Tag Archives: compassion

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.

800px-Tree-bud-lexington-ky-park

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.

Apple-Tree-Flowers-©-French-Moments

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.

The LCP is dead: long live the LCP

Last weekend I was on call in hospital and cared for George,* a patient who was entering the last stages of life. George was no longer conscious so the Consultant and I spoke to his family, discussing which interventions to continue and which we felt were no longer benefiting him. Later in the day I reviewed George and found that he had developed respiratory secretions and was in some distress. I stopped his intravenous fluids, prescribed medications to treat his symptoms and reached for the Liverpool Care Pathway. And then I stopped. In the context of the recent press coverage and the LCP review what should I do?

hold hands guardian image

Image from The Guardian

More Care, Less Pathway

Last week the Independent Review of the LCP was published, entitled “more care, less pathway.” It has been greatly anticipated by those inside and outside healthcare, as the LCP has become a focus of polarised views on both the concept of the LCP itself, but more often it’s alleged misuse. The LCP is an approach to care including a complex set of interventions, developed to replicate within hospitals  the standard of care for the dying found in many hospices. But in recent months the LCP has been called “The Death Pathway” amidst claims that is has been used to hasten death and free up beds. News of financial incentives for hospitals to ensure best practice standards were met were misrepresented in the press as cash bribes for death pathway. 

LCP review report cover

During the recent press attacks on the LCP, many doctors and nurses spoke out in support of it, highlighting the fact that this is how they would wish to be treated at the end of life. Those who witness death are often more accepting of it’s inevitability and form strong views on what they want for their own last days and those of their loved ones. I publicly defended the LCP and signed the letter myself, and so I was initially disappointed that the report calls for the phasing out of the pathway. It seems counterintuitive that poor implementation and poor communication could lead to wholesale rejection of a set of standards that I have seen work so well in practice.

What’s in a name?

But on reading the report in full, I have to accept the thoughtful reflections of Baroness Neuberger. The most important people at the centre of the recent discussions are dying people and their families. For many of them the LCP is now too badly tarnished to be of comfort, and the term “pathway” is unhelpful in this context. We must listen to the evidence in the report, and be willing to find ways to move forward, striving for ever better care of the dying.

The report alludes to the fact that guidelines and standardised care plans are not worth the paper they are written on if they are not implemented professionally, expertly and compassionately. I couldn’t agree more. But I worry that without the LCP, staff who are inexperienced and under-confident in recognising and treating end of life symptoms will be left without clear guidance, and patients will suffer. We must not let that happen.

The report calls for a number of changes, at an individual, local and national level: better communication between healthcare professionals and patients and their families; specific clarification of the benefit and risks of artificial hydration and nutrition when someone is dying; education and training of all staff in acute hospitals; greater accountability; clearer documentation about patients’ advance care plans, and enhanced record sharing between primary and secondary care; and “a national conversation about dying.”  Until we are able to discuss death openly as a society, with all it’s associated pain and uncertainty, those of us trying to support patients and families at this crucial time will continue to struggle to provide the best care. In the end this is not about protocols, it is about people.

The LCP is dead: long live the LCP

So, what did I do for George during his last hours of life last weekend? I did not complete the paperwork that would have formally put him on the LCP, but the decisions I made were identical to those I would have taken a month ago. The LCP was always designed to be a ‘personalised care plan’: it highlighted the need to communicate well with patients and relatives; and it provided guidance, not rules, on the use of artificial hydration and nutrition. I did what I always do: whatever I could to ensure that my patient died in peace, surrounded by his family. Easing his symptoms was perhaps the most important thing I did all weekend. 

“Good care for the dying is as important as
good care at any other time of life.”

So while I lament the passing of the LCP, I will be forever grateful to those who created it; those who made high quality care of the dying in our hospitals a priority. I will continue to do what I can for any patients in my care who are dying. I will listen to their priorities, involve them and their families in crucial decisions, use all my professional knowledge and skill to ease their symptoms and be honest and compassionate.

I encourage you all to think about your priorities for your final days, and to contribute to a long overdue “national conversation about dying.” We must all play our part in making living and dying well the norm.

