More doctors should engage with arts and health

An article I co-wrote “More doctors should engage with arts in health” was recently published in BMJ careers. A longer version is below. Many healthcare professionals are interested in the arts, as part of their own wellbeing as well as their patients. It may not be clear how to align this interest with day to day work, and arts in health practice can therefore seem inaccessible to clinicians. We hope to bridge this gap with an introductory training event, the first of which will be on 30th June at the UCL Macmillan Cancer Centre, and has been approved for 3 RCP CPD points. Read more about it on the LAHF website, and book tickets via EventBrite.

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What is good health?

Doctors spend their professional lives trying to help their patients achieve good health. Although many start medical school with an idealised image of medicine as cure, most rapidly realise that despite phenomenal advances in science, cure is seldom possible. This is partly due to the nature of disease and the inevitable frailty of the human body, and partly due to the fact that none of us exist in a vacuum, and our potions and pills do nothing to change individual patients’ contexts or experience of illness. In fact ‘illness’ is almost impossible to define, as we medicalise more and more natural life processes and events. How can medicine address modern day phenomena of socioeconomic inequalities, lack of housing, poverty, loneliness, ageing, grief, disengagement from society, struggles with sexuality, or finding meaning in life? Should it? The role of the doctor has historically been to promote, maintain and restore health where possible, and to relieve suffering, and offer comfort to all. In this context, wellbeing as a concept that extends beyond a narrow definition of health becomes increasingly important. The WHO definition of health acknowledges this, and states that health is “a complete state of physical, mental and social wellbeing, and not merely the absence of disease or infirmity.”[1]

The Gallup Global Wellbeing index attempts to quantify aspects of wellbeing and compare across borders, languages and cultures. It defines five elements of well-being;

  • purpose (liking what you do each day and being motivated to achieve your goals)
  • social (having supportive relationships and love in your life)
  • financial (managing your economic life to reduce stress and increase security)
  • community (liking where you live, feeling safe and having pride in your community)
  • physical (having good health and enough energy to get things done daily)

Medicine, as traditionally imagined, only addresses the last of these. Perhaps the social and creative potential of the arts could be harnessed to support the other elements and help physicians to generate a more holistic approach to health in our patients and communities.

What is arts in health practice?

Over recent years, there has been a growing understanding of the impact that taking part in the arts can have on health and wellbeing. By supplementing medicine and care, the arts can improve the health of people who experience mental or physical health problems. Engaging in the arts can promote prevention of disease and build wellbeing. The arts can improve healthcare environments and benefit staff retention and professional development. Arts in Health practice includes a wide range of approaches, projects, disciplines and professionals. It is much broader than what would traditionally be understood as medical humanities.

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What is the evidence for the impact of arts and health initiatives?

The arts have been recognised as central to wellbeing, but there is a lack of engagement from health professionals. Multiple contributing factors include: a lack of curricular time in undergraduate and postgraduate training for arts and health; a lack of interest, expertise, and leadership from clinically trained professionals and educators; poor funding; and institutional priorities. Although many successful arts in health projects exist, with years of experience and anecdotal evidence, those trained in positivist empirical scientific disciplines demand randomised controlled trials and objective evidence of impact before they invest time, energy, and crucially money, in initiatives that may be seen as ‘soft’. This stance, and the tendency to see arts engagement as ‘an intervention’ rather than a part of a long-term personal and therapeutic activity, leads to the prevailing narrative that a link between engagement in the arts and measurable physical and psychological outcomes is lacking. In fact such evidence already exists; there are numerous examples of the measurable impact of arts on health and wellbeing [6-9], in addition to specific effects of individual programmes which include RCTs [10-12]. (Table 1). A DoH working group in 2007 recognised this and stated “the arts are and should be firmly recognised as being integral to health, healthcare provision and healthcare environments.” [13]

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Dr Gorden-Nesbitt of Manchester Metropolitan University reviewed the evidence for longitudinal effects of the arts on health and concluded “Taken together, the research demonstrates a positive association between engagement in high-quality arts activities and life expectancy, disease resistance, (and) mental acuity .” Possible mechanistic explanations include enhanced social capital, psycho-neuroimmunological responses, and epigenetic phenomena [6].

