Glossary

Additional diagnosis
Conditions or complaints either coexisting with the principal diagnosis or arising during the episode of care. Additional diagnoses are recorded in accordance with ICD-10-AM Australian Coding Standards.

Admitted patients
Patients who undergo a hospital's formal admission process to receive treatment and/or care.

Average length of stay
The length of stay for an overnight patient is calculated by subtracting the date the patient is admitted from the date of separation and deducting any days the patient was ‘on leave’. Average length of stay refers to the average number of patient days for admitted patient episodes. Patients admitted and separated on the same day are allocated a length of stay of 1 day.

Benchmark
A predefined level of achievement. In PCOC, the outcomes of groups of palliative care patients (e.g. witihin a service / state / nationally) are aggregated and compared to this level. The PCOC benchmarks are aspirational and based on what high performing services are able to achieve.

Bettering the Evaluation and Care of Health (BEACH)
The BEACH program, which began in April 1998, is a continuous national cross-sectional study of general practitioner (GP) activity in Australia.

Care type
Care types refers to the overall nature of a clinical service provided to an admitted patient during an episode of care. Examples of care types are Acute care, Rehabilitation care, Palliative care and Geriatric evaluation and management.

Comorbidity
Comorbidity refers to occurrence of more than one condition/disorder at the same time.

Community care
Episodes where the patient received specialist palliative care in a community setting, often deemed as the patient’s ‘home’. This may be in their private residence, an aged care, mental health or disability residential facility or in a correctiional facility.

Elapsed days
The number of days between the start and end of an episode does not take into account leave days. Within the community setting, elapsed days do not reflect the number of times the palliative care team visited the patient.  

Employed
An employed health professional is defined in this report as one who:

  • reported (the week before the survey) practising in Australia (including practitioners on leave for less than 3 months), or
  • was involved with work that is principally concerned with their health discipline (including research, administration, or teaching).

This includes those involved in clinical and non-clinical roles—for example, education, research and administration. 'Employed' people are referred to as the 'workforce' in this chapter. This includes only practitioners whose main speciality is palliative care and excludes those practitioners practising palliative care as a second or third speciality and those who were on extended leave for more than 3 months or who were not employed.

Encounter
Encounter refers to any professional interchange between a patient and a GP; it includes both face to face encounters and indirect encounters where there is no face to face meeting but where a service is provided (for example, a prescription or referral).

Episode of care
A period of contact between a patient and a service where palliative care is provided in one setting. An episode starts on the date a comprehensive palliative care assessment is undertaken and documented using the five PCOC assessment tools. An episode ends when the patient’s setting of care changes (for example, inpatient to community) or when a patient dies.

Episode level
Episode level data items provide information on the following: the reasons why and how a specialist palliative care episode started and ended; and (where applicable) the setting in which the patient died.

Full-time equivalent (FTE)
The number of 38-hour-week workloads worked by professionals. The FTE is calculated by multiplying the number of employed professionals in a specific category by the average total hours worked by employed people in that category, and dividing by 38. The standard of a 38-hour working week was used across professions in the Health Worforce Data Tool (HWDT) to denote 1 FTE.

Funding source
The principal source of funds for an admitted patient episode (hospitalisation).

General practitioner
A medical practitioner who provides primary comprehensive and continuing care to patients and their families within the community.

A GP is a medical practitioner who is vocationally registered under Section 3F of the Health Insurance Act 1973 (Cwlth), and/or a Fellow of the Royal Australian College of General Practitioners, or a general practice registrar.

Hospice care unit
A  type of specialist unit delivering palliative care services and can include both free-standing hospices and/or palliative care wards within a hospital.

Hospitalisation 
Hospitalisation (or separation) refers to the the episode of admitted patient care, which can be a total hospital stay (from admission to discharge, transfer or death) or a portion of a hospital stay (beginning or ending in a change of type of care; for example, from Acute care to Rehabilitation).

