Self-Disclosure

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Is Self-Disclosure ever appropriate as a doctor?

One of the first lectures we ever received as medical students was on professionalism. The lecturer drew up a webpage from the General Medical Council (GMC), emphasising our roles as future clinicians and the responsibility this entailed. We were all recommended to read the GMC’s ’Tomorrow’s Doctors’ publication, outlining the expectations that were placed upon us from the minute we registered on the course. These points have been emphasised throughout every year of the course through these professionalism lectures, deemed necessary through their registration of student attendance.

But the doctor is more than a public figure. He is also a person. He has his own vulnerabilities and his own virtues. It has been said that doctors are the modern priests, the people we now put our faith in when times get tough. And no doubt with such privilege comes the responsibility to handle this power carefully. But if we build our doctors up as idols, we forget they are human. We must be careful not to place them on a pedestal so high that one slip will lead to their demise. And perhaps that is what is happening right now. The GMC has come under attack for the way it treats doctors who undergo fitness to practice procedures. From 2005-2013, 28 doctors undergoing such procedures committed suicide. It has been suggested that one of the factors that may have come under play was the stress of being investigated (1). By placing too much emphasis on expectations, and not enough on the humanity, any one of us would crumble. Doctors are not infallible.

Indeed, it is this humanity that makes a ‘good’ doctor. It is this humanity that helps a patient feel cared for, listened to, and empathised with. It is these vulnerabilities that bring patient and doctor together, helping them share the patient’s pain and suffering, leading to tailored management that encompasses more than just the patient’s body. This leads me on to the question: is self-disclosure ever appropriate? Can it lead to positive outcomes, a feeling of being understood by the patient, of being connected by the doctor? Or is it a line too far, a sign of the public figure no longer being public?

 

A report of 1,246 audiotaped office visits collected in 1993 from Oregon and Maryland found that in 15.4% of these appointments, there was self-disclosure from the doctor, while 71% of doctors disclosed in at least one of their visits that was audiotaped (5). A further analysis of these self-disclosure statements found that the majority fell into the category of either reassurance, counselling or rapport building (7). Self-disclosure does seem to be prominent, although its level can vary from sharing stories of day-to-day living to ones of tragedy and heartache.

It can be difficult for to open up to a stranger. Despite the promises of confidentiality and the public persona of the physician, it can still be difficult to force the words to fall in the right order. Anyone who has ever walked into their doctors office with an embarrassing or sensitive issue will have experienced this. And part of the doctors role is to encourage disclosure from the patient. They need to create an open and trusting environment, one in which the patient does not feel judged. Part of this can be the professional nature of the doctor, their authoritative persona and vast knowledge. But part of it is also their emotional intelligence. How they are able to connect with the patient in front of them, ask the right questions, probe gently into their lives. Part of it is making the patient feel as if they are talking to a friend, someone they can trust.

One may argue that the doctor is also a scientist. He is the passive observer, looking out for the signs. His practice is built upon evidence, his training upon the anatomy and physiology of the body. Should he step further into his patients lives – and more importantly, allow his patients to step further into his?

In todays society, the doctor is no longer just a scientist. He also holds the faith of his patients.

 

“The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.” – Sigmund Freud, 1912 (8)

 

Of course, self-disclosure can also make a patient feel uncomfortable. Despite the friendliness, one must always remember the title of doctor and patient. It is not the patients job to treat the doctor, to increase their ego or self-worth. This professional relationship of doctor-patient is seen as one-sided in this respect: the patient reveals themselves, not the other way around. But remember – doctors are human. And humans reveal things about themselves, even subconsciously. The clothes you choose to wear displays your wealth and your level of self-care. The posters you put upon your office wall reveal your interests. Your body language reveals how comfortable you feel in conversation. Your words display your education. This may explain the uncomfortableness some people feel towards doctors having tattoos or outrageously dyed hair, and why some people may feel more comfortable speaking with a doctor of their own gender – because there is a shared experience. This experience may not necessarily be verbalised within the consultation, but it can be felt in the room. Yet some of these revelations can also lead to prejudices from patients. That is the consequence of dealing with human beings. But perhaps you can use this disclosure to your advantage, to make your patients feel more comfortable, more understood. In order to feel comfortable, it is important for the relationship between doctor and patient to feel “real”.

 

Of course, doctors are a heterogeneous group. Different specialities lead to different amounts of time spent with patients and different levels of continuity. The best environment for such disclosure to be held would be within primary care, with GPs. These are the doctors who should know their patients best and deal with their holistic needs, more so than any other speciality. They would ideally be able to tell if disclosure would be appropriate and in which circumstances – how their patients would act, and whether it would have a positive impact. Compare this to a setting like psychiatry – in the same way, the doctors may know their patients very well given the lengthy consultation times and deep issues that are dealt with, but self-disclosure may not be deemed as appropriate given the vulnerability of many of the patients.

Self-disclosure can also have its negatives – not just in how the perception of the physician is changed within the patients mind, but that the doctor may begin to be seen more and more as a close friend – to the extent that this may lead to increased curiosity and even attraction. Even without revealing anything, it has been found that 71% of female and 29% of male medical students have reported having sexual advances being placed upon them by patients (2). Some have argued that self-disclosure can lead to a slippery slope towards a violation of boundaries, while others suggest that self-disclosure is simply a form of self-preoccupation (7).

If one is to self-disclose, then one must be careful not to do it in excess, to the extent that either the patient feels uncomfortable, or that it leads to the downward projection of a violation of boundaries. The other worry is that it can also lead to something called transference: when a patient unconsciously projects an aspect of a previous relationship on to the doctor. For example, a patient who is afraid that they are very ill may compose themselves to a child-like role and project a parent-like quality on to the doctor, with an expectation that they will provide support (3). This is one part of the way people relate to each other, and putting this into the context of self-disclosure, further information about a doctors personal life may lead to unwanted feelings and behaviours from the patient due to past experiences.

 

Surely patients do not expect doctors to reveal everything about themselves either. For example, it would feel unnatural to go to our doctors house for an appointment – for both parties. Both players want a level of privacy, and this should be respected. One could argue that this boundary between doctor and patient has become blurred as patients become more empowered. Information about health conditions and management is freely available online, and the decision for treatment lies in the hands of the patient. No longer is the doctor the authority in the white coat. Perhaps this suggests that the doctor is no longer the priest either – perhaps the priest is the patient himself. In which case, if we begin to see both doctor and patient on an equal level, will self-disclosure eventually become an expectation? Will we end up in an era where it is deemed normal for the patient to probe gently into their doctors life? The boundary between doctor and patient are permeable and ever-changing. They are different in different cultures, and different between each patient. The advent of social media has led to doctors personal lives being on show, and with it our expectations of the clinician are changing. They are acknowledged for their hard work, respected for their knowledge, but they are also part of the human spectrum.

 

Self-disclosure may be justified if it can lead to a positive outcome for the patient and there is still a level of control. It is important that the self-disclosure is not done just for the doctors benefit – something that may arise if a physician feels trapped in their own personal life. This in itself illustrates the need for doctors to be supported themselves through their own doctor so that personal issues do not transfer into their professional life. However, if a stable relationship has formed between doctor and patient, and an evaluation is done beforehand of what the self-disclosure would mean to the patient, and this disclosure can be justified, then perhaps it can be deemed appropriate. A stable relationship is a requirement so that control can still be handled, and limits still drawn between doctor and patient, while still developing the therapeutic relationship through a display of the physicians own experiences as a way for the patient to reflect and understand themselves.

