delivery and expenditure. In 2013, 841 million of the world’s population was aged over 60 years. It is projected that this figure will increase exponentially to two billion by 2050 [
1]. In Australia, the proportion of adults aged over 65 has risen by approximately 30 % in the last decade. Ageing and health pressures are projected to result in a 24 % increase in government expenditure for health by 2055 [
2]. This upward trend is projected across a number of other industrialised countries [
3].
Hospitalisations have been identified as a prime contributor to healthcare expenditure, with older adults often identified as high hospital users [
4,
5]. Proponents of the compression of morbidity hypothesis [
6,
7] have focused on the disproportionate use of healthcare services towards the end of life, arguing that increased hospital use is associated with proximity to death rather than chronological age [
8]. Menec and colleagues [
9] found that 79 % of rural Canadian decedents were admitted to hospital at least once within the 6 months prior to death and around 60 % died while in hospital. Menec et al. [
10] also found that 37 % of hospital use was concentrated into the last month prior to death, while an Australian study found a marked increase in admissions in the last 108 days for cancer-related deaths and 83 days for non-cancer related deaths [
11].
Despite the apparent high use of hospitals at the end of life, examination of hospitalisation trajectories and reasons for hospitalisation using longitudinal population representative data across a number of causes of death is required. A recent retrospective chart study involving Dutch out-of-hours general practitioners (GPs) found that palliative care patients (identified by the terms such as palliative, terminal, and cancer) were most often hospitalised for the control of digestive, endocrine, metabolic and nutritional and respiratory symptoms [
12]. Hospital admission was however dependent upon a number of factors including disease type, with cancer and cardiovascular cases more likely to be hospitalised. A follow-up GP-focused study comparing overnight hospitalisations in the 3 months prior to death for cancer and non-cancer patients found that while 71 different reasons were reported for the last hospitalisation, these differed according to death trajectory [
13]. Cancer patients were most often admitted for the control of digestive symptoms and pain, while non-cancer patients were admitted for respiratory symptom control and cardiovascular complaints. Cancer patients were significantly more likely to have a shorter stay in hospital (<3 days) at their last admission and were less likely to die in hospital. Meanwhile, non-cancer patients were more likely to have multimorbidity and curative treatment as the goal prior to their last hospitalisation.
Previous cross-sectional and short-term follow-up studies have demonstrated that a number of patient-specific factors impact on the end of life care for older adults. In studies from the United States and Europe, age has been found to be associated with number of bed days and treatment decisions [
10,
14]. Previous research has also demonstrated that functional capacity is a powerful predictor of high morbidity and mortality, particularly among hospitalised older adults [
15,
16] and has been associated with end of life expenditure [
17]. Kelley et al. [
18] found that declines in functional capacity and increasing activities of daily living dependency were associated with increased number of bed days in the last 6 months of life. Lunney et al. [
19] on the other hand found that functional decline fluctuates in the last year of life and is highly dependent of the type of disease trajectory, with marked differences noted for those with cancer, organ failure and frailty-related trajectories. When focused on death in hospital, increased associations have been found for living alone, presence of certain chronic diseases, ethnicity, rural residence, and fewer social contacts [
9,
20,
21].
Improving end of life care is a global public health priority [
22]. Understanding complex end of life care needs is required for future health care planning as the global population ages. However, previous research has largely focused on palliative care samples or specific community sub-populations, short observation periods and proxy recall. Understanding the reasons for hospitalisation and factors associated with hospitalisation requires examination of representative population level data across the spectrum of old age, including the very old (who are often excluded from research). This study aims to fill this gap by describing patterns of hospitalisation in the last year of life according to cause of death (COD) for older Australian women using data collected over a 12 year period. Reasons for hospitalisation and short-term predictors of hospital use are also explored.
Discussion
Although examination of hospital use among older adults has been a key focus due to its relevance to policy and future healthcare planning, hospitalisation during the end of life period has received less attention, with much of the focus on healthcare expenditure [
31,
32]. Using 12 years of nationally representative data we were able to demonstrate that for older women [
33], hospital use in the last year of life is complex and differs according to COD. Women who died of organ failure spent the longest time in hospital over the observation period, while women with cancer had the highest median LOS. Longer lengths of stay (medium and palliative levels) were found to be primarily driven by mode of separation and number of shorter-term admissions. The findings of this study have important implications for healthcare pathways at the end of life, including improving the access to, and integration of, palliative, in home, and hospice services for life-limiting conditions other than cancer.
