Current advance care planning practice in the Australian community: an online survey of home care package case managers and service managers

This is the first published national survey to examine current ACP practice among Australian HCP case managers and service managers. This survey showed that the uptake of ACP in HCP settings is low, with case managers reporting they are under supported to undertake ACP discussions with clients and lack experience and training with ACP. These results are similar to published international research [15,17,19,22].

The participating HCP services were representative of Australian HCP services, and the gender and professional characteristics of our HCP case manager respondents were similar to the case manager population in the largest state of Australia in New South Wales [23], where the majority are female and from a nursing, allied health or aged/disability care background.

Consistent with international literature examining the state of ACP within HCPs [15-18], our survey revealed lack of systems and support to complete ACP, and low uptake with absence of a normative approach. For example, international studies show the majority of case managers have not received any ACP training within their organisation and, in turn, they report limited ACP knowledge and skills [15,17,19]. We also found that the majority of case managers had not completed any ACP training (52%) and that the majority of services lacked ACP policies or guidelines (66%) and did not include ACP in the case manager job description (65%). Furthermore, the majority of case managers were less than confident with their knowledge and skill in relation to aspects crucial to ACP implementation (such as knowledge of state laws and documenting patient wishes in an ACD).

A recent North American survey showed that case managers do not routinely initiate ACP with clients, despite the majority reporting past experience with ACP, holding the belief that most clients needed ACP and having high comfort levels in discussing the issues [22]. Similarly in our study, although 70% of case managers reported having had 1–12 discussions in the past 12 months, only 20% of those discussions progressed to documentation of treatment preferences. This was despite the majority of case managers (75%) believing ACP was valuable and worthwhile for clients and that ACP was part of their role (55%). Only 15% believed ACP was done well within their service.

The findings in this survey are consistent with the state of ACP within home care service providers [15-18] and with research across many other healthcare settings including where elderly patients with chronic disease do not have access to best-practice ACP [24], such as RACFs [20], general practice [25,26], and in acute and outpatient settings [13,27].

With the prevalence of HCPs increasing [10], coupled with the increased attention to conduct ACP outside of acute and RACF settings, there is a strong impetus to provide ACP in HCPs. Past evaluations of whole-systems–ACP-interventions have mostly occurred in the acute setting [4] or in RACFs [28,29], however no such interventions have been examined in the community setting, where clients are exposed to a more fragmented health system, with many health professionals or services [23]. Internationally, case managers have been shown to view their role as not to complete ACP documents, but to provide information and encourage consumers to talk with family and clinicians [19].

Although 70% of case managers in this study had initiated 1 or more ACP discussions in the last 12 months, only 20% resulted in documentation. What is the best way to increase the effectiveness? The two alternatives are to: 1. train the case managers to facilitate ACP, including completion of documents, or 2. to provide information and resources to guide them to refer clients externally.

To date, no studies have explicitly measured whether a ‘referral only’ model of ACP is effective or sustainable, or whether case managers are equally as effective at initiating and documenting ACP discussions themselves, when provided with the appropriate training and resources. Nursing, allied health workers and aged/disability care workers make up half of the case manager workforce [23] and past research shows these professionals are well suited to complete ACP when given the appropriate training [4,12]. Furthermore a recent Australian study has shown that education is effective at improving doctors’ confidence in undertaking ACP discussions, and was well received [26].

We believe a ‘referral only’ model could fit with the current practice of case managers in this sample who discussed ACP with their clients, and where the most frequent outcomes of ACP discussions were to schedule meetings with significant others (47%) and to refer to the client’s GP (45%). This model is supported by the open-ended responses from case managers indicating that most clients are currently referred elsewhere to complete ACP. One challenge is to identify the ACP resources that are required to provide training on ACP to the case managers who are, in most cases in Australia [23] and our survey, from a non-nursing background. There is no doubt, however, that resources to improve ACP knowledge and skills are required if we expect case managers to complete these types of discussions in their current role.

There are several limitations to the generalisability of these findings to HCP services across Australia. Firstly, as the survey relied on self reporting by the respondents regarding their practices and experiences with ACP, this may have resulted in over or underestimating prevalence of practices and in socially desirable responding. To counter this potential bias we ensured that the survey was anonymous and that questions were specific to HCP services and phrased to optimise objectivity. A second limitation is that the response rate was relatively low; this is a recognised limitation of the online survey format [30]. In order to ensure anonymity, we did not link the survey responses to the services provided in the contact list. We were not, therefore, able to determine the characteristics of services that did not respond to the survey. Although this potential limitation is a deliberate trade-off to ensure anonymity, the characteristics of services and the profiles of case managers were similar to past surveys suggesting that the characteristics of the services and staff that did not respond to our survey would be similar to Australian HCP services [11,23].

Given that the prevalence of care services for the elderly generally [31] and for home care service providers specifically [10] is expected to increase, the next step for research in this area is, firstly, to identify different possible models for delivering effective ACP to recipients of HCP services and then to test them in a controlled way. Such ACP models should aim to overcome barriers and facilitate ACP at the case manager, client and caregiver and system levels. In accordance with the facilitators and barriers identified in this study we propose that the ‘referral only’ model and ‘case manager facilitator’ model should be further developed and tested in a Randomised Controlled Trial. For example, this study identifies that case managers believe they have a role in ACP and that it is worthwhile for their clients; however, they do not currently have the systems and support at the organisational level to facilitate ACP discussions. It is currently unclear which model would improve the uptake of ACP among HCP clients.

Furthermore, to best evaluate future ACP interventions we recommend studies measure outcomes that relate to the known benefits of ACP generally and also the foreseeable benefits of ACP for HCP clients specifically. Such outcome measures should include: the likelihood that doctors and family members know and comply with the patients’ wishes [3-6] and patient and family satisfaction with care, as well as reduced stress, anxiety and depression in surviving relatives [4-6,9]. Therefore, we will not only be able to determine whether the proposed model increases the uptake of ACP among HCP clients, but also whether it improves end-of-life outcomes for HCP clients, including whether their wishes are known and respected by the family and doctors.