Index of Relative Socio-Economic Disadvantage (IRSD)
One of four Socio-Economic Indexes for Areas (SEIFA) developed by the (ABS 2008). The IRSD represents the socioeconomic position of Australian communities by measuring aspects of disadvantage, such as low income, low educational attainment, high unemployment, and jobs in relatively unskilled occupations. Areas are then ranked according to their level of disadvantage.

When the IRSD is used in this report, people living in the 20% of areas with the greatest overall level of disadvantage are described as living in the 'lowest socioeconomic areas'. The 20% of people at the other end of the scale—those living in areas with the least overall level of disadvantage — are described as living in the 'highest socioeconomic areas'.

It is important to note that the IRSD reflects the overall or average socioeconomic position of the population of an area; it does not show how individuals living in the same area might differ from each other in their socioeconomic position. Visit Classifications for further information.

Inpatient
Inpatient episodes of care are those for which the intent of the admission was for the patient to be in a hospital or hospice overnight. This includes those patients who were admitted and died on the same day.

International Classification of Primary Care - Version 2 (ICPC-2) and ICPC-2 PLUS

the declared national standard in Australia for reporting of health data from general practice and patient self-reported health information. The following BEACH data elements are classified according to the ICPC-2:

  • patient reasons for encounter (RFEs)
  • problems managed
  • clinical treatments (for example, counselling, advice)
  • procedural treatments
  • referrals
  • investigations ordered (including pathology, imaging and other investigations).

Free text received from GPs is coded by trained secondary coders into a more detailed Australian interface terminology called ICPC-2 PLUS, each term of which is classified according to ICPC-2.

Length of stay
An overnight patient is calculated by subtracting the date the patient is admitted from the date of hospitalisation and deducting any days the patient was on leave.

MBS-subsidised palliative medicine specialist services
Services provided by a palliative medicine specialist on a fee for-service basis that are partly or fully funded under the Australian Governments Medicare program. These services cover patient attendances (or consultations) provided in different settings, as well as services such as case conferencing. These item groups, along with the relevant MBS item numbers, are listed in the data source section.

Median
The midpoint of a list of observations that have been ranked from the smallest to the largest.

Outcome measures

Outcome measure 1: Time from date ready for care to episode start

This measure is the time (in days) between the date the patient is ready to receive care to the date that the episode of care actually starts by the service. This  is measured for all episodes of care and across all settings of care.

This measure replaced ‘Time from referral to first contact for the episode’ in July 2013 in consultation with participating services.

Outcome measure 2: Time in unstable phase

This outcome measure relates to the number of days the patient spends in an unstable phase. To meet this benchmark, 90% of patients must have an unstable phase last for three days or less.

The unstable phase alerts clinical staff to the need for urgent or emergency intervention requiring an associated change in the exisiting plan of care. Once assigned, and with the new plan of care in place, the clinical team monitor for improvements in the patient and or family/carer condition. Improvement can be demonstrated via other clinical assessments (reducing symptom distress and problem severity scores). With improvement reported and observed, the new care plan demonstrates its effectiveness and thus, the patient/family/carer can be moved out of the unstable phase into another relevant phase. However, at any time a patient is identified as dying within days (clinical indicators), the phase is immediately changed to terminal phase.

Outcome measure 3: Change in symptoms and problems

These measures include the items of distress caused by pain, fatigue, breathing problems and family/carer problems.

Two of the five PCOC clinical assessment tools used by clinicians are used to measure these patient and family symptoms and problems: the Symptom Assessment Scale (SAS) and the Palliative Care Problem Severity Score (PCPSS). The SAS supports patient rating of symptom related distress and the PCPSS supports the clinician rating of the severity of a problem.

A positive outcome for a patient is to have the symptom / problem in the absent to mild range at the end of a phase (i.e. when the type of phase changes or the person is discharged from the service).