Self-disclosure can sometimes be powerful, especially when someone has gone through traumatic experiences. We have all experienced this ourselves when reading the news – the statistics go past our heads, but an anecdote reaches our heart. In the same way, a doctor telling us that people move on from bereavement is very different to a doctor sharing their own experiences of how they have moved on. In this way, disclosure can help to remove the alienation that a patient may feel, helping them to understand that how they are feeling is normal and they are not alone (4). This type of disclosure can also deepen the therapeutic relationship, allowing the physician to step down from his pedestal and giving the patient the opportunity to open up. Disclosures in such personal topics can help alleviate the loneliness patients may feel who are going through the same tragedies, but it can also leave a doctor vulnerable.  Perhaps self-disclosure is warranted when one has a goal in mind.

 

Social media has given all of us a voice, and this includes the medical profession.  An example of this would be the rise of self-disclosure by doctors through social media as a way to educate other healthcare professionals. This is described beautifully by the late Professor Kieran Sweeney, a former GP who died in 2009 of lung cancer:

 

Perhaps one of the best examples of how self-disclosure has had a positive impact is the UK geriatrician Dr Kate Granger. Dr Granger was diagnosed with terminal cancer, and while being treated in hospital, she became worried by the number of staff who failed to introduce themselves. She started blogging online about her experiences, leading to the phenomenon #hellomynameis encouraging health care professionals to introduce themselves. She was awarded an MBE in 2015 by the Queen, and has visited various hospitals around the UK in order to promote this campaign.

 

nullDr. Kate Ganger in 2015 (9)

 

Self-disclosure is appropriate if:

  • There is a positive outcome for the patient
  • There is a level of control in the doctor-patient relationship
  • The doctor is self-aware of their motivation for disclosure

Michael Balint, a Hungarian psychoanalyst, said that the doctor in himself is a drug that he prescribes to his patients (6). All drugs have side effects. It is therefore up to the doctor to balance the benefits with the risks and decide whether the drug would be therapeutic.

 

References

  1. General Medical Council. 2014. GMC to review its treatment of vulnerable doctors under fitness to practice investigation [Online]. Available at: http://www.gmc-uk.org/news/26011.asp [Accessed: 20th June 2015]
  2. Lussier, M. Richard, C. Self-disclosure during medical encounters. Official Publication of The College of Family Physicians of Canada. 53:421-422
  3. Hughes, P., Kerr, P. 2000. Transference and countertransference in communication between doctor and patient. Advances in Psychiatric Treatment. 6:57-64
  4. Psychopathology Committee of the Group for the Advancement of Psychiatry. Reexamination of therapist self-disclosure. Psychiatric Services. 52:1489-1493
  5. Beach, M.C., Roter, D., Rubin, H., Frankel, R., Levinson, W., Ford, D.E. 2004. Is Physician Self-disclosure Related to Patient Evaluation of office Visits? Journal of General Internal Medicine. 19:905-910
  6. Balint, J. 2000. The Doctor, His Patient and The Illness. Churchill Livingstone; 2nd
  7. Beach, M.C., Roter, D., Larson, S., Levinson, W., Ford, D.E., Frankel, R. 2004. What Do Physicians Tell Patients About Themselves? A Qualitative Analysis of Physician Self-disclosure. Journal of General Internal Medicine. 19:911-916
  8. Leudar, I., Antaki, C., Barnes, R. 2006. When psychotherapists disclose personal information about themselves to clients. Communication & Medicine. 3:27-41
  9. BBC News Health. 2015. Terminally ill doctor Kate Granger’s ‘my name is’ campaign wins support [Online]. Available at: http://www.bbc.co.uk/news/health-31062042 [Acc3essed: 20th June 2015]
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Hearing Voices

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Hearing Voices

“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.” 
― Oliver Sacks

 

Hallucinations are a window into the mind. They illustrate the complexity of the human mind and the pathways that can lead us astray. Art has explored the idea of madness over the centuries, translating paranoia into tragedies, delusions into dramas. It is only in the 20th century that hallucinations have been described as a sign of illness. In the past, hearing voices used to be linked with saintliness and spiritual enlightenment: a path towards God. Hallucinations are also heavy with cultural meanings: we can look back at Moses and the burning bush or Buddha beneath the Bo tree. Different cultures prescribe meaning to different senses: Protestants emphasise hearing while Catholics emphasise vision. West Africans partake in kinesthesis while perhaps most interestingly; Westerners distrust unusual sensory experiences and label them as pathological (3).

The term auditory verbal hallucination refers to hearing a voice in the absence of an external stimulus. Auditory hallucinations are more common within the general population than many of us may think, especially in times of stress: up to 70% of people have been found to hear the voice of their dead relative during bereavement (2). Most of the people who report auditory hallucinations within population studies do not report any distress or impairment; they are able to live happily alongside these voices within their heads. Some people find that their voices can give them guidance through difficult times, while others see them as a companion or a best friend. After all, we do not consider it abnormal for a child to report that they have an imaginary friend. This relationship between the person and their voice is incredibly complex – as complex as any other relationship we may encounter, and we must tread softly when we deal with such intimacy.

 

Hearing Voices as a Disease

Hearing voices is not the same as having a sore throat. Hearing a voice can have a deep significant meaning to the person in a way that a sore throat cannot. So what makes the voice pathological?

Western Society sees hallucinations as pathognomonic of a serious mental health disorder. Serious psychotic disorders are however recognized across all cultures with a similar pattern of symptoms. Hallucinations that are linked with serious psychotic disorders are described as ‘pathoplastic’ – that is, they are shaped by local meanings. Behind the response to voices is the attitude of society. The society we grow up in has a lot to say about the meaning of these voices: Mexican-American relatives are more likely to display tolerance and sympathy for a relative hearing voices compared to Euro-American families who are more likely to display criticism and hostility (2). If you grow up in a society where you are taught that hearing voices is wrong, this will affect your relationship with them. Imagine if you were a child hearing voices, and you turned to your parents to support – and found they were even more afraid of the voices than you. Would you see your voices as an enemy, or a friend?

People experience the mind and its underlying symptoms differently depending on where they grow up. Prof Luhrmann found that US patients self-identify as schizophrenic, using the diagnosis to describe their condition through textbook definitions. They accept the medical diagnosis and are even able to recite the medical criteria – for them, the meaning of the voice is “to be crazy.” In general, the American sample did not treat their voices as a person and many of their voices were filled with violence. On the other hand, in Accra people described voices as a spiritual attack. Half of patients reported hearing only positive voices. Even when hearing negative voices, individuals also described good voices telling them to ignore these negative influences. Some people in Accra even said these voices kept them alive. In India, hearing voices is viewed differently yet again. Many of the doctors don’t mention a diagnosis and families don’t ask. None of the patient’s believed they had a devastating illness, and thus compared to the West, most of them expected to get better (6). Does this suggest that people suffering from hallucinations in the developed world have a better quality of life?

It has been suggested that within the Euro-American culture, an individual who is unable to distinguish between reality and imagination is labelled as pathological, while in many non-Western societies such rigidities do not exist. But this labelling goes beyond cultures; it transcends time. Mitchell and Vierkan (2) compared hallucinations in an East Texas hospital both in the 1930s and then in the 1980s. They found that command hallucinations of the 1930s were found to be more religious, such as “lean on the Lord,” while those of the 1980s were more destructive, such as “kill yourself.” Perhaps such changes reflect the hostile environment we have created for our patients, and thus leads onto the question – are we treating our patients with a dignified and open manner? Do we treat them as fellow individuals?