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Why now?

Despite concerns about funding cuts to both healthcare and the arts, now is an exciting time for arts in health practice. There is increasing political interest in the area, with a recent All Party Parliamentary Group convened to explore Arts, Health and Wellbeing. The recent changes to the commissioning landscape are highly relevant. The Health and Social Care Act (2012) established Health and Wellbeing Boards with a remit of improving the health and wellbeing of their local populations. They have strategic influence over commissioning decisions across health, public health and social care, and offer potential for more cohesive, less silo-ed working. Importantly they have a remit to consider the social inequalities within their area, which remain huge determinants of health. Virchow famously stated “Medicine is a social science, and politics nothing but medicine at a larger scale.” [14] And as Dr Gordon-Nesbitt reflected “Whilst the arts and health inhabit two distinct policy areas, and the particularities of each field needs to be borne in mind, both health and the arts are inherently political. It follows that arts/health is a political movement…” [6]

How can you get involved in arts in health?

Having been won over to the inherent value of the arts, and the specific value of arts in health, how can you learn more and get involved? A number of options are open to you, dependant on your personal interests:

  • Seek out information on local arts in health projects and take the opportunity to see them in action (the LAHF directory is a great place to start)
  • Read more about Arts in Health, and the evidence base for enhanced health and wellbeing (see references below)
  • Attend an event such as Medicine Unboxed, or Creativity and Wellbeing Week, to meet those involved in the field and find out more about the huge diversity of organisations and activities
  • Contact your Trust’s arts manager/co-ordinator and find out what is happening locally
  • Consider how you could incorporate the arts and enhance teaching you already have responsibility for, at an undergraduate or postgraduate level
  • Advocate for including the arts in service reviews, whether this be participatory projects, physical environments, or arts therapies. Use examples of other projects, including The Kings Fund’s “Enhancing Healing Environments” to help your case.

For those with a particular interest in the field new ways to engage need to be developed. The London Arts in Health Forum are developing an introductory course for health practitioners who wish to learn more about the theory and practice of arts in health. The first of these will be on 30th June at the UCL Macmillan Cancer Centre and has been approved for 3 RCP CPD points. Read more about the event on the website and book tickets via EventBrite.

As Sir Peter Bazalgette, Chair of Arts Council England said, ‘When we talk about the value of arts and culture, we should always start with the intrinsic – how arts and culture illuminate our inner lives and enrich our emotional world. This is what we cherish. But while we do not cherish arts and culture because of the impact on our social wellbeing and cohesion, our physical and mental health […] they do confer these benefits and we need to show how important this is’. [6]

By facilitating front line health workers to become better equipped and engaged with arts in health, we can start to open opportunities for more individuals to reap the benefits of the arts, in all its forms. This has the potential to enhance life for us all: doctors, patients, public, and society at large.