* name changed to maintain confidentiality

The human touch

I recently took a group of medical students to see Mrs Cole*. She was 88 and was in hospital due to a severe exacerbation of COPD. She was kind enough to let us talk to her and listen to her lungs, despite being quite breathless. As we talked I perched on the edge of the bed and, as I often do, held her hand.  She grasped it tightly and wouldn’t let go. I finished the teaching session, sent the students off to their lecture, and stayed with Mrs Cole longer than I had intended. It felt like she was clinging to me as we talked; clinging to my youth, my health, and my carefree existence.

I couldn’t offer her much: we were treating her exacerbation but no drugs could reverse her lung damage. No words could allay her very real fears for the future. But I felt what I could offer – a tiny piece of my time, and my hand to hold – meant something.

As my friends will attest I am no alternative medicine advocate, but it would be arrogant to suggest that there is nothing beyond the knowledge of ‘modern medicine.’ Thinking about Mrs Cole’s reaction I wondered if we underestimate the power of the human touch: the literal, physical connection of one person’s skin on another’s. Hospitals are dehumanising places and as doctors we put up barriers to protect ourselves from the daily site of pain, disease, and suffering. We are in danger of slipping  into an ‘us and them’ mentality, compounded by the differences in socioeconomic status and educational experiences of the average doctor and average patient. We examine and investigate people in a clinical and efficient way and try to fix them. But many patients we see, especially in general medicine, cannot be ‘fixed.’ They have chronic diseases that they will live with for many years. In all honesty, more often than I’d like to admit our treatments do very little to alter disease trajectories. I sometimes think a dose of compassion is a more effective intervention than any drug. The question examined in Intelligent Kindness, is whether NHS staff, in the current climate, have any compassion left after experiencing little themselves.

Despite the challenges, I see hope in the relationships we form in healthcare settings. The system around us shouts about targets, procedure times, and new-to-follow-up-ratios. It demands quality, without articulating what that is. But in the midst of this we find quiet moments of human connection, where people let their barriers down, hold hands and share an understanding of a shared human experience. ‘Us and them’ becomes ‘us’.

Kindness is something that is generated by an intellectual and emotional understanding that self-interest and the interests of others are bound together, and acting upon that understanding

A literature search on the effects of human touch disappointingly reveals little. A review article in The Journal of Holistic Nursing explores a conceptual model of intentional touch and highlights some relevant studies. It uses the term ‘touch hungry‘ to describe those individuals who are seldom or inadequately touched in a safe or appropriate way. They are often marginalised individuals: due to poverty, homelessness, age or disability. They may be separated from family and friends, or segregated from society because of stigma and fear. Healthcare professionals will be familiar with these groups and their complex needs. Some nursing practices, which can be as simple as providing hand and foot care, encourage the use of intentional therapeutic touch to offer comfort and promote healing as part of holistic nursing practice.

An interventional study by Moon & Cho, 2001, explored the effects of nurses providing handholding for patients undergoing cataract surgery. The study authors suggested that comfort touch conveyed empathy, had a soothing effect, reduced anxiety (as measured by patients subjective experience and by adrenaline levels), and provided both the nurse and the patient with a feeling of increased security. The authors encourage touch as an intervention because “it is a noninvasive, harmless, inexpensive, and easy to perform and because the patients’ responses to the intervention were very positive“.

Edvardsson et al. (2003) discusses the importance of intentional touch for the professional, in the context of caring for older people. The authors suggest that when nurses provide intentional touch to patients they perceive themselves as valuable as people and professionals, and feel a power inherent in the kind of touch that eases suffering. In addition, the experience of intentional touch has the potential to transform the way in which the nurse regards his or her patients. Rather than seeing a demanding patient, Edvardsson suggests that the use of intentional touch helps the nurse see the patient as a human being.

These descriptions are interesting, but they are limited by subjectivity and reporter bias. In a search for more concrete evidence of the therapeutic benefits of touch I came across a review ‘The skin as a social organ in Experimental Brain Research, which “situates cutaneous perception within a social neuroscience framework by discussing evidence for considering touch…as a channel for social information.” The authors present data which they suggest indicates that specialised pathways for socially and affectively relevant touch may begin at the level of the skin with specialised nerve fibres. They also explore evidence for  higher processing of social touch sensation in specific brain areas such as the insula and orbitofrontal cortex. Of course such reductionist approaches have their own limitations when we examine such a complex phenomenon as the physiological, emotional and social effects of human touch.

