Tag Archives: fear

An ever deferred death

“…just as we know our walking to be only a constantly prevented falling, so is the life of our body only a constantly prevented dying, an ever deferred death.”  Schopenhauer

I first read these words two years after I had qualified as a doctor. On reading them I felt a jolt: a reawakening of a feeling that I had buried. A feeling that I ran and hid from as I spent my days, and many nights, beside people on the brink of death. Schopenhauer’s words forced me to confront the fact that I felt threatened, fearful, temporary. I felt mortal.

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Those of us who work in hospitals are witnesses to ‘a constantly prevented dying’. We react in different ways, and we rarely talk about it, but I have recognised more than once after a cardiac arrest call that has ended in death, a fleeting flash in the eyes of a colleague that screams “that could be us, we all die!’

Schopenhauer himself died in 1860, apparently of respiratory failure, and his words now seem oddly prescient. Whilst some of us still die as we did in the past – quickly and suddenly – more of us die slowly. We are given notice. We spend years, decades even, living with chronic disease. Organs fail, faculties fade, we continue to live. Caitlin Doughty, a mortician, wrote in a recent essay “Medicine has given us the ‘opportunity’ — if you want to call it that — to sit at our own wakes.”

On reading Schopenhauer’s words again recently, quoted in David Shield’s book ‘The thing about life is that one day you’ll be dead,’ I found that they did not evoke the same fear that they had before. I have spent a lot of time over the last few years reading about and thinking about death. Death as an idea, death as a process, death as a philosophical question, death as a release, death as a tragedy, death as a transition, death as a chasm, death as a right, death as a fact. I have thought about my own death. And I have talked about it. I am mortal. And this is OK.

One of the places I have talked about death is at Death Cafes. At these events, over tea and cake, I have had some of the most interesting and life-affirming conversations I can remember. I have met wonderful people, who share a vision of a world in which we make better use of the time we spend sitting at our own wakes. What this means for each of us is different. But it starts with a conversation.

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I am co-hosting two Death Cafes in the next few months, both of which are in beautiful locations, with truly wonderful people. The first is during Dying Matters Awareness Week, on Sunday 15th May at Asylum, an artist led organisation based in Caroline Gardens Chapel in Peckham. It starts at 13.30pm and is open to everyone, including families and children. There will be activities for children and space to run around. No-one should be excluded from conversations that are relevant to us all. The second is during Creativity and Wellbeing Week (run by the London Arts in Health Forum, for whom I’m a trustee), on Wednesday 15th June at The Menier Gallery in Southwark from 18.45.

You can find more information on both these events, my co-hosts, and the venues on Eventbrite, where you can also book your tickets (free but with requests for donations to the generously-donated venues).

“The present…is constantly becoming the past; the future is quite uncertain and always short.” Schopenhauer

I hope you will consider spending some of your uncertain and short future with us for these events.   

Living loss

I got to know Joseph * over a number of months. He was first admitted to hospital in April, when his bed overlooked the garden with trees in bud. As Spring turned to Summer he was readmitted, and when Autumn came he watched the leaves change colour and fall. Each time he was admitted he spent more time in hospital and less time at home, and we worried more about whether this admission might be his last.

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Joseph had been diagnosed with Idiopathic Pulmonary Fibrosis, an incurable condition in which the lungs become progressively scarred, leading to breathlessness and functional decline. Like many patients with a chronic disease, he had opted for a coping strategy that focused on living, and trying to forget there was anything wrong. This meant that despite having symptoms for a number of years he had seldom seen a doctor, knew little about his disease or its’ likely trajectory, and had shared very little with his family. When we first met he resolutely refused to talk about deterioration, or dying. Our team respected this wish, focused on the here and now, and got him home. But we all had anxieties about how he and his family would cope as he declined, and about the difficulties of putting in place the help he was likely to need if he would not talk about the future. Over the coming months, with each admission he came to trust our team a little more, enough to have these conversations and to share his fears for himself and his family. We were privileged that he let us into his very private interior world, and we were able to help him adapt to some degree to his limitations, allowing him to focus a little more on the the things that gave his life hope and meaning.

What was apparent when talking to Joseph was that he was grieving. Grieving for the life he would not have and the things he would not do and see. Grieving for the loss of independence that he valued so highly. Grieving for the self he knew and recognised that was being replaced by an unfamiliar ill person. My Consultant used the term “living bereavement” to describe this response, which felt so right. It seemed to capture the denial, anger, bargaining, depression and finally acceptance that I witnessed in Joseph as he moved through a number of emotional responses to his illness.

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Living bereavement, living loss, or chronic sorrow, was originally described in relation to parents of children with severe disabilities. It describes a state and process through which an individual suffers repeated losses due a disparity between actual reality and an anticipated or desired reality. The term has now been used in reference to adults with a number of chronic diseases including diabetes, HIV, cancer, multiple sclerosis and parkinson’s disease. No studies have focused on patients with respiratory diseases, but the principles seem highly applicable. Losses are repeated, and can be physical, emotional or social. Common examples are: loss of bodily function; loss of relationships; loss of autonomous life; loss of identity; and loss of the life imagined.

Kelly (2008) explored the concept of living loss more deeply in patients with AIDS-associated dementia, particularly the way in which people live not only through, but ‘in’ loss. She described living loss as being a “social and constituted part of liminality.” Liminality was an unfamiliar word to me, but means ‘pertaining to a threshold’ and has been applied to rites of passage such as birth, marriage, and death, as well as so called ‘marginal identities’ related to race, gender or sexuality. In this context, people experiencing chronic sorrow are said to be in a liminal space between life and death, where there is the potential for transformative experiences as well as grief.

If we are to support patients to the best of our abilities, we must engage with their individual, personal experience of illness. Ahlstrom (2007) suggests that it is important to understand and acknowledge patients’ chronic sorrow in order to support adaptive coping strategies, and to inspire hope and courage. But perhaps even more than this, we need to engage with our own, personal responses to the losses we see and feel each day. The concept of living bereavement has been explored in healthcare workers themselves, in particular in carers of older adults in a continuing care setting. Holman (2008) described how staff “articulated a trajectory of loss which they witnessed and experienced as part of their everyday work… They called this living bereavement.” Areas of particular importance were: working with shocked residents; working with grieving relatives; working with anxious residents and relatives; working with residents’ degenerating bodies and minds; and working with dying residents.

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Living loss feels like a useful concept through which patients’ reactions to chronic illness can be understood. In addition, it provides a framework through which staff can understand their own emotions when watching their patients deteriorate and die. It has certainly helped me to reflect on my own reaction to Joseph and his family, to consider the emotional burden of this work, and to acknowledge the limitations of my influence on his grieving process.

Joseph died last month. He had the death that I think he wanted; in a place where he felt safe, with people he knew. His grieving has now ended, just as his family’s has begun.


 

If you are able to please consider supporting Breathing Matters, a charity specifically set up to fund research into IPF, and support patients and families living with the disease today.

Further reading:

*names changed to maintain patient confidentiality