Introduction
The aged care context in Australia recognises consumer choice with regard to place of care and choice of care. There is an increasing economic evidence base around the effectiveness of palliative care practices but the evidence base is not comprehensive. There is also little evidence relating to the cost for alternative care and alternative therapies. The costs incurred by families and carers are also not well understood although there are indications that these are substantial.
Quality Statement
Overall, the quality of the reviews was good. The studies include several meta-analyses. The data was also supported with two good quality evaluations including one which undertook a primary economic analysis as part of its work. It is worth noting that many studies did not directly examine the economics associated with the provision of palliative care to older people or to those being cared for in aged care facilities.
Evidence Synthesis
Palliative care effectiveness
The review on effectiveness and cost-effectiveness of home palliative care services for adults with cancer and their caregivers showed clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. [1] Six studies (five RCTs and one CBA including 2047 patients and 1678 caregivers) compared the impact on the total care costs of receiving home palliative care as opposed to usual care, alongside an evaluation of clinical effectiveness. In terms of costs, all six studies bar one reported lower costs in the intervention groups with differences ranging from 18% to 35%. The authors noted that studies under-represented portions of the society that are expected to become more relevant to palliative care in the context of ageing populations, particularly people with no caregiver and patients who lived alone. They concluded that more work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. This echoed the work of other reviews which noted that evidence supported the benefits of hospice care although there were limited evaluations of inpatient hospice care and non-hospital related costs. [2,3] Pham & Krahn [4] completed a primary economic analysis based on Canadian data which modelled cost savings for in-home palliative care services. In-home palliative team care was found to be cost-effective and marginally increased the chance of the person dying at home. [4] Results as to the cost-effectiveness of inpatient palliative team care, patient care planning discussions, educational interventions for patients and carers and supportive interventions for informal carers were inconclusive due to limited available data. [4]
Similarly, a review of costs and resource use within clinical nurse specialist (CNS)-led interventions for people with palliative care needs found the evidence for clinically relevant outcomes and cost-effectiveness to be inconclusive. [5] It was also noted that the varied and poorly defined CNS role made study comparisons difficult. [5]
One review looking at social work provision within ageing found significant cost outcomes associated with some social work interventions in health, including care coordination and end-of-life/palliative care. [6]
Family costs
There are indications that there are financial and economic imposts with caring. There are direct costs related to the provision of care and indirect costs (reduction or loss of current and future earnings and retirement benefits). This may be affected by gender and cultural overlays. [7]
The economic burden faced by family caregivers of people at the end-of-life and the approaches to capturing these costs have been explored by Gardiner. [7,8] With respect to the costs borne by caregivers they noted that the review clearly demonstrates that caring for a family member at the end of life is financially costly. Financial costs can result in significant and multidimensional caregiver burden but that various factors may mediate the extent of financial burden. [8] Various approaches to capturing data on the financial costs of care-giving at the end of life have also been examined. No single tool dedicated to exploring such costs was identified. Most approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers. Fewer studies included objective measures of resource use. The authors concluded that more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. [7] Few studies published to date have measured informal caregiving or out-of-pocket costs; those that do suggest that, compared to usual care, hospice palliative care may have only limited impact on families’ cost. [9] The effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients is also unclear. One review suggests that specialist palliative care may modify the effect of socioeconomic status on place of death. [10]
Resource utilisation
Reviews of resource utilisation particularly with regard to hospital costs have shown increases in service use and costs as death approached; hospital services being the main cost driver. Palliative services appear to be relatively underutilised even when associated with lower expenditures. Reviews have also focused on assessing the costs of futile care. Harris and Murray’s review looked at the evidence for palliative interventions reducing health service costs without impacting on quality of care. [11] Again the evidence supported existing research that palliative care interventions generally reduce health service costs. [9,11] However, little evidence derived from randomised trial designs and small sample sizes and disparate outcome measures limited statistical assessments. Further research, including both observational studies and controlled trials, is needed that assesses the effect of palliative interventions earlier in chronic progressive illness and that incorporates standardised outcome measures to allowing meta-analysis. A UK review addressed the economic impact of avoidable admissions in palliative care and concluded that the evidence is limited. Although recent studies suggest that there are currently high levels of avoidable admissions, the feasibility of avoiding such admissions and the full economic consequences of such changes have not been clearly demonstrated. [12]
One review has examined the components of palliative care costs and characterised them within four broad domains: hospital care, community or home-based care, hospice care and informal care. The authors suggest that these costs can be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. [13] A further extension of these concepts has been a review looking at key factors/patient characteristics which could influence distributive preferences of the public. These included severity of illness, immediate need, age (and its relationship to lifetime health), health gain (amount and final outcome/health state), personal responsibility for illness, caregiving responsibilities, and number of patients who could benefit (rarity). Empirical studies typically examined the importance of these factors in isolation.
Advance care planning
Other studies have investigated the costs and potential savings associated with advance care planning. While ACP has been seen as strengthening patient autonomy and improving quality of care near the end of life, its effect on reducing net costs is unclear. Six studies found reductions in costs of care per patient, depending on the study period and the cost measurement however there was variability around the Advance Care Planning intervention, patient selection and cost measures. These may have explained some of the variations in findings. [14] Dixon et al. had not found any published cost-effectiveness studies. The studies reviewed looked at healthcare savings associated with reduced demand for hospital care. There is no evidence that advance care planning is likely to be more expensive. [15]
An economic modelling study of older people with end stage kidney disease in the Australian setting predicted that compared to usual care ACP was more likely to result in adherence to patient preferences but also increased average costs. [16] Hospital care following withdrawal from dialysis was the main driver of increased costs in the last 12 months of life. [16] However, this analysis did not consider costs beyond the health system and awaits model validation against real-world outcomes. [16]
Evidence Gaps
- There is little economic evidence that informs the palliative care practices for older people in residential aged care or on home care packages. The relationships between direct and indirect costs and care are unclear.
- There is little Australian data around the costs associated with palliative care and the informal costs borne by families.
- Much of the evidence relates to palliative care not in an aged care context. While this may have relevance to community based care of older people, the implications of costs associated with residential aged care are less understood. This may be particularly important within the Australian context where increasingly the length of time spent in residential aged care is diminishing but the costs structures associated with entry are becoming more complex.
- Little is known about the cost of planned care and how this compares to the cost of unplanned care. The role and cost benefit of a geriatric assessment in planning palliative care could be investigated. Future research could investigate the impact that advance care planning (ACP) may have in the choice of care and financial implications of care.
- Less is known about the economic impacts and situations of those who live alone or do not have families to support them.
- Very little is known about the cost implications of medically-responsible care and the cost burden of futile medical care.
Page updated 27 May 2021