 

If you do not envision schizophrenia as a life sentence, you increase the chance that patients will be able to discover their own resilience. – Prof Luhrmannn

Hearing Voices as a part of Life

In 1987 psychiatrist Marius Romme appeared on Dutch television with his patient Patsy Hague, a voice hearer, to publicise his new approach to voice hearing – that attributing meaning to ones voices changed the way one responded to them. Four hundred and fifty people responded to this television appearance, reporting that they heard voices. More than half of the people who responded had never sought professional help: they lived happily with their voices. From this stemmed the world’s first Hearing Voices Congress held in Holland that year, and from this then grew the Hearing Voices Movement (4).

The Hearing Voices Movement states that hearing voices is part of human variation. It rejects the pathologising of auditory hallucinations and emphasizes empowerment of the individual. The Movement combats the stereotype of the “all-powerful psychiatrist” by giving more control to the voice-hearer and viewing the hallucinations not as a disease but as a key part of their identity. Eleanor Longden, a lady diagnosed with Schizophrenia is one example of how such a movement can have a significant impact on a person’s life. Below she describes how her meeting with the psychiatrist, Pat Bracken, became a turning point:

“[he] didn’t use this terrible, mechanistic, clinical language but just couched everything in normal language and normal experience” (4)

 

Her story illustrates the road from “schizophrenic” to “voice-hearer” – from the clinical language of disease to the everyday language of emotions and experience. The stories of those diagnosed with schizophrenia can often be seen as disordered and incoherent, lacking any meaning. They are seen as having a defect. They are not entitled to a story (5). Hearing Voices Groups across the UK give people the opportunity to come together and share such stories in an open and trusting environment. The narrative contexts are the foundation blocks upon which these voices grow. It has been suggested that the inability to share stories about the self is part of the origins of psychopathology (1). We as healthcare professionals need to emphasis the point that hearing voices does not always lead to a life-long sentence of medication and institutionalization, as described eloquently by Eleanor Longden below:

 

If someone is reporting that they do not want their voices to stop then we must not automatically jump to the conclusion of poor insight. When the voices are distressing it is important to develop coping strategies that address this distress rather than the symptoms themselves. The problem is not the voice but the relationship one has with them. The goal of the Hearing Voices Network is for people to learn how to deal with their voices as one would deal with annoying roommates: with respect.

It has been argued that in Western medicine, doctors focus too much on a person hearing voices and not on what they say. Thus, anti-psychotics are seen as the answer with the devastating side effects described as a sacrifice for bringing someone back to the ‘norm.’ In order to understand the voices heard by our patients, we must first improve our knowledge of the cultural and social environments in which our patients reside and the practices and beliefs that our patients hold dear. If a clinician cannot take into account the cultural context of his or her patient, they cannot respond appropriately to their distress. And if a clinician is unable to respond appropriately to their patient’s distress, how can they ever hope to alleviate it?

 

“People with thought disorders do not keep a list of famous and successful people who share their problem. They cant, because there is no such list. Comparatively few schizophrenics lead happy and productive lives; those who do arent in any hurry to tell the world about themselves.” – Elyn Saks (4)

 

 Image from: http://www.deviantart.com/art/Psychosis-169756192

 

References

  1. Woods, A. et al. Interdisciplinary Approaches to the Phenomenology of Auditory Verbal Hallucinations. Schizophrenia Bulletin. 40:S246-S254
  2. Laroi, F. et al. Culture and Hallucinations: Overview and Future Directions. Schizophrenia Bulletin. 40:S213-S220
  3. Luhrmann, T.M. 2011. Hallucinations and Sensory Ovverides. Annual Review of Anthropology. 40:71-85
  4. Woods, A. 2013. The voice-hearer. Journal of Mental Health. 22:263-270
  5. Vaughan, S., Fowler, D. 2004. The distress experienced by voice hearers is associated with the perceived relationship between the voice hearer and the voice. British Journal of Clinical Psychology. 43:143-153
  6. Ritsher, J.B., Lucksted, A., Otilingam, P.G., Grajales, M. 2004. Hearing Voices: Explanations and Implications. Psychiatric Rehabilitation Journal. 27:219-227

Reflections from the first clinical year

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Since beginning clinical placement this year, I feel I have gained so much knowledge. Not just the pathophysiology behind diseases, but how we as human beings react to illness and adversity. I want to talk about some of these skills that I’ve learnt: the skills that are outside of the ‘learning outcomes’ written in our books.

Bedside manner

What is a good bedside manner? It makes up so many qualities: the tone of the doctors voice, the movement of their hands, the flow of their bodies. Described in this way it sounds almost like a dance. Ultimately, a good bedside manner leads to an empathetic response from the doctor and a feeling of comfort and trust from the patient. For some it can involve sitting with the patient to allow a similar eye level. This may not seem that important if you have never been in such a situation. But when you’re lying in a bed wracked in pain it can be daunting to have a mass of doctors suddenly huddling around your bed.
For others it can involve touch or a handshake: an acknowledgement of you as a person. And for everyone, it involves patience. It involves giving the person time to take in what has been said and ask questions. They may just have been told the biggest news of their life. This is their body you are talking about. It is more than just a means of transport: it makes us who we are. Illness changes more than just the bundles of tissues binding the body together – it changes ones self-perception.

With the advent of electronics, hospitals have been taken over by computers. Whilst making things more efficient, they can also become an obstacle. It is easy to become preoccupied with the list of medications on the screen in front of you while you mumble small talk to a patient whose face is barely in your line of vision.
Think back to a time when you began a conversation with a close friend, and noticed the moment their eyes began to slide down towards the magnetic attraction of their phone. Imagine if you were telling them something personal – something that you had to get off your chest. Would you feel comfortable opening up to such a person? Would you feel like you were important to them? In a world filled with technology and science, we need to ground ourselves and remember why patients came to us in the first place.

I have come across so many obstacles to having a good bedside manner, I often marvel at the clinicians who appear so graceful in their interactions with their patients. There are bedside curtains that give an illusion of privacy, other staff running around trying to carry out their agendas, loud noises screeching through the ward. It takes time to adapt to such an odd environment, nevermind building up your own style. The first few attempts at conversing with patients and families are always a blunder. The submissive pose gives you away immediately as a newcomer, if it isn’t your half-hearted walk beforehand.
You will stumble over words when you speak to your first patient. Your mind will suddenly become a blank blackboard as you flick through your notebook, trying to find the next question to ask as the patient watches bemused. You will mumble through awkward questions, showing a smile of apology as you try to enter this world where the boundaries have become so skewed. You will place your stethoscope in your ears the wrong way, speak to the wrong patient for over an hour, stand at the edge of the nurses station avoiding eye contact. You need to get through these stumbling blocks with a self-deprecating manner, laughing at your mistakes and shaking your head at your failures. But along the way you will learn so much. You will learn how to act, how to speak, how to question. You will learn to be a different person – someone who people will trust.

 

“There are many terrible things about illness: the lack of empathy hurts the most.” – Havi Carel

The Balance of Empathy

Empathy is probably one of the biggest words thrown around in today’s healthcare setting. I cannot say that I myself had a good understanding of this word until I watched Brene Brown’s fantastic TED talk:

http://www.ted.com/talks/brene_brown_on_vulnerability?language=en

Since beginning placement, I have often wondered why we are so shy of emotion. We deem it inappropriate to share too much information with others, especially our feelings. If emotions are ever brought up in conversation, they are done so in a self-deprecating way, a bemusement at our ‘weakness.’
Why do so many of us see emotions as a weakness? Why is this cool veneer so respected? I am a victim of this myself: all too often I find myself turning my head in embarrassment when I see tears falling down someone’s face. But why do I refuse to acknowledge one of the most essential qualities that makes me human? That led me into medicine in the first place?

