Continuing Bonds… or why David Bowie and archaeology have more in common than we think…

By Lindsey Buster, Post-Doctoral Research Assistant

Death has been in the news a lot since Christmas… Indeed, a recent Radio 4 survey revealed that more ‘celebrities’ than ever have passed away in the three months between January and March 2016 (http://www.bbc.co.uk/programmes/b076prgl#play). Celebrities are in the news a lot, and a lot of what happens in their lives seems a world away from our daily lives. But death doesn’t just happen to celebrities, it happens to everyone.

I am an archaeologist at the University of Bradford, and it was against this backdrop that I found myself at interview for a new project (Continuing Bonds; http://www.bradford.ac.uk/ContinuingBonds) which will explore the benefits of using the past to facilitate discussions around death and dying in the present. Just like the abstract world of ‘celebrity’, it might seem that what people did in the past has little relevance in our modern lives. But death doesn’t just happen to us, it has happened to everyone who has ever lived. It is so fundamentally a part of life that it is something that has been experienced by every one of our ancestors and will affect every one of our descendants – as it will us.

Archaeology (and ethnography) allow us to observe the many ways in which people (and cultures) have, and continue, to deal with the painful but inevitable. Even a brief exploration of the evidence shows that the traditional mechanisms by which modern western society deals with death (i.e. swift removal of the body from sight and relatively swift burial/cremation, without further interaction with the individual) is not the only one, and in fact represents a relatively recent and unusual phenomenon. Furthermore, ‘death’ is often not the taboo subject which it seems to have become for us.

Since death is very much a part of life, it seems strange perhaps that is avoided as a topic of conversation. As such, decisions about what happens to a person after their death (the individual themselves, their belongings, their memory) are often left until the last moment, made after their death, and/or made by someone other than the individual (and their loved ones) entirely. By talking earlier (and more openly) about death – perhaps even long before the inevitable happens – individuals and their families can take greater control over their futures (both while alive and after death). But how to broach such a topic?

Just as celebrity seems abstracted from our own lives, so too is the past. It is this very fact which allows discussions about the past, and the ways in which past societies (who may have lived very different lives but who faced the same existential issues that we do) dealt with death, to open up discussions of our own mortality.

On 15th January 2016, five days after his death, Dr Mark Taubert (a Palliative Care Consultant at Velindre NHS Trust, Cardiff) wrote a piece on David Bowie for the British Medical Journal blog (http://blogs.bmj.com/spcare/2016/01/15/a-thank-you-letter-to-david-bowie-from-a-palliative-care-doctor/). The piece was a thank you letter, despite the doctor never having met this celebrity stranger, the death of whom had a profound effect on him and his patients. Below are just a few excerpts…

‘At the beginning of that week I had a discussion with a hospital patient, facing the end of her life. We discussed your death and your music, and it got us talking about numerous weighty subjects, that are not always straightforward to discuss with someone facing their own demise. In fact, your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation… We talked about a good death, the dying moments and what these typically look like… I believe this was an aspect of the vision she had of her own dying moments that was of utmost importance to her, and you gave her a way of expressing this most personal longing to me, a relative stranger.

In the run up to my interview I found the similarity between what I was reading in this blog, and the aims of the Continuing Bonds project startling. When the blog speaks about ‘your death’ and ‘your story’ it refers to David Bowie – a named (and well-known) individual – though personally disassociated with either the doctor or the patient. Nevertheless, discussion of this relative stranger facilitated conversation of a very personal and often taboo topic between another two relative strangers. What then do the deaths and stories of our past ancestors have to offer us in the present…

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Burial with grave goods, courtesy Sabi Abyad project, Leiden University

The Continuing Bonds Project is funded by AHRC and is a collaboration between Dr Karina Croucher (University of Bradford; PI), Prof. Christina Faull (University Hospitals of Leicester NHS/LOROS), and Laura Middleton-Green (Faculty of Health Studies, University of Bradford). Dr Lindsey Büster is a researcher on the project, who will be investigating different attitudes to death in the past. The project will run workshops with health professionals in Bradford and Leicester, using archaeological and anthropological (ethnographic) case studies to encourage discussions about death and dying in contemporary society. To hear more about the Continuing Bonds Project, please visit our website (www.bradford.ac.uk/ContinuingBonds), follow us on Twitter (@CBondsStudy) or join the discussion (#ContinuingBonds).

