How do we measure a good death? Julie Armstrong-Wilson argues that meaningful end of life care cannot be judged by statistics alone, and that the experiences, wishes and voices of people and their families are just as important in understanding what quality care really looks like.
End of life care, defined as the final year of life, is something we will all encounter when working in the care sector. However, we know that people’s experiences of the care they receive are not always positive.
Improving end of life care is informed by the outcome measures we capture at an individual level. These outcomes include whether a person achieved their preferred place of care and death, and whether there was a reduction in unnecessary hospital admissions, bed days and hospital deaths. This is all quantifiable data and captured easily at system level, but the quality and experience of care are not robustly captured within these systems. This, in turn, fails to recognise that high-quality end of life care requires both statistical and anecdotal evidence to be truly reflective of impact. Supporting people to be cared for at home is reliant on having the relevant support networks in place, and people need to feel listened to and heard. They also need to feel safe and not feel isolated as this can have a negative impact on their experience of care. Compassion, dignity, trust and emotional support cannot always be captured in a statistic, but they are often the aspects of care that individuals and their loved ones remember as being the most important.
Proactive planning for the future gives people the opportunity to explore what matters most to them. Having advance care planning discussions, exploring people’s hopes and fears for the future, and documenting these in an advance care plan helps to guide those providing care. It also provides the opportunity to reflect back following a death to see if the care delivered was in alignment with the person’s wishes. For example, if a person was concerned about what would happen to their dog after they died, exploring rehoming options with them and ensuring their pet was rehomed according to their wishes is an example of a meaningful quality outcome. Identifying something of importance to the individual and successfully achieving it should be recognised and documented as a positive outcome.
As carers, both formal and informal, we can often assume we know what is important to a person, but unless we ask, how do we really know? Dying at home may have been their preferred place of care and death, but if they did not experience a good death at home, then it is a poor outcome.
Systematically offering advance care planning discussions during the final 12 months of life, alongside gathering feedback through bereavement surveys and bereavement and carer support groups, helps inform the development of compassionate communities, systems, workforces, and care to improve people’s experiences and outcomes. At a GSF Accredited care home, advance care planning enabled staff to advocate for a resident’s wishes when she experienced a sudden deterioration in her health. As a direct result of her preferences being recorded, the team were able to support her to remain in the care home rather than experience an unwanted hospital admission, with the potential for a long wait in A&E or receiving corridor care. The impact was undeniable. She was able to spend her final days surrounded by familiar people, in the place of her choice.
Giving our workforce the opportunity to reflect on what is important to each individual and celebrate when people have achieved the death they wanted is a measure of success. Capturing people’s experiences of care through qualitative feedback, alongside quality improvement data such as acute admissions, provides a more complete picture of end of life care. Together, these measures can inform local decision making and drive meaningful improvements.
The Gold Standards Framework is a service improvement programme that is focused on organisational change using a systematic approach to end of life care through early identification, advance care planning discussions, supporting people to live well and experience a dignified death in their chosen place, supporting families, carers and staff to identify the dying phase, understand the dying process and provide compassionate bereavement care.
GSF Accreditation enables providers to demonstrate impact through reductions in unnecessary admissions and hospital deaths, and to demonstrate the positive experiences of care, through case studies, After Death Analysis (what went well and what could be improved upon) and interviews with staff and family members about their experience of care. It empowers staff to continually reflect upon the service they provide and make improvements where needed.
If policymakers understood one thing about the impact of high-quality end of life care, it should be this: a good death is a good outcome, but achieving it requires a skilled generalist workforce whose practice is informed by both statistical evidence and lived experience.