Walking into a healthcare setting forced me to come face to face with cold, pure emotion. No pleasantries to dress up the rawness underneath. For the first time, I saw people come out of their shell. I observed people unafraid to let out their true feelings, bringing up fears that they had been holding onto their chests: worries about cancer, shame about being thought of as a bad mother. If you want to see true humanity, walk into a hospital.

But of course, we don’t expect all these feelings to come from a doctor. When we are ill we don’t want to see a doctor break down and cry. We expect some sort of boundary that will help us keep our feet on the ground. When all of our world is crumbling around us, we want someone strong. All too often I see patients being handed a decision to make, and give the reply “you’re the doctor.” I wouldn’t want a surgeon who flinches every time he cuts through the skin. We want a doctor who is able to feel with us but also be objective. This objectiveness is an important quality in itself. It is needed as one thinkings about the anatomy of the human body, the collection of blood vessels and the graphs of dosages. So how do we draw together the worlds of science and art – to be empathetic and still be able to take a step back and treat?

Reading literature is one answer. By reading books, fiction or non, we are given the opportunity to see the world through another lens. We pick up on details that we had never known existed and view our thoughts as a bias stemming from our own experiences. And this allows us to step back and gain a deeper understanding of our own patient’s experiences: how can we ever know what it is like to be a single mother living off benefits? How can we begin to understand the nausea, the tremor, the sweating as you wake up every morning with the next drink of alcohol entrenched upon your mind? Perhaps by opening ourselves to other people’s experiences through art, whether that be books or movies, we can begin to cultivate the garden of empathy that grows in our minds.

One example of this is Medical Humanities. Medical Humanities is a course that is offered to medical students in some universities throughout the UK. It involves the application of the arts to medicine, encouraging students to take a broader view of illness and step out of the biomedical bubble. The course involves reading through books illustrating other people’s struggles through illness and taking a broader view of what it means to be sick. 

Literature is one way this doorway can be opened. Another is through social media. With the dawn of the internet, everyone now has a voice – and these voices can teach us things that cannot be found in our textbooks. One such example is Kate Granger, a doctor in the UK who was diagnosed with terminal cancer. After spending time in hospital and noticing how rarely staff would introduce themselves to her, she began the Hellomyname is Campaign, encouraging healthcare staff to introduce themselves whenever they meet a patient:

http://hellomynameis.org.uk/

This campaign illustrates the countless number of people a person will see during their stay in hospital. It reminds us of the anxiety that awakens each time a patient see another healthcare professional. Who is she? Why has she come to visit me? Is it bad news? Am I getting worse? Why is she asking me these questions?

Empathy is important for communication. The language used by the doctor is not always the same as that spoken by the patient. We all have perceptions of “alcoholics” swaggering around the city centre at 2am, or “depressives” (I hate that word) lying in bed crying all day. Of course the clinical terms can be far removed from such preconceived notions, and we must be careful with what words we use to communicate with our patients. The words ‘degenerative’ for example may have different meanings for us as healthcare professionals (where it is used scientifically) compared to our patients (where it can be viewed as our body falling apart). I have seen many patients fear being prescribed anti-depressants due to the word “anti-depressant,” and I often wonder how people’s perceptions would change if we referred to them as SSRI’s.

In a world where we need to focus more on management than treatment, perhaps empathy is one of the few therapeutic tools we have left in our briefcase.

Empathy has its place in the clinical setting, but there is a time for numbers and graphs, dose calculations and anatomy books. How does one reach this balance?
In medical school, we are taught this through role plays. We are given one hour sessions once a year where we role play with an actor who pretends to be a patient, and then receive feedback from a doctor who has been watching us. These settings help us to deal with difficult topics such as breaking bad news and dealing with aggressive patients. It helps us to increase our confidence in a safe setting, and gives us the opportunity to receive feedback from other healthcare professionals along with the actor themselves.

In my first ever role play with an actor I was given some advice by a GP watching from the corner. He suggested a few quick phrases to help create an empathetic atmosphere. Sentences such as:

I’m sorry to hear that.” 
“I can’t imagine how that must feel.”

As I was working my way through these role play, I thought to myself – my goodness, this is all so rehearsed! Empathy shouldn’t come across as a set of phrases to remember – it should come naturally.
But now I’ve been beginning to think a little differently. When you are in a clinical setting, seeing patient after patient, it can be difficult to remember to show empathy. Sure, you may feel it immensely when patients walk in anxious, clutching their list of prescriptions, their husbands standing stoically by their side. But we may not show it when we forget how terrifying it feels to be in hospital. For us, it gradually becomes a second home – a workplace. This is something I’ve noticed in myself. I sometimes put so much focus on the physiology behind the chest pain of a young lady who has walked into A&E, I forget how it must feel to think you are about to die. The side effects of drugs race through my head as I force my brain to think back to that lecture we had been given just two weeks before, and forget how frightening it must be to suddenly be handed a prescription of ten drugs after five decades of good health.

For us as students who are new to this world of healthcare, with its abundance of facts and clinical skills to master, remembering a few empathetic phrases may well be helpful. And overtime, as we adapt to this new setting, we learn to develop empathy without using these rehearsed facts. Instead of seeing them as phrases to regurgitate during painful consultations, they can be seen as a stepping stone to ground us to reality.

Image from: http://medicalfutility.blogspot.co.uk/2010/07/canadas-parliamentary-committee-on.html

The Human Body

I remember being petrified on my first ever ward round. It was the first time I had properly been in a hospital. My work experience had been little more than running behind the junior, staring at X-Rays and sitting in the coffee room feeling important. But being on that ward round was the first time I had seen people who were ill. It’s funny, isn’t it? We don’t see many ill people. If you are lucky enough to have gone through life without anyone close being seriously unwell (and at 18 years old I hope most of us have), then what is illness other than a storyline on East Enders? What is medicine, but a career filled with running down corridors with your stethoscope dangling around your neck, injecting adrenaline and playing God in the operating theatre?
It was on that initial ward round that I saw how the body deteriorates. I saw the ravaging effects of metastatic cancer, the tearful family sitting around a half-empty bed. That was the first time I saw a grown man cry, a young woman overdose, an elderly gentleman grab onto the shoulders of two nurses as they tried to give him some dignity. I remember staring at the bottles of urine lying on the beds and the incontinence pads displayed on the shelves. It took me a while to get comfortable with this strange environment, and I truly believe that it was the motivation of a good team that helped me realise why I was there. It can be so uncomfortable to see a human body deteriorate in front of you; a man who once cycled to work everyday and played rugby with his kids now bed-bound. It feels so strange to be standing next to him and feeling like an intrusion upon the family. As I stood there I watched the doctors and nurses, pharmacists and physiotherapists carrying out their roles. I saw the determination in their faces as they helped him sit up, help him drink his tea and swallow his tablets. I still recall the discussion held quietly in an office with the wife perched upon the edge of her chair. She held a tissue tightly between her fingers, her nails digging deep into the cotton. Help would be provided, the doctor said in a tone that was gentle but not patronising. He will still be able to do a lot of things by himself. The pain can be dealt with. He will be able to communicate with the help of some therapy. I remember this whole scene playing out in front of me as if I were a member in the audience. I guess I was. It was a poignant moment as I watched the wife’s shoulders gradually let go of the tension, her muscles unclenching from the resistance that she had held for so long. She understood that she was not alone.
Maybe you can’t cure this gentleman, but you can make it easier for his wife and kids to cope. You can help him deal with his pain and give him back even a little bit of control over his life. And that sort of thing can be a huge milestone in someones life.
I remember being confused during that ward round, unsure about what I was doing or why I was there. But seeing that conversation helped remind me why I had gone into medicine in the first place. I hadn’t gone into the career to cure people, but to help them.