How we use the tragedy of death to create life for the future.

My name is Joanne. I am the Research Nurse for Ethical Tissue (The Human Tissue Bank at the University of Bradford). When I first started this job 2 years ago, I was already familiar with death and caring for the dying patient (I have been a nurse for almost 10 years).

However, I was used to death from a ‘caring’ perspective; ….the heart breaking conversation, the restraining of tears, the watching of a family in anguish kind of caring. I would stay with the family for hours, trying to make sense of this gut-wrenching situation with them. Especially in the Intensive Care setting, the family often had no time to prepare for what I could see was round the corner.

And I would have to prepare myself too.

This job is different.

Death is still very present but it can now be life affirming. Most people know about Organ Donation and how it can be fundamentally life-saving. However there is far less awareness about Tissue Donation for research purposes and this is something that I am hoping to change….. In donating a loved one’s tissues for research I strongly believe and have seen many times that families take great comfort in knowing that their loved ones are helping millions of people and future generations to come.

“Tissue Donation After Death” is an initiative that I have set up and developed in the past 2 years. My role is to promote Tissue Donation as something that can be offered to those people who want to find something positive in death, or those who cannot for whatever reason be organ donors.
Only 1% of people can be organ donors whereas 99% of people can donate tissue for research (only HIV/Hep b preclude this)

Small ‘marble’ sized amounts of tissue (not usually whole organs) are taken from one or more areas in the body. This tissue is then optimised, anonymised and given to researchers so they can gain a comprehensive overview of diseased and healthy tissue. This helps them to develop early diagnostic tests, better treatments and cures for life-limiting diseases such as cancer, diabetes, Alzheimer’s, heart, lung and skin disease just to name a few.
There are no delays to any funeral plans, the donor can of course still be viewed in the normal way by the family and the donation is done respectfully and ethically. We organise the transfer of the donor to the facility and of course return the donor to their desired funeral home/resting place. This is at no charge to the family.

Because we only take tissue samples which are useful to researchers (i.e. we don’t just store tissues in dusty jars on shelves in our labs!), there is no set number of tissues to be donated. Every case is individual and we will talk through with the donor/family what they would be happy donating. Some donors want a specific tissue to go to help fight a specific disease they may have e.g. cancer. Some are happy for us to take several different tissues and put them into multiple research projects.
I am trying to give people another ‘choice’ after death and so I think by introducing this topic into the wider public domain, encouraging people to talk about their wishes and provide them with a basic knowledge about this service, they will hopefully be empowered to take control over their end of life decisions. Like choosing a special song, cremation of burial… it can be viewed as another decision to make along the way. Death cafes are a wonderful way of doing this… of talking, being honest and open and confronting the thing that may scare us the most.
Perhaps unlike much else in life… this is something you have in common with everyone.

Absolutely everyone.

It is important to find a way to talk to people about the inevitable… to make them feel ok about what will happen, give people the power to choose what they want and to provide them with everything they may need to make their’ end of life’ wishes come true.

I joined the planning group for all the wonderful events that take place at the University of Bradford to help provide this to our community.

Death should not be looked upon as the end of the road but perhaps the beginning of an amazing journey into helping researchers find early diagnostic tests, better treatments and cures for many life limiting diseases and in essence helping your grandchildren to live longer, healthier, happier lives.