  1. WHO. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June 1946, and entered into force on 7 April 1948.
  2. Bircher J. Towards a dynamic definition of health and disease. Med. Health Care Philos 2005;8:335-41.
  3. Saracci R. The World Health Organization needs to reconsider its definition of Health. BMJ 1997;314:1409-10
  4. Department of Health. (1999). SavingLives: Our Healthier Nation. London: Stationery Office, (Cm 4386): 159pp.
  5. Smith R. Spend (slightly) less on health and more on the arts. BMJ. 2002 Dec 21;325(7378):1432–3.
  6. Gordon-Nesbitt R. Exploring the Longitudinal Relationship between Arts Engagement and Health. Available at: https://longitudinalhealthbenefits.wordpress.com/ accessed 20/09/15
  7. Arts Council England, The Value of Arts and Culture to People and Society: An Evidence Review (London: Arts Council England, 2014).
  8. Bygren, L. O., Konlaan, B. B., & Johansson, S. E. (1996). Attendance at cultural events, reading books or periodicals, and making music or singing in a choir as determinants for survival: Swedish interview survey of living conditions. BMJ: British Medical Journal, 313(7072), 1577.
  9. Bygren, L. O., Johansson, S-E., Konlaan, B.B., Grjibovski, A.M., Wilkinson, .V., & Sjöström, M.‘Attending Cultural Events and Cancer Mortality: A Swedish Cohort Study’, Arts & Health, 1, no. 1, March 2009, pp. 65–6.
  10. Iwasaki, Y., Mannell, R. C., Smale, B. J., & Butcher, J. (2005). Contributions of leisure participation in predicting stress coping and health among police and emergency response services workers. Journal of Health Psychology, 10(1), 79-99.
  11. Särkämö, T., Tervaniemi, M., Laitinen, S., Numminen, A., Kurki, M., Johnson, J. K., & Rantanen, P. (2014). Cognitive, emotional, and social benefits of regular musical activities in early dementia: Randomized controlled study. The Gerontologist, 54(4), 634-650.
  12. Petrie, K. J., Fontanilla, I., Thomas, M. G., Booth, R. J., & Pennebaker, J. W. (2004). Effect of written emotional expression on immune function in patients with human immunodeficiency virus infection: a randomized trial. Psychosomatic Medicine, 66(2), 272-275.
  13. Department of Health. Report of the review of arts and health working group. London: Department of Health, 2007.

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.   

Finding the words

Making and documenting good decisions about CPR (cardiopulmonary resuscitation) and treatment escalation plans, that are truly shared decisions, is a challenge. I find that the challenge comes from a number of factors: intrinsic difficulties of talking about the possibility of death in a largely death-denying culture; the great diversity of beliefs, wishes, and level of preparation for such decisions amongst patients; difficulties in facing my own mortality and the ways in which personal situations may affect my professional abilities; navigating tensions between hope and acceptance; and additional complexities that stem from having such conversations in the context of an emergency hospital admission. In the midst of a busy shift, faced with distressed people who are in pain, sometimes it is hard to find the words.

A number of recent cases have highlighted concerns about the process of resuscitation decision making and documentation. In particular, people have been distressed by the fact that DNACPR (do not attempt cardiopulmonary resuscitation) orders have being placed in their records without an explicit discussion with either them or their family. The High Court Ruling on R (David Tracey) vs 1) Cambridge University Hospitals 2) Secretary of State for Health forced the medical profession to face up to residual paternalism in this area of practice, and to make changes. It prompted some important reflections amongst individuals, teams and institutions and I have seen a noticeable difference in practice since the ruling, which reinforced the legal duty to discuss decisions about care with patients, particularly DNACPR decisions.

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DNACPR discussions provide an opportunity to engage patients in informed decision making. This requires an awareness of what CPR is and what determines success. Unfortunately there is a wide gap between the practice and success rates of CPR on television, and reality [1,2]. Worse still, this gap has widened in recent years [3]. With this backdrop, it is essential that discussions between healthcare professionals and patients and their loved ones are open, honest, realistic, supportive and clear. A number of reports have questioned whether the processes and documents we use currently are adequate to support such discussions. For example The Health Select Committee’s enquiry into end-of-life care reported:

“We recommend that the Government review the use of DNACPR orders in acute care settings, including whether resuscitation decisions should be considered in the context of overall treatment plans. This Committee believes there is a case for standardising the recording mechanisms for the NHS in England.”

This has led to the development of a newly designed Emergency Care and Treatment Plan. The Resuscitation Council (UK) is currently holding a public consultation on this document and the information provided alongside it. Documents and guidelines have an authority and power that should not be underestimated; their language and structures shape our behaviour and frame our interactions. It is essential, therefore, that the panel considering new documentation on decisions regarding treatment during serious illness get it right. But what does ‘right’ look like? I have read the proposed document and it is has clearly been drawn up with good intentions. There are several aspects which would improve clarity and communication. However, the language used at the heart of the document leaves me concerned. I can see the benefits of widening the question beyond a yes/no decision on CPR, to encompass overall priorities for treatment. But, for me as a potential patient, and as a doctor in its’ current form the wording doesn’t capture the essence of these decisions in a way that will positively support clarity of communication.