I feel like I have learnt a lot during my first year of placement. I understand the management of heart attacks, the physiology of asthma and the effects of morphine. I have also learnt to accept my vulnerabilities. I have learnt how to communicate with people without opening my mouth. I have learnt that silence can be important, that hospitals are scary places.

Humanity

I want to give a story to give an example of the non-scientific skills one picks up during placement.

I had just been asked to go and take a history from a patient who had arrived onto the ward: an elderly gentleman who has been in and out of hospital over the past few months. I walked over to him in my medical-student swagger: a sway of confidence with a touch of submissiveness. I held my hand out as I had seen so many consultants do before. I smiled politely and recited my name and rank, asking if I could ‘have a quick chat’ to which the patient nodded his approval.


And so I sat down and began my recitation,: phrases that had been moulded over the past few months through observation and practice. I had the list of topics I had to ask sketched within my mind, the questions flowing from my lips as an automaton, my pen tense at the ready like a journalist preparing for her next big scoop. The consultant would expect me to present my history in front of the rest of the team. I had to get this right.
And yet, as the rehearsed sentences left my mouth I noticed the immediate change in the man’s composure. He let out a brief sigh as his shoulders collapsed inwards. He turned his head away from me, his gaze brushing over the medication still left in its cup, the catheter half-covered by the blankets in an attempt to maintain his dignity.
‘I don’t want to talk right now, sorry.’


Surprised at the sudden change of mind, I nodded my understanding. I immediately began questioning myself as I stuffed my notebook into my bag. Was it the way I sat down beside him? Did I appear unprofessional? Was I too chatty?
As I stood up to leave, I blurted out a sentence without even thinking: a pleasant note to impart.
‘I imagine you must be fed-up coming into hospital so often.’
‘You have no idea.’
I turned around, surprised at the tone of his voice. It sounded like he wished to say more. I hovered near his bedside, unsure about my role in this setting. I hadn’t been taught about this – what was the protocol? Did I continue with the history?


He began to speak about his previous hospitalisations, the tediousness of the procedures, the ever-present infections that just wouldn’t go away. He told me about the breathlessness, the sudden panic in the middle of the night when his lungs screamed for air. The terror as he clutched at the side of his bed, alone in a house where no one could rush to his aid. He thought he was going to die alone. He thought his body would be left there, lying on that bed with no one to come and see how he was doing.
As he continued to talk, the story took a turn. I could see the creases upon his face as his eyes squinted into the past. He spoke about his wife, how they had first met. He told me about his adventures, his wish to see the world, his brashness as a young man. At this point he uttered a laugh, a smile traced upon the corners of his lips. I learnt about his wife’s death, his initial shock that slowly turned to self-blame. The walks to the park he began to take every day so he could get out of the house. His fear of returning to his house at the back of his mind, with his wife ever watching him as he walked around their house. He couldn’t force himself to get rid of her possessions. He hadn’t opened her closet since her death, fearful of the nostalgia that breathed in every corner of the room, that would envelop his body the minute he touched any remnant of her life. He spoke about sitting on buses and trains, making conversation with waiters at restaurants, anything to get him away from this dull ache.
As I sat there and listened, I felt out of my depth. I didn’t know what I was supposed to do. I had no idea how it felt to suddenly feel so breathless you thought you were going to die. I had never faced the monster of bereavement, the shadow of loss. I had never had a companion so close, that their absence took away not only a presence in the house, but a part of your personality. But I knew a little about the feelings he spoke about. I too had felt the nostalgia, the deep-seated loneliness. Nowhere near as strongly as they had encompassed his life – not for a single moment. But I could imagine.

I don’t know how long I spent listening to him. I don’t remember much after that conversation, except thanking him for opening up his life to me. I didn’t have a history to present that day during the ward round, but I felt I had learnt something so powerful, so poignant, and I felt privileged. I had come across something special. Something so unique that it cannot be found in the indexes of the textbooks. I realised how frustrating it must be to see person after person as you sit upon the hospital bed, all coming with their own agendas. The rehearsed phrases, the brief pieces of small talk. I reflected upon the way I had conducted myself as I had walked over to him, my lips already parted into the automatic phrases.


I’d like to think that experience changed the way I interacted with people. I tried to set aside the image of memorisation, putting my aims not in presenting another history and getting a golden ticket from the seniors, but learning something new about every person I met. Oh, don’t get me wrong. The science is important. The symptoms are important. The script of the history is incredibly important when it comes to treatment. But the way it is dressed, the way it is presented: that is important as well. The script may be the same, but the way it is worn by each person is different.

I do not think the argument lies in whether empathy can be taught, but how one can cultivate empathy with all the other pressures that such an atmosphere as the clinical setting can bring. One way I believe, is by having good role models. When you are placed in an unfamiliar situation, you turn to the expert in the room and follow their lead. We do this all the time when we enter a new building or an unfamiliar setting. By having role models, we learn how to interact with our patients through a caring manner that combines our compassion that brought us into medical school, with the knowledge that keeps us here. 

Dear Doctor

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Dear Doctor,

I hear you when you speak of that girl in the hospital ward. The ‘overdose in bed three.’ I hear the harsh judgements sneering through your lips, the sighs and the mutterings of ‘what a waste of life.’ As a student, I am all too privy to such remarks made in the corners of these hospitals. I have fallen upon them again and again.

Please do not be so quick to stereotype. Do you know how it feels to have your mind infiltrated by such intense emotions of self-hatred and loathing? Do you know how lonely it can be to lie curled within the four walls of your bedroom, just you and your mind waged in an eternal battle?

Yes, I realise how cliché that sounds. I know you have just come back from speaking to a young gentleman who has been paralysed. I know you have spent your years dealing with the terminally ill, holding the hands of the dying as you speak to a family overwhelmed with grief.

How can a teenage girl compare? Yes, she may appear to have everything. But aren’t humans’ more than just molecules and proteins? Don’t we all have dreams and desires of our own? What is it that makes us human? Our relationships, our goals, our ability to connect with one another. How would you feel to have these vital components torn away from you? No, it is not the equivalent of the man next door whose wife has just died. But that does not mean that she does not deserve your attention and your respect. You may have lived through the battles of the emergency department, the grievances of the families, the diagnosis’s of tumours to children barely in their teens. But she has not.

 

Look at her, sitting on the bed, her head bent over her lightly covered shoulders. Look at her fingers, fidgeting with the bed sheets, unsure what to touch or who to speak to. She is scared. She is in a new place. There are bright lights glaring down upon her, strangers rushing past her, eerie machines beeping at her. And inside her mind, the battle is continuing to rage. Look at the scars glistening upon her skin as she cowers in a blanket, trying to hide her wounds from the world. Aren’t those battle scars as well?

 

Imagine how it feels to have a mass of doctors suddenly gathering around your bed, all looking upon you with pity. Do you realise how exposed it can feel to be probed with such personal questions? The intricacies of your mind held open for a stranger to dissect.

‘Do you have any plans to end your life?

What methods have you thought about?’

 

She needs a friend. She needs someone to take her hand and ask her how she is feeling. Forget the Fluoxetine, the charts filled with drug doses. It is not a prescription pad that she needs. She needs a human touch.

I know she cannot hear you as you make your curt remarks. I know you will walk towards her filled with smiles and concerning eyes. I have seen that gentle handshake that you have mastered over the years, the slight pitch in your voice as you gently prod your questions. There is no doubt that you have a bedside manner. And within one minute you are gone, the prescription chart left upon her bed for the nurse to dispatch the drugs. The girl still sits there, her posture unchanged, unsure if the conversation had taken place.

