The indicator of companionship at death reflects the negative connotation of dying alone and a general fear of a bad death.

The end of life questionnaire item to measure this indicator is: Was anyone present at the time of death? Yes, close friend(s) or relative(s) Yes, close friend(s)/relative(s) and staff Yes, staff No Don't know.

If calculating a negative outcome (i.e., lacking companionship at death), the numerator would be calculated as the proportion of patients lacking companionship at death. The inverse would be used if calculating a positive outcome (i.e., presence of companionship at death).

The proportion of patients with the negative outcome lacking companionship at death is calculated as the total number of "NO" response to the EOL question/total number of people with "YES" someone present at the time of death divided by the total number of deaths recorded in given time period excluding any "don't know responses". The proportion of patients with the positive outcome receiving companionship at death is calculated as total number of " Yes close friend(s) or relative(s) and/or staff"/total number of people with "No" to EOL question divided by the total number of deaths recorded in given time period excluding any "don't know responses".

The end-of-life questionnaire (ELQ) is the main source of register data in the Swedish Register of Palliative Care (SRPC). The ELQ is completed by healthcare staff after the death of a patient and focuses on the last week of life. Registration in the SRPC is web-based, but some units first complete a paper version of the ELQ which is later used to complete the web form. Limited other details were available in English about data collection processes for the measurement of this indicator in the Swedish Registry of Palliative Care.

Public reporting.

Multiple sources:

palliativregistret.se/media/2ptn1rx4/d%C3%B6dsfallsenk%C3%A4t-220101-engelsk.pdf

Schelin ME, Sallerfors B, Rasmussen BH, Fürst CJ. Quality of care for the dying across different levels of palliative care development: A population-based cohort study. Palliat Med. 2018 Dec;32(10):1596-1604. doi: 10.1177/0269216318801251.