Fallon reflects on why she joined “Let’s Talk Death”

My name is Fallon Scaife and I am in the final year of my adult nursing degree. I have spent many years working in elderly care and I have been offered a job working in elderly medicine with a special interest in Dementia care for when I qualify. I became involved in the let’s talk death group because I wanted to understand more about supporting people who are dying and their loved ones. One of the biggest challenges faced is being able to have open and honest conversations about death. I have found this is something that is not always approached correctly by professionals and can have a massive impact on care. I had never heard of a death café before and was not sure what to expect from it, but we managed to create a safe space in which many conversations took place. I was surprised at how open people were to talking about death and dying. This made me realise that perhaps professionals do not always feel comfortable to broach the subject with someone who is facing death rather than it being the person themselves who does not want to talk about it. Being involved in last year’s death cafes helped me when I was given a palliative care placement as I found that it really helped me to have more open conversations with people who were facing death and I feel that I was able to support them better.

I am looking forward to being involved with this year’s death café as we are focusing how people in our community face death and dying. This is because I had an experience of looking after a Buddhist family whilst on my palliative care placement and found that I had no awareness of their beliefs surrounding death. It was only when I looked things up afterwards, that I understood why the body was not to be moved for at least 8 hours following death and why there had been so many people there when the person died. I was not aware that in their culture, the amount of people who were around them when they died showed how well respected they were and that not moving the body allows the spirit to pass into the afterlife. I feel that having this knowledge would have improved the care I provided to the family following the death, as I would have had more understanding of what the family may have expected from the professionals looking after them. I am hoping that following this year’s death café and conference I will understand more about how death is approached differently by everyone living in our community.

#HelloMyNameIs Kate

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Hi, my name is Kate Palmer and I have a background in teaching and community work. I am currently in my final year of the mental health nursing degree at the University of Bradford, with an interest in recovery-oriented practice and psychological and creative therapies.
My interest in ‘Let’s Talk Death’ comes from being moved to explore questions, thoughts and feelings around death and dying. Death is a part of life, so why is it so difficult to talk about? In the struggle to make sense of and meaning from our experience, how do we relate to our beliefs about death, ourselves and each other? How we can acknowledge and connect through our shared experience of loss and how we can gain strength and rise from crippling grief with insight and hope?
The idea of a Death Café appeals as a safe, gentle space to talk about whatever we want about death and dying. It’s about being part of a conversation, where it’s perfectly ok to sit, listen and reflect over a brew and cake. I like how the conversation moves around subjects; about arranging a funeral, showing a photograph of a loved one, a funny story at a funeral, an aspect of grief. I like to talk about death as an important part of life and that’s why I am involved in ‘Let’s Talk Death’.

Hello, my name is Dorcas

My name is Dorcas and I am a newly qualified staff nurse working on a busy respiratory ward. I first became involved with Let’s Talk Death during an End of Life care lecture when I was a student nurse at Bradford University. Laura Middleton-Green (our lecturer) mentioned death cafes – almost in passing – and instead of asking “what is a death café?” (which would have probably been a good idea) I asked, “can we do a death café?”… and so Let’s Talk Death was born. I didn’t really know anything about death cafés, but I was very intrigued by the whole idea. In both my personal and professional life I have experienced times where communication around death and dying has been a definite downfall in people’s care – whether that be the care we, as health professionals, provide for our patients, or the care and concern we have for our own friends and family at the end of their life or at a time of bereavement. Being involved with the death café has introduced me to new ideas and perspectives, opportunities to meet new people and to access information and resources that I might not otherwise have even known existed. My confidence in talking about death has definitely grown, and this enables me to have open and honest conversations with people about death and dying – both at work and at home. We all care for somebody and for ourselves – and communication is the cornerstone to good care. Communication about death is no exception. As a society, we’ve hidden death away over the years, we don’t see it or speak about it in our everyday lives. But it hasn’t gone away. Attending death cafes or engaging in conversations about death doesn’t mean that you want to die, or that it will happen any sooner, but it can help to make it a more normal and natural thing. And death is, after all, one of the most natural things in the world.