Abraham Verghese, an Infectious Diseases physician articulates the power of touch specific to the doctor-patient interaction in his TED talk on the ritual of the physical examination. In this context the examination’s function is not to detect signs of disease, but to communicate compassionate and, he argues, this has a transformative effect. The ritual is cathartic and comforting and allows the  doctor to communicate a message to the patient: “I will always be there. I will see you through this. I will never abandon you. I will be with you through the end.”

I’m not sure where these thoughts should lead. I certainly wouldn’t advocate for NHS-funded touch therapy in place of other more evidence-based approaches, and clearly such an intervention could never be implemented on a large scale since the care-givers would need to truly feel the compassion they were trying to convey. But compassion, empathy and the human touch are central to holistic care, and it is worth reminding ourselves of their value. It comforts me that other physicians understand the power of this dimension of care, despite the difficulties in generating empirical evidence of its effects. Human touch can communicate in ways that go beyond the limitations of language, and articulate kindness more powerfully than any other action.

As GP Dr Jonathan Tomlinson says “Kindness in healthcare is how we communicate with and relate to our patients, our colleagues and ourselves. It is much more than how we listen, it is how we feel and how we respond and it is part of the culture we share.

I hope that should I ever cross the divide from physician to patient, that someone will communicate their compassion through more than words; that they will take time to listen, to understand, and to hold my hand.

* name changed to maintain confidentiality

When the lights go out

Most people I know have never watched a person die. Even those that have been to funerals and therefore have seen and been in physical proximity to a body, have rarely been present at the moment of death. The moment when in the eyes of the dying person the lights go out.

I have been there, in the moment, a number of times and remember every time with eerie clarity. Sometimes I have known the patient well; other times I have only met them in their last minutes or seconds. Sometimes it has been almost ethereally peaceful. Other times it has been frantic, chaotic or distressing despite our best efforts to treat end of life symptoms. Most often it has just happened.

Jean* had been admitted from her nursing home with end-stage dementia and multi-organ failure and was clearly in the last hours of life when she arrived in the emergency department. I admitted her in the morning and was passing through the medical assessment unit a few hours later and felt the need to pop in and make sure she was comfortable. There was a stillness in her room that felt anticipatory. I offered to stay whilst the healthcare assistant went to attend to another patient and so happened to be sat by Jean’s bed when she died. She was calm and comfortable. When the moment came it felt like the world paused for a moment and held its breath, while she held hers, then exhaled as she breathed her last breath.

And then the world continued on, with one less person in it.

Each time I have had this experience I have felt the same incredulity at the enormity of the moment. Whether I apply a philosophical or a religious framework, I struggle to grasp what happens when everything that makes up the person; their memories, actions, impact, emotions, beliefs are suddenly gone. The contrast between the significance of the event, and the undramatic way it often occurs, never fails to astound me.

When I know that one of my patients is dying I always feel an urge to check on them rather more often than is clinically necessary. Somehow I feel a responsibility to make sure they are not alone for the final moment. I know that many nurses share this feeling, but I sometimes wonder who we are really there for. Are we fulfilling an unwritten societal contract that means we must ensure no individual has to face the abyss alone; or are we, the living, reasserting our own vitality by forcing ourselves into close proximity with death?  I know many nurses who, whether religious or not, still insist on opening the window after a patient has died to “let the soul out,” as part of a ritual ingrained in them during their training. Even the confirmation of death by a doctor, which mandates checking pupil reactions, palpating for the pulse, and listening for heart and breath sounds, feels part of the ritual. In a busy shift this necessary pause feels appropriate to mark the fact that the world has lost another individual. The need for ritual at the end of live is pervasive across ages and cultures, but in an era of high expectations of healthcare we seem to struggle more with the inevitable than ever before.

“For the love of God,” Damian Hirst

We need a greater acceptance of the body’s physical frailty and a more realistic view of the limits of medical intervention. We need to find a more tangible connection with all stages of the circle of life, despite our sanitised and secularised society. We need to embrace the fact that the inevitability of our own mortality sets us free to live in the moment. As Wittgenstein noted “eternal life belongs to those who live in the present.”

I intend to make every day I have left count, before the lights go out.

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)