BLOG - An update on our deaths at home project

Increase in Deaths at Home during the pandemic

Throughout 2021, I produced a blog series that focused on the number of people who died at home since the beginning of the pandemic, and compared these to the number of deaths in hospital and care homes. I used the updated 'Deaths involving Coronavirus (Covid-19) in Scotland ' data from the National Records of Scotland (NRS) for the entirety of 2020 as well as 2021, and compared this with data of historic weekly deaths for the 2015-2019 period, from the National Records of Scotland (NRS).

Throughout the nine blog series, it became obvious that the number of people who died at home increased from 2019, compared to numbers between the 2015-2019 period.

Demographic changes during the pandemic

First I looked at the characteristics of people who died during the study period.

The average person who died at home was older, more ill (in terms of having chronic illnesses and their estimated burden), and more likely to benefit from palliative care* than before the pandemic.

The figure below shows the changes in average age, burden of chronic illness, and estimated palliative care needs, over time.

People who were older, had chronic illnesses, or died from causes where they would have benefited from palliative care, are likely to have required more intensive health care and support as they approached the end of life.

Because more such people died at home we need to ask the question of whether they were adequately supported, both by unpaid carers such as their relatives, and by health services.

For this reason, the next step is to investigate changes in patterns of service use in the last year of life.

Were people's care needs met?

Early results from the next stage of the project show that people who died at home also had shorter stays in hospital than before the pandemic and were also discharged from hospital earlier. This is worrying at first glance, but we need to understand what these data represent first.

The routinely collected hospital data that I’m using for this project only reflect what services were used, but do not directly measure the level of healthcare that was needed by the person.

A shorter hospital stay can be interpreted many ways, for example:

a) the person may have needed care of lesser intensity and was therefore discharged earlier;

b) there may have been pressure to free up hospital beds for more severely ill people, and so the person was discharged earlier;

c) the clinician looking after the person may have decided that they were able to be adequately looked after at home, and so discharged the person earlier.

In other words, it is difficult to conclude from shorter hospitalisations alone that people’s care needs were not met.

However, if we find similar patterns across multiple services, and knowing the pressure that health services were under due to Covid-19, we can tentatively conclude that some people’s needs were likely not to have been met.

Next steps for the project

To address the above, I’ll look closely at medicines used in palliative care: people may have been discharged from hospital earlier but provided with medicines to make them comfortable at the end of life.

I am also in the process of looking at social care data, to see if people who received care at home in the last year of life were more likely to die at home.

* I don’t have data on whether people received palliative care or not so instead I am using an estimate of whether somebody would have probably benefited from palliative care, based on their cause of death. For example, a person who died a sudden, unexpected death due to an accident is unlikely to have benefited from palliative care; in contrast, somebody with a terminal illness such as cancer is likely to have benefited from palliative care.