I know you are busy. I know you have a team of doctors to command, a list of patients to see, a hospital to run. Yes, I know you have sat through hours of exams, studied well into countless nights to get to where you are standing now. I have respect for the devotion you have put into your career.

But please do not forget that young girl. Please remember to hold your tongue the next time you see a teenage overdose. Yes, to you it is another statistic to keep record of, another prescription to fill out. But to that teen lying in the corner, throwing up the contents of her stomach? She wanted to die just two hours ago. Do you know how that feels? To feel hopelessness so deep, that the future is but one long tunnel, filled with uncertainties and fear. Do you know how it feels to hold a bottle of pills in your hand, staring longingly at the container, at the hope it contains inside?

Yes, she will be fine. She will be discharged within a few hours, another free bed to fill. But please, the next time you come across such despair in someone’s eyes, do just one thing; sit down on the bed beside them, and ask them how they are. Look into their eyes as they speak, and let your whole being be encapsulated by their story. Let them open up to you, with patience and empathy. If someone had done this to them before, do you think they would be in this position now?

 

Please, the next time you blurt out another cutting remark, a sneer at the cries for attention. Look across the room at your patient sitting there. Look at their posture, their body language, their eyes. Does this look like the sort of person who needs your judgement? Or does this look like someone who needs a listening ear?

Best wishes,
A medical student

Loneliness

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“God, but life is loneliness, despite all the opiates, despite the shrill tinsel gaiety of “parties” with no purpose, despite the false grinning faces we all wear .. Yes, there is joy, fulfillment and companionship – but the loneliness of the soul in its appalling self-consciousness is horrible and overpowering. – Sylvia Plath

 

Loneliness

Who amongst us has not felt the hand of loneliness? The first breakup as a teen, the rejection letter lying on the kitchen table. Children moving out for the first time, cracks in the marriage. If loneliness is so widespread, so ‘normal,’ why do we need to talk about it? Aren’t we generally attracted to the more rare and wonderful aspects of life? The documentaries of the weird and wonderful medical conditions, the extremes of human behaviour. The topic of loneliness has instead been taken over by the arts, a subject to dissect by philosophers and novelists rather than scientists and clinicians.

Loneliness can be defined in a number of different ways. Emotional loneliness occurs in the absence of an attachment figure, while social loneliness occurs in the absence of a social network. Emotional loneliness has been compared to the feeling of distress of a small child who feels abandoned by their parent, while social loneliness is the feeling of exclusion by a child whose friends have left. Thus, loneliness can be described either as a devoid outer world, or an empty inner world. On the other hand, the cognitive approach suggests that loneliness stems from ones social expectations not being met. Could it be that through our reliance on social media, our expectations on relationships have become exaggerated?

 

But what is the opposite of loneliness? Is it social connection? What words would you use to describe the feeling of loneliness to someone who has never felt it before? For me personally, the words emptiness and darkness come into my mind (perhaps I am a bit of a melodramatic!).

Loneliness is different from solitude. Solitude can be an enlightening experience, leading to increased creativity and growth. Some of the best ideas have come through hours of sitting at an office desk, staring at a piece of paper. Just because more people in today’s society are living alone, does not mean that loneliness is on the rise. We must be careful not to mix these terms together. Loneliness is very different from solitude. Loneliness is the feeling of despair and alienation. It develops from the need for intimacy, and the rejection when one fails to find it. It is described as a social pain; what is the equivalent of morphine for the pain of loneliness?

The power of loneliness can be illustrated through the effects of solitary confinement. It has been suggested that prisoners who have been through solitary confinement develop psychiatric disorders such as depression and anxiety, often turning to self-harm as a means of escape. Solitary confinement is described as a form of psychological torture, with one Florida teenager describing his experience as “the only thing left to do is go crazy.” Humans are social creatures. Without stimuli and control, is it any wonder that depression, hypersensitivity and psychosis develop? This isn’t just an abstract concept that we are talking about, something for the philosophers to discuss at their round tables. It is has been linked to disease, happiness and relationships. It can be found in every aspect of our lives, in every infant and every adult – it is something that needs to be examined more closely through our microscopes.

 

“The most terrible poverty is loneliness, and the feeling of being unloved.” 
― Mother Teresa

 

The topic of loneliness has fascinated many people, from novelists to poets, theologians to philosophers, all attempting to give meaning to this beast. Yet psychoanalyst Shmuel Erlich suggested that the meaning of loneliness remains “an enigma” (Erlich 1998).

The concept of loneliness looks deep at the need for human connection. Through the rise in empiricism, we have gained considerable scientific knowledge and a whirlwind of medical technology. Yet what has happened to the conversation involving spirituality, social customs and personal relationships? What has happened to the human perspective? Dig as deep as you like into the functions of the human body, the junctions between the cells and the DNA mutations – just remember that the knowledge that is discovered needs to be applied to a living, breathing human being. How much can we quantify the despair of loneliness, the cracks of a thirty-year marriage, the grief of a mother who has lost her child? We may spend our lives pursuing wealth and status, but ultimately it is meaning that we all search for in the end.

Existential aloneness is necessarily a part of serious illness.” – S. Kay Toombs

 

Image from: http://www.robertsoncooper.com/good-daily-psychology-article/1066-is-loneliness-the-next-workplace-ticking-time-bomb

How does it affect us as doctors?

As healthcare professionals, we are trained to be objective, to look at the statistics, and arm ourselves with the jargons of relative-risk and correlations. But walk into any hospital, and you will see wards not filled with numbers and graphs, nor organisms converting oxygen into carbon dioxide. You will see vulnerability, the eyes of loss, of angst and fear. You will see people tested to their limits, people whose lives are cracked and crumbling – people who have started to enter the threshold of loneliness.

Is loneliness a pathological condition? Intolerance for being alone was once a criterion for the diagnosis of Borderline Personality Disorder in DSM-III. It can be argued that it can have a purpose in our lives; it can form the path towards self-acceptance, growth and spiritual transcendence. The existential perspective goes so far to say that loneliness is what it means to be human. It argues that through loneliness, one can begin to question one’s own existence, and thereby create meaning for oneself in a world that has lost all meaning. Western literature paints loneliness as a vital part of being human. It is seen as an obstacle one must climb through during the various experiences of life – through change, bereavement, love and loss. It has been argued that just as joy is made brighter through the experiences of sorrow, loneliness shines a light on the meaning of our life. Yet loneliness has also been linked to alcoholism, depression and suicidal ideation. At what point do we has healthcare professionals need to step in and help someone climb out from this abyss? Where do we draw the line between self-discovery and pathology?

 

“Life is dialogical by its very nature. To live means to engage in dialogue, to question, to listen, to answer, to disagree.” – Bakhtin

 

Loneliness can also manifest itself through illness, both physical and mental. The feeling of a broken body, of being a burden on one’s family can lead to helplessness. Roles that were once worn with pride are now cast aside: the mother, the carer, the provider. These can lead to a loss of self-identity and raise questions of how one can contribute to society. Ultimately, being ill can be an isolating experience, raising questions of ones reasons for existence and the value of one’s life. As healthcare professionals, it is our duty to guide our patients through this journey, helping them to discover their own meanings of this loneliness, to help them affirm their identity. It is not always distraction or drugs that a patient needs, but an open conversation, helping patients to gain new perceptions on what it means to be human. The role of the professional is not to provide answers or interpretations, but to listen, to share and to understand. It is a difficult task, filled with uncertainty and anxiety for both practitioner and patient, but it is also human.