Following discussions on CPR and other interventions, what I hope to capture in my documentation is the values of the patient, and any lines that they do not wish to cross. The current proposal requires a decision between three options:

ECTP options

Although I could fit in any discussion to these categories I worry that they do not prompt and support relevant choice and accurately capturing the priorities of patients and their families. Most people’s priority is to get better, but this is not always possible or realistic. Who would not want to ‘consider’ all treatment to prolong life if framed in this way? I am concerned that the  alternative options are too broad and therefore do not really help in this area of complex decision making. Although of course the document would be part of wider, more detailed discussions, these key headline categories could be a hindrance rather than a help in this process. I have suggested that the panel consider stronger wording and tentatively suggested:

  • The over-riding priority is to prolong life, and all treatment options, no matter how invasive would therefore be accepted.
  • The priority is to prolong life, but not at the cost of quality of life. Some interventions would not be accepted (see below for specifics).
  • The over-riding priority is quality of life, therefore interventions which may prolong life but at the cost of quality of life would not be accepted. Care should be focused on symptom control, comfort and dignity.

These are in some ways subtle changes, but for me these statements are clearer and give a better sense of priorities, prompting documentation of more specific details. They also bring to the fore the real chance of harm from invasive interventions and ensure this forms part of decision making. I do not imagine everyone will agree, and I don’t think this formulation is perfect. I would be very interested to hear what others feel about the proposal. 

The consultation closes at 9am on 29th February. Please consider submitting a response, particularly if you are a patient or carer. We need many voices and perspectives to make sure we find the right words and get this right.

  1. Harris, D., & Willoughby, H. (2009). Resuscitation on television: Realistic or ridiculous? A quantitative observational analysis of the portrayal of cardiopulmonary resuscitation in television medical drama. Resuscitation,80(11), 1275-1279.
  2. Hinkelbein, Jochen, et al. “An assessment of resuscitation quality in the television drama Emergency Room: Guideline non-compliance and low-quality cardiopulmonary resuscitation lead to a favorable outcome?.”Resuscitation 85.8 (2014): 1106-1110.
  3. Portanova, J., Irvine, K., Yi, J. Y., & Enguidanos, S. (2015). It isn’t like this on TV: Revisiting CPR survival rates depicted on popular TV shows.Resuscitation, 96, 148-150.

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.

Would I lie to you?

Most days at work pass in a blur of clinics, referrals, ward rounds, meetings, emails and phone calls. But work as a doctor is more than tasks. It requires a repeated, brutal confrontation with the realities of pain, suffering and illness; with humanity itself. At the end of the day I am sometimes left with emotions and questions that I can’t leave behind at the doors of the hospital. I have often felt poorly equipped to approach the grey areas of medicine that no textbook or Google search can answer. And so this year I signed up for an introductory course in Philosophy.

Last week our topic was moral philosophy which attempts to answer questions such as “how should I live?”, “what ought I to do?” We began with a discussion on whether it is ever right to lie.

Life imitating art

I was surprised when, early in the discussion, one of the class asserted that doctors lie all the time, particularly about poor prognoses and impending death. They expected doctors to lie to patients if asked if they were dying, and seemed to accept this. This resonated as I recently faced exactly this situation. I was asked by a patient if he was dying, and I answered honestly, ‘yes‘. He died the same day. His family were extremely upset and challenged me over what I had said. They felt I had hastened his death by taking away hope, and that I had no right to divulge this information without their consent.

I have thought a lot about this patient, my response and his family’s feelings. Was I right to answer honestly? Did he really want to know? Is there any truth in the assertion that removing hope hastens death? Is false hope of any value? Is it ever right to lie to a patient?

