Category Archives: Life

Drawing myself back together

I wrote the blog below as part of a series curated by the London Arts in Health Forum, on art and culture, health and wellbeing. I and the other Trustees are already excited about 2017’s Creativity and Wellbeing Festival which will take place 12-18th June. Excitingly, an edited version of my blog was picked up by The Guardian, who have published it as part of their #BloodSweatTears series. You can read the article on The Guardian website.

The original blog follows.

Talk of low morale and burnout abound in healthcare [1,2]. ‘Resilience training’ has been proposed, to ’toughen up’ workers like soldiers in battle, to reduce sick days and enhance staff retention [3]. But as individuals, institutions and the public at large face the fact that healthcare is incredibly stressful work, that our services are stretched far beyond comfort, and that merely telling those involved in intense physical and emotional work to be more resilient doesn’t work, how can we truly support those who care for us to care for themselves?

Last year I gained some personal insight into this question. As a hospital doctor I am used to working under pressure, and had always felt I thrived on it. But whilst taking time out of clinical training to pursue a PhD, I found that I was intensely unhappy and suffering a range of surprisingly physical symptoms: palpitations, early morning waking, nausea, severe headaches, poor appetite, diarrhoea, dizziness, breathlessness and tremors. My day was constantly interrupted by intrusive negative thoughts; I once walked for 30mins with “I hate my life, I hate my life” on a loop of internal monologue that I feared had no end. I listened to podcasts and audiobooks fanatically but could not drown out these thoughts, and no rationalisation of all the wonderful things I have in my life could make them stop. Admitting that I was not merely unhappy in a job was a struggle. Having ‘depression and anxiety’ branded on my medical file, and acquiring a sick certificate, came as a shock. And after taking the very difficult decision to leave the PhD things did not immediately get better. I was convinced that I had ruined my career, and my life, and that nothing would ever be the same again. I felt that everything was pointless, and daydreamed about getting a terminal illness, or caught up in a terrorist incident. I didn’t want to die, but it no longer seemed like such a threatening possibility, and the option to opt out was appealing.

I wanted to get better and get back to a version of myself that I recognised, and I sought help from everywhere I could. I saw family and friends, and cried with many of them. I made appointments with my GP, an occupational health advisor and a career coach. I was pointed in the direction of a service specifically for doctors, the NHS Practitioner Health Programme [4,5], and embarked on a course of CBT, alongside regular sertraline. And I cancelled every commitment in my diary in an attempt to reset and gain some perspective. I woke up one morning at 4.30am and realised I had no commitments and no deadlines, and I asked myself ‘what do you want to do today?’ The answer, it turned out, was to walk, to watch, to draw, and to knit.

I have always loved to draw and make things. As a child I could entertain myself for days on end with paper, pens and scissors. Creativity is a part of myself that I had suppressed and ignored, viewing it as an inconsequential, frivolous hobby. But giving myself time away from work, both physically and psychologically, I made space for the things I love. I went on long walks through the city and took pictures of streetart and architecture. I went to galleries and lost myself contemplating contemporary art. I spent a weekend with my Mum knitting matching hats, sharing the intense joy of making pom-poms and then proudly wearing our creations. I made christmas cards and decorations and gave them to friends. I sketched and doodled, cut, stuck, sewed, crocheted and collaged. As I reaffirmed to myself the fact that I am more than my work, my internal voices of negativity and fear became quieter and I started to recognise myself again.

I am now back at work, and will be full time from April. I am incredibly grateful for the help I received, and cannot recommend SSRIs and therapy highly enough. But I also suggest finding space in life for creativity. I now rarely have a whole day free to make salt dough sculptures, or master cable knit, or learn how to rag-rug. But I do have time to take a photo, to doodle, to complete 5 knit rows of my latest hat, or to write a sad story using only 3 words. Participating in 64million artists January creativity challenge [6] demonstrated that I could weave creative tasks into my hectic work days. They not only activated a different part of my brain, they activated a different part of myself. With the ability to rise above the minutiae of my day and find more joy in simple things, I became more balanced, more empathic and more content.

Having worked hard to restore my positive outlook and some self worth, I am anxious to prevent a relapse. And so I have made myself a number of promises: I will not give all my emotional energy to work; I will take all my annual leave, however difficult it is to find cover; I will say ‘no’ more often to extra work tasks; I will value activities that make me happy but do not have ‘outputs’; I will make space for creativity every single week; I will schedule art in my diary during my time off and will not cancel due to work; and I will continue to talk about how I feel, as this shows strength not weakness [7]. I see these as essential for my self-preservation, but also essential for my effectiveness at work. By making time for the things that recharge me, I am now more effective – a better colleague and a better doctor.

The wellbeing of workers is a subject that is gaining attention. Companies such as Google are renowned for their perks: free food; games areas; gym memberships; massage credits; time for volunteering; and time to pursue ‘passion projects’ [8]. Those of us in the public sector look on enviously as we routinely work unpaid overtime, struggle to do three people’s jobs in one person’s time, try to do more and more with less and less resource, and remember lunch breaks as a distant memory. But some individuals and organisations are taking a proactive approach: workplace choirs are on the rise [9]; and staff wellbeing programmes are increasingly part of hospital Trust strategies and are gaining recognition through the Mayor of London’s Healthy Workplace Charter [10]. There is growing recognition that burnout not only harms workers, but also compromises the quality and safety of healthcare provision [11]. The Royal College of Physicians have produced a number of reports demanding leadership and action, noting that “investment in NHS staff is not an optional extra, but a vital investment in safe, sustainable patient care” [12, 13]. There is good evidence for the effectiveness of the arts in supporting wellbeing [14], and certainly more evidence than there is for resilience training [15, 16]. Intelligent organisations would do well to embed opportunities for arts engagement in career development and staff retention strategies if they want to maintain productive, compassionate, loyal workforces.