We often cast aside people who are deemed as being lonely; they are the shy recluses, the self-pitying. We suggest that the cure for loneliness is simple advice: join clubs, create hobbies, meet new people.

By engulfing ourselves in such advice, we forget something vital: you do not have to be alone to be lonely. It is more than just being independent or respectful of others privacy; it is a feeling of distress. Loneliness illustrates our need for human intimacy. So where can we find this painkiller to drug us against such distress? Which specialist will take away our aches and pains? You do not need to be a trained medical professional to combat loneliness. Just remember, Hello is the most powerful word against loneliness.

As a final thought I want to leave you with this person’s experience of loneliness:

 

References

Erlich H. Shmuel, “On Loneliness, Narcissism, and Intimacy,” American Journal of Psychoanalysis 58, no.2 (1998): 135-162.

Russell, D , Peplau, L. A.. & Ferguson, M. L. (1978). Developing a measure of loneliness. Journal of Personality Assessment, 42, 290-294.

Deaf Culture

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“Try not to associate bodily defect with mental, my good friend, except for a solid reason” 

– Charles Dickens, David Copperfield

Deafness as a Culture

What is the first thought that pops into your head when you think of the word deaf? Do you think of disability, an inability to function in society? Do you think of loss, to be deficient in one of the most vital senses? Or do you think of group of people with similar values and beliefs, brought together through their experiences?

The medical model sees deafness as a disability, an impairment that needs to be fixed. A disability is defined in the Oxford Dictionary as a physical or mental condition that limits a person’s movements, senses or activities. In this sense, one could agree that deafness is considered a disability.

However, when people speak of deafness, they speak of two different forms: deafness, with a small d, indicating disability, and Deafness, with a large D, indicating a culture.

Culture is defined as the ideas, customs, and social behavior of a particular people or society. Deafness can therefore be viewed either as a disability or altered human experience. Deaf culture can include beliefs, behaviours, traditions, history and values of the community. Deaf culture is an ethnocentric culture, based more on sign language and relationships than a common native land – it is a global culture. Deaf culture sees itself as a language minority than a disability. This is further emphasized in Article 30, Paragraph 4 of the UN Conventions on the Rights of Persons with Disability: Persons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity, including sign languages and Deaf culture” (World Federation of the Deaf).

 

Values and Beliefs

A culture tends to have its own beliefs and customs that are shared by its members, and deaf culture is no different. Deaf social protocol is based upon maintaining good visibility with others in the environment (Deaf Culture 2014).

Some examples of social customs within this culture include:

  • Rules of etiquette for getting attention and politely negotiating a signed environment
  • Keeping one another informed of what is going on in ones environment – for example, letting someone know that one is going to the bathroom (in the hearing environment this is often not needed)
  • Being more blunt than hearing people
  • Maintaining a steady gaze while signing (between two hearing people, it may be rude to maintain uninterrupted eye contact)

 

Arts and Literature

As with other cultures, deaf culture is rich in history and art. You can do a M.A. in Deaf Studies in Gallaudet University in Washington, looking at deaf social life of groups and individuals including history, cultural studies and language (Gallaudet 2014).

Storytelling also makes up a big part of the culture. Clayton Valli was an American deaf linguist who created works in ASL performed through handshape, movement and facial expression. One of his pieces of work, called Dandelion can be found here:

There is also a National Theatre of the Deaf in the USA that involves productions using ASL and spoken word. Their mission statement is to educate the public and open their eyes and ears to deaf culture (National Theatre of the Deaf 2014). It has won the Tony Award for Theatrical Excellence, and included actors such as Sir Michael Redgrave and Meryl Streep. It has helped to legitimize the use of sign language on TV and provided employment for deaf artists, as well as giving a sense of pride to members of the deaf community.

 

Image from: http://www.ntd.org/ntd_about.html

 

Another group called Deaf Professional Arts Network creates music videos with deaf performers, with the aim of making music accessible for the deaf (DPN 2014). They have covered songs such as Beautiful by Christina Aguilera, Lose Yourself by Eminem and Mr. Brightside by The Killers and their DVD released in 2008 sold over 10,000 copies.

Media is a vital component in getting ones message heard, and many artistic groups throughout the world have increased awareness of deaf culture, helping to stem ignorance and begin a conversation about the experience of being deaf. Movies and TV programs also needs to start promoting deafness not as a pathological condition, but a way of life to help banish this perception of disease and impairment.

Saul Kessler wrote a poem, They Say I’m Deaf, about his own experiences (Anderson 1998):

They say I’m deaf,

These folks who call me friend.

They do not comprehend.

They say I’m deaf,

And look on me as queer,

Because I cannot hear.

They say I’m deaf,

I, who hear all day

My throbbing heart at play,

The song the sunset sings,

The joy of pretty things.

The smiles that greet my eye,

Two lovers passing by,

A brook, a tree, a bird;

Who says I have not heard?

Aye, tho’ it must seem odd,

At night I oft hear God.

So many kinds, I get,

Of happy songs, and yet

They say I’m deaf!

 

Cochlear Implant Controversy

 Cochlear implants are electronic devices that can be surgically implanted in patients who are deaf due to sensory hair cell damage. They can provide hearing in order to increase understanding of speech, and it is estimated that 324,000 people worldwide have received them as of 2012 (NIDCD 2013).

Although this may seem like an incredible treatment for those who have difficulty hearing, it also gives the suggestion that deafness is a condition that needs to be fixed. Some deaf people are not so much against the cochlear implant, than what it represents: a lack of respect for their culture. Indeed, some people have gone so far as to describe these devices as a means of cultural genocide.

It can be argued that deafness, as a cultural identity, should be encouraged to thrive and be supported in today’s diverse society. Others believe that every child should be given an equal chance in life, and that through cochlear implants one will have opened the door to greater opportunities. Through cochlear implants, children are given a greater chance at finding employment, integrating with the community at large and achieving a greater level of success. But why should a deviation from the norm result in fewer opportunities in the first place? Shouldn’t we be dealing with this inequality rather than trying to cover it?

Doctors may see a deaf child as missing something vital, being impaired and therefore not able to function in society. The word impairment implies fault; imagine the implications this can have on a child who is told they need to be fixed. Children should feel proud of who they are, not ashamed of what they were born with. What kind of impact would such thoughts have on their self-esteem? We all know how isolating it can feel to be different during childhood; why should we push these children further away from society?

Cochlear implants are seen as being oppressive: an illustration of our overreliance on the biomedical model. Instead of seeing a child as impaired, it would be more helpful to see the child as having a different natural language. We live in an age where we preach about acceptance and diversity. Shouldn’t we be embracing the deaf culture instead of annihilating it?

What does this mean about the future? If we find the cure for deafness tomorrow, does that eradicate an entire culture? Will there be people out there who will refuse to accept the cure for their child? And what implications will that have on the medical profession – can we accept this refusal? After all, every child deserves the best start in life. Where do we stand between respecting ones beliefs and doing the best for our patient?

 

Diversity 

It has been suggested that deafness can be an isolating experience; you are part of a minority, cut off from the rest of the world But one could also argue that there are plenty of cultural minorities out there; despite English becoming more and more vital in our multicultural environment, there are many minor cultures out there who do not have English as their native tongue and are therefore cut off from a large part of civilization. Does that stop them from being a culture?

Diversity is a good thing: it is what makes society grow. It is needed for creativity, for quenching ignorance and progressing as a race.

Some deaf people argue that they do not have any impairment, that they are able to communicate effectively via sign language, and it is the hearing people who may be at a disadvantage for not being able to communicate with them.

