Overview
Palliative care is provided to meet the needs of patients living with or dying from a life limiting illness and their families. There is a need for population based planning of palliative care service provision. It has been estimated that, in high-income countries, 69%–82% of those who die need palliative care. [1] A population health approach is about focusing the planning on the population (or sub populations) rather than individuals and addressing disparities between different groups through a priorities method. [2] These groups can be categorised according to socio-demographic characteristics such as vulnerable, cultural, Indigenous, paediatric, or diseases such as dementia, HIV/AIDS and cancer. Each group will have particular needs that should be considered in the planning of the service provision to achieve the same level of access and care for all those requiring palliative care.
Such a population approach to planning will inform the development of models of service delivery for palliative care. Palliative Care Australia (PCA) has produced updated Palliative Care Service Development Guidelines which replace two previous guidelines: Palliative Care Service Provision in Australia: A Planning Guide; and A Guide to Palliative Care Service Development: A Population-Based Approach. The aim of the new guidelines is to outline the range of palliative care services that should be available to people living with a life-limiting illness, their families and carers; and the workforce and system capabilities required to deliver an effective network of palliative care services. A model of service delivery in this context is about the framework for the delivery of care, referred to as a ‘model of care’ in the literature. A model of care broadly defines the way health services are delivered. [3] Having a clearly defined and articulated model of care will help to ensure that all health professionals are ‘viewing the same picture’; working toward a common set of goals and, most importantly, are able to evaluate performance on an agreed basis. [4] There are various models or components thereof for palliative care delivery that are found in the literature. [5] These models include care provided across the spectrum of health settings and involve the coordination of medical, nursing, allied health, bereavement and volunteer services from both generalist and specialist providers in primary care and hospitals.
Palliative care should be provided in the setting of the patient’s choice, wherever possible. Palliative Care Australia’s document Palliative Care Service Development Guidelines, describes service provision that occurs across two health settings:
- Community-based care
- Hospital-based care.
Community settings include the patient's own home, residential aged care facilities, correctional facilities, group homes and specialist housing for people with disability, specialist accommodation for people experiencing severe mental illness, and other locations such as mobile homes, or locations as appropriate for people who are experiencing homelessness. Provision of palliative care in hospitals may occur via: inpatient care in ‘designated’ palliative care beds, inpatient care in other beds, outpatient (ambulatory) services, or Intensive care units and emergency departments.
Studies show that 50-90% of those asked about their preferences state a wish to die at home rather than an institution. [6] This leads to home deaths often being suggested as an outcome of high-quality palliative care. [7] However, there are several determinants on the actual place of death which include, the type of illness or underlying cause of death, structural availability of inpatient beds (Inpatient designated palliative care beds and beds in residential aged care or hospitals), gender, family structure, socio-economic or degree of urbanisation. [8] A focus on home deaths also does not take into consideration that some patients may die in their preferred location elsewhere or deaths at home where this was not the preferred option. There also needs to be the consideration that preferences for place of care may differ from those concerning place of death [9]. For these reasons, there are limitations of home deaths alone as a measure and achieving congruence between preferred and actual place of death is increasingly being used as an indicator of the effectiveness of palliative care services. [10]
As palliative care becomes a more significant aspect of Australia’s health system, the models by which palliative care is provided to individuals and to the whole community become increasingly important. The framework for Australian palliative care is outlined in the National Palliative Care Strategy 2018.
What is known
- Models need to be dynamic to respond to the changing population demands and health system structure and drivers. They also need to be cognisant of social capital theory to understand the communities’ networks and relationships that can potentially enhance or hinder the management of end of life care. [11] Delivery of palliative care services is influenced by the nature of the health system and the country in which the palliative care services are embedded. [12] This makes it harder to establish which models of care provide the most benefits.
- Community palliative care can reduce general health care use and increase family and patient satisfaction with care, which support families to sustain patient care at home. [13] This increases the chance of home deaths and should be provided for those who wish to die at home. [14]
- Residential aged care facilities also provide palliative care in the community setting. The demand for palliative care in these settings is escalating in response to the increase in the older populations. This requires effective integration between different providers. Barriers and facilitators for the integration have been identified, but there is limited evidence about an effective integrated model. [15] As with all settings appropriate outcome measures are required to assess the quality of palliative care provided in residential aged care facilities. [16]
- Palliative care in the acute hospital is usually provided by a consultative service. [17] There is evidence that using either consultative or integrative palliative care interventions in Intensive Care Units (ICU) results in the same outcomes that include the decrease of ICU and hospital length of stay (LOS). [18] Palliative care day centres are components of model of service delivery, and systematic reviews verify that attendance at these provide a positive experience. But there is a lack of evidence on outcomes more generally. [19-20] Though some evidence shows day care services generate a renewed sense of meaning and purpose for the patient. [13]
- Case management is a recurring feature of many successful models. [5]
There have been systematic and literature reviews that have looked at the management of care at the end of life with the role of palliative care for the particular needs for specific groups such as population and disease groups. These require consideration in the planning of the service provision.
Population groups:
- Vulnerable groups [21]
- Cultural groups [22-23]
- Intellectual disability [24]
- Rural populations [25]
- Paediatric [26-29]
- Indigenous [30]
- Prisoners [31]
- Gay, Lesbian, Bisexual, Transgender [32]
Disease groups:
- Dementia [33]
- HIV/AIDS [34-35]
- Cancer [36-37]
Active research areas
- Costs have been measured in some settings and provided evidence that inpatient palliative care consultation programs reduce hospital costs whilst cost effectiveness in the community setting is inconclusive. There also needs to be further studies to evaluate the costs of different population and disease groups served in these settings. [14,38-39]
- To be able to demonstrate the effectiveness of different models of care requires committed investment in skilled researchers to undertake a staged evaluation approach and the development of validated measures for the every aspect of palliative care, as some areas are less developed (eg spirituality). [40] Integrated care with cost effective and responsive systems can be evaluated by a proposed framework that takes a system approach. [41]
- Future trials should compare the relative efficacy of different models and intensities of palliative care community services. [42] Models need to include integration between the different settings and services. More research is required to understand the costs, effectiveness and outcomes of integration, in particular for palliative care delivered in residential aged care facilities as more providers are involved. [15]
- Models that that support alignment or integration of palliative care within other health services such as cancer care or renal care still need to be investigated. [43]