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.
Patient, family and carer centred care requires that they be actively involved in all aspects of care, including care planning and setting holistic goals of care. Patients, families and carers are ‘partners’ in the decision making regarding the provision of their healthcare. This results in care that aims to ensure 'patients receive comprehensive health care that meets their individual needs, and considers the impact of their health issues on their life and wellbeing. It also aims to ensure that risks of harm for patients during health care are prevented and managed through targeted strategies. Comprehensive care is the coordinated delivery of the total health care required or requested by a patient. This care is aligned with the patient’s expressed goals of care and healthcare needs, considers the impact of the patient’s health issues on their life and wellbeing, and is clinically appropriate.'1
Patient, family and carer centred care is an historical cornerstone of end of life and palliative care. When patients, families and carers are supported by the health system to actively participate, research has shown that it can lead to increased patients’ satisfaction with health care services, improved patients’ self-perceptions, reduced stress and increased empowerment.2
Making care available on the basis of assessed need ensures that every patient, family and carer gets access to care that is individualised based on their goals, wishes and circumstances.
A key learning from consultations is that “people’s needs change.” The needs of the patient, family and carer will vary with time and across care settings during their palliative and end of life journey.
Needs-based care requires services be available with skilled staff to meet the needs of patients, families and carers. Regular assessment of need allows patients, families and carers to describe their changing needs over time and helps services be responsive, coordinated and flexible in meeting these changing needs including reassessing care plans and goals of care. Needs-based assessment drives effective referral and clinical handover therefore, clinical staff must have the skills to undertake holistic needs assessments as people in their care approach and reach the end of life helping to ensure that people get the right care in the right place at the right time.
Providing care as close to home as possible means that people have access to high quality, services and supports required to meet their needs, wishes and circumstances. Home can include a residential aged care facility or a relative’s home.
Decisions about how close to home it is possible to provide care will start with a detailed understanding of the patient, family and carer 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 the patient, family and carer.
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. 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 means that:
Ensuring clinical, cultural and psychological safety means patients, families and carers experience no negative consequences.
All NSW residents should 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.
'Integration of care is an approach that aims to deliver seamless care within the health system and its interface with social care.
It places people at the centre of care, providing comprehensive wraparound support for individuals with complex needs and enabling individuals to access care when and where they need it.
A more integrated healthcare system is easy to use, navigate and access. It is responsive to the specific health needs of local communities, providing them with more choice and greater opportunities to actively engage with the health system. For service providers and clinicians, integrating care supports them to collaborate more effectively across health and with social care.'3
Both healthcare providers and patients, families and carers at times describe 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, transferable data that works across agencies and jurisdictions. Integrating care is vital to improving outcomes for vulnerable and at-risk populations and people with complex health and social needs.
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, families and carers have equal access to available care for equal need; equal utilisation for equal need and equal quality of care for all.4
Evidence shows 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.