Category Archives: Death

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

Critical care

I was one of the lucky ones this year and was not working on Christmas Day. After my shift on Christmas Eve I fed the cat, packed up the car with presents and headed to my brother’s house. Waiting for me was a glass of mulled wine, and a hug. Christmas Day was lovely and it was with a heavy heart that I left my family and battled the driving rain in order to get back to London for my night shift on Boxing Day. My feelings of dread were not misplaced: the shift was tough. But most of my shifts have been tough of late. I am in the midst of a six month rotation on ICU (the intensive care unit), having left the familiarity of the acute medical ward and the outpatient clinic, replacing them with a world of ventilators, alarms and intense emotions. I am used to hard work, but I find intensive care physically and emotionally exhausting. It has taken me by surprise just how difficult it is to get through the weeks and I have begun to realise that this is primarily due to a concern that not everything I am going is ‘the right thing’.

Clinicians in Intensive Care Unit

I spent a large proportion of Boxing Day night with a single patient. He was intubated and ventilated when I met him, so I found it difficult to engage with him as anything more than a body in a bed – a constant challenge for me on ICU. I spent the night watching his organs fail and escalating his treatment: I performed fluid challenge after fluid challenge; added inotropes and vasopressors and maximised their doses; corrected his electrolytes; gave bicarbonate in an attempt to improve his acidosis; watched his urine output fall to nothing and started haemofiltration. He did not improve. During the day shift whilst I was at home asleep he had a cardiac arrest. CPR was performed which led to return of a pulse. I returned and continued to try to fix his physiology, but it was futile. We all knew it. He died attached to machines and monitors: oedematous, battered and bruised. It is not a death I would wish on anyone. He had presented with an acute problem which warranted aggressive treatment but as all treatments failed it rapidly became clear he would not survive. And yet we continued. And performed CPR. And still continued. I do not know what he would have wanted, but this is not what I or his nurse wanted.

He was not the only patient I felt uncomfortable about that night. As I proceeded around the ward, inserting needles and lines, changing ventilator settings, sedating and paralysing those whose numbers were wrong, more than once I did so with gritted teeth. Many of my patients had not arrived in ICU after a sudden unexpected event like a stabbing or a car accident, but as the result of chronic disease and advanced age. More than once I asked myself whether I was saving lives, or prolonging death.

I am sure my unit is no different to any other. I am also aware that I rarely see the results of good outcomes. Some patients do make near-miraculous recoveries. Patients with severe head injuries leave the unit alive and breathing but unable to speak or walk – I do not see them after months of rehab when they are leading happy, productive lives. I also know that many of the senior physicians are expert is discussing limits of care, realistic prognoses and withdrawal of invasive treatment. But these conversations happen too late. Too many patients with chronic disease arrive in ICU without ever having considered what they would want if they became severely unwell. Too few people understand what ICU is, and what can and cannot be achieved by expensive machines. Too few people express their wishes in advance, and so the default is always to treat, treat, treat, and when there is no hope left, treat some more. A quote from Atul Gawande’s book from an ICU physician sadly rang true when she complained she was running “a warehouse for the dying.”

In this context it was with great interest that I read a number of studies into ‘moral distress’ suffered by ICU staff. Moral distress is described as the angst of feeling trapped between “what people think they ought to do, and what they’re compelled to do.” Moral distress is studied to a greater degree in nurses, and is perhaps more common in nurses than doctors, due to perceived powerlessness in the hierarchy. It is recognised that moral distress is a complex phenomena, dependant not only on an individual’s beliefs, but also the context in which he or she practices and the support structures that exist. A number of factors are contributory, including end-of-life controversies such as inconsistent care plans and families demanding that aggressive treatments are initiated or continued when all hope for recovery is gone.  Perceptions of futile interventions were highly correlated with moral distress, and increased with duration of experience in ICU.  Reading these studies was reassuring, as others experience the same phenomena as I have been, and also concerning, that such distress is relatively common. Most studies suggest processes or interventions to ensure staff can voice their concerns and feelings, in order to reduce distress. This certainly happens on an informal basis on my unit, where colleagues are open, honest and supportive, and on a formal basis during morbidity and mortality meetings (although it now strikes me that only doctors are present at these meetings). However, we do not have Schwartz rounds, or an equivalent and I wonder what effect they would have when the fundamental problem, a lack of advance care planning, still exists.

