Excess deaths at home: engagement with service providers

Dr Yina Lizeth Garcia-Lopez explores finding so far, and calls for participants for study at Edinburgh Napier.

I, with colleagues at Edinburgh Napier University(this link will take you away from our website), have been exploring the excess numbers of deaths at home from non-COVID related causes during the pandemic. So far this research has been conducted through a focus group and two one-to-one interviews with service providers. We are looking to move into the next stage of our study, and would like to invite unpaid carers to share with us their experiences and the impact it has had on them. Please see the end of the article for more information.

Findings from the study so far explain some reasons behind the increase number of deaths at home:

Fear of COVID

Aspects of the pandemic, such as restrictions on visits to hospitals, hospices and care homes generated an increase in deaths at home as those patients had relatives who could support them during the final phase of their life. This decision meant that their loved ones could continue their palliative care at home in the company of their families:

‘… reluctance of people to be admitted and try to avoid being admitted – the primary driver of that was around restrictions on visitation and not being able to see loved ones.’

‘there’s been some reluctance from families to have people in the home for those fears about COVID, so they’ve waited as long as they possibly can before asking for support.’

Restrictions to care home provision

For those living in remote areas, it was more difficult in some cases to access care:

‘the care provision was much more difficult [in rural areas] because there was a distinct lack of care, such as not being able to go into people´s homes and provide the care they were doing beforehand in certain very remote areas.’

Communication

Research participants spoke of a ‘deficit in communication’ between service providers and individuals, brought about in part by the difficulties of the pandemic:

‘Staff meeting instances of real distress in individuals´ homes didn’t know who to get in contact with or if they did, the normal routes of communication were closed and this felt absolutely frustrating.’

‘The communication was fairly diffused, it wasn’t really an instruction…’

The policies of the Scottish Government

Participants felt that in the early stages of the pandemic there was not enough policy in place or planning around palliative care, end-of-life care and home care in the COVID context.

‘There was very little direction of prioritisation from Scottish Government, both clinically in terms of CMO and in terms of all of political direction, what remained an issue.’

What is next?

We would like to now explore unpaid carers and families perspectives of palliative care provision at home during the pandemic.

We are aiming to host a number of focus groups and interviews throughout November. These will be conducted online.

If you would like to find out more about our research please email y.garcialopez2@napier.ac.uk

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