Using Big Data to explore service use in the last year of life


Download Heather’s slides

Jackie Robinson writes:

Kia ora koutou,

This year has seen a new collaboration with Heather McLeod exploring service use in the last year of life. I became interested in this work after supervising a summer student who undertook a retrospective case note review of 500 patients who had died in the 2015 year. The purpose of the summer project was to begin to understand how patients accessed the various healthcare services available in the ADHB. Building on this work Heather and I have been using large national health databases to link NHI’s of patients who died in 2015 having had at least one contact with an ADHB service in the year prior to death.

During the Te Arai Palliative and End of Life Care Conference in November, Heather presented the preliminary findings from this fascinating project. interRai consists of several different assessments.  Long Term Care Facility (LTCF) assessments are carried out when someone is admitted to aged residential care, six-monthly thereafter or when needs are changing and a different level of care may be required.

Unsurprisingly, these assessments were more likely to be carried out in the older age groups. Of those with cancer, 68.7% of the assessments were Home Care (HC) assessments, designed for people with complex needs living at home and 31.13% were LTCF assessments. Dementia was high in LTCF assessments (46.8%) compared to Home Care assessments (23.6%).

“When looking at the data related to the use of aged residential care, we found 61.1% had their first admission directly into hospital level care. Of those that had their admission and died in 2015, 86.2% were directly admitted to hospital level care.”

This challenges the idea that people start in rest home level care and then move to hospital-level care as needs increase. It may also suggest that people are being supported to live at home for longer with higher care needs rather than go into rest home level care.

Aged Residential Care (ARC) by the numbers

In terms of time spent in ARC, we found that 47.4% of people spent less than one year in ARC and 66.0% spent less than 2 years.  More concerning was that for many people, the time available to initiate palliative care was relatively short with 25% of people experiencing a stay of 38 days or less. Indeed, 65 people died in the first week of being admitted and two died on the day of admission to ARC. Only 87 out of 1,214 had a full year in hospital-level care in the last year of life.

When looking at ADHB service use, that is hospital admissions and out patient clinic attendance, we found that 20.7% of people who died in ARC did not access these services in the last year of life.  The use of aged residential care in the last year of life is increasing and this study found that 47.4% of people who died in the ADHB during 2015 spent some time in aged residential care. There was a very strong pattern by age for the proportion in each age band.  For example, at age 90+, 73.9% spent some time in ARC in the last year of life, whereas only 10.8% did not have any time in ARC in the year prior to death. This is hugely important for policy work and planning capacity for an ageing population

Having worked in the acute hospital for some time, I have often heard concerns from clinicians that residents living in ARC were being admitted to hospital during the terminal phase of their illness. So, for me, one of the most interesting findings was that only 5.4% of all people who died in the ADHB during 2015 were in ARC in the last year of life but died in a public hospital. This group accounted for 11.4% of the deaths in ARC in that period.

This has been a fascinating study to be involved in and I am grateful for the skills and knowledge that Heather has brought to the project. There is still so much work to do on the data we have available yet we both know that it is already making an impact in policy and practice with presentations and results shared with to the ADHB Palliative Care Governance Group, the Palliative Care Advisory Panel, interRAI NZ and the Ministry of Health.

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