Tag Archives: patient

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.

IMG_3598

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.

Screen Shot 2016-05-21 at 18.55.26

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]

Screen Shot 2016-05-21 at 18.56.00

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].

IMG_3610

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.

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.

Fall-tree-branch-leaves-along-river_-_Virginia_-_ForestWander-1021x580

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

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?

everybody lies

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:

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

What’s in a name?

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

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

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

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

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

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

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

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

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

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

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

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

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

NHS Change Day

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.