Tag Archives: health

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 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.

Can we find the spirit of ’45 in 2013?

Today marks a defining moment in the history of Britain, but looking around you wouldn’t believe it. Today, April 1st 2013, sees the The Health and Social Care Act (HSCA) come into force.

The death certificate of the NHS, issued by the National Health Action Party

The death certificate of the NHS, issued by the National Health Action Party

Some still believe that those opposed to the HSCA are over-dramatic, reactionary or naive. They will probably dismiss the National Health Action Party as extreme and publicity-seeking as it has issued a death certificate for the NHS, citing the cause of death as the HSCA 2013, with contributing causes including Thatcherism and the failure of New Labour. But it is difficult to see how anything but extreme statements and gestures can capture the attention of the public. Our generation is standing by as the NHS is quietly privatised and I for one am ashamed.

In 1948 the Attlee Labour government founded the NHS “the greatest gift a nation ever gave itself.” Since then it has been gradually eroded and dismantled. The King’s Fund’s infographic depressingly visualises various points of attack by multiple governments, starting with the creation of the internal market in 1989 when Margaret Thatcher signed the paper “Working for patients”. New Labour also have a lot to answer for; their PFI legacy crippling many Trusts today. But no previous government has actually tried to privatise the NHS, knowing that there would be a public outcry. Cameron and Clegg have privatised by stealth; clouding their agenda in a language of ‘choice’ ‘clinician power’ and ‘patient centredness,’ and ensuring that the reform documents were so long and complex that no-one, including most Ministers, understood them. The British media failed to report the warnings of individual doctors, nurses and other healthcare workers, and the demands of traditionally silent bodies such as the Royal College of Physicians to drop the Bill.

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The most worrying aspect of the reforms that come into force today are the Section 75 regulations, which state that all NHS services must be put out to competitive tender. This is not just allowing privatisation, it is mandating it. And all these profit-motivated private firms will be operating under the ‘brand’ of the NHS, so patients may not even know. Until the inevitable problems start to surface and it is too late.

Screen Shot 2013-04-01 at 18.34.44As I watched the welfare state being dismantled around me this week, I went to see Ken Loach’s film The Spirit of ’45 at The Barbican Cinema. It was a poignant reminder of a time full of hope and promise, and was a stark contrast to what I see today. In 1945 there seemed to be a collective vision of a society that could pull together for the benefit of all, with at least some people from all social classes believing that the State was a force for good, and that it had a responsibility to provide and protect the simple things most of us spend life striving for: purpose, dignity in work, family, safety, health, wellbeing, shelter, and comfort. 

Particularly powerful were interviews with doctors and patients who remembered a time before the NHS, when healthcare was only for the rich. In The Spirit of ’45 Dr Jacky Davis and Dr Jonathan Tomlinson, doctors working in the NHS today, talk eloquently about the doctor-patient relationship and about their fears about the future. Marketisation and competition change the relationship of doctors and patients to salesmen and consumers. I am no salesman and never will be.

The day after I saw The Spirit of ’45 I was on call in hospital. I was asked to speak to a patient about her medications before she went home, and quickly scanned through her notes before going to speak to her. She had had a tough few weeks, having been diagnosed with incurable (but treatable) lung cancer – only two weeks from having a chest x-ray revealing an unexpected abnormality to tissue diagnosis and treatment plan. This rapid diagnosis and treatment was an example of what happens every day in the NHS, and is a great example of the efficiency of our healthcare system, but it had left her little time to process the news. She was anxious about her medications prior to discharge so I spent a few minutes clarifying them and reassuring her.

As we ended the conversation she said thanks, and then hugged me tightly. It was nhs logoan unexpected level of physical contact and gratitude for a conversation that could only have lasted ten minutes. But it made me think. She wasn’t really thanking me. She was thanking the NHS: there for her from cradle to grave; at the most difficult time of her life; no questions asked; free at the point of need. Patients in the NHS are taken under the wing of an institution and cared for under an ideology. Today that ideology has suffered a fatal wound. Health is not a commodity, and markets will not make our NHS more efficient, more equitable or of higher quality.

Nye Bevan said “The NHS will last as long as there are folk left with the faith to fight for it”. As Owen Jones says “It is with huge regret that I must say that – however much faith we have – we did not fight to save it. The question now is – do we have enough faith to bring it back to life?”

As I look around the political landscape I fail to be inspired or energised by what I see. Attlee had vision, drive and a belief in the people.

I am looking for the Spirit of ’45 in 2013. Let me know if you find it.

The human touch

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

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

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

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

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

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

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

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

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

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

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

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

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

* name changed to maintain confidentiality

Life in my shoes

On a recent set of on call shifts I met James,* who my team treated for pulmonary emboli. He was a lovely man; visits to check he was on enough oxygen to maintain his saturations and to assess his haemodynamic status were a joy, due to his easy manner and good humour.

