Background:

With the end in mind, families ask the “how long” question. They want to know what to expect, but importantly, how much time they have left with their loved-one. Understanding and predicting the length of time to death once the person with a life-limiting illness becomes unrousable and deemed to be imminently dying is crucial for clinicians and families. For clinicians, answers to this question will aid decision making, focus care and ensure appropriate support for the family.
 

Aim:

The research sought to determine the length of time between becoming unrousable and death.

Method:

This is a retrospective consecutive cohort study of 2449 patients between 2017 and 2021 who received specialist palliative care as hospice inpatients, or at home. 50,332 associated Australia-modified Karnofsky Performance Status (AKPS) scores were analysed. 
 

Using Kaplan-Meier survival analysis we analysed the time from the first AKPS 10 (unrousable) to death to determine the duration of patients’ terminal phase, considering variations across age, sex, diagnosis, and location of death. We examined the time from the first AKPS 20 to being unrousable (AKPS 10) to predict future decline. Survival curves were compared using the Wilcoxon (Breslow) test. 
 

Results:

From the first AKPS 10 score, 51% of patients were unrousable for longer than one day, with a mean of two days. Adjusting for covariates, the likelihood of death within four days of becoming unrousable is 80%. Four percent of outliers survived past seven days, the longest being 16 days. After recording an AKPS 20, there is 60% chance the patient will become unrousable within two weeks.  
 

Conclusion:

The research provides clinicians with confidence when responding to the “how long” question. This knowledge can be used to anticipate and plan for end-of-life care and provide families with the information they need to prepare for their loved one’s death.