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Would would Kant do? 

Philosophy offers some possible answers. Kant’s deontological theory asserts that it is always wrong to lie as we have a duty to tell the truth. This is true whatever the consequences. Kant believed that people have instrinsic worth or ‘human dignity’ through being uniquely rational agents, capable of freely making their own decisions. Lying does not give people the respect they deserve and robs them of their human dignity as it prevents them from exercising their rationality. Also, since I would not want to live in a world in which lying was commonplace, I should assert the maxim ‘do not lie’ and act in accordance with this.

From a Kantian perspective, therefore, I did the right thing in answering my Kantpatient honestly, even if that may have hastened his death and caused distress to his relatives. Most people find Kant’s absolutism challenging. Life is complex and nuanced and always telling the absolute truth inevitably causes harm which could be avoided. Our class quickly cited many examples of situations in which it seemed morally right to lie and we questioned whether that was because Kant was wrong, or whether we were too weak to live out our convictions.

One problem with a duty-based moral framework is that different duties may be in opposition. If I have a duty to both tell the truth and exhibit compassion, which should be prioritised if I believe they are in conflict? How do I decide which is the ‘higher‘ duty?

Consequences

An alternative approach is consequentialism, born from utilitarianism. Jeremy Bentham and his followers assert that the only question you need to ask when deciding on the best course of action is “what will bring about the greatest happiness and the least pain?”

benthamOne challenge to utilitarianism is that we can never truly know what will happen as a result of our actions. However, we can seek out all available evidence to help us make likely predictions. Every decision we make in life is based on the information available to us at the time, rather than absolutely all information known to man.

After reflecting on my patients’ family’s words I searched for evidence on whether knowledge of terminal illness shortened prognosis. I have heard many anecdotal tales of patients living for a few extra days or weeks in order to witness some important personal event such as a wedding, a birth or a final farewell with a relative flying in from abroad. I had not heard much discussion of patient’s rapidly declining after having frank discussions on prognosis.  A literature search did not reveal anything that helped me answer the question. It was therefore challenging to weigh up this potential harm as a result of my actions.

One consequence of lying that is more predictable is that it leads people to make decisions based on false information. In this case, it could have prevented my patient from saying important last words and seeking resolution, forgiveness or solace from friends and family. It is difficult to put a value on this but many who write about their own terminal illness cite the importance of these conversations at the end and I would not want to rob someone of this opportunity due to a paternalistic vision of ‘protecting them from the truth’.

As Freud said:

“The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

When is a lie not a lie? 

Interestingly, defining lying may not be as simple as it first seems. Sam Harris’ definition highlights that deceit is a necessary condition:

‘To lie is to intentionally mislead others when they expect honest communication’

This made me think. Did my patient expect honest communication? Or was he looking for me to collude with him in false optimism? I place a high value on hope but do not believe in giving false hope and in this case all my education and experience told me that this patient had days left at most. I like to think that I am sensitive to cues and that in this case he truly did want to know. In fact I realised that very few people ask “am I dying?” directly. Forming the words and uttering them aloud must take courage, and I think almost all of those that muster sufficient will to ask do genuinely want an answer. I am careful never to answer subtle, side-stepping queries too directly, and to try to match my language to that the patient chooses to use. It seems I already attempt to assess whether my patients expect honest communication, without having thought about this aspect of our relationship before.

We can never know what a patient’s true intention is when they ask us for truths no-one really wants to hear. But I think starting from an assumption of patient autonomy, and therefore responding with honesty is the morally right thing to do.

Doctor, know thyself

We must also be careful not to fall into the trap of imposing our personal values on those for whom we care. Personally, I would always want to know the truth, however hard it might be to hear. I value autonomy and my ability to act rationally based on all available information above almost any other right or virtue. But this is not so for everyone. In my quest to be honest and avoid paternalism I must be careful not to do harm by giving too much information too fast.

