The following principles have been informed by research-based evidence, the ACI Framework for the Statewide Model for Palliative and End of Life Care Service Provision, outcomes from the consultations and diagnostic work undertaken by the ACI Palliative Care Network and key policies and guidelines.
Patients, carers and families have a key role in contributing to decisions about care and are considered as ‘partners’ in the provision of health care. This means that care is ‘respectful of, and responsive to, the preferences, needs and values of [patients, carers and family members]' (ACSQHC, 2013). Patient, carer and family centred care requires that they be actively involved in all aspects of care, including care planning and setting holistic goals of care.
Patient, carer and family centred care is a historical cornerstone of palliative and end of life care. Evidence has shown that this approach can lead to improved quality of life in terms of physical and psychosocial measures (Temel, J.S. et al. 2010). The first Standard of the Palliative Care Australia (PCA) Standards for providing quality palliative care for all Australians (PCA, 2005) reads:
“Care, decision making and care planning are each based on a respect for the uniqueness of the patient, their caregiver/s and family. The patients, their caregiver/s and families’ needs and wishes are acknowledged and guide decision making and care planning”.
The ten National Safety and Quality Health Service (NSQHSS) Standards articulated by the Australian Commission on Safety and Quality in Health Care (ACSQHC, 2011) includes 'Partnering with Consumers’ (Standard 2). The broad aim of Standard 2 is to improve safety and quality outcomes for patients.
Patient-centred care describes how a health care system meets people’s expectations regarding respect for people and their wishes, communication between health workers and patients. Core elements of patient-centred care have been identified as education and shared knowledge; involvement of family and friends, collaboration and team management; sensitivity to non-medical and spiritual dimensions of care; respect for patient needs and preferences and the free flow and accessibility of information (Shaller, 2007). Research has demonstrated the link between patient-centred care and a reduction in the number of test orders and other referrals, greater patient satisfaction and greater patient enablement.
Needs-based care ensures patients, carers and families have equitable access to services based on effective assessment. This requires that services be available to meet the needs of both patients and their families and carers. In a needs-based care model, care is assessed and tailored to the unique needs of the patient, carer and family. Needs-based care ensures that the individual needs of the patient, their family and carer are the basis on which services are provided, rather than for example on the basis of diagnosis, age or geography. Assessment of need as people approach and reach the end of life is central to delivering person-centred, holistic care.
A key learning in our consultations is that “People’s needs change.” The needs of the patient, family and carer during their end of life journey vary over time and care settings. In order for services to be responsive, coordinated and flexible in meeting these changing needs, there needs to be space and frequent opportunity for patients, carers and families to describe their changing needs over time and to reassess care plans and goals of care.
The NSW Government Plan to Increase Access to Palliative Care 2012 – 2016 acknowledged gaps in both specialist and primary care services for people approaching and reaching the end of life. The Plan also acknowledged gaps in assessment skills and referral processes needed for an integrated, networked approach to care. Ensuring that all clinical staff have the skills to undertake assessment of holistic needs as people in their care approach and reach the end of life is the primary mechanism to ensure that people get the right care in the right place at the right time. Needs-based assessment drives effective referral and clinical handover.
Primary care providers in particular, reported limited access to training and less access to continuing education required to provide quality care to people as they approach and reach the end of life. Professional education, formalised networking and shared care arrangements were viewed by many as key ways to improve care into the future.
Gaps in both specialist and primary care services for people approaching and reaching the end of life in NSW means that sometimes patients, carers and families have to travel long distances to receive the care they need. All people need to be able to access the level and type of care required to address their needs within a reasonable distance to where they live.
People approaching and reaching the end of their life need access to local primary care, needs-based access to level one specialist palliative care services and networked access to Level 2 and 3 services based on assessed need.
The principle of care as close to home as possible means that people have access to reasonable services and supports required to meet their needs and satisfy their desire, if that is the case, to remain at home. Where this is not possible or desired, care systems should be oriented to provide care as close to home as is practical, safe and desired. This can include a residential aged care facility or a relative’s home.
Decisions about how close to home care is possible start with a detailed understanding of the patients and their families and carers wishes combined with good clinical judgement and decision-making about safe and practical options. As always in a patient-centred model of care these options need to be negotiated and agreed with patients and their families
NSW residents experience limited access to specialist palliative care services as well as primary care providers with expertise in providing care to people as they approach and reach the end of their lives. This is documented in both the NSW Government Plan to Increase Access to Palliative Care 2012 – 2016 and the ACI Palliative and End of Life Care Diagnostic Report. Limited access to both local and networked services to meet their needs is particularly apparent for people living in rural and remote areas of NSW.
