Tag Archives: grief

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

Those who go; those who stay

A large proportion of my life is spent within the walls of the hospitals of North East London. But when I’m not at work, I can often be found in one of London’s fantastic art galleries. Art is essential for my personal wellbeing, and a great way to dissociate myself from the trials and tribulations of being a doctor.

But every so often these two worlds collide.

Those who go

A few years ago I went to an exhibition at the Tate Modern on Futurism. It was a fantastic exhibition, highlighting a brief but incredibly influential period of modern art. I was profoundly struck by a specific piece: a tryptych by Umberto Boccioni entitled “Farewells; Those who go; Those who stay,” now on view at the Museum of Modern Art in New York. Not only is it beautiful, but the artist effectively captures the emotions inherent in farewells. It has stayed with me ever since. I was reminded of this piece recently after a particularly emotional on call shift.

I was having a long overdue cup of tea and updating the patient list when the screech of the arrest bleep demanded my attention. I rushed to the appropriate ward and arrived in time to see the patient lose output. The team got to work quickly switching from BLS to ALS, and we attached the defibrillator to see what no arrest team wants to see: PEA, a non-shockable rhythm. After a rapid intubation and several cycles of good quality continuous chest compressions with appropriate drugs given, the rhythm remained PEA. The arterial blood gas showed no reversible causes and several poor prognostic indicators. From the information we had available we concluded the patient had died and was not coming back and we stopped attempting to resuscitate them.

There is always a strange moment at the end of an unsuccessful resuscitation as the cohesive, united team, at one within the all-consuming emergency, shifts; and becomes, once again, a group of individuals. Each one takes a deep breath, psychologically removes themselves from the situation and walks away to continue with their shift.

As I took my own deep breath and stepped outside the curtains, I became aware of the patients and relatives in the bay. I had been preparing myself to speak to the patient’s own family and explain what had happened, but I had not considered the effect on those who had just witnessed the death of a fellow patient, behind the mysterious veil of the blue curtain.

Those who stay

Those who stay

Whilst we acknowledge the loss of “Those who go” I wonder if we provide enough support for ‘Those who stay’. On this occasion, after talking to the family directly affected by the death I went to speak to each patient and relative in the bay and tried to offer some comfort and reassurance. They had many questions, and I was not able to answer them all due to confidentiality. But it did open up the opportunity to talk about life and death. It led to a particular patient expressing his worries about his own diagnosis, and the opportunity for me to clarify the information we had available on his prognosis.

Talking to the patients and relatives who witness a cardiac arrest is not my usual routine, and it is unlikely I will always have enough time to do so. I know that nurses often fulfil this role but I wonder whether as clinicians we are guilty of relinquishing our responsibilities and not providing effective holistic care. I searched for evidence of the impact on hospital inpatients of witnessing death, and interventions to support them. I found very little. One study looked at hospice patients, and another patients with schizophrenia: quite specific and different populations. My knowledge in this area thus remains in the realms of anecdote.

In the 1912 catalogue of the Futurists, they claimed ‘We thus create a sort of emotive ambience, seeking by intuition the sympathies and the links which exist between the exterior (concrete) scene and the interior (abstract) emotion.’ This seems particularly apt as we try to navigate the emotions provoked by witnessing death and grief, and maintain control over the concrete scene of the hospital ward.

As doctors we should all aim to provide holistic care, but must consider what this really means. Holistic care extends beyond the acute illness; beyond the individual patient; to all those affected by illness: patients, relatives, colleagues and ourselves.

An invitation to An Evening with Death

Where do you want to die? How do you want to be remembered? What is it like to be present when someone dies?

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Death is a subject that it is often difficult to talk about, but is something we all have in common. On this blog I have shared some of my thoughts and experiences as a healthcare professional, having seen death, dying and grief more than most people I know. I have advocated for more open discussions about the fragility of the human body, the limits of medical interventions, and the freedom to live life to the full that might be gained from embracing it’s finite nature.

As a teacher I believe I have a responsibility to prepare medical students to deal with death and grief, and wonder whether we need new ways to do this effectively. Can sharing our experiences with the public be a learning experience for all? Can the arts and humanities help us to cross the ‘us and them’ doctor-public divide?

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On 16th May I will be hosting “An Evening with Death” with Hollie McNish, my good friend and UK Slam Poetry champion. It will be an evening of poetry, performance and discussion to support the Dying Matters Coalition’s aim “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make living and dying well the norm.” I am very grateful to UCL SLMS Public Engagement unit for supporting this event.

We hope that the evening will be thought-provoking, life affirming and fun! The event is free, but booking is essential so book your ticket now and join us for drinks and discussion at the Printworks Cafe, UCL. I hope to see you there!

For further information, I have curated some links to related events such as Death Cafe’s, Dinner with Death and other Dying Matters Events.

A Grief Encounter

Last week was particularly stressful; marked by staff shortages, anguished relatives, conflict over complex discharge processes, and pressure to create beds. The amount of time I spent with each patient on my ward rounds was less that what I, or they, would have wanted but despite coming in early and leaving late there are only so many hours in a day. In weeks like these I often feel guilty as I leave work that I am unable to give more time to those patients and relatives facing the end of life.

More than many other people I know, I am acutely aware of the fragility of life.

Modern medicine is amazing and can achieve results and outcomes that continue to astound me. The satisfaction of discharging a patient with a smile on their face after an admission for respiratory failure that looked like it might be their last; or being able to tell a patient that their cancer is curable, is difficult to describe. But even more difficult to articulate is the sense that the days in which I have the greatest impact, the days that are most rewarding are those in which I’ve had to break really terrible news, and have done it well. Such conversations require patience, time, compassion and, I used to think, empathy. I have seen grief, and its many varying manifestations. But being close to grief is not the same as understanding it and I am often aware of the vast distance between myself and a patient’s relative as we sit side by side in a quiet room after I have delivered bad news. What do I really offer in this situation? I try to communicate the medical facts clearly and sensitively, and give patients and families a sense of what will happen next. I feel sympathy, but am unsure whether I can truly say that I empathise. I have limited life experience and, thankfully, very little personal experience of death, and I find it difficult to imagine what grief feels like.

I recently read a powerful blog from a woman who had seen friends, and acquaintances experience grief, helped them through it and thought she understood. Until her father died. “That night I fought off a panicked dream of the earth falling away under my feet. I realized then, that until that moment, I had never had the right to speak.”  This acknowledgement that there is a gulf of emotion between seeing and experiencing grief is something others have identified, including physicians.

I hope that I can continue to find the time, compassion and words to help patients and their families through the most difficult times in their lives. But, selfishly, I hope that for as long as possible I maintain a degree of distance and lack of understanding and that I continue to sympathise but not empathise.

“No one ever told me that grief felt so like fear.” C. S. Lewis (1898 – 1963)