The philosophical physician

My foray into moral philosophy has not provided me with any definite answers to my original questions about whether I was right to tell my patient he was dying, or whether it is ever right to lie to a patient. But it has provided a framework through which I have been able to question and defend my actions – to others and, more importantly, to myself.

As I left the hospital this week I felt just a little more content, thanks to the wisdom of Aristotle, Kant, Bentham and Mill. Philosophy has a lot to offer physicians. I intend to open my mind.

 

Further reading:

Parallel lives

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I am immeasurably proud of the NHS: the most successful model of healthcare the world has ever seen. If anyone within my earshot suggests that privatisation would be a step forward they rapidly regret it. But even I sometimes get a wake up call: a stark reminder of the absolute necessity of the NHS, and the horror we may face if the political right’s dream of marketised healthcare is realised.

On a recent shift as the Medical Registrar I received a call from an A&E doctor who wished to discuss a patient who had suffered a stroke. I was surprised as all patients with strokes are channelled into the acute stroke pathway: assessed and treated by a dedicated team and admitted to a specialised unit for consideration of thrombolysis; specialist investigations; and early physio, speech and language therapy. However the A&E doctor explained the situation and I agreed to admit Maria*.

I sat by Maria’s bed in the Medical Assessment Unit, and listened as she told me her story. She was a UK citizen who had been living and working abroad. Whilst at home one day she had suddenly experienced weakness on the right side of her body and her speech had become slurred. She was rushed to hospital and diagnosed with a stroke. In the healthcare system she found herself in she was not assessed for and offered thrombolysis. She had to provide a payment method as soon as her initial assessment was complete and the bills began mounting from there. With every test and treatment she was offered she faced an impossible decision: could she afford what was being offered in monetary terms; and could she afford not to have it in health terms? This trade off had devastating effects. She did not have intensive physiotherapy, speech and language therapy. She did not have relevant investigations. She did not receive the best, evidence-based treatment.

By the time she received advice from the British consulate, and was helped to return to the UK for ongoing care, she was significantly disabled. On arrival to our hospital she had dense weakness with stiffening of the limbs leading to pain. She was wheelchair bound and struggled to get from chair to bed without assistance. Her speech remained impaired, making it difficult to communicate her wishes and needs. We admitted her to a medical bed, and the next day the specialist stroke team began working with her to regain as much function as they could. She has a long journey ahead.

If Maria had been at home in the NHS she would have had world class healthcare. She would have been assessed for thrombolysis. She would have had early physiotherapy, speech and language therapy and nutritional interventions. She would have been able to focus all her energy on her recovery and not worry about mounting debts. She would have embraced every test and treatment offered by her medical team, who themselves would have been focused entirely on her needs, not the financial state of their department. 

I watched in horror as the NHS was dismantled by stealth through the Health and Social Care Act. I wrote fervent letters, I shouted, I demonstrated, but to no avail. I often wondered why there was so much apathy from doctors of my generation. A recent article, by a Guddi Singh, who I went to medical school with, suggests some reasons including: a lack of understanding of health politics; being fooled by government rhetoric on the “choice” and “clinician-led” agenda; fear of rocking the boat, especially with a lack of organisational support (from the BMA and RCP who were noticeably silent about the proposed reforms); and a wish to just get on with the job. Doctors have a proud history of advocacy, but this side of our role does not get enough attention in modern medical school curricula.

We have only begun to see the effects of the devastating changes of the Act. As the NHS is systematically cut, ground down and sliced into pieces for private gain it will only get worse. I never want to work in a system in which the first person a patient in need sees is a cashier. I never want to work in a system in which patients trade financial ruin against health and wellbeing. I never want to make decisions about a patients’ care based on cost, rather than need. I never want to see another patient like Maria, and I never want her story repeated right here in the UK.

This can’t be the future. We can’t let it happen. I will be joining Guddi’s call to action and fighting tooth and nail to keep the NHS in the hands of the people, rather than the corporations – the friends of the political class. Markets are not the answer to questions around sustainable provision of high quality healthcare.

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* names and other details changed to protect confidentiality