The huge public display of mourning that accompanied the death of Princess Diana in 1997 has been a source of intrigue for many writers. Kate Fox undertook detailed anthropological observations of the English, and their “stiff upper lip” attitude to grief. Kear & Steinberg‘s interpretation of the phenomenon was that the public had become more emotionally articulate in the aftermath of Thatcherism. John Archer suggested an evolutionary explanation for such public displays of grief; in non-human primates, dominant individuals are often a source of security and a focus of attention, contributing to cohesiveness within the group. Media portrayals of some individuals elevates them to such a status and their deaths are felt deeply by large numbers of people who had never known them personally. The response to the recent death of Peaches Geldof is further evidence of this phenomenon, accompanied by the interesting new slant on shared grief provided by Social Media. In America, Scott Simon‘s live-tweeting of his mother’s death captured the attention and hearts of millions worldwide.
It appears that the British are more than able to openly express grief when it relates to a symbolic public figure, or when the communication takes the form of 140 characters on a smartphone screen. There is safety and a sense of community in this form of grieving.
Yet for all of our shared public outpourings we remain resolutely reluctant to discuss death in its abstract form, or to prepare for our own deaths and those of our loved ones. Surprisingly few people have made a will (around 19% of the UK’s population) and few have discussed their wishes with loved ones, the main reason cited being that “death seems to be a long way away”.
The consequences of this reluctance to talk about death and dying are far-reaching. Of the half a million deaths every year in England, 54% occur in hospital. Of these, some will have been inappropriate hospital admissions. I recall as a student nurse seeing an elderly man admitted from a care home via A&E with advanced end-stage dementia. He had been bed-bound for several months, was unable to communicate verbally, and was struggling to swallow either food or fluids. Over the previous weeks he had become increasingly drowsy. Unsurprisingly, he had developed an aspiration pneumonia; the cause of death in almost half of people with advanced dementia. He had no living relatives, and nobody from the care home was able to be with him for his last days, which were spent on a care of the elderly ward in a busy urban acute hospital. His hospital admission and (ultimately futile) treatment with intravenous antibiotics was my first experience of an attempt at “rescue“.
Another consequence of avoiding discussions about death and dying is the potential for family disagreements and feuds during and following death. Being in the presence of death has the potential to bring out the best and the worst in people, and I have seen this in both personal and professional contexts. Deep rifts and conflicts are often confronted and resolved as patients and their families are confronted by the unshakeable reality of mortality. Conversely, disagreements about all manner of things, from ones preferred place of dying, to the funeral arrangements, are also commonplace, and a source of much distress at an already difficult time.
In an episode of the HBO series “Six Feet Under” (…spoiler alert….) an ugly encounter takes place between a woman’s family and her estranged husband after she mysteriously drowns. Her parents claimed that she would have wanted a conventional cremation, whilst her (funeral director) husband recalled a conversation in which she had said (but never written down) that she would want to return to the earth, a green burial, somewhere beautiful. In a fantastic unfolding of events, he smuggles her body to a remote wilderness where he buries her beneath a tree. He then produces an urn of unclaimed ashes from a pensioners’ funeral as evidence for her parents that the cremation had taken place.
The importance of talking about death and dying was one of the motivations in the establishment of the Dying Matters Coalition. 12th-18th May 2014 heralds the fifth “Dying Matters Awareness Week“, an event created to hold public engagement events to support changing attitudes and beliefs, and to work towards accepting death and dying as a natural part of life.
In 2009, members of the local Managed Clinical Network in Palliative Care organised an event: a polka-dot camper van was parked in Bradford City Centre and it displayed a range of resources for public engagement and discussion. This included free advice about making wills, bucket lists and accessing palliative care. A video camera was provided so that people could be recorded talking about their experiences of grief or end of life issues. Many people went to extraordinary lengths in order to avoid walking close to the stall, as if talk of mortality would somehow lead to certain death. The few who did engage, however, were full of stories; tales of good deaths, tales of bad deaths, tears, worries, memories of people who had provided expectional care and attention to loved ones in their last hours, poignant descriptions of the little things that made big differences. Once the initial ambivalence subsided, my impression was that people do want (and need) to talk about death and dying.