Pulse Oximeter, for monitoring oxygen saturations

One one occasion I was with my Consultant, who had known James for a while prior to this admission. At the end of the consultation he asked a very powerful question “is there anything else on your mind?” At this point I was closing the notes folder and putting my pen in my pocket, expecting to move on to the next patient. But James  did have something on his mind.

What I have not mentioned is that James is HIV positive. He has been living with HIV for many years and facing the challenges associated with this with resolve and good humour. His current problem was not directly related to his HIV status, but as is the usual practice whilst he was in hospital he was cared for by both the general medical team, and the “immune deficiency team” who were able to advise on potential interactions with his ARVs and give other specialist input.

One afternoon James was sat in his hospital bed, chatting to a visitor who was unaware of his HIV status. One of the immune deficiency team doctors had just been to see him and was writing up notes at a nearby desk. Another doctor called across the ward “hey, are you the HIV doctor?”

This question was clearly asked thoughtlessly, with a complete lack of awareness of the potential to breach a patient’s confidentiality. James told us that thankfully his visitor had not heard, but he was concerned that this situation could happen again to someone else. He offered to talk to the doctor involved, to explain the impact of a HIV diagnosis, and the significant anxieties felt by those affected, in particular around potential breaches of confidentiality and  discrimination within healthcare settings.

This conversation made me think about my own views on HIV, and I realised that I am incredibly naive. To me HIV is just another chronic disease; requiring early recognition, lifelong support, timely treatment, and awareness of associated morbidity and mortality. In my mind, it does not differ greatly from diabetes or COPD. Of course I am aware of the additional moral judgements that go along with sexually transmitted infections in general, and that the fear of contagion from ill-informed people coupled with value-judgements on lifestyle choices make living with HIV significantly different to living with diabetes, but I have not witnessed this myself. I watch films like Philadelphia and Angels in America, and listen to anecdotes from older Consultants, and feel completely disconnected from them: the AIDS epidemic of the 80s feels like a distant bygone age. Hasn’t society moved on? Isn’t my generation more liberal?

Giant leaps have been made in the last few decades in diagnosis, treatment and life expectancy, and my professional perception of HIV as “just another chronic disease” is in many ways a sign of success in overcoming the associated stigma. But meeting James provided a stark reminder that people living with HIV still face significant prejudice. As a throwaway comment he said “the curtains around the bedside aren’t exactly soundproof, and the visitors of the patient next door didn’t look particularly pleased when they overheard someone say ‘HIV’. I’d rather not have to deal with that while I’m struggling to breathe!

HIV and AIDS gets less attention from the media in the UK than it did during the early years of the UK AIDS epidemic, but it’s far from an issue of the past. In fact, the epidemic has expanded, with the annual number of new HIV diagnoses nearly tripling between 1996 and 2005. Annual diagnoses have slightly declined since then with 6,150 people diagnosed HIV-positive in 2011. But despite rising numbers of people infected through sexual transmission, public knowledge of HIV and AIDS appears to have declined. Worryingly the UK HIV and AIDS statistics show that of the 91,500 people living with HIV in the UK at the end of 2010, approximately 24 percent were unaware of their infection. This is the result of multiple factors including a lack of physician awareness of indicator conditions, physician reluctance to test and patient fears and reluctance to get tested, in part due to myths, and negative societal attitudes.

AIDS 2012, an International AIDS Conference is being held in Washington this weekend. Part of the extensive programme includes the screening of a film made in Hackney, London by the charity Body and Soul, whose message is optimistic and inspirational:

We refuse to let HIV decide who we are.”

We believe in people not victims; brilliant individuals, not scary statistics.

HIV can exert a powerful impact on the lives of people living with and closely affected by the virus. However…with the right interventions at the right time, resilience and hope can be developed.

The film Life in my Shoes celebrates difference by seeing life from other people’s perspectives. This wider message of the need to empathise with other people’s perspectives is powerful, beyond the context of this campaign, and I hope it receives a wide audience.

“There is one thing we all share, we are all different.”

* Name changed to maintain confidentiality. Story shared with consent.