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Of course it is difficult and upsetting to talk about death. Death itself is upsetting. But we are all heading there, and not talking about it is damaging us all. Doctors need to better equip themselves for talking to their patients about what happens at the end, and what their priorities are. And patients need to feel more empowered to make their wishes known. I have met patients who want every possible invasive intervention until the second they die. I may disagree with their choice personally, but would fully support it as a professional. But I have met many more who, given the choice, have clear ideas on what they do and don’t want and where, for them, dignity and quality of life become more important than more time. I am sure a significant number of patients who have died on my ICU in the last two months would have chosen a different death.

I have four months left in ICU and a lot more to learn about ventilation modes, renal replacement therapy, and inotropes. But more importantly I have a lot more to learn about death, decision making and dealing with my own moral distress.

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?

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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

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 scarf, a suicide and a sense of perspective

I went out last night. It was cold, and just before I left the house I picked up my favourite scarf from the hat-stand. It’s my favourite for many reasons but predominantly because Miriam, who gave it to me, was wonderful.

Was.

She’s not here anymore. She committed suicide.

We were not best friends. We weren’t even really very close. She was my boyfriend’s best friend’s girlfriend. We would often be at the same social events, would sometimes have tea together over breakfast, and spent a lot of time together waiting around for ‘the boys’. Miriam was a medical student. One day, in the run up to end of year exams, she left the library where she had been studying, went home and killed herself.

Her death was a huge shock. For a long time it didn’t feel real. Even after the memorial service it still didn’t seem possible that she was really gone. I didn’t know how I was supposed to feel, what I was supposed to do or what I was supposed to say. I couldn’t work out how upset I was supposed to be, and what other people would think if I cried or didn’t cry. I couldn’t work out how upset I actually was. I was angry at her for not placing enough value on her own life. I was angry at myself for not having seen her distress. I wasn’t sure if I was close enough to her  to have a legitimate right to grief. I didn’t want her close friends or family to think I was over- or under-reacting. I had no idea how to support my boyfriend or his best friend who had been the ones who had found her and called the police. All I knew was that this was all wrong.

My feelings were coloured by guilt. I am a doctor. Many of those close to her were doctors and medical students. Shouldn’t we have known? Shouldn’t we have seen the signs? Shouldn’t we have been able to do something? When I thought about it rationally I told myself that Miriam didn’t exhibit the classical warning signs. She was an outgoing, popular, successful, busy, kind, generous woman who appeared to be happy. How could we possibly have known? But rationalisations felt weak and pointless.

I recently came across a video in which Kevin Betts  articulates some of these feelings better than I ever could. In it he makes  “the toughest speech of his life” for World Suicide Prevention Day, reading a letter to his dad who committed suicide. Kevin’s message to his Dad is  “I won’t stop.” He means it: to raise awareness about mental health and suicide he ran 52 marathons in a year. In his speech he says he loves his Dad, but also is disappointed in him as he “chose not to be here.” I struggle to know how I feel about this statement. Miriam “chose not to be here” but was it really a choice? How much control did she have over her thoughts and actions? I don’t know.

Estimates based on WHO data indicate that 1 million people a year die by suicide. The data is complex as suicides may not always be recorded as such due to social, cultural and societal reasons. Suicide attempts and suicidal ideation are far more common with 5% of people attempting suicide at least once in their life. The lifetime prevalence of suicidal ideation is estimated at 10-14%. Reports from the  ONS and Samaritans show that in 2010 there were 5,608 suicides in people aged 15 years and over in the UK, with rates highest in those aged 45–74 at 17.7 per 100,000 for men and 6.0 per 100,000 for women.

These data show that suicidal thoughts and actions are astoundingly common. It is likely that we all know someone who has had suicidal thoughts at some point in their life. Yet stigma, fear and misconceptions mean few of us realise this, and still fewer ever talk about it.

Something I found striking from Kevin’s speech was that he felt let down by health and educational institutions. I have treated countless patients in hospital who have tried to kill themselves. I feel like I let them down every time as I am so helpless  as a physician. I patch them up, make sure whatever poison they have taken doesn’t do too much damage and pass them onto the mental health team. I do not think I’m of any relevance to their life, and wish I could do more.

Kevin felt no-one wanted to talk about his Dad’s suicide. But he did want to talk, and continues to do so.

Suicide is not shameful or selfish. It is just a way to die

I think of Miriam often and can’t get past the feeling that if she could only have got through that day, and talked about how she was feeling, she would still be here. She taught me a valuable lesson: suicidal thoughts and actions are not something experienced by patients – they are experienced by people. I hope I never forget that. 

If you are experiencing suicidal thoughts, or know someone who is, please call the Samaritans on 08457 90 90 90 (UK) or Mind on 0300123 3393 (UK).  More information is available at Grassroots suicide prevention