Skip to main content

In a good place to die? A historical perspective in Dying Matters week

Dying Matters Leeds

What does it mean to be in a 'good place' to die? We might immediately think of where a death takes place, and where we want to die ourselves. Is our home, the hospital or a hospice the best bet? But this question - the theme of this year's Dying Matters Awareness Week - asks us to consider what being in a 'good place' might mean much more broadly. The campaign focuses on encouraging everyone to plan for their death, and to share their wishes with their family and friends.

Historically, there's more choice than ever about where we can be when we die. In Britain, prior to the twentieth century, most people died at home, and had little other option but to do so. A 'good' death likely meant being surrounded by family, and perhaps being attended to by a faith leader - for most people in Britain before the twentieth century, likely a Christian minister. The expansion of free hospital care across the century and perhaps more importantly, the rise of the hospice movement, has allowed more choice about where a person might die. The majority say they would prefer to die at home, perhaps thinking of the idea of being surrounded by friends, family and a familiar environment, as would have been the case for the vast majority before the mid-twentieth century. Yet, studying these historical examples shows us that a death at home was not always an easy one. Jean Barker, for example, remembered her dad dying in 1945, a tragic loss after her two brothers had died in service during the war. Suffering from tuberculosis, Jean, aged just 12 at the time, remembered how her mother had to construct a makeshift tent over his bed to fill with steam and help him breath. Jean wondered where her mother had found the strength to cope. The family had to make do as best they could. Deaths at home could potentially be painful, they might lack dignity, and family members struggled to give the care needed for a comfortable end. Houses might also lack basic facilities: two major surveys of the 1950s found the homes of those with terminal cancer were often ill-equipped, with fewer than half having access to hot running water. Whilst housing has improved since then, that tension hasn't gone away: providing effective pain relief and dignified care can be difficult at home.

A lot of what makes a death a 'good' one is having choice and a feeling of agency over what happens. At a fascinating panel event ran by Dying Matters this week, speakers explored this theme, highlighting that someone's age, social class, sex, sexuality, gender identity, disability, race and ethnicity might all be factors which inhibit choice for both a patient and their family - biological or chosen - at the end of life. Panel speakers Ellie Harrison, of the Grief Series, and palliative care doctor Jamilla Hussain discussed how being in a good place to die meant having the language and confidence to ask for your own or a loved one's wishes to be met, and that those wishes are listened to. For far too long, end of life care services of all different types have not done enough to enable these options for everyone. Jamilla's fantastic editorial published recently in Palliative Medicine, written with a number of other palliative care specialists, calls for practitioners to work to eradicate racism in end of life care, for example.

But what history shows us is that being in a good place to die is a much broader question than this one of location. It's a question that takes us beyond planning for days and weeks leading up to a death. Memoirs and autobiographies, for example, show that being prepared for death is, among other things, often very much tied to a sense that each of us will be remembered after we're gone. Sharing memories with loved ones, a record of an individual life and the things that mattered to that person, through writing, audio recording or in conversation, can be a comforting way to feel ready for death. For Leo Crowther, born 1922, writing down his life story and sharing it with his family, as well as depositing a copy in Leeds Local and Family History library in 2012, was about his desire to 'leave more than memories behind when I quit this mortal coil'. He thought it important to share his experiences, and his wider family history, with his children and grandchildren, a wish prompted by his ill health and growing older. Finding a way to be remembered well in the longer term is another way to feel prepared for death.

This desire, to leave some kind of mark, big or small, or to be remembered after death speaks to much broader questions about whose lives matter and whose lives are properly celebrated, commemorated and recorded after death. The last year has seen a new awareness of this idea: the long-standing Black Lives Matter movement's protests in 2020 have finally been better listened to, and rightly demand that Black lives matter in both life and death. There is so much work still to do on this point. Black lives, and the lives of everyone, including all groups who have historically been and continue to be discriminated against and marginalised, must be recognised, remembered and acknowledged within the histories we tell. On a different note, the experiences of LGBTQ* people in death and how they are remembered after also reveals a big problem here. There are many examples of trans people being misgendered after death, with their lived identities being sidelined as they're mourned and remembered by biological family as the gender they were assigned at birth. Being remembered as you wish to be is not something everyone experiences. From accessing palliative care services to commemorating and celebrating lives now lost, death is a highly unequal business, with much dependent on who you are and your status.

So, there are two things to take from these conversations, and from a historical perspective. One is that there are, and have long been, deep inequalities in who gets to be in a good place to die, defined in the broadest terms. Age, race, ethnicity, disability, sexuality, sex, gender identity all affect the ability to have a good death - to have wishes fulfilled, and to be remembered as you would like to be. And by taking a longer-term perspective, looking beyond that process of dying, we can see that being in a 'good place' to die means so much more than choosing where to die, or even planning for that moment of death. It's about the right to be remembered as you want to be, for years to come.