How to die: CPR and the concept of futility

I recently cared for Ernest,* an 87 year old gentleman who spent around two weeks on my ward. Prior to admission his health was poor. He was bed-bound due to the late stages of a degenerative neurological disease, and had associated cognitive impairment. He had several other health complaints, and had been in hospital multiple times in the previous year with infections. He had always responded to antibiotics but his condition and level of interaction with the world had declined with each admission. On arrival to our ward I noticed that he did not have a DNAR order and, since he was not able to discuss his wishes, I looked to the family for information and to broach this subject. I was surprised to find that several vocal family members were adamantly against a DNAR. I had lengthy discussions explaining my reasons for believing that attempts at resuscitation would be futile and that setting limits of care was important to ensure we pursued quality, not just quantity of life. They listened, seemed to understand, and themselves identified his frailty, deterioration over the last year, and decline in his quality of life. However they strongly objected to us making him “not for attempted resuscitation.” As the end of the week approached I felt uncomfortable about the lack of a DNAR order, and about the possibility of this frail gentleman suffering a brutal and undignified exit to the world should his heart stop. I tried to communicate my personal discomfort to the family, and the reasons for it in the context of my experience of the realities of CPR attempts in those with poor underlying health. I also made it clear we were not asking for them to make this decision, but wanted to integrate their views into the medical decision-making process. I was aware of the potential to be seen as being coercive and paternalistic, but felt a duty to act in what I believed to be the best interests of my patient. We treated him with escalating regimes of iv antibiotics, iv fluids and nutritional supplements with no improvement, and by the end of the first week the family reluctantly withdrew their objections to a DNAR. Unfortunately he did not respond to treatment, his organs began to shut down and he drifted into a state of unconsciousness. At the end of the second week the Consultant and I had further difficult conversations with his family members about the withdrawal of antibiotics, fluids and nutrition. He died; peacefully and comfortably with his family present.

I thought a lot about Ernest and his family at the time and in the weeks since. I was taken aback by the strong objection to a DNAR order and, not for the first time, wondered about the expectations of the public of medical interventions. I also wondered what I could and should have done differently; where the line is between professional advice and personal opinion; and to what degree families’ wishes should be followed in the face of futility.

An article in the NEJM addressed the question “Is it always wrong to perform futile CPR?” and suggested that there are some circumstances in which it may beThe "Father of Modern Medicine" right to proceed with futile treatments at the end of life for the sake of the family: for those left behind. I recognise this argument, but my personal beliefs align more with those who contend that this is never right, as it treats the patient as a means to an end, rather than an end in themselves (see Kant), and causes harm to the patient. The Hippocratic Oath is very clear on the duty not to do harm and  to recognise one’s limits.

This quote from a 1988 letter to the editor of NEJM seems even more appropriate today, as the options for what can be done grow, whilst what should be done, is not always considered :

“It seems we have lost sight of the difference between patients who die because their hearts stop and patients whose hearts stop because they are dying.”

Conversations about the limits of medical intervention, the inevitability of death, and the need for priorities other than duration of life are not broached often enough or openly enough. The aim of talking more openly is not to remove hope, but to give patients the space to exercise true choice and autonomy, to define their own priorities, and to live out the time they have left in the way they choose. It also releases the medical team to do all we can with total conviction, comforted by appropriate limits. We live in an ageing society. More people now die from chronic conditions after a long period of declining health, or from a combination of factors best defined as frailty. Atul Gawande, Professor of Surgery at Harvard Medical School, when asked by a family member whether one of his patients was dying admits to struggling to know how to answer:

“I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”

For patients in the late stages of chronic health conditions such as heart failure and COPD the week or month of their death is not predictable, but the fact that their lifespan is limited is fact. Starting these conversations is difficult, and communicating the concept of futility can be a huge challenge. What does futility really mean? What % survival from CPR does the public think is achievable and what would they define as futile? Is this the same definition as doctors? It is no wonder that we struggle to find the words, but this is no excuse. The medical profession must not collude in the conspiracy of eternal life, and the  perception of death as failure.

So how do we move forward? A recent JAMA article has suggested a standardised approach to determining DNAR status. Reading the conclusions, the most striking thing is that they sound like simple common sense: “Whenever there is a reasonable chance that the benefits of CPR might outweigh its harms, CPR should be the default option. However, in imminently dying patients….The default option in this situation should be an order to not attempt CPR.” The problem is that life is rarely so black and white, and many patients arrive at hospital with a potentially life-threatening illness but are not imminent dying. It is these patients who still need appropriate limits of care setting, but this is not built into our day to day practice.

The conclusions of the NCEPOD report “Cardiac Arrest Procedures: Time to Intervene?” have been widely reported but often with a negative spin, painting doctors as the enemy of patients “fighting for life.” This is an emotive subject and the media are rarely helpful, fuelling fears of patients having decisions made for them and being abandoned at the end. The Daily Mail can always be relied upon to deal as insensitively as possible with these complex subjects (see here and here, where they conflate the question of the appropriateness of DNARs with communication issues and accusations of neglect, making it difficult for the public to consider the issue in isolation.) The Chair of the NCEPOD report has identified the fact the we all need to recognise and accept the limits of what medicine can achieve. But who does he mean by “all?” This is a societal issue, and discussions need to leave the hospital ward and GPs’ surgery and find their way into people’s homes.

