Tag Archives: care

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

Lonely this Christmas

I love Christmas. But I occasionally find myself in a moment of loneliness in the midst of all the crowds and music and noise. When I see pictures of friends with their newborns, home just in time for Christmas; hear couples conspiring about the perfect present for each other; or catch the refrain of a song and am reminded that no-one is thinking “all I want for Christmas is you” the sparkle loses it’s shine. Being in the ever diminishing demographic of single 30-somethings can be lonely. But these moments are fleeting. I’m soon reminded of how much love surrounds me as my Mum calls to double check when my train is getting in, my brother texts to ask whether vegetarians eat gravy, and my friends email checking who is bringing the Gin at New Year. I know how lucky I am and how full of people my life is, and I was reminded of this on my last day of work before the Christmas holiday.

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Ron* was a patient I had previously met in clinic. He had severe COPD and lung cancer for which he’d opted not to have treatment. He was admitted the week before Christmas with breathlessness and we were treating him for an infective exacerbation of COPD. We were fully staffed and the team had the ward under control so there was time to do what I wish we could do more often: sit and chat. Ron was recovering slowly from his exacerbation but still feeling very breathless. He couldn’t walk more than a couple of steps before having to stop and rest. I suggested he would probably need to stay with us until after the weekend, and asked what his plans were for Christmas. He didn’t have any. No family. No friends. He, like so many other invisible members of our communities, would be having Christmas dinner for one. He had, over the years, lost those he cared for and been left alone. I said it was just as well he didn’t have plans as he may need to stay in hospital for Christmas this year. He agreed all too quickly.

I used to think it would be the most awful thing imaginable to be in hospital at Christmas. And for some this is true. But hospitals are bright, warm places, full of caring people. Every member of staff working this Christmas will do their best to spread some cheer, and give out an extra ounce of compassion to those they see. And for those people who have no-one; who might otherwise be alone, ill and afraid; hospital might be the best place to be.   

The NHS is there when no-one else is. It is part of, not only an ideal, but a reality of which we should me immensely proud: the welfare state. As a country we do not value our state services enough. They are not perfect, but they are wonderful.

I worry about the increasing pace of NHS privatisation. Who will be there for those who have no-one in a profit-driven system?

All I want for Christmas is the NHS to survive. Perhaps 2014 is the year to take action to make sure this happens…

Keep our NHS public

What’s in a name?

At work recently I felt like a broken record. “What’s their name?” I said again and again with increasing frustration as I received calls about patients who were referred to as “bed 3,” “side room 1,” and “bed 9.”

Of course, at times it is convenient and even desirable to omit a patient’s name in a conversation. It was suggested on Twitter that it may be better to overhear what ‘bed 9’ needs rather than ‘John Doe is ready for his haemorrhoidectomy,’ and in this case I agree! My worry is that in most cases there is no explicit intent to maintain confidentiality. Instead the convenience of referring to people by their bed number slips into routine communication. I have certainly been guilty of this myself. I worry that this is not merely disrespectful, but that it contributes to the dehumanising experience of being a patient, and negatively impacts on the doctor-patient relationship.

There are many factors that contribute to dehumanisation in hospitals. It is often not the fault of individuals, and I would certainly not suggest any of the nurses I work with are uncaring. Instead the environment and structures inherent in the way we work create an “us and them” divide where healthcare workers and patients are in different tribes. This extends to factors as simple as the clothes we wear, an example of “deindividuation.” I am always amazed by the dramatic transformation when a patient puts on their own clothes as they get ready to leave hospital, having previously only worn a generic hospital gown. They miraculously turn into a “person” rather than a “patient.”

Image from: http://healthland.time.com/2010/02/09/designing-a-glamorous-hospital-gown/

The design of hospital gowns is practical but does not enhance dignity

A recent paper by Haque and Waytz “Dehumanisation in medicine: causes, solutions and functions” explores this idea further, identifying a number of contributing factors, considering simple solutions, and also exploring examples of necessary and unnecessary dehumanisation. An example of necessary dehumanisation is that it reduces physician burnout: if I felt the same intensity of empathy for every patient undergoing a blood test as a typical non-healthcare worker would, I would be overwhelmed and unable to do my job. But there are many examples of unnecessary dehumanisation that we should identify, expose and address to ensure they do not affect how we think of, and care for, our patients.

Although as individuals we may aspire to a partnership model with our patients, our structures rarely facilitate this, and there is a danger that we see patients not as individuals but as tasks to be ticked off. I am much less personally interested that “bed 9 needs a cannula,” than I am that “Eve’s cannula has tissued again and she really needs her iv fluids.” And when I think about constructing a management plan, I am much less likely to take the time to explain my clinical reasoning and involve the patient in decision making if I think of him as “the PE in bed 3″ rather than “Bob, the lovely history teacher who has a PE.”

If and when I become a patient I want my medical team to treat my as an individual, consider my personal context and experience of illness, and integrate this into their decision-making process. I do not want to be referred to as “bed 2.” I realise that as a Medical Reg I would embody ‘the nightmare patient’, but something approaching this true partnership model should be what we aspire to for every patient, not just those (like me) who explicitly demand it. Many things need to change to achieve this ideal including; better data sharing with, and ownership by patients; better public and patient education allowing valuable discussion about trial data and the value and limits of evidence-based medicine; and a dramatic change in our IT structures such that they enhance rather than impede communication across arbitrary boundaries of primary, secondary  and tertiary care.

We should work to achieve system changes, but they will take time to implement. We can take immediate personal responsibility for our own actions and our own role in dehumanisation in healthcare.

A statement in Haque and Waytz’ paper that particularly hit home was:

“Medical education and training should also incorporate practices that allow physicians to emphasize the common humanity they share with their patients, specifically their shared mortality; illness narratives; and vulnerability to disability, suffering, personal loss, and other forms of uncertainty”

I am a passionate advocate for a strong educational focus on our common humanity, and for the power in sharing personal narratives, thoughts and uncertainties as professionals with the aim of demystifying and disempowering the role of “the health professional.”  I suppose that is one aspect of what this blog has tried to achieve. By sharing my personal experiences and exposing my doubts and flaws I hope to show the human side of my role as a doctor.

I have been inspired by NHS Change Day to consider what small changes I can make in my own practice that will improve the lives of my patients. I will be pledging to re-humanise my personal practice of medicine, by always using patients names as a constant reminder of their individuality. I hope that hearing  “bed 9 wants to see you” will become the exception rather than the rule. You can make this happen. Pledge with me

NHS Change Day