Marjorie’s Story

Marjorie joined the “Let’s Talk Death” group after last year’s conference and is taking an active role in planning next year’s event.  Here, she shares her own perspective on loss, coping, and enduring bonds.  She wishes to tell her truth here.  
My parents died within 2 years of each other in 1983 and 1985.  I am an only child who was brought up to recognise my family as the primary source of support and the default place.   I had friends and am pleased I didn’t buy in to the default position completely.  I’ve now lived longer without them than with them. It took until after my husband died in 2013 to let go or get over the loss of my parents. I am now working to coping with the single life once again.   I have a lot of wonderful friends.  My friends are helping too with the heritage of keeping or hoarding as our house became the place things came to. It was a mixture of books and papers from academic lives and ‘things from family back to the 1800’s.
Now I have been streamlining the possessions but also find I have no focus on why. I can live with things around because  this has been so all through my life. I feel it is all salami slicing and made harder by me wanting things to be cherished and used if I do part with them. I have kept memories and items from my married life and am working on a purposeful weekly schedule. 
I was my husband’s carer and we fulfilled his wish to die at home and not in hospital. It was a privilege to look after him.   Even in the dark days he had his routine and he cherished life.   I would like to feel that way but I see very little purpose any more. I don’t want to be a burden to my friends and I’m used to my own company, so I partition off the general world.  
Marjorie, 2016

Let ‘s Talk Death – who are we and why are we here ?

In this collective blog, some of the organising team of Let’s Talk Death share their reflections on why they chose to get involved in planning events for Dying Matters Awareness Week.  We welcome comments and thoughts – on the blog or via Twitter @letstalkdeath
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Laura Middleton-Green, Lecturer
I’d originally planned to be a midwife. A placement in oncology on my nursing training changed all that, and I have been working in palliative and end-of-life care ever since I qualified as a nurse. I’ve always been interested in how different people are in relation to their attitudes towards mortality, how beliefs, faith, fear, attachment and love all influence how we face our final journey. And as a Vipassana meditator, I firmly believe that thinking about death can enrich our appreciation of being alive in the present moment.
It was around the time that my close friend Josh died in a bicycle accident that I became involved in Death Cafe, finding myself with nowhere to “be” with the thoughts and feelings of grief. A small event found people gathering with all sorts of different stories, instantly connected through their shared experience of mortality and loss.  I recall a close friend telling me that when her mother died she suddenly felt as though she were adrift on an ocean in a boat with no oars, yet suddenly realised that there were millions of others who were also adrift on the same ocean – she hadn’t noticed them so clearly before her own experience of loss.
I have attended or organised numerous Death Cafe-type events – in Berkhamstead, Hebden Bridge, Huddersfield and Bradford.  Something magic seems to happen in those spaces – it appears to me that death is not necessarily taboo, it is just that there is no natural space in which it can be talked about – we live in a world where all efforts seem to be going into developing the technological wisdom that allows us to live for longer and longer, we insure ourselves against every eventuality as though we can somehow fend off the inevitable. In this world, death has no dominion. Yet it does – as anyone who has been affected by bereavement will know.
After a series of lectures on palliative and end-of-life care a group of enthusiastic students began toying with ideas about what we could try at the University. Thus, “Let’s Talk Death” was born. Our first series of events in 2015 included a week-long Death Cafe in the Richmond Building, University of Bradford, and a half-day free conference. After this we agreed to continue plans for the following year, and this was made much easier by the generous donations of those who attended the events. We are now actively planning events for May 16th-19th 2016 and are keen for people to get involved – you don’t need to have any particular work-related interest in the area, and staff and students alike are most welcome to get involved. There are a range of levels at which you can participate – from baking cakes for the Death Cafe to designing our new logo, coordinating visitors to the University at the conference on 16th May, or writing a blog about your own personal experiences of loss that might help others who read it. The group are inclusive, respectful and creative. This year we are delighted that participation has extended beyond the University, with Nick Baggio (Marie Curie Chaplain) and Roz Roberts (Hospice Volunteer and Zen Buddhist) joining the group.  We are also working closely with local community organisations Pushing Up the Daisies and Calderdale Dying Matters Partnership.
If you are interested in getting involved, do get in touch: L.Middleton-Green@Bradford.ac.uk
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Ghost bike – Josh Phillips, Deansgate, Manchester

