About 36 000 people die in Victoria each year and this figure is projected to double in the next 25 years. Of those people, about half will die following a period of chronic illness such as heart disease, cancer, stroke or neurological illness—it is these people who will most benefit from palliative care. Palliative care aims to improve the quality of life of people with terminal illnesses by managing pain and distressing symptoms, and assisting patients to start making choices about how they want to be cared for as they die.
Victoria upholds the World Health Organisation's definition of palliative care—that it intends neither to hasten nor postpone death. Palliative care is delivered through a range of community, inpatient and consultancy services. Coordinating care for patients as they transition through these services requires systems that are integrated and staff that are skilled in communication and patient-centred care.
Palliative care services are largely funded by the Department of Health & Human Services (DHHS) and are administered by a range of public, private and non‑government providers. The majority of palliative care services are provided to people in community settings—home or home-like settings—by non-government providers.
With the population ageing and the need for palliative care on the rise, health services and community palliative care organisations face increasing pressure to manage the often complex needs of patients, their carers and families. There is also a shift in preference for palliative care to be provided in the home.
DHHS has an important role to guide and prepare the sector for these coming challenges. Its Strengthening palliative care: Policy and strategic directions 2011–2015 (Strategic Directions) identified seven strategic directions and 23 associated priorities that aim to provide a comprehensive and well-coordinated palliative care service to Victorians.
This audit assessed whether Victorians with a terminal illness have access to high‑quality palliative care that is timely, coordinated and responsive to their needs and wishes. The audit reviewed DHHS' Strategic Directions and guidance and assessed care in four public palliative care services:
- Two were inpatient‑only services.
- One had an inpatient service and a non-government community-based service.
- One had public inpatient and community-based services.
This audit was commenced under the Department of Health. On 1 January 2015, machinery-of-government changes took effect and the responsibilities of the former Department of Health transferred to DHHS.
While we consulted non-government community palliative care services as part of this audit, and they willingly contributed their time to broaden our understanding of the sector, the provisions of the Audit Act 1994 limited the extent to which we could assess non‑government community palliative care.
Victoria is a leader in palliative care provision in Australia and DHHS has set a clear and ambitious agenda for the palliative care sector. Palliative care is delivered by dedicated staff who coordinate across health services to make caring for people with a terminal illness as seamless and responsive as possible. However, as a relatively new area of health provision there is still considerable room for improvement.
DHHS first developed a palliative care policy in 2004 and further clarified the priorities in 2011 in its Strategic Directions. However, progress in some areas has been slow and problems with its performance monitoring framework make it difficult for DHHS to meaningfully track and report on how effectively its Strategic Directions have been implemented.
As palliative care takes on greater importance and is more widely understood and valued, demands on health services and community palliative care organisations are escalating. The community sector and inpatient hospital services are having to become more agile and coordinated to accommodate people's wishes, particularly where their final wish is to die comfortably at home.
Patients should be supported to die in their place of choice, be that in hospital or in their home. The provision of palliative care services at home is more cost-effective than in hospital. However, some metropolitan community palliative care services are struggling to cope with increasing demand. This means that some patients are not able to access services in their home and this, combined with increasing stress on carers at the end of life, can result in people spending their last days in their less preferred and more expensive hospital setting.
Health services are developing better systems to identify and manage palliative care patients including making wider use of advance care plans (ACP)—a patient's documented end-of-life preferences. However, the pace of change across health services is difficult to track. Audited health services made some pleasing but variable progress in the past 12 months. As ACPs are one of the central pillars of effective palliative care, more needs to be done to promote and embed them across the health system.
There is also more that could be done for carers and families. While there have been improvements in areas such as after-hours support for carers and families, further work is needed to ensure carers and families can access support at critical times. In particular, respite provision and access to psychosocial support remain major priorities.
DHHS has a major role to play in guiding the sector through this transitional period. It is imperative that it provides sufficient and appropriate funding to health services and community palliative care organisations. DHHS should set clear expectations for service delivery across the state, so that the palliative care sector can build on its achievements and respond to future challenges with a flexible and efficient palliative care system.
Policy framework and performance monitoring
DHHS' Strategic Directions is the product of in-depth consultation and provides health services with a sound policy and implementation strategy. DHHS' initial consultation on a successor strategy reveals that many in the sector are ready to aim higher and increasingly focus on patient-centred outcomes.
The Strategic Directions helped set the palliative care sector on an ambitious trajectory and has made some notable achievements, including:
- expanded consultation services for regional Victoria
- better access to after-hours support
- additional funding to build and upskill the workforce.
However, some goals will not be met because they were designed without due regard for the complexity and time needed to affect real change.
DHHS' current monitoring framework is overly complex and not fit for purpose. Some activities cannot be tracked because reporting mechanisms are not adequately developed to measure progress. It contains 314 key performance indicators yet fails to give a clear indication of the impact of activities.
This limits DHHS' ability to provide assurance that the sector is on track and that its strategy has been fully implemented. It also means that health services cannot understand how they perform at a system level. DHHS has committed to streamline its future monitoring framework and further develop existing reporting systems.
