This content is associated with The Open University's Health and Social Care qualifications.
Death is part of life and is something we all need to face; not only our own death, but the deaths of those around us. Yet many of us are unprepared for this major event in our lives. The COVID-19 pandemic has exposed us all to more deaths. However, those deaths were likely to be in hospital with few, if any, family or friends close by.
In this first of a series of four OpenLearn articles linking to The Ageing Well Public Talk (AWPT) Series structured around Five Pillars for Ageing Well that run every year at The Open University, we are going to discuss why we are so unprepared and what we all could do to find a different approach. Our series articles will go into more detail about how we could prepare for a death at home or in hospital and how we can prepare for grief while ageing.
Earlier in the AWPT Series we discussed Advance Care Planning presented by Barbara and Erica (you can see the full talk via this link). You can also see an OpenLearn Article, which includes a short film co-produced with practitioners and people with lived experience.
Barbara has presented on several occasions on The Ageing Well Public Talk Series, complementing the series sharing with their audiences ‘What do we all need to know and do to prepare for death and grief, advanced care planning? In 2020 and ‘What do we need to know to prepare for death and grief?’ in 2021.
Barbara, the main author of this article, has extensive experience as a nurse, therapist and manager working in hospice and palliative care for 40 years. Barbara sets the scene - “‘I write this from the perspective of a white western European mother, grandmother. I know there will be people and cultures that will have different views about how we should prepare for death, but in this series of articles I will be focusing on my thoughts about western practices, especially those I have experienced in England, UK. “
Over the last century, how we manage death has changed significantly. Death used to be commonplace and most people would have either been with someone who died or been to see someone who died as part of saying goodbye. Most deaths happened at home and not in hospital. The people who would have supported you before a death and afterwards would have come from your family, community or your faith leader. Today the people influencing you are more likely to be professionals – from healthcare professionals to those part of the funeral industry. The place you would have gone to see the person who had died was in a family home, now it is very likely to be at the undertaker’s. Rather than manage death and after care of the body ourselves, as we used to, and some cultures still do, we have outsourced professionals to do this for us, putting a protective screen between us and death.
Death has changed to an event which usually happens in hospital or an institution like a care home with only a fifth of deaths happening at home. The rituals you might have followed before death and afterwards used to be influenced by your faith or culture but are now more likely to be governed by medicine and bureaucracy. Years ago, the preparation you might have made for your death was not just about putting your affairs in order but also preparing yourself spiritually. However, today few of us will have made a will or thought about or talked about our death. Such a conversation is not easy and not always encouraged. I know my own children would rather I didn’t talk about what I might want to happen. So why have things changed so much?
There is no doubt the advances of medicine have improved our lives. Better sanitation, vaccinations and antibiotics have meant fewer children’s deaths and a longer life expectancy for most of us. Thankfully this has made death less common, but it has also affected how we think about death, as the focus of attention and conversations are more likely to revolve around treatment options and trying to prevent death. Talking about death may be seen as being negative, tempting fate or giving up. We often see words around ‘fighting’ and ‘battle’ for those who have lost the war against their disease as if death was something you can evade.
Thinking one can evade death may contribute to the last year of life being spent having frequent visits to hospital, undergoing more tests and treatment, sometimes with little chance of success. Access to good palliative care is still variable and people may fear being in pain and a burden to their loved ones. Being separated from the people we love who are dying also affects how we grieve. In the words of Dame Cicely Saunders: “How people die remains in the memory of those who live on”.
The importance of being present in those final weeks, days and hours is something people really value and those who missed that during the pandemic carry that loss with them today. I suggest that being present during that time is a gift not a duty. A gift worth talking about as we all prepare for death. But like birth, those present need to know and understand the normal process of dying.
Let’s talk about death
I believe the lack of conversation and preparation leaves people and those close to them ill-informed and equipped to decide what might be best for them. Information is power. The advantage of talking about death beforehand is that when it is happening we are bound to be swept away in a river of emotions as well as having to make potentially unfamiliar decisions.
There is a real difference between theoretically knowing I am going to die one day to knowing that I am dying now and approaching my last days.
I find it helpful to use the analogy of how we now prepare for birth. Women and their partners have fought over the last century to be informed, prepared and active partners in the event and process. As a mother you learn about the changes to your body, what could happen either with a normal birth or if there are complications. You make practical preparations and plans, often galvanising support from family and friends for those early weeks. You think how and where you want to be treated and what’s important to you.
Perhaps we could use a similar approach to death.
We are seeing changes – the start of Death Cafés, Coffin Clubs, Dying Matters annual campaign, but there is so much more we can all do, and our next articles focused on Preparing for death at home, Preparing for death at a hospital and Preparing for grief will explain how.
Atul Gawande Book - Being Mortal http://atulgawande.com/book/being-mortal/
Report of the Lancet Commission on the Value of Death: bringing death back into life - https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)02314-X/fulltext
Death Literacy is a tool developed by Sydney University to measure a community’s death literacy: how they learn and manage death and grief. https://researchdirect.westernsydney.edu.au/islandora/object/uws:56211
Vseteckova, J., Borgstrom, E., Whitehouse, A., Kent, A. and Hart, A. (2021) Advance Care Planning (ACP ) - Discuss, Decide, Document and Share Advance Care Planning (ACP ) - Discuss, Decide, Document and Share - OpenLearn - Open University