Glossary

Advance care directives

A set of documents containing instructions that consent to, or refuse, specified medical treatments and that articulate care and lifestyle preferences in anticipating future events or scenarios. They become effective in situations where the person is no longer able to make decisions. The documentation differs across the States and Territories in Australia.

Advance care planning

The process of preparing for likely scenarios near the end of life that usually includes assessment of, and discussion about, a person’s understanding of their medical condition and prognosis, values, preferences and personal and family resources. Advance care planning supports patients in communicating their wishes about their end of life.

Advance Care Planning Australia is a national program that supports advance care planning. [2]

Bereavement

Bereavement is the total response to a loss and includes the process of ‘recovery’ or healing from the loss. Although there are similarities in people’s responses, there are also marked differences. Each person will grieve and ‘recover’ in their own way.

Cancer

A large range of diseases, in which some of the body's cells become defective, begin to multiply out of control, can invade and damage the area around them, and can also spread to other parts of the body to cause further damage. [3]

Chemotherapy

The use of drugs (chemicals) to prevent or treat disease, with the term usually being applied to treatment for cancer rather than for other uses. [3]

Chronic diseases

Term applied to a diverse group of diseases, such as heart disease, cancer and arthritis (to name a few), that tend to be long-lasting and persistent in their symptoms or development. Although these features also apply to some communicable diseases (infections), the term is usually confined to non-communicable diseases. [3]

Chronic heart failure

A complex clinical syndrome with typical symptoms (eg, dyspnoea, fatigue) that can occur at rest or on effort that is characterised by objective evidence of an underlying structural abnormality OR cardiac dysfunction that impairs the ability of the ventricle to fill with or eject blood (particularly during exercise). A diagnosis of CHF may be further strengthened by a beneficial clinical response to treatment(s) directed towards amelioration of symptoms associated with this condition. [8]

Co-morbidity

When a person has two or more health problems presenting at the same time. For example, hypertension is a co-morbidity of a number of conditions, including diabetes, Ischemic Heart Disease, and end-stage renal disease.[3]

Cultural competence

Refers to a relationship between the helper and the person who is being helped, in a cross-cultural context. It involves a set of behaviours, attitudes and a culture within a system that respects the cultural background, beliefs and values of the individual. [4]

Cultural safety

Cultural safety refers to “an environment that is safe for people: where there is no assault, challenge or denial of their identity, of who they are and what they need. It is about shared respect, shared meaning, shared knowledge and experience, of learning, living and working together with dignity and truly listening.”  [5]

Depression

A mood disorder with prolonged feelings of being sad, hopeless, low and inadequate, with a loss of interest or pleasure in activities and often with suicidal thoughts or self-blame. [3]

End-of-life care

End-of-life care combines the broad set of health and community services that care for the population at the end of their life. Quality end-of-life care is realised when strong networks exist between specialist palliative care providers, primary generalist providers, primary specialists and support care providers and the community – working together to meet the needs of people requiring care.

Eventually fatal condition

A progressive condition that has no cure and that can be reasonably expected to cause the death of a person within a foreseeable future. The definition is inclusive of both malignant and non-malignant illness and ageing. A person has an eventually fatal condition if their death in the foreseeable future would not be a surprise. The terms eventually fatal orterminal condition are used interchangeably. In reference to the patient: language that refers to ‘living with an eventually fatal (or terminal) condition’ is recommended.

Family

A family is defined as those who are closest to the patient in knowledge, care and affection. The family may include the biological family, the family of acquisition (related by marriage/contract), and the family of choice and friends (including pets).

Incidence

The number of new cases (of illness or event, and so on) occurring during a given period. [3]

Life-limiting illness

The term 'life-limiting illness' is used to describe illnesses where it is expected that death will be a direct consequence of the specified illness. This definition is inclusive of illnesses of both a malignant and non-malignant nature. A life-limiting illness might be expected to shorten an individual's life. This differs from chronic illnesses where, even though there may be significant impact on the patient's abilities and quality of life, there is likely to be a less direct relationship between the illness and the person's death. [9]

Metastasis

The spread of a cancer from its original site to other parts of the body. [3]

Motor Neurone Disease (MND)

This is an uncommon degenerative disorder of motor neurones which leads to progressive paralysis of cranial and skeletal muscles. The disease can be categorised on the basis of sites of involvement at presentation and the balance between lower motor neurone and upper motor neurone features. [7]

  • Amyotrophic Lateral Sclerosis (ALS)
  • Progressive Bulbar / Pseudobulbar Palsy
  • Progressive Muscular Atrophy
  • Primary Lateral Sclerosis [7]

Multidisciplinary team

A multidisciplinary team consists of a mix of health care disciplines. Team members share common goals, collaborate and work together in planning and delivery of care. Members of a multidisciplinary team might include GPs, surgeons, medical or radiation oncologists, palliative care specialists, pastoral care workers, nurses, social workers, occupational therapists, physiotherapists, dieticians, volunteers, pharmacists or care assistants. [2]

Palliative approach

The palliative approach to care is an approach linked to palliative care that is used by primary care services and practitioners to improve the quality of life for people with life-limiting illness, their caregiver/s and family. [9]

Palliative care

The World Health Organization defines palliative care as:

"... an approach that improves quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual."