 

So, whether you like to write, to draw, to paint, to knit, to carve, to sing, to sew, to jive, to strum, to film or to yodel, I urge you to value your creativity and make space for it in your life. Celebrate the quirkier parts of yourself, and give them the time and respect they deserve. Be kind to yourself, and stay well. I’ll try to do the same.

  1. Doctor’s low morale ‘puts patients at risk’. BBC News, Oct 2016. http://www.bbc.co.uk/news/health-37777679
  2.  Rich, Antonia, et al. “‘You can’t be a person and a doctor’: the work–life balance of doctors in training—a qualitative study.” BMJ open 6.12 (2016): e013897. Available at: http://bmjopen.bmj.com/content/6/12/e013897.full
  3. Doctors need resilience training like soldiers in Afghanistan, GMC head says. Pulse, Jan 2015. Available at: http://www.pulsetoday.co.uk/your-practice/regulation/doctors-need-resilience-training-like-soldiers-in-afghanistan-gmc-head-says/20008855.article
  4. The NHS Practitioner Health Programme: http://php.nhs.uk/
  5. Gerada, C. “The wounded healer—why we need to rethink how we support doctors.” BMJ Careers (2015). Available at: http://careers.bmj.com/careers/advice/view-article.html?id=20022922
  6.  http://64millionartists.com/
  7. Time to Change’s Time to Talk campaign: http://www.time-to-change.org.uk/about-us/about-our-campaign/time-to-talk
  8. An Inside look at Google’s best employee perks. inc.com, Sep 21 2015. http://www.inc.com/business-insider/best-google-benefits.html
  9. Setting up a workplace choir: resources from Gareth Malone and BBC2. http://www.bbc.co.uk/programmes/articles/4TnMw8yMb2Fhf0bT6Z6hH5X/setting-up-a-workplace-choir
  10. Staff wellbeing programmes recognised through the London Mayor’s Healthy Workplace Charter: https://www.london.gov.uk/what-we-do/health/healthy-workplace-charter/award-winners-healthy-workplace-charter
  11. Salyers, Michelle P., et al. “The Relationship Between Professional Burnout and Quality and Safety in Healthcare: A Meta-Analysis.” Journal of General Internal Medicine (2016): 1-8. Available at: https://link.springer.com/article/10.1007/s11606-016-3886-9
  12. Work and wellbeing in the NHS: why staff health matters to patient care. Policy and Public Appears at the RCP, Oct 2015. Available at: https://www.rcplondon.ac.uk/guidelines-policy/work-and-wellbeing-nhs-why-staff-health-matters-patient-care
  13. Keeping medicine brilliant: improving working conditions in the acute setting. Mission: Health Policy Unit at the RCP, Dec 2016. Available at: https://www.rcplondon.ac.uk/guidelines-policy/keeping-medicine-brilliant
  14. The evidence base for arts in health: a resource of the National Alliance for Health and Wellbeing, available at: http://www.artshealthandwellbeing.org.uk/resources/research
  15. Leppin, Aaron L., et al. “The efficacy of resiliency training programs: a systematic review and meta-analysis of randomized trials.” PloS one 9.10 (2014): e111420. Available at: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0111420
  16. Balme, E., C. Gerada, and L. Page. “Doctors need to be supported, not trained in resilience.” BMJ Careers 15 (2015). Available at: http://careers.bmj.com/careers/advice/Doctors_need_to_be_supported,_not_trained_in_resilience

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:

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

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.

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 

5 things

This week is Dying Matters Awareness Week 2012, the theme of which is “small actions, big difference”. As part of the campaign, people are being encouraged to take small actions which include:

  • helping someone to write a will
  • showing and discussing one of the Dying Matters films
  • visiting someone who’s been recently bereaved
  • becoming an organ donor
  • documenting your own end of life wishes
  • writing down 5 things you want to do before you die

Some of my friends and family think I spend too much time thinking about death. But because I think about the fact that life will end (hopefully not for a while), it seems so much more precious. So here are 5 things for my bucket list:

  1. See the Northern Lights.
  2. Make the perfect blueberry muffin.
  3. Fall in love. Again.
  4. Read Les Liaisons Dangereuses, in French.
  5. Have a photograph I’ve taken published in a weekend newspaper.
  6. Be interviewed on BBC R4 Woman’s Hour.
  7. Donate 50 units of blood.
  8. Stay in a jungle treehouse in Peru.
  9. Procreate.
  10. Have my portrait painted, naked.

Actually once I got started I couldn’t stop at 5. There’s a lot of life to live.

This Dying Matters Awareness Week I urge you to do something that “makes living and dying well the norm.”

“To live is the rarest thing in the world. Most people exist, that is all.” Oscar Wilde.