Neurological patients show unique trajectory of functional decline in last months of life

Neurodegenerative disorders

By David Rowley

3 Apr 2019

Functional decline at the end of life shows a distinct trajectory for patients with neurological conditions compared to those with illnesses such as cancer and heart disease, an Australian study has shown.

The finding that functional decline for dementia and conditions such as motor neurone disease patients in palliative care is slower and longer than in patients with cancer, cardiovascular disease and solid organ failure points to the need target and tailor support at key ‘tipping points’, according to the authors including Professor David Currow, professor of palliative care and CEO of the Cancer Institute NSW.

Published in Palliative Medicine, the study looked at data from 115 specialist palliative care services supplied to the national Palliative Care Outcomes Collaboration for 55,954 patients between 2013 and 2015.

Researchers used the 11-point Australia-modified Karnofsky Performance Status (AKPS) scale of the patients mean scores 120 days before death. They found “two simplified trajectories of functional decline” for the five pre-identified patient cohorts in those last months based on the AKPS scores.

Cancer, solid organ failure and cardiovascular disease patients fell into Trajectory 1 while dementias and neurological conditions came under Trajectory 2.

  • Trajectory 1 had an almost uniform slow decline until the last 14 days of life when function declines more rapidly.
  • Trajectory 2 had a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life.

The flatter pattern of functional decline in the neurological and dementias cohorts with a prolonged period of low function, showed that extended periods of support would be needed to maintain patient function and support carers, the study authors said

The study findings “also codify the tipping points in the slope or rate of functional decline that enable family and health professionals to plan care more proactively for end-stage care”.

Precipitous deterioration in functional decline for cancers, solid organ failure and cardiovascular disease occurred as patients approached an AKPS of 40, meaning they were in bed more than 50% of the time.

“A key finding for clinical practice is the tipping point of an AKPS approaching 40 for cancers, solid organ failure and cardiovascular disease. This is significant if functional decline is used as a prognostic indicator as it will inform and enable responsive service provision,” the study authors wrote.

“This tipping point gives a targeted window of time when health clinicians, patients and families can prepare for the precipitous period of decline.”

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