End-of-life care and bereavement in the pandemic
Notes by Dr Gemma Hughes
12 February 2021
On 11 February 2021, Green Templeton College hosted a conversation on what is arguably the quintessential question for care and caring: how to care about death and dying?
Governing Body Fellow Professor Mary Daly welcomed Professor Keri Thomas OBE, Honorary Professor, University of Birmingham, and Dr Lucy Selman, Senior Research Fellow, Bristol Medical School, to the Care Initiative and a virtual audience of around 100 people.
Gold Standards Framework (GSF)
Professor Thomas provided the personal context to her dedication to end-of-life care, explaining how after she became a widow at the age of 25, she was inspired to found the Gold Standards Framework (GSF). The GSF aims to improve care for people in the last phases of their lives, offering a set of steps and standards to helping people live and die well. Only a relatively small proportion of people who die in the UK each year are supported by specialist end-of-life care and palliative professionals, for example in hospices; most people are supported by the generalist workforce in their last days. This is where the GSF comes in – to provide recognised training and accreditation for health and care professionals in all settings, including primary care and care homes.
The GSF has spread widely in the UK over the last 20 years and become mainstreamed with support from the Department of Health. One important outcome associated with the GSF has been the development of a common vocabulary across different service settings, this enables good communication about the provision of end of life care. There has also been an impact on policy, such as the Enhanced Health in Care Homes framework, and a broader shift in the nature of conversations about death and dying. The focus of the GSF is on personalised care which requires changing the approach of asking ‘What is the matter with you?’ to ‘What matters to you?’
An important aspect of end-of-life care is Advanced Care Planning, now a global movement to support people to consider what they want at the end of their lives, and, sometimes even more importantly, what they don’t want, for example, in terms of medical interventions.
Death and dying teach us about life and living. Professor Thomas reflected that ‘the end of life points to the end of life’, as the end of life approaches we can appreciate the purpose of life. When it comes to dying, we are advised to ‘make sure that is all that is left to do’– a thought that was reflected in a comment from a member of our audience about the concept of having a good death.
Experiences of bereavement during COVID-19
Dr Selman offered a corresponding perspective by sharing early findings from research of the experiences of people bereaved during the COVID-19 pandemic. Dr Selman’s research aims to document these experiences and to understand how bereavement support has been challenged by and adapted to the circumstances of the pandemic to inform end of life and bereavement support.
Our experiences of the COVID-19 pandemic are those of a mass bereavement event, with an estimated 6.4 million people bereaved in the last year in the UK. Within this vast number, Dr Selman acknowledged the importance each individual who has died and the personal effects on all those bereaved. The difficult experience of bereavement can be compounded by specific risk factors.
Many of these risk factors have been common during the pandemic including: poor communication between clinicians and relatives, not being able to say goodbye, people dying while intubated, perception that a loved one did not receive emotional support, loss of social and community networks, living alone, and loss of income.
Early findings from the first set of survey respondents showed that people bereaved during the pandemic have experienced high and severe levels of grief, with the most overwhelming experiences of grief associated with deaths in hospital. People bereaved by deaths from COVID-19 were more vulnerable to grief than those experiencing deaths from other causes. People responding to the survey said they needed support most with dealing with their feelings about the way their loved ones had died, being able to express their feelings and have them understood by other people.
People experienced unique grief issues because of the circumstances of the pandemic, not least due to being unable to benefit from physical contact and support because of social distancing and isolation. Technology did help some people. Meeting other bereaved people online provided a form of support for some. Video link technology has potential, but needs to be carefully managed as in some circumstances it can be traumatic for the bereaved person to have seen their loved one, for example in intensive care, shortly before dying.
Dr Selman made some recommendations to reduce the trauma of negative death experiences and reduce the risk factors of poor bereavement outcomes that we are faced with during the pandemic. Better communication between healthcare professionals and families, family visiting where possible, more provision of bereavement support, flexible ‘bubble’ arrangements for people recently bereaved could all help, as could alternative ways of collective mourning and celebration of life. Dr Selman notes the online resources that are available, for example for health and social care students and the general public from the Good Grief Festival.
Questions from the virtual audience prompted further reflections on cultural differences towards death and dying, the importance of end-of-life care and bereavement support for children and families, and the continued need to consider the role of care homes as places where many people end their lives. One audience member highlighted the tensions between the aim to support people with their personal choices at the end of life, for example, by remaining at home rather than going to hospital, with the need to provide effective life-saving treatment for COVID-19. The audience endorsed the need to have a broader discourse about death and dying and welcomed the opportunity to participate in the conversation.
Contact the Care Initiative
Further information can be requested from:
Professor Mary Daly, University of Oxford
Ruth Loseby, Green Templeton College