There are two benchmarks for each symptom/ problem. The benchmark is 90% for patients experiencing absent / mild symptoms (problems) to begin with and 60% for patients experiencing moderate / severe symptoms (problems) to begin with.

Phase records must have valid start and end scores to be included in the benchmarks.

3.1–3.4. Pain

Pain management is acknowledged as ‘core business’ of palliative care services; hence, measuring patient distress from pain is considered to be a vitally important outcome for palliative care services. Two of the five PCOC assessment tools are used to measure pain: the Symptom Assessment Scale (SAS) (a patient-rated distress tool) and the Palliative Care Problem Severity Score (PCPSS) (a clinician-rated tool).

3.5–3.6 Fatigue

Fatigue is the most common symptom reported to PCOC. In 2015, PCOC introduced this outcome measure to routine reporting. The change in distress from fatigue is measured from the start of a phase to the end of the same phase via SAS.

3.7–3.8 Breathing problems

Breathing problems is a common symptom reported by patients receiving palliative care. In 2015, PCOC introduced this outcome measure to routine reporting.

3.9–3.10 Family/carer problems

Palliative care is a holistic discipline which considers the needs of the patients and their family and carers. The PCPSS family / carer domain measures problems associated with a patient’s condition or palliative care needs.

Palliative care-related encounter

An encounter which includes GP-recorded terms relevant to one or more of the four ICPC-2 PLUS palliative care-related terms in one or more of the following three BEACH survey data elements:

  • Patient reasons for encounter
  • Problems managed
  • Referral.

The 4 ICPC-2 PLUS palliative care terms are:

A28011 Palliative care

A46020 Palliative care consultation

A67015 Referral; hospice

A68004 Referral; palliative care.

Palliative care-related hospitalisations
Defined, for the purposes of this report, as those hospitalisations for which palliative care was a substantial component of the care provided. Such hospitalisations were identified as those for which the principal clinical intent of the care was palliation during part or all of the hospitalisation, as evidenced by a code of Palliative care for the ‘Care type’ and/or an additional diagnosis.

Palliative care-related prescriptions
Unless otherwise defined, palliative care-related prescriptions are defined in this section as medications listed in the Pharmaceutical Benefits for Palliative Care Schedule. The information on prescription medicines in this section has been sourced from the PBS/RPBS and refers to medications prescribed by approved prescribers and subsequently dispensed by approved suppliers (community pharmacies or eligible hospital pharmacies). Consequently, it is a count of medications dispensed rather than a count of prescriptions written by clinicians.

Palliative care in residential aged care
Palliative care in residential aged care is ongoing care involving very intense clinical nursing and/or complex pain management in the residential care setting.  In the current section, only those aged care residents and admissions who have received an ACFI appraisal indicating the need for palliative care and subsequently received palliative care funding are included in the group ‘appraised as requiring palliative care’.

Palliative care-related separations
Defined, for the purposes of this report, as those separations for which palliative care was a substantial component of the care provided. Such separations were identified as those for which the principal clinical intent of the care was palliation during part or all of the separation, as evidenced by a code of Palliative care for the Care type and/or Diagnosis data items in the NHMD.

Palliative medicine specialist
Medical practitioner who, in order to be eligible for payment of MBS subsidies for palliative care services, must be a Fellow of the Royal Australasian College of Physicians who has completed the College training program in palliative medicine, or a Fellow of the Australasian Chapter of Palliative Medicine, or a Fellow of both (ANZSPM 2008).

Patient day
The occupancy of a hospital bed (or chair in the case of some same day patients) by an admitted patient for all or part of a day.

Patient level
Data related to patient demographics

Permanent admission
An admission to residential aged care for expected long-term care.

Permanent resident
A person who is receiving long-term (permanent) care in a residential aged care facility.

Phase level

Phase level data items describe a palliative care patient’s stage of illness, functional impairment and their levels of pain and symptom distress. Five assessment tools are used to describe the clinical condition of a patient, which, in turn, contribute to a patient’s care plan. These assessment tools are phase of care, SAS, PCPSS, Australia-modified-Karnofsky Performance Status (AKPS), and Resource Utilisation Groups—Activities of Daily Living (RUG—ADL) which provide measures of quality and outcomes of care.

The PCOC analyses each service’s data and compares these with the national average. The items at the phase level are used to quantify patient outcomes and are the focus of the PCOC benchmarks. The four palliative care phases are:

1.   Stable phase

Stable Phase Start: Patient problems and symptoms are adequately controlled by an established plan of care; further interventions to maintain symptom control and quality of life have been planned and the family/carer(s) situation is relatively stable and no new issues are apparent.

Stable Phase End: The needs of the patient and or family/carer(s) increase, requiring changes to the existing plan of care.

2.   Unstable phase

Unstable Phase Start: An urgent change in the plan of care or emergency treatment is required as the patient experiences a new problem that was not anticipated in the existing plan of care; and/or the patient experiences a rapid increase in the severity of a current problem; and/or the circumstances of the patient’s family/carer(s) change suddenly, impacting on patient care.

Unstable Phase End: The new plan of care is in place; it has been reviewed and no further changes to the care plan are required. This does not necessarily mean that the symptom crisis has fully resolved but there is a clear diagnosis and plan of care (that is, the patient is stable or deteriorating) and/or death is likely within days (that is, the patient is now terminal).

3.   Deteriorating phase

Deteriorating Phase Start: The care plan is addressing anticipated needs but requires periodic review because the patient’s overall functional status is declining; the patient has a gradual worsening of existing problem and/or a new but anticipated problem; and/or the carer(s)/family undergo(es) gradually worsening distress that impacts on the patient’s care.

Deteriorating Phase End: The patient condition plateaus (that is, the patient is now stable); or there is an urgent change in the care plan or emergency treatment; and/or the family/carer(s) have a sudden change in their situation that impacts on patient care, and urgent intervention is required (that is, the patient is now unstable); or death is likely within days (that is, the patient is now terminal).

4.   Terminal phase

Terminal Phase Start: Death is likely within days.

Terminal Phase End: The patient dies or the patient’s condition changes and death is no longer likely within days (that is, the patient is now stable or deteriorating).

Principal diagnosis
The diagnosis established after study to be chiefly responsible for occasioning the patient's episode of admitted patient care.

Separation
The episode of admitted patient care, which can be a total hospital stay (from admission to discharge, transfer or death) or a portion of a hospital stay (beginning or ending in a change of type of care; for example, from Acute care to Rehabilitation). Separation also means the process by which an admitted patient completes an episode of care by being discharged, dying, transferring to another hospital or changing type of care.

Subsidised prescriptions
A PBS/RPBS subsidised prescription is where, for those items listed on the PBS/RPBS, a government subsidy is applied when the dispensed price of a medication exceeds the patient co-payment. The PBS and RPBS covers the diffference between the full cost of the medication and the patient co-payment.

Specified care and services
The care and services that all approved providers of residential aged care must provide to any resident as needed, as set out by the Schedule of specified care and services for residential care services (Schedule 1, Quality of Care Principles 2014) within the Aged Care Act 1997.

Total hours
The total hours worked per week in the profession.

Under co-payment
A PBS/RPBS prescription is classified as under co-payment when there is no government subsidy as the dispensed price of the prescription does not exceed the patient co-payment. The PBS/RPBS do not cover medicines supplied to public hospital inpatients, over-the-counter medicines or private prescriptions.

References

ABS 2008. Australian Bureau of Statistics (ABS) 2008: Index of Relative Socio-Economics Disadvantage (IRSD). Canberra. Viewed March 2015.

Australian and New Zealand Society of Palliative Medicine (ANZSPM) 2008. Defining the meaning of the terms consultant physician in palliative medicine and palliative medicine specialist. Canberra: ANZSPM. Viewed 21 April 2015.