In this study, the majority of women (85 %) were hospitalised at least once during the observation period. This figure is slightly lower than that found in a recent 11-month Australian state-based study [
11]. While not directly comparable, the findings are supported by other studies with similar healthcare systems who found that 60–79 % of older adults were admitted to hospital at least once in the last 6 months of life [
9,
34]. Here, we were also able to show the compression of hospital use over the last year of life for six specific causes of death. Women who died of cancer had a median LOS of 23 days, with half admitted to hospital at least once within 5–12 months prior to death. Women who died of dementia/Alzheimer’s disease had a median LOS of 10 days and were admitted to hospital much closer to death. Although previous research has examined LOS of decedents over a 6 month period [
18] or dichotomized diagnostic groups as ‘cancer vs non-cancer’ [
11], the finding from our study is novel with LOS shown to be highly dependent on COD.
Glaser and colleagues first developed the concept of differing trajectories of dying, based on length and slope of functional decline [
35]. Lunney et al. [
19] analyzed these end of life trajectories for people with cancer, organ failure (congestive heart failure or chronic lung disease), and probable dementia (i.e. frailty) as well as those experiencing sudden death. Our findings, (extending this research in terms of hospital use and COD), are consistent with Lunney et al.’s regarding the trajectory for dementia. For this group of women, number of hospitalisations slowly increased across time and cumulative median LOS increased with proximity to death. Among women dying of cancer (when focused on hospital use), our findings contrast with the pattern of functional decline described by Lunney and colleagues [
19], where these decedents maintain high levels of function until the last few months. Our data show that hospital use follows a more extended pattern over the final 12 months of life with a majority of women admitted 6–12 months prior to death, although we did see a large increase in admissions in the last 2 months. Our findings mirror that of Lunney and colleagues regarding organ failure, with hospital admissions extended over the 12 months and the primary reason for admission being chronic obstructive airway disorders. Our findings also show that in terms of median cumulative LOS, women who died of diabetes had similar patterns of hospitalisation as those who died of organ failure (particularly within the last 3 months of life). In the last month prior to death, more than half of women who died of either diabetes or organ failure had multiple hospital admissions. This is unsurprising given that heart failure is often a complication of diabetes, particularly for women [
36]. For women who died of diabetes, approximately half of the reasons of admission in the last year were related to cardiovascular disease.
Moreover, while 7.0 % of women in this very old cohort died of diabetes, diabetes may become a more common COD in successive cohorts as its age-specific prevalence increases [
37]. Diabetes management is therefore a health care priority, with self-management a key component of diabetes control [
38,
39]. Best practice guidelines are primarily based on research involving adults aged ≤75 years [
40] and have a strong emphasis on patient capacities to engage in self-management practices [
41‐
43]. Yet, it is unknown how adults aged over 75 are able to self-manage diabetes in the community, particularly when they enter the final stages of life. Munshi et al. [
44] found that barriers to self-care in older adults with poorly controlled diabetes related to a reluctance to make appropriate changes in insulin doses between clinic visits or during illness. The impact of intercurrent illness on the management of diabetes is particularly important, with effects on glucose metabolism through dysregulation of the hypothalamic-pituitary-adrenal and sympathetic-adrenal-medullary axes [
45].
In our study, 17 % of women who died of diabetes had multiple hospital admissions within 6 months of death (and 40 % had multiple admissions within 2 months of death). It has been found that all-cause hospitalisation among adults with diabetes increased with insulin use, age, presence of chronic renal insufficiency, diagnosed hypoglycemia and a diabetes-related hospitalisation in the year prior [
46].
Integrated healthcare pathways across the disease course and individualised care plans may assist in reducing unnecessary (and potentially unwanted) hospitalisations at the end of life. General practitioners are at the coal face of healthcare provision in Australia and may play an important role in not only coordinating and monitoring of care but also assisting with advanced care planning. Abarashi et al. [
47] found that there was a particular need in primary care for integrated palliative care with optimal disease management for those with organ failure and that initiation of advanced care planning early in the chronic disease trajectory was imperative to enable patients to live as well as possible with progressive illness and die in line with their own preferences. Although further research is required among this age group, integrated community health care approaches have been shown to improve the care of those with diabetes (including a reduction in hospital admissions) and other chronic conditions [
48,
49], while hospital in the home schemes have been suggested as one strategy to effectively manage respiratory exacerbations through either supported discharge after hospital admission or admission avoidance [
50].
