BLOG SERIES - Dramatic increase in deaths at home - No.7

Introduction

Commencing in July 2021, the Edinburgh Napier research team have carried out qualitative data research in order to add value to the existing research by engaging with care service providers, such as care homes, GPs, palliative care hospices and home care providers. The qualitative research that we have carried out so far has involved a series of one-to-one interviews and focus group discussion.

Research

Our engagement work has contributed to our understanding of the pandemic on the frontline and highlighted two main areas: 

1. Fear

• Aspects of the pandemic, such as the restrictions on visits to hospitals, hospices and care homes, generated an increase in deaths at home due to the fact that 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 was probably because the primary driver of that was around restrictions on visitation and not being able to see loved ones.’ (Responder 4).
• Fear of contracting the virus - some families did not allow health service staff to enter their homes: ...‘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.’ (Responder 4).

2. Restrictions to Care Provision 

• Living in remote areas - in some cases it was more difficult to access the provision of 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.’ (Responder 5).
• Care packages - issues of lack of supervision or social care packages in place: …‘Currently I don´t have the data, but I know locally it appears to be a significant increase and I think this is sinister…it´s an increase in people being found dead basically at home without social care packages in place, without really oversight of the system’ (Responder 6). ...‘People are saying they felt abandoned by care packages which were withdrawn and staff who weren't able to do what they previously had been able to do. I think you know, a troubling one emotionally and I think it's something that we're going to be dealing with as a society for years to come.’ (Responder 3).

• Service users/family lived experience - ‘There is the lived experience that goes alongside the numbers'. Some responders raised concern that people looking from the outside in may perceive that 'Death at home is a good thing, isn't it? And you have to then explain to them, well, not potentially. So yeah, I think that it's a hugely important piece of work…’ (Responder 4). ...‘This burden of care largely falls on families and they've been the person who's actually had this experience' therefore it's important to find out 'what it means for that family member that's been carrying out that caring role' and also to discover what's the long term impact of that? (Responder 4).

The Future...what next?

This research has allowed us to collect ideas and recommendations for the development of a much broader study to capture the experiences of informal carers and family members with respect to care at home, in particular palliative care. The findings so far have illuminated the need for further engagement to address some of the least desirable experiences that have occurred within the palliative care provision. 

By hosting additional focus group discussions, we aim to explore the informal carer or family member's perspective of palliative care provision during the pandemic in Scotland. Once we have captured their perceived experience, we will then return to the quantitative data of the larger study, to ascertain if we can find any evidence that justifies those concerns. 

Further information

If you would like to find out more about this research, please get in touch with Yina by emailing: y.garcialopez2@napier.ac.uk. 

Author information 

- Catherine Mahoney 

- Yina Lizeth Garcia-Lopez