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Becky Barton – 3rd year children’ nurse
Death, the elephant in the room. We all know that one day it will happen, lets face it, none of us get out alive. But we choose to let the topic get swept under the carpet. Its not exactly seen an ideal conversation to have over your Sunday Lunch… “please can you pass the gravy? Oh and can I also have this lovely mahogany coffin when the time comes?”
Or is it?
My interest in issues surrounding death and dying were first brought to light when my family were given the news that my newborn cousin would probably not see her Late Teens. Complications at birth left her with a Hypoxic Brain Injury and her life expectancy was not good. The overwhelming emotion of the situation engulfed our family. Time went by and slowly we started to heal. But only because we all became comfortable talking about the fact Lucy was going to die a lot sooner than first anticipated…
I decided to get involved in the Death Cafe with the naive view that I could just help others talk about their worries. What I got out of the events was so much more than that. I saw people in varying stages of grief, had the honour of having people share their personal experiences of death, discussed concerns people had and helped people to feel more able to talk about this overwhelming topic… But I also gained so much. I left these events feeling invigorated, refreshed and inspired. I now feel more able, on both a personal and professional level, to be able to tackle death and dying head on. I feel I have a better understanding of grief and common concerns. I think everyone should experience this type of event…. Because it has been one of the most valuable learning experiences I have ever had…
(Plus there is cake!)
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Fallon Scaife, 3rd year student nurse

At the age of 18 I started my first care job in a residential home for the over 65’s. I must admit that I did not know what I was getting myself into or have the first idea of what lay waiting for me beyond those doors. As I got to grips with the job and learnt more about caring for people I started to realise that I really enjoyed the work that I was doing. After a few weeks I came on shift one night to be told that a resident who everyone really liked was dying and I suddenly realised that this was one part of the job that I had not even thought about before now. Once all the other residents were settled for the night I went to sit with the gentleman who was dying and held his hand. Even though he did not respond to me in any way I felt that he was aware of my presence and had become more peaceful because of it. I spoke to him and reassured him that I was there for him. Throughout my shift I sat with the gentleman as much as I could in between my care rounds and talked to him. When he passed away in the early hours of the morning I felt that his death had been a peaceful one. Since this experience I have been with many people during their last hours of life and this is what brought me to nursing. I like to be able to help people at the end of their lives and make their last hours as comfortable as possible.

When I heard about the death café at University I felt that I wanted to be involved with this and I found it a fantastic and challenging experience. I found myself able to offer comfort to people that had experienced a recent bereavement as I had experienced this myself in recent months but I found it a challenge when I was approached by someone with a life limiting condition. Hearing the individual speak so openly about death and what they wanted to happen after their death was difficult but it made me realise that this is why we were holding this event. Not everyone is prepared to talk about death and dying whether it is their own or someone elses. This event was to erase the stigma surrounding death in the UK and speaking to this individual gave me hope that this was a sign of things to come. I know it gave me the courage to speak about my wishes and to start putting things in place for when the time comes. I have also been able to speak about and deal with my recent personal experience because even though I have been with so many people when they have passed away it was a totally different experience for me when someone I was close to passed away.