As well as fixing its monitoring framework, DHHS needs to improve its communication with health services and community palliative care providers about its reporting requirements. This would help them to understand how their information is used and have a better sense of their comparative achievements and weaknesses. This would enable DHHS to drive change at both the system‑wide and local level.
Support for carers
Audited health services consistently reported that carers' access to respite is inadequate. Some services are concerned that carers, who are likely to have significant needs after the death of their loved ones, are not adequately assessed or screened and therefore may not be linked to counselling and bereavement services.
There is scope for health services to make better use of DHHS' Bereavement support standards for specialist palliative care services to screen individuals at risk of complicated grief and provide appropriate bereavement support.
Families and carers of palliative patients shoulder enormous responsibilities and psychological stress, particularly as more people elect to die at home. For some families there are also financial pressures associated with withdrawing from the workforce for an unknown length of time to support their loved one.
DHHS needs to work closely with carers and the palliative care sector to provide better support options for carers. In addition, DHHS also needs to further research the effectiveness of bereavement services so that it is extended to those who need it.
Awareness of palliative care and advance care planning
DHHS has a number of initiatives aimed at increasing awareness of palliative care in culturally diverse communities. Progress is slow but on the right path—DHHS needs to continue to invest in making palliative care accessible and inclusive for all.
ACPs enable people who are dying to communicate their preferences and to have the choices they make about their care respected and carried out. Research shows that families and carers of people who have ACPs suffer less anxiety and grief. Reporting on ACP implementation is poor, but available data shows that only half of the patients being supported by community palliative care providers have ACPs in place. DHHS needs to look at ways to improve reporting so that it can better understand if inpatient services are using and promoting this vital tool.
Coordination and referrals
Coordinating patient care across palliative care settings is hindered by lack of access to integrated patient management systems—an issue that affects a range of health programs beyond palliative care. Some services would also benefit from greater investment in systems to manage internal electronic files.
Audited palliative care inpatient services have well-documented admission and referral systems and most meet the national benchmark for timely admission. However, routine audits would provide greater assurance that admission and referral processes are timely and appropriate.
Demand for services
DHHS promotes the right for people to choose where they wish to die. However, the resource-constrained community palliative care sector in metropolitan Melbourne is already struggling to keep up with demand. Audited health services in metropolitan areas are concerned that their patients are not always able to access palliative care at home in a timely way. For patients who have limited or no access to a carer this is a particularly daunting prospect.
There is a risk that patients discharged home will have to wait to access care in the home. DHHS needs to plan for growth and guide the sector to meet current and growing demand. It has allocated funding to the Centre for Palliative Care to develop a triage tool intended to ensure that patients with the most urgent needs are able to access palliative care in a timely way. Smaller, regionally‑based services need a clearer understanding of how to deliver or facilitate access to a range of allied health and psychosocial services so that their communities are not disadvantaged.
DHHS is developing a tool to understand gaps in services and plans to use it to assist with forecasting and future service planning. To complement this work there should be a statewide approach that encourages each region to work together to ensure all terminally ill people can access services. This tool needs to assist the sector to meet rising demand for services.
That the Department of Health & Human Services:
- reviews service provision as a priority to understand gaps in the system, better forecast demand and inform future service planning
- develops a robust policy evaluation method to monitor the implementation and outcomes of its new end-of-life care framework
- closely monitors health services' reporting on palliative care and follows up with health services when non‑compliance is identified so that all required reporting is completed and can be analysed and communicated back to services.
That health services:
- conduct regular audits of patient files to understand if referrals and admissions to palliative care were managed in a timely and appropriate manner
- prioritise integrating patient data systems and improve information sharing options for communicating with community palliative care services
- prioritise the implementation of advance care planning and comply with the Department of Health & Human Services' data collection and reporting requirements.
That the Department of Health & Human Services and health services work together to:
- understand barriers to accessing care, understand and respond to unmet demand, and engage communities who do not traditionally access palliative care
- provide patients and carers with more support to understand what services are available and how to access them when they need them.
That the Department of Health & Human Services:
- conducts a systematic review of respite and carer support provision
- develops clear expectations for health services to appropriately support carers including providing practical information on patient care and advice or referral as appropriate for emotional and bereavement needs
- reviews system-wide palliative care performance measures to improve how hospitals and palliative care services document and deliver patient- and carer-focused services
- reviews and improves the after-hours model for community palliative care services across Victoria.
Submissions and comments received
We have professionally engaged with the Department of Health & Human Services, St Vincent's Hospital Melbourne (including Caritas Christi Hospice), Northern Health, Mercy Health (Werribee Campus) and Central Gippsland Health Service throughout the course of the audit. In accordance with section 16(3) of the Audit Act 1994 we provided a copy of this report, or relevant extracts to those agencies and requested their submissions or comments.
We have considered those views in reaching our audit conclusions and have represented them to the extent relevant and warranted. Their full section 16(3) submissions and comments are included in Appendix A.