What is considered normal in this day and age? Having an illness gives you a new identity, a new way of looking at the world and translating your surroundings. What is considered illness to one person is considered normal to another. By embracing the different views on deafness, we embrace the diversity of mankind and what it has to offer.

 

References

Anderson, N. 1998. American Deaf Culture [Online]. Available at: http://wlc2.csumb.edu/asl/projects/202_1_98/Anderson/nicole.html [Accessed: 17th December 2014]

Deaf Culture. 2014. Comparative chart: deaf and ethnic cultures [Online]. Available at: http://www.deafculture.com/ethnic_culture/ [Accessed: 17th December 2014]

Deaf Cultural Centre. Arts & Culture [Online]. Available at: http://www.deafculturalcentre.com/arts-culture/ [Accessed: 17th December 2014]

 Deaf Professional Arts Network. About [Online]. Available at: http://d-pan.com/about/ [Accessed: 17th December 2014]

Gallaudet University. 2014. M.A. Deaf Studies [Online]. Available at: http://www.gallaudet.edu/american_sign_language_and_deaf_studies/graduate_programs/ma_deaf_studies.html [Accessed: 17th December 2014

Jones, M.A. 2002. Deafness as Culture: A Psychosocial Perspective. Disability Studies Quarterly. 22:51-60

National Theatre of the Deaf. 2014. About the National Theatre of the Deaf [Online]. Available at: http://www.ntd.org/ntd_about.html [Accessed: 17th December 2014]

World Federation of the Deaf. Deaf culture [Online]. Available at: http://wfdeaf.org/our-work/focus-areas/deaf-culture [Accessed: 17th December 2014]

Paedophilia

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This is a topic that gets people’s blood boiling. Described as one of society’s darkest taboo, Paedophilia is a topic that we see constantly on our screens – indeed, it was only recently that a policy on the airline British Airways forbade men to sit next to unaccompanied children (BBC News 2010). This fear is of course understandable: we have an innate duty to protect our children. But are we letting this fear get in the way of our judgement? McCartan 2004 found that 58% of participants in his study agreed that paedophiles were “evil.” Even within the criminal justice system, paedophiles seem to be at the bottom of the hierarchy. The lowest of the low. Going anywhere near the subject releases a tirade of emotions, the words capital punishment coming up repeatedly conversation. Vladimir Nabokov’s novel, Lolita, which described a man’s obsession with a young girl, and the controversy it generated illustrates society’s views on such desires.

But what is Paedophilia? The suggestion that it lies on a broad spectrum which encompasses hetro- and homosexuality has been met with much disgust. Does it encompass its own little category? Is it an illness? Can it be fixed? What if the person is happy with their thoughts and does not act upon their desires – should it be fixed? Where do we cross the line and suddenly become the thought police? Where do we draw the boundary between the protection of society and autonomy of the individual?

In the medical profession, Paedophilia is seen as a disorder. It can be found in the International Classification of Diseases-10 (ICD-10) under ‘Disorders of Sexual Preference’ which lists a set of criteria. However, its mere classification as a disorder does not mean it is accepted as one. This is not the type of disorder you can speak to your GP about. Many doctors have children of their own, and such encounters may stimulate strong emotions in the doctors themselves, building brick walls in front of the patient.

There are many theories out there that attempt to explain these urges. It has been suggested that paedophiles turn to children due to their lack of intimacy with adults. This could be due to difficulties in social skills, low self-esteem and low self-confidence. This suggestion provides us with a perfect template for treatment: by working on these interpersonal skills and increasing ones confidence, it can be hoped that such urges can be dissipated. Of course, it is never that simple. In order to initiate treatment, the patient must be willing to engage. There are some patients who may not accept the impact of their behaviour on their victims, while others still may claim that what they are doing is in the child’s best interests. It is vital that such cognitive distortions are dealt with before proceeding onto more complex forms of treatment.

But is treatment the right answer? Currently in England and Wales, the main aim is not treatment but management of risk (Harrison 2007). The protection of society is paramount when dealing with such destructive behaviours. However, is monitoring and containment sufficient to prevent future actions? What about the life of the individual? Through treatment, wouldn’t we be liberating the patient from their urges, thereby allowing them to have a choice over their actions? Or has the person signed away their liberty the minute they have committed the crime?

Image from: http://careers.bmj.com/careers/advice/view-article.html?id=1953

In 2009, the Polish President Lech Kaczynski signed a law making chemical castration compulsory for adults who had raped children or their family members (BBC News 2009). At what point are we tipping the scale from protection of society to violation of human rights?

There will always be people with paedophilic urges who live with the view that what they are doing is right. Their distorted view of the world can have horrific consequences on their victims, and their treatment can be a long and arduous process. On the other hand, there are people out there who recognise the abnormality of their thoughts. What support is there for them?

StopItNow! Is a UK child sexual abuse prevention campaign offering a helpline for confidential advice and support. The helpline receives calls from adults who are worried about their thoughts and behaviour. The helpline is advertised through the police forces within the UK, and pops up as an advert if one tries to open a website recognised by the Internet Watch Foundation as containing child sexual images. The helpline received 17,051 calls between 2002-2012, indicating a need for such a service (Brown et al. 2014). The question is, how willing are people to pick up the phone and speak about such alien desires? How do we increase awareness of such a problem? We see posters of depression and anxiety pinned around our local hospitals, the signs of cancer blazing from the posters in our GP surgeries. Can the same thing be done about Paedophilia? Have we crossed that barrier yet? A quick glance at the local newspaper would suggest not. I’m not sure if I myself would feel comfortable sitting opposite a poster advertising a helpline for paedophilic urges. Nor would the mother cradling her son in her lap. Such apprehensiveness is undoubtedly a good thing, but it is always helpful to challenge the taboos that prevail in our lives.

Perhaps society is not ready to have such a conversation yet. How would you feel if a best friend came to you and revealed such urges? What thoughts would go through your mind?

Prevention is the strongest weapon we have against physical diseases; vaccinations and sanitations have transformed our world and the way we look at illness. Why can’t we apply the same principles to psychological illnesses, and grasp these disorders before they grow, before they take over and destroy countless lives in the process?

Imagine how it would feel to have these thoughts racing through your mind – thoughts that you know are wrong. Imagine having no control over these desires, feeling trapped in a society where your feelings could be seen as a crime. Where do you go? Who do you turn to? Do you hide in your room, praying no one will be able to read your thoughts? What hope do you have if your own, intricate feelings and desires are brandished with hatred and disgust?

References

BBC News. 2009. Polish president signs chemical castration law [Online].Available at: http://news.bbc.co.uk/1/hi/world/europe/8383698.stm [Accessed: 3rd July 2014]

BBC News. 2010. BA changes child seating policy following court case [Online]. Available at: http://www.bbc.co.uk/news/uk-11061577 [Accessed: 24th June 2014]

Brown, A., Jago, N., Kerr, J., Nicholls, C.M., Paskell, C., Webster, S. 2014. Call to keep children safe from sexual abuse: A study of the use and effects of the Stop It Now! UK and Ireland Helpline [Online]. Available at: http://www.natcen.ac.uk/media/338805/stop-it-now-uk-findings-.pdf [Accessed 9th July 2014]

Harrison, K. 2007. The High-Risk Sex Offender Strategy in England and Wales: Is Chemical Castration and option? The Howard Journal of Criminal Justice. 46:16-31

McCartan, K. 2004. ‘Here There Be Monsters’: The public’s perception of paedophiles with particular reference to Belfast and Leicester. Medicine, Science and the Law. 44:327-342

Culture and Medicine

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People come to doctors for