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Kim Selby – Second year student nurse

My name is Kim, I am a second year Adult Nurse student and I live with a chronic illness. Five years ago following years of chronic stomach pains and several episodes of acute pancreatitis. I decided to have a procedure called an ERCP which looks at the bile ducts and pancreas. This procedure should have meant that I was in and out of the hospital within the day. Shortly after the procedure it became apparent that things hadn’t gone to plan and I was suffering with acute pancreatitis and my organs had started to fail. I am still unable to remember the days that followed, my family received the phone call to say that they should make the journey to the hospital and prepare for the worst. My husband and I had not had any discussions around what if or what we wanted if the worst ever happened to either of us. Laying in the hospital bed and wishing that the pain would go away and wanting the toil of the interventions to stop. Laying their and wishing my life away I suddenly became aware of the importance of those conversations. I can now say that we have had the conversation. Although it isn’t set in stone as our opinions and wishes change, we both know what each other does and does not want. I have always encouraged my children to discuss any questions they have about death, they have experienced death of their pets, friends and family members. My answers have always been honest and I feel that this has helped them to be accepting about the topic.

So my reasons for partaking in the group began with my own experience of laying on my death bed and not been prepared. Since then I have lost several people close to me, some of which we were able to plan for and these deaths I have been able to come to terms with more easily. Working on ICU allowed me to become involved in a bereavement group. The group met regularly with family and friends of those people who had died on the unit. Discussing their lives and deaths seemed to help them come to terms with their loss. Seeing how the meetings helped these people gave me the understanding of how helpful preparing for death is. On my second placement I was fortunate to hold a ladies hand whilst she passed away, unfortunately her family did not arrive in time. I felt privileged to be there and to offer comfort to the lady and her family. Her family were very upset that she had died before they arrived but at the same time they thanked me for been there.

I do believe that people should be able to die with dignity and someone there with them. I understand that this is not always possible but feel that by talking more about death, it will become more acceptable and less taboo. People prepare for the birth of a baby why shouldn’t we prepare for the death of someone? Although last year I was only able to write a blog and linger in the background, I am hoping to be more involved this year.

Rainbow rose

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Roz Roberts, Hospice Volunteer

Death – the elephant in the room?  How do you eat an elephant? In bite sized chunks. Often we only recognise the elephant when we are forced by circumstances to confront what it means to us.

If we can approach death, & dying gently & over time, & with others, we can unwrap it into its parts; (fear, grief, compassion, love, separation & loss), & we can see that death is a part of life – the ever present cycle of change. May be then the elephant is not death, but our fears; of change & loss, our wanting things to stay the same, our concerns about & for loved ones, & the difficult prospect of pain, loss of dignity, losing our abilities as we age or progress through illness or disease.

This year my younger sister died, followed shortly by my frail elderly mother. Both events were anticipated – just the timing was uncertain. It has been both enriching & draining, emotionally & physically; a time of deep human connection, of being supported, a sharing of a universal human experience.

And it convinced me that approaching & befriending death, ageing, & change, as a part of everyday life – before events force us to – enriches life & how we live it, how we share it, & how we relate to others. Sometimes the hardest part is finding the opportunity, the space, & the courage to start this exploring & sharing. And doing it in bite sized chunks.

A death cafe is a great place to start.

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Kate Palmer, 3rd year student mental health nurse

I know and understand that death is part of life. It’s been part of my life since my Dad died when I was 14. Through coming to terms with and accepting personal loss, I feel I have something I may offer to others.

I know there isn’t a script I can follow when talking with someone about death and dying. But I can listen, try to understand and be with the person. I can be human, real and myself.

As a Mental Health Nursing student, I consider it a privilege to help people through difficult times. It’s in the small acts of kindness we can connect; a smile, a cuppa, a nod, a little well timed humour…

I became involved with The Death Café to contribute to the conversation about death. And life. With anybody who wanted to talk. To remove the stigma. To dispel the myth that it’s morbid to talk about death’s inevitability. I liked the idea of sitting with a coffee, eating cake and talking about the real, messy stuff of feelings.

The conversations were so different; filled with memories of characters and stories. Yet, the feeling I remember from the Death Café was a sense of relief. People want to talk about death and dying. Even though it can be hard to start, once the conversation flows, it helps. And if it helps, maybe it can heal too.

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