Dying in the 21st century is complex, and as we enter the third decade we continue to experience massive shifts in our way of life, not only in politics and economics but in health. The health challenges of the 21st century range from climate and ecological breakdown and its inevitable effects on our individual and collective health; the intensification of a global mental health crisis; the rise of antimicrobial resistance and ageing populations declining over longer periods with neuro-degenerative diseases such as Alzheimer’s. All of this is placing unprecedented strain on our existing models of care. Is the problem, as Madeleine Albright once put it, the fact that “we are taking 21st century challenges, evaluating them with 20th century ideas and responding with 19th century tools?”
The late-20th century idea of managing health, death and dying through personalised care buckles under the weight of necessary interaction with various health and care systems formed from 19th century models of care, such as the charitable community hospice or the disease-focused hospital. These institutions served us well when being in the community meant we would receive much poorer care, or lower our chances of survival when we were ill, but this has changed. As Allan Kellehear has pointed out, people spend only 5% of their time at the end of life with healthcare professionals. With more people dying in care homes, the number is set to double to around 40% in 20 years time. This shift means that home carers will need to deliver nearly 70 hours of care per week in the last three months of life.
In order to meaningfully transform our relationship with death and dying – to make it more human-centred, socially-connected and interconnected – we need to take a more relational approach to end of life that encompasses the wider, non-medical ecosystems of care. In other words, we need to take a systemic approach to end of life care.
This is the work I do.