We also examined factors associated with a medium and palliative LOS (consistent with a LOS expected for palliative conditions whether or not the admissions were classified as palliative care). In contrast to De Korte-Verhoef et al. [
13], women who died of cancer were most likely to have a palliative level LOS compared to other causes of death. The number of other medium level lengths of stay were associated with a 27 % increased risk of experiencing a palliative LOS while women who died in hospital or a nursing home were up to four times more likely to be admitted to hospital for a palliative LOS. Although the greatest proportion related to non-cancer diagnoses, a recent Western Australia-based study found that almost two-thirds of patients were in hospital in their final day of life (65 % of which were women) [
11]. Interestingly, a small proportion of women did not have a hospitalisation at the end of life, with these women more likely to die of ‘other’ causes and have private health insurance. Whether this reflects issues surrounding access and equity to health services (including primary care) would require further exploration.
Taken together, the findings suggest that the Australian health system may have an inability to recognise and effectively manage end of life care [
51]. Alternatively, health professionals may make conscience decisions to admit patients to acute care for long periods due to lack of access to appropriate palliative care and hospice services in community settings. Both state and federal governments in Australia have made a commitment to providing coordinated and consistent delivery of palliative care through the National Palliative Care Strategy (although mostly focused on cancer) [
52]. The findings from this study indicate that improved access to, and knowledge of, palliative care services is required for older women who die of not only cancer but other life-limiting conditions. In our study, 49 % of women who died of organ failure and 55 % of women who died of cancer were admitted for a palliative LOS. It therefore begs the question: is the acute care setting the best place to administer end of life care for older women with these conditions? Can we do better to contribute to these women having a ‘good death’? The answers to these questions are extremely complex and require a shift in the collective consciousness about how we talk about death and dying and the importance of not interfering with the dying process with the instigation of futile treatments [
53].
Importantly, studies suggest that hospitalisation at the end of life is often perceived as undesirable and can be associated with poorer outcomes for the patient and family [
54‐
56]. It has been shown that up to 60 % of older adults die while in hospital [
57]. This is despite research suggesting that the majority of people express a wish to die at home [
58]. In our study, death in hospital ranged from 30 % (for dementia) to 59 % (for cancer and organ failure). A Swiss study found that age, female gender, multimorbidity and geographic location played a significant role in place of death for older patients [
34], while a Dutch study examining the last 3 months of life found that people who received informal home care were more likely to die in hospital compared to institutional care [
59]. It is argued that older adults who are in institutionalised care may have fewer transfers to hospital as they are already present in a ‘medicalised’ environment and therefore are having their needs met regarding treatment [
47,
60]. This notion is also supported in countries with differing healthcare structures, such as the United States [
21]. In our study however, 24 % of women with dementia experienced a medium level LOS and 35 % experienced a palliative LOS in their last year of life. Additionally, discharge to a nursing home was associated with a three-to-four fold increase in having an extended LOS.
It must be noted that although the majority of people express a wish to die at home, Gott et al. [
61] found that this perception changed as death approached. As such, while death at home may be perceived as optimal, in actuality this may not be achievable. With the concept of ‘home’ a malleable concept within the end of life context [
62], institutionalised forms of ‘home’ (i.e. hospice) may provide the best of both worlds. However, more research is required into the appropriateness and efficacy of such programs [
63].
This study has a number of strengths including the longitudinal nature of the data, with older women being followed over a 12 year period. We were also able to link nationally representative self-report data to a large administrative dataset (involving both public and private hospitals) and the NDI in order to describe patterns of hospitalisation according to a number of causes of death for a community sample of women aged in their 70s through to their 80s. The study however has some limitations. Firstly, we classified women according to their primary COD. Comorbidities are common among older adults and potentially impacts on health service use and death trajectory. It is also important to acknowledge that patterns of hospital use at the end of life may have changed over the course of the observation period, including structural changes within the health care system as well as changes to health care provision as a result of improved technologies and new medications. Additionally, the self-report measures were taken from the last completed survey prior to death and as such considerable variability in the timing of measures may exist. However, we adjusted for this variation in the analyses. Also, although we examined palliative levels of LOS, we were unable to determine the type of care the participants were receiving (i.e. palliative or active life sustaining treatment). We also did not have information on other factors such as patient care preferences that may have also impacted on LOS. Further, this study focused solely on women. A Finnish study found significant differences in patterns of hospitalisation for men compared to women, with men having short lengths of stay [
64]. Therefore, patterns of hospital use and predictors of hospital use in the last year of life may be markedly different for men.