A “death cafe” in my home town last year was attended by many local people, ranging in age from 8 to 76, and the scope of conversation was fascinating. The “before I die” wall revealed the shared wishes and dreams of the group, ranging from the achievable “I want to lie in the sun for hours and hours” to the more ambitious “I want to be realised” and “I want to say thank you to everyone”.
It has to be said that such events can tend to attract a self-selecting mixture of palliative care professionals, counsellors, religious folk, voyeurs, and amateur thanatologists, and effort must be made to ensure they are accessible to all.
A “year-to-live” group was also started, with monthly guest speakers on a range of issues and concerns. The group was an opportunity for members to make changes in their lives; what would you do differently if you genuinely had a year to live?
Other, less successful attempts at holding Dying Matters events included approaching three large supermarket chains to request permission to have a stall in the foyer with information on advance care planning, making a will, and talking to loved ones about end of life issues Without exception, the response of these corporate giants was “no, you might upset people”.
I was met with the same response when I approached head teachers at several local schools, despite compelling evidence that talking to children about death and dying is important. 41% of young offenders have experienced childhood bereavement, compared to the national average of 4%.
For all the success of Dying Matters events (death curries, “before I die” walls etc) there is clearly a long way to go.
Fears about death and dying transcend individual cultures and strike at the heart of what it means to be human. To talk about death is to remind ourselves that our time here is finite, which brings with it both threats and opportunities. Some worry that to talk about death and dying when it is not imminent can destroy remaining hope, but talking about issues when death is palpably close can be fraught with even greater difficulties. The burden of symptoms may make it difficult or impossible to engage with complex and emotional discussions. Rather than destroying hope, some interesting recent studies seem to suggest the opposite; that discussing wishes and preferences around end of life can in fact enhance and strengthen hope and optimism.
How can we know for sure what our family might want unless we talk about it? I would like a green burial, with no stone but maybe an oak, or willow. There is a beautiful green burial site in North Yorkshire I have in mind, but I’d be equally contented in the garden, in and among the potatoes. Okay, perhaps not. My daughters have both made lists of funeral songs – I thoroughly disapprove musically, but in principle I am heartened by their engagement from a young age in acknowledging the inevitability of dying (my youngest daughter just read the last sentence and said “well, it’s natural, isn’t it? It’s a sad thing, but not a bad thing”). Actually I believe that children are often more able to talk about these issues than many adults; certainly I have found this to be case in my clinical work, in which adults protect and defend them from sad events by well-intentioned paternalism, but potentially to the detriment of their emotional well-being.
Recently a guest speaker on one of my modules was describing how after her son’s death she felt it was important to allow her children to express their grief, to see the body and to feel the reality of the loss to help them to integrate it. During this session one of my students suddenly recalled something she had long ago forgotten; that she had been prevented from attending her favourite grandmother’s funeral at the age of 7, and now – thirty years later – she experienced the loss and injustice anew.
There is a town in Wisconsin called La Crosse where around 96% of residents have made some sort of advance directive or will. The reason why this town is different to most is the influence of an energetic and driven individual called Bud Hammes. He has made it his mission to engage the entire population in creating advance care plans by training nurses to have conversations with people as a matter of course – no small feat.
There is no reason why communities in the UK can’t follow suit; changing attitudes requires positivity, energy and commitment from a range of people, not just those working in palliative care but people in social care, community groups, the arts and education, to name just a few.
Discussing dying involves hoping for the best, but preparing for the worst. Deliberate contemplation of death and dying can enrich and enhance our appreciation of living, as well as catalyse the sorts of discussions that can help us avoid some of the difficult scenarios described above. During Dying Matters Awareness week, ask, talk, discuss and debate. You might be surprised, uplifted and educated by what you discover.