Home, family and a particular culture of care

We know that care homes have been pivotal during the pandemic. Let’s hear from Dr Katharine Scanlan about her research into end of life care in care homes.

My research study, which looked in depth at the experiences of staff working in ordinary care homes, identified the significant contribution they made to the end of life experience of residents and their loved ones. It became clear that some of those interviewed had, through a complex interweaving of personal and professional experience of death and dying, become unrecognised end of life care specialists. In speaking about their experiences of end of life care they revealed examples of caregiving that showed exquisite attunement and sensitivity to the needs of those concerned. They had a deep belief in the basic tenets of palliative care and the capacity to support and develop other less experienced carers in working with death and dying. One of the carers interviewed gives a sense of what might be involved in this process:

“You teach from your experiences, to me end of life care isn’t a text book written exam or training procedure you can learn. You learn from others experiences and you learn from the heart. You know you’ve got your textbook stuff that you’ve got to go by but for it to be such a sensitive area, it has to be from the heart”.

During the pandemic we heard of many care homes in the UK where staff left their own families and moved into the home in order to create a safe environment – kind of ‘bubble’ that would protect everyone from the risks of the virus. These workers often said things like ‘the residents are like another family for us’. This was similar to what I found in my research. Some care staff had relatives in the homes in which they worked; in their work they drew directly on their own feelings and experience of caring for their loved ones at the end of life. There was almost no ‘line’ between their personal lives and their work.

We can call this a particular ‘culture of care’ that has been largely unrecognised until now. It is as though an ‘old’ model of caring which largely took place in people’s private homes, and was the unpaid work of women for the most part, had spilled over into residential settings. The values and principles involved seem very different to the ‘medical’ model of care in hospitals. However, in some of Sharna’s videos we can hear another kind of blend of caring principles at work. She speaks about her professionalism and training, the frameworks of assessment she has to use; but she also describes the importance of being human, of touch, of taking time and building relationships as a social worker in order to allow people to speak about their deepest worries and fears at the end of life.

Amidst the shock, distress and anger involved in responding to the demands of the crisis, recorded in articles and interviews in the national press, there will have been many quiet and private moments, where the quality of care given to a dying resident will have, under the most difficult of circumstances, represented something of what we have come to consider “a good death”. These moments are mostly so quiet and private that they pass without fanfare or fuss, yet the difference made is unquantifiable.

Let’s now look in more detail about what a good death might involve, what happens when this isn’t possible, and how to balance the wish to provide a caring culture with the unique challenges of the pandemic.