Dying well at home: Three things I’ve learnt about working with patients, carers and families in end-of-life care

In this blog, I reflect on our project on end-of-life care and discuss three points I learnt about the importance of commissioners collaborating with patients, carers and families in commissioning end of life care services.

In the project, we explored how NHS and local authority commissioners in England measure and assure the quality of the end-of-life care for people who die at home and how they identify and tackle inequalities in commissioning services. As part of the project, we held a focus group and workshop with families and carers who cared for a loved one during the pandemic. From our research we are clear that commissioners must engage with a diverse range of patients, carers, families and the wider population to understand their needs. More importantly, commissioners must ensure that people with lived experience of end-of-life care are involved in designing interventions to improve care quality.

But why is this important?

First, carers and families are better advocates when they have knowledge about what services they are entitled to and how to access them. I learnt that there is a significant difference in the services families and carers have access to: between those who have knowledge and experience due to their professional role or connections and those who did not. This was made clear during the workshop, when one of the participants shared her reflections:

'If indeed, we can access these services, we don’t have the language to get the support we need for our loved ones. In my situation, my sister works with adults at end of life, so she was a little bit ahead and understood what was going on and some of the services we could get.'

This shows the advantages that some carers and families with systems knowledge have of where and how to access appropriate services. But carers should not have to rely on their family members with professional knowledge of the system to be better advocates.

It was also clear from the research that regardless of who we are, death is something that happens to everyone and high-quality care or a ‘good death’ is what we all desire and expect. Commissioners shared with us their personal experiences of end-of-life care and they often referred to them when answering questions. For example, an NHS commissioner noted:

In contrast to carers and family members who drew from their professional experiences to support their families, commissioners drew on their personal experiences to inform their professional work.  I believe that shared experiences of end-of-life care can be a starting point for commissioners to connect with patients, carers and diverse communities and begin to break down barriers between institutions and communities.

Secondly, I was struck by the lack of clear actions to tackle inequalities experienced by minority ethnic groups, even though commissioners highlighted them as a priority group. In the interviews, we found that commissioners and system leaders are not doing enough to work with patients and diverse population groups to understand their specific needs and experiences of services.

The carers and families we spoke to were of different ethnicities, ages and backgrounds and they bonded over their desire for their loved ones to have a good death and the challenges they faced accessing services. So, the lack of actions to support these groups is concerning. I wonder if highlighting minority ethnic groups is a consequence of the pandemic and will soon pass – as organisations move on to other priorities. When commissioners build relationships with patients, carers and communities from marginalised groups, they will have a better understanding of their specific needs – rather than relying on quantitative data from national or regional sources only.

Lastly, what was profound was how poor end-of-life care quality has a detrimental effect, not only on the patient but also on carers and family members. Participants in the focus groups and workshops shared the trauma they experienced because of poor care and the subsequent lack of appropriate bereavement support after their family member died. Moreover, for ethnic minorities in the group, the lack of appropriate services compounded their trauma. I learnt that good quality end-of-life care must include bereavement support for carers and families – being sensitive to diverse beliefs and needs.

The discussions with carers and families showed that care at end of life is complex and there are many factors that contribute to quality care. If commissioners are truly interested in providing high quality care and addressing inequalities in end-of-life care, then building relationships with patients, carers and families from diverse communities is central to that work.