Reflecting on my interactions with Ernest’s family, I was heartened by this quote from Atul Gawande in The New Yorker:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come…”

I will continue to have these hard discussions, but hope that in time they will be made easier by a greater awareness and preparedness from the public. Death is a part of life and our continued silence only makes it more deafening when it arrives.

See The Health Culture blog: “Actions surrounding the moment of death are highly symbolic,MedicalEthicsandMe‘s thoughts, and lots of posts on the Medical Futility blog for further insightful discussion.

* names changed to maintain confidentiality

Health, wealth and the centenarian

Recently I treated and discharged a 101 year old gentleman. Back to his own home. And not a care package in sight.

As a hospital physician I rarely meet this group of older people, living full and independent lives. My view of the over 65s is coloured by my frequent encounters with the most unlucky ones; suffering from chronic disease, dementia, cancer and frailty.  But they exist, these sprightly centenarians and in increasing numbers. And even more common are older people with a lot to contribute to society, but in need of a little support in order to maximise their potential. Between now and 2050 the number of people aged 80 years will almost quadruple to 395 million. At that point, there will be more people over 65 than children under 14.  Our world is changing, but are we ready for this global silver revolution?

As a broad generalisation “western society,” does not value age, experience and wisdom. Our culture is obsessed with youth and a narrow definition of beauty which has no time for those perceived as “past their prime.” But in the last few weeks I seem to have read an abundance of good news stories about older people doing incredible things. On Saturday Live on BBC R4 I listened in awe and fascination to Mary Hobson who took a degree in Russian in her 60s and now, in her 80s is winning awards for her version of Pushkin.

Nicholas Crace, a fantastic 83 year old, found that he couldn’t continue to give blood after 70, but he could donate a kidney. So he became the oldest live altruistic kidney donor in the UK.  He was back to gardening and cycling a week later.  For even more inspiring older people see here and here.

Despite these great examples I fear that in general we dismiss and ignore older generations and that, as a result, we are losing out. As I contemplate entering the later decades myself I am worried I will not have the means to enjoy “active ageing,” defined by the WHO as mechanisms through which “people can realize their potential for physical, social, and mental well-being throughout the life course and to participate in society, while having adequate protection, security and care when needed.

So what are the necessary conditions for longevity, and what defines a happy life? Many people have attempted to answer this question. There is some evidence that those who live long healthy lives have higher levels of glutathione reductase (although I have not found any convincing evidence of a cause and effect relationship). Other research has idenfified genes that seem to influence longevity in multiple generations, including FOXO3A, which also correlates with lower rates of cardiovascular disease and cancer. But of course these reductionist theories miss the complex interaction of the individual, their genes, their childhood, their health choices, their socioeconomic status, their employment, their personality and risk taking behaviour, their social interactions, their self esteem and response to stress.

For over 70 years Harvard researchers have been following 268 men through their lives starting as “well-adjusted Harvard sophomores.” Half of them are still alive and now in their 80s. The study has documented narratives of the participants lives, in addition to collating questionnaires, psychological tests and medical examinations. The primary researcher George Vaillant has concluded that key components of a happy life include close relationships, access to a good education and good physical health. Perhaps more interesting are conclusions such as “objectively good physical health was less important to successful aging than subjective good health. By this I mean it is all right to be ill as long as you do not feel sick,” and “learning to have fun and create things after retirement, and learning to gain younger friends as we lose older ones, add more enjoyment to life than retirement income.” Dr Vaillant heavily emphasises the importance of social support and relationships in healthy ageing, which should ring alarm bells when we consider the lack of any sense of community in so many peoples’ lives, and the social isolation which often occurs with ageing.

The Okinawa Centenarian study in Japan identified several factors that contribute to the population’s high number of centenarians including: a diet very heavy on soya products, as well as fish and vegetables, and low on alcohol, dairy products and meat; commitment to frequent low impact exercise such as tai chi and gardening; close, supportive social networks; and a positive attitude that embraces and celebrates age. This group of people spend, on average, 97% of their lives disability-free. What a contrast to the common perception of the frail, dependant UK nursing home resident, unable to perform the most basic functions for themselves.  Ageing is not something to fear, if we remove the physical dependence and cognitive decline that we perhaps mistakenly see as inevitable.

I will continue to marvel at and celebrate the healthy older people I come into contact with, and aim to integrate some of the advice from Harvard and Japan to maximise my own chances of active ageing. But I also hope that the current period of austerity, coinciding with almost daily revelations of the degree of  inequality in society, and the entrenched corruption of power at the top  is bringing about a gradual reawakening; a shift in our materialistic and individualistic society towards a more caring, human, community-focused future. In my utopian future, age and wisdom are valued above youth and beauty, the gap between rich and poor is a fraction of what it is today, human interactions are treasured more than material possessions, and we all eat soya.

Good health adds life to years