Key points on the WHO approach

  • The palliative approach comes early in the course of an illness, not just as end-of-life care.
  • There is an emphasis on promoting holistic care to ensure physical, psychological, social, and spiritual well-being.
  • The family and significant others are included in the care process.
  • There is an emphasis on impeccable assessment, early identification of problems, and implementation of appropriate treatments.
  • Disease modifying treatments, such as chemotherapy and radiotherapy, may have a role.
  • Palliative care can be provided in any setting.
  • There is an emphasis on a team approach to care. [6]

Primary care providers (in the context of palliative care)

Includes all those health services and staff that have a primary or 'first contact' relationship with the patient with a life limiting illness.

The use of the term primary care provider in this context refers to general practitioners, community nurses, staff of residential aged care facilities and multi-purpose centres. It also includes other specialist services and staff, for example, oncologists, renal, cardiac or respiratory physicians, and staff of acute care hospitals and services.

These staff, while specialist in their own areas, may undertake an ongoing role in support of patients with life limiting illness by adopting a palliative approach to the care they provide. [9]

Primary caregiver

Provides the primary support role for the patient at all levels of need. This may include more than one individual, for example, the mother and father when the patient is a child. [9]

Prognostic indicators

Factors, such as staging, tumor type, and laboratory studies, that may indicate treatment effectiveness and outcomes. [10]

Quality of life

The term 'quality of life' is used to describe a person's perception of their position in life within the culture and value systems he or she lives in, and in relation to his or her goals, expectations, standards, and concerns. It is a broad-ranging concept and incorporates the person's:

  • physical health
  • psychological state
  • level of independence
  • social relationships
  • personal beliefs
  • relationship to prominent features of the environment (for example, the place of care). [9]

Radiation therapy

Radiation therapy is the use of radiation (x-rays) to treat a range of diseases including cancer. Radiation therapy may be given on its own, or it might be give with other forms of treatment such as chemotherapy or surgery. Radiation therapy is designed to destroy cancer cells while reducing the impact of radiation to healthy cells. Radiation therapy is a localised treatment, which means that it is a treatment that in general affects only the part of your body that is receiving treatment. [11]

Randomised control trial

This is a type of study in which the subjects are randomly given a new treatment, allocated to a control group, or given an existing treatment. It aims to measure the effectiveness of a treatment.

Respite care

Refers to care provided in the home or health care setting aimed at temporarily relieving the primary caregiver.

Specialist palliative care provider

This is a medical, nursing, or allied health care professional, recognised by an accrediting body (or who primarily works in palliative care if an accrediting body is not available), who provides consultative or ongoing care for people with life-limiting illnesses and support for their family. [9]


REFERENCES

2. Respecting Patient Choices. (2010). Advance care planning for everyone.Retrieved September 15, 2010, from www.advancecareplanning.org.au/

3. Australian Institute of Health and Welfare. (2012) Australia's Health 2012.Australia's health no. 13. Cat. no. AUS 156. Canberra. AIHW. Retrieved March 26, 2013, from www.aihw.gov.au/publication-detail/?id=10737422172

4. The Royal Australasian College of Physicians (RACP). (2004). An Introduction to Cultural Competency. Retrieved September 15, 2010, from www.racp.edu.au/docs/default-source/advocacy-library/an-introduction-to-cultural-competency.pdf

5. Williams, R. (2008). Cultural safety; what does it mean for our work practice? Australian and New Zealand Journal of Public Health. 23(2),  213-214.

6. World Health Organization (WHO). (1998). WHO Definition of Palliative Care. Retrieved January 25, 2010, from www.who.int/cancer/palliative/definition/en/

7. Motor Neurone Disease Australia. (2011). Motor Neurone Disease – aspects of care for the primary health care team Retrieved October 24, 2013, from www.mndcare.net.au/overview/mndcare-approach/information-and-discussion/for-health-and-community-care-professionals/mnd-australia-2014

8. Krum, H., Jelinek, M.V., Stewart, S., Sindone, A., Atherton, J.J., Hawkes, A.L., on behalf of the CHF Guidelines Core Writers. (2006). Guidelines for the prevention, detection and management of people with chronic heart failure in Australia 2006. MJA. 185 (10): 549-556

9. Palliative Care Australia. (2005). Standards for providing quality palliative care for all Australians. Retrieved November 10, 2010, from http://palliativecare.org.au/national-standards-assessment-program/

10. Mosby's Medical Dictionary, 8th edition. (2009). Retrieved November 10, 2010, from http://medical-dictionary.thefreedictionary.
com/prognostic+indicators

11.Peter MacCallum Cancer Centre. (2009). Radiation Therapy. Retrieved November 10, 2010, from www.petermac.org/patient- care/treatment/radiation-therapy