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 hospitalisation 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.

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
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 palliative care either in their home or a residential aged care facility.

Elapsed days
Represent the number of days between the start and end of an episode and do not take into account leave days. Within the community setting, the 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) practicing 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 palliative care episode starts/ends; and (where applicable) the setting in which the patient died

Full-time equivalent (FTE)
Represents 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 in this report to provide figures comparable with previously published data.

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 hospice care unit is 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 (or 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).

Index of Relative Socio-Economic Disadvantage (IRSD)
The IRSD is one of 4 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. See 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 hospital overnight. This includes those patients who were admitted and died on the day of their admission

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

    ‘Time from date ready for care to episode start’ relates to the responsiveness of palliative care services to patient needs. This measure is the time (in days) between the date the patient is ready for care and the date of the episode start  and 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. However, following feedback and consultation with PCOC participants, this measure was superseded in July 2013.

    Outcome measure 2: Time in unstable phase

    This outcome measure relates to the number of patients in the ‘unstable phase’ and the number of days they remain in an unstable phase during their episode of care. The unstable phase, by nature of its definition, alerts clinical staff to the need for urgent or emergency intervention. This phase shows the effectiveness of the intervention(s) implemented for a specific new problem or the worsening of an existing problem. Those patients assessed to be in the unstable phase should have their problem(s) managed and under control within three days, regardless of the setting of care.

    Outcome measure 3: Change in symptoms and problems

    3.1–3.4. Pain management is acknowledged as a ‘core business’ of palliative care services; hence, measuring patient distress from pain is considered an important outcome for palliative care services. Two of the five assessment tools used in PCOC are used to measure pain: the Symptom Assessment Scale (SAS) (a patient-rated tool) and the Palliative Care Problem Severity Score (PCPSS) (a clinician-rated tool).

    Ideally, those patients with absent/mild pain at the beginning of a phase should be maintained with absent/mild pain at the end of the phase. Similarly, patients in moderate/severe pain at the start of a phase should be able to achieve mild/absent pain at the end of the phase.

    Any change in pain is measured by the difference in pain score from the beginning of a phase to the end of a phase and is calculated using both PCPSS (severity of) and SAS (distress from) pain measures.

    3.5–3.6 Change in distress from fatigue. Fatigue is the most common symptom reported to PCOC via the SAS tool. 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. There are two benchmarks associated with this outcome measure: one relating to patients with an absent or mild score, and the other relating to patients with a moderate or severe score. Phase records must have valid start and end scores for it to be included in the benchmarks.

    3.7–3.8 Change in distress from breathing problems. Breathing problems is a common symptom reported by patients receiving palliative care. In 2015, PCOC introduced this outcome measure to routine reporting. The change in distress from breathing problems is measured from the start of a phase to the end of the same phase. There are two benchmarks associated with this outcome measure: one relating to patients with an absent or mild score, and the other relating to patients with a moderate or severe score. Phase records must have valid start and end scores for it to be included in the benchmarks.

    3.9–3.10 Change in 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. In 2015, PCOC introduced this outcome measure to routine reporting. The change in family/carer problems is measured from the start of a phase to the end of the same phase. There are two benchmarks associated with this outcome measure: one relating to patients with an absent or mild score, and the other relating to patients with a moderate or severe score. Phase records must have valid start and end scores for it to be included in the benchmarks.

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
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 clinicians and subsequently dispensed in community pharmacies (or, for Section 100 drugs, by 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. The need for this type of care is identified in the complex health-care domain of the resident’s ACFI appraisal.

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).

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/RBS subsidised prescription is where, for those items listed on the PBS/RPBS, a government subsidy is applied when the cost of a dispensed medication exceeds the patient co-payment. The PBS and RPBS covers any gap between the full cost of the medication and 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
Prescriptions where the medication is on the PBS/RPBS schedule but the patient co-payment covers the total costs of the prescribed medication so the effective subsidy is zero. Private medications, where the medication is not on the PBS/RPBS schedule, are not included in this tabulation.

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.