Body, Mind, Soul,
The aim of the project was to use national data, linked by de-identified NHI number, to provide an answer to the question: who is not reached by specialist palliative care (hospices and hospital palliative care) or by aged residential care (ARC).
This identifies the size of the primary palliative care work-load, which needs to be met by Primary Health Organisations (PHOs) and district nursing services. The overlaps and gaps in service by cause of death, place of death, age, gender, ethnicity and deprivation were investigated. The results nationally, regionally and by DHB are used to inform service development.
All deaths occurring and registered in New Zealand in 2015 were studied, with a history of health care utilisation going back ten years on most sets and 25 years for hospital events and the Cancer Registry.
The project provides an understanding of the different trajectories of care at the end of life, contrasting sudden deaths, cancer patients, chronic disease, and those with frailty and dementia.
The trajectories groups were extracted sequentially as follows:
●Dementia: anyone with any evidence of dementia.
●Cancer: no evidence of dementia but evidence of cancer from the Cancer Registry and died of a neoplasm, or cause of death was a neoplasm.
●Chronic Disease: not in the two groups above; any aged residential care (ARC) subsidy or place of death was residential care, or any interRAI assessment. These are effectively frail older people who need some assistance (in ARC or assessed for home care).
●Need and Maximal Need: all other causes of death that are included in the need or maximal need for palliative care. They may have chronic disease but are generally younger and the group includes those dying of congenital diseases.
●Other Sudden Deaths: these are typically deaths from accidents, drownings, poisonings or self-harm.
The results of the research are summarised in a series of three policy briefs. There are two technical notes which describe the methodology.
McLeod, H., & Atkinson, J. (2019). Policy Brief on Trajectories of Care at the End of Life in New Zealand.
McLeod, H., & Atkinson, J. (2019). Technical Note on Trajectories of Care at the End of Life Research.
Sub-components of the project were to advise on the feasibility of collecting a minimum data set for hospital palliative care and to identify funding flows for end of life care in New Zealand.
An extension of the research uses the same linked data sets, covering all deaths occurring and registered in 2015. In this extension we consider the daily place of care in the last three years of life (the last 1,095 days). This brief also includes projections of the trajectory groups and place of care to 2038, if patterns remain the same.
McLeod, H., & Atkinson, J. (2019). Policy Brief on Place of Care and Time in the Community at the End of Life in New Zealand.
McLeod, H., & Atkinson, J. (2019). Technical Note on Place of Care and Time in the Community at the End of Life.
A health system costing was done using the same linked data sets, covering all deaths occurring and registered in New Zealand in 2015. In this extension we consider the cost per person in the last three years of life (the last 1,095 days of life).
McLeod, H., & Atkinson, J. (2019). Policy Brief on Health System Costing in the Last Years of Life in New Zealand.
Using the Trajectories Study data on place of care each day, we can determine the number of transitions made between home, public hospital, aged residential care and hospice IPU for each person in the five trajectory groups.We have animated the transitions for each day in the last three years of life, which gives a better sense of the degree of activity.
For access to the animations, the projection model, slides of the findings and any queries, please contact Heather McLeod.