The care experienced by patients, carers and families meets the Australian Safety and Quality Goals for Health Care (ACSQHC, 2012). This means that:
Evidence-based practice is an approach to care that encourages clinicians to use the best available evidence in combination with the individual patient’s circumstances and preferences in clinical practice (Caresearch, 2014). The approach also highlights the need to draw on knowledge from past clinical experience in addition to best external evidence. As systems of care mature and engage a wider group of people with an interest in improving care for people approaching or reaching the end of life, the need to have access to up-to-date literature, research-based evidence and specialist palliative care knowledge and expertise is critical. As palliative and end of life care is multidisciplinary and spans across jurisdictions, the literature and evidence base can be vast.
The vision for our Blueprint is that all NSW residents have equitable access to quality care based on assessed need as they approach and reach the end of life. Ensuring that care provided is in accordance with best practice recommendations, is organised for quality and is driven by the collection and reflection of appropriate and meaningful clinical data are all necessary components of quality systems. Quality and safety in palliative and end of life care is eroded when there are gaps in resourcing and support available to those providing such care.
Integrated care is seamless care. It enables patients, carers and families to be central to their own care planning and to receive the right care, in the right places, at the right times.
Integrated care is “the provision of seamless, effective and efficient care that responds to all of a person’s health needs, across physical and mental health in partnership with the individual, their carers and family. It means developing a system of care and support that is based around the needs of the individual [the carer and family], provides the right care at the right time and makes sure dollars go to the most effective way of delivering health care for the people of NSW.” (NSW Ministry of Health)
A distinction can be drawn between real integration, in which organisations merge their services, and virtual integration, in which providers work together through networks and alliances (Kings Fund, 2011). This is particularly relevant for people approaching and reaching the end of life, where networked arrangements are required among primary care and specialist palliative care services.
A key goal of the NSW Government Plan to Increase Access to Palliative Care 2012 – 2016 is to work towards better integration of primary care, aged care and specialist palliative care across the state to improve access for all people approaching and reaching the end of life, their families and carers. Integrated services contribute to coordinated, timely and flexible care for patients, families and carers.
The Guide to Palliative Care Service Development: A population based approach developed by Palliative Care Australia (2005) outlined a plan for providing equitable access to care for people approaching and reaching the end of life in the context of ‘efficient, effective and ethical use of resources' (PCA, 2005: 5). Based on the National Palliative Care Strategy back in 2000, the Guide suggests a networked approach to care involving primary health care providers and specialist palliative care services. Importantly, the guide recognises that not all people will need or desire the same type of access to specialist palliative care. Many people can have their needs met through their existing and ongoing relationship with their primary care practitioner or multidisciplinary health service. This includes other medical specialists and general practitioners for example. This approach sees specialist palliative care services as having a focus for serving populations with complex care needs as well as providing support and guidance for a range of care providers across all care settings.
Both health providers and consumers at times described health services as being siloed in their care and in the systems they use to support that care. This results in care that is delayed and or fragmented and not supported with timely, transferrable data that works across agencies and jurisdictions. The Palliative and End of Life Care Diagnostic Report emphasised how the needs of patients, families and carers change over time, requiring flexible and integrated approaches to care.
We know that some population groups and clinical cohorts do not have equitable access to care or experience care that is sub-optimal and or culturally unsafe or inappropriate.
Equity in relation to health care means that patients, carers and families have equal access to available care for equal need; equal utilisation for equal need and equal quality of care for all (Whitehead, 1992).
The Palliative and End of Life Care Diagnostic Report found that care to people approaching and reaching the end of life is often fragmented and under-utilised by identified population groups or clinical cohorts. These included Aboriginal people; people under the age of 65; people who live alone; people of culturally and linguistically diverse backgrounds; people with a non-cancer diagnosis, people living with dementia and people living with a disability.
There is a growing body of evidence indicating that given a choice, patients would prefer to die at home or as close to home as possible. However, a lack of services to support that care means that many people die in acute care settings or for people in rural and remote areas, death occurs far from their local community. A lack of after-hour support services particularly inhibits carers and family members’ ability to provide home care.
A key learning within the Palliative and End of Life Care Diagnostic Report noted that although most patients prefer to be cared for as close to home as possible, services required to provide such care are limited and often inflexible. The report also noted that people living in rural and remote areas experience additional barriers to receiving quality care at the end of life, and rely on local, innovative strategies to help overcome these. Limited formalised arrangements for after-hours care and support from general practitioners and other care providers compound the difficulties in providing care as close to home as possible for people in rural and remote NSW.