The following descriptions and definitions of terms relevant to palliative care, advance care planning and bereavement have been compiled from the Strengthened Aged Care Standards and the Aged Care Quality and Safety Commission’s Glossary of terms in the Guidance for the Strengthened Aged Care Standards. They provide the context for the meaning of these terms within the aged care sector.
Advance care planning
The voluntary process of planning for future health and personal care needs. It provides a way for an older person to make their beliefs, values and preferences for future medical care known to inform future medical decisions, if the older person cannot make or communicate these decisions themselves. Advance care planning is not a single event but an ongoing process and conversation that should be undertaken early and revisited regularly. [1]
Advance care planning documents
A catch-all term to include documents that result from advance care planning. It includes Advance Care Directives and advance care plans.
An Advance Care Directive is a document completed and signed by a competent older person who still has decision- making capacity regarding their future care and preferences for end-of-life care. In Australia, advance care directives are recognised by specific legislation or common law. Advance care directives can record the person’s preferences for future care and/or appoint a substitute decision-maker to make decisions about the person’s health care.
An advance care plan captures what is known about a person’s beliefs, values and preferences in relation to future care decisions, but it does not meet the requirements for statutory or common law recognition as a result of the person’s insufficient capacity. The document may provide helpful information to guide substitute decision-makers and health professionals but is not legally binding. (Advance Care Planning Australia, Advance Care Planning: Aged care implementation guide). [1]
Advocate
An advocate is an impartial person who can support older people in a variety of situations – from understanding aged care services or fees through to understanding their rights and managing their aged care. The Australian Government offers free, independent, and confidential support through the National Aged Care Advocacy Program (NACAP). The program is delivered by the Older Persons Advocacy Network (OPAN). [1]
Anticipatory medicines
Medicines prescribed and dispensed in preparation for a time when a person needs them. They are used to manage symptoms in the home with the goals of rapid relief and avoiding unplanned or unwarranted admission to a healthcare facility. [1,2]
Bereavement support
Bereavement support includes the emotional, psychosocial and spiritual support provided to families and loved ones before and after the death of a person. It is designed to help people cope with grief, loss and adjustment. Bereavement support may look different in different communities, depending on the lived experiences and cultural backgrounds of those involved (ACSQHC, Essential elements for safe and high-quality end-of-life care: National Consensus Statement). [2]
Carer
A partner, family member or friend who provides unpaid care, support and help to an older person. A carer may also be an older person. This does not include employees of the provider, or people the provider contracts or pays to provide care and services, or people who help as a volunteer. This definition is in line with the Carer Recognition Act 2010. [1,2]
Clinical care
Health care that encompasses the prevention, treatment and management of illness or injury, as well as the maintenance of psychosocial, mental and physical wellbeing. It includes care provided by doctors, nurses, pharmacists, allied health professionals and other regulated health professionals. Organisations providing clinical care are expected to make sure it is best practice, meets the older person’s needs, and optimises the older person’s health and wellbeing. [1,2]
Clinical governance
An integrated set of leadership behaviours, policies, procedures, responsibilities, relationships, planning, monitoring and improvement mechanisms that are implemented to support safe, quality clinical care and good clinical outcomes for each older person. The purpose of clinical governance in aged care is to support the workforce and visiting health professionals in a service to provide safe, quality clinical care as part of a holistic approach to aged care that is based on the needs, goals and preferences of the older person (Aged Care Quality and Safety Commission (ACQSC), Glossary). [1,2]
Comprehensive care
Comprehensive care involves teams of health professionals working together and communicating effectively to plan, manage and coordinate care with the older person, their family and carers. It requires providers to have systems and processes in place to support this, and to foster a collaborative and person-centred culture. (NSQHS). [1.2]
Coordinated care
Health and aged care systems can be difficult to navigate, especially for people with multiple conditions or complex, long-term health care needs. Coordinating care so that relevant information is transferred between providers (for example, a GP and a specialist) and settings (for example, emergency department and residential aged care) is crucial if an older person is to receive consistent, cohesive care. The goal of coordinated care is to ensure that all providers and organisations involved in an older person’s care have the information they need to provide the right type of care, at the right time. This is achieved through establishing cooperative, ongoing relationships between an older person, aged care services, their family, carer and substitute decision maker and their health care providers. (AIHW). [2]
Culturally safe care
Culturally safe care and services are planned and delivered in a way that is spiritually, socially, emotionally and physically safe and respectful for older people. Culturally safe care and services ensure that an older person’s identity is respected so that who they are and what they need is not questioned or denied. Whether care and services are ‘culturally safe’ can only be determined by those receiving care. For Aboriginal and Torres Strait Islander peoples, culturally safe practice is the ongoing critical reflection on provider knowledge, skills, attitudes, practicing behaviours and power differentials in delivering safe, accessible and responsive care and services free of racism. [1,2]
Deprescribing
The process of tapering or stopping medicines, which aims to discontinue potentially inappropriate medicines, minimise inappropriate polypharmacy and improve a person’s health outcomes. Also referred to as ‘de-escalation’. (Quality Use of Medicines: Guiding Principles). [1,2]
Deterioration
Physiological, psychological or cognitive changes that may indicate a significant worsening of the older person’s health status (NSQPCH Standards). [1,2]
Dignity of risk
The concept that all adults have the right to make decisions that affect their lives and to have those decisions respected, even if there is some risk to themselves. Dignity of risk means respecting this right. Care and services need to strike a balance between respect for the older person’s autonomy and the protection of their other rights (such as safety, shelter), unless it is unlawful or unreasonably impinges on the rights of others. [1,2]
Diversity
The varied needs, characteristics and life experiences, which may be social, cultural, linguistic, religious, spiritual, psychological, medical or care needs of consumers. Also refers to diverse gender and sexuality identities, experiences and relationships, including (but not limited to) lesbian, gay, bisexual, transgender or intersex. [1,2]
End of life
The period when an older person is living with, and impaired by, a fatal condition, even if trajectory is ambiguous or unknown. This period may be years in the case of older people with chronic or malignant disease, or very brief in the case of older people who suffer acute and unexpected illnesses or events, such as sepsis, stroke or trauma (NSQHS Standards, ed 2). [1,2]
End-of-life planning conversations
The purpose of an end-of-life care discussion conversation will depend on the circumstances of the older person. End-of-life discussions may include talking to the older person, their loved ones and health professionals about their beliefs, values, goals and preferences for the care and treatment in the last days, weeks or months of their life. (ACI-NSW). [1]
Evidence-based practice
Evidence-based practice (EBP) is an approach to care that integrates the best available research evidence with clinical expertise and the individual’s values (Vic Health). [2]
Goals of care
Clinical and other goals for an older person’s care that are determined in the context of a shared decision-making process (NSQHS Standards, 2nd ed). [1,2]
Holistic
A holistic approach means to provide support that looks at the whole person. In the provision of clinical care, the provider should consider the older person’s physical, mental and emotional, social and spiritual wellbeing (adapted from NSW Health definition). [1,2]
Informed consent
An older person’s decision, given voluntarily, to agree to a clinical care treatment, procedure or other intervention that is made:
- Following the provision accurate and relevant information about the intervention and alternative options available
- with adequate knowledge and understanding of the benefits and material risks of the proposed intervention relevant to the older person. [1,2]
Last days of life
The hours, days or, occasionally, weeks when a person’s death is imminent. This is sometimes referred to as the period when a person is actively dying. (National Consensus statement, Australian Commission on Safety and Quality in Health Care (ACSQHC). [1,2]
Medication review
A systematic, comprehensive and collaborative assessment of medicine use and management for an older person. Medication review aims to optimise their medicines and outcomes of therapy by providing a recommendation or making a change. It includes the objective of reaching an agreement with the older person about medicine use in the context of overall treatment, optimising the impact of medicines, minimising the number of medication-related problems and reducing waste. Medication review is related to but distinct from medication reconciliation. (Quality use of Medicines Guiding Principles Glossary). [1,2]
Multidisciplinary care
Comprehensive care that is planned and delivered by a group of health professionals from a range of disciplines, working together to address as many of the older person’s needs as possible. [1,2]
Needs, goals, preferences
An older person’s needs, goals and preferences refers to their individual:
- goals of care, including in relation to wellness, independence, reablement and social connections
- needs, including identified care needs including personal care, social engagement, clinical care, food, cultural, religious and spiritual needs
- preferences about the way care is delivered and the things they do and don’t like. [1,2]
Palliative care
Person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure, who is expected to die, and for whom the primary goal is to optimise the quality of life. Palliative care is care that helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness. Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social.
Palliative care is an approach that improves the quality of life of older people and their carers and families who are facing the problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual (National Palliative Care Strategy, 2018). [1,2]
Person centred care
An approach to the planning, delivery and evaluation of care that is founded on partnerships between providers and the older person. Person-centred care is respectful of, and responsive to, the preferences, needs and values of the older person. To achieve person-centred care, providers and workers need to:
- work in partnership with older people
- recognise that every person is unique and value the person’s voice, including the knowledge they bring about their care needs
- enable the experiences and expertise of older people to help shape decisions about care at the level of the organisation, service and individual. [1,2]
Quality of life
An older person’s perception of their position in life taking into consideration their environment and their goals, expectations, standards, and concerns. It includes their emotional, physical, material, and social wellbeing. [1,2]
Shared decision making
Shared decision making involves discussion and collaboration between an older person and their health or aged care provider. It is about bringing together the older person’s values, goals and preferences with the best available evidence about benefits, risks and uncertainties of treatment, in order to reach the most appropriate care decisions for that person. (NSQHS Standards). [2]
Spiritual care
Spiritual care involves caring for the whole person holistically incorporating the needs of mind, body and spirit. This holistic approach can enhance spiritual wellbeing and improve health and quality of life. Spiritual care recognises and responds to a person’s spiritual needs by supporting them to find meaning, purpose, hope and transcend loss, grief, disability, illness and pain (Meaningful Ageing Australia). [2]
Substitute decision maker
A person appointed or identified by law to make health, medical, residential and other personal (but not financial or legal) decisions on behalf of an older person whose decision-making capacity is impaired. A substitute decision-maker may be appointed by the older person, appointed for (on behalf of) the person, or identified as the default decision-maker by legislation, which varies by state and territory (NSQPCH Standards). [1,2]
Supported decision-making
Supported decision-making is a framework within which a person with impaired cognitive function or decision-making capacity can be assisted to make safe, informed decisions. It is based on the premise that everyone has the right to make their own decisions and to receive whatever support they require to do so. [2]
Transitions of care
Situations when all or part of an older person’s care is transferred between locations, organisations, providers, or levels of care within the same location, or as the older person’s condition and care needs change (NSQHS Standards, 2nd ed.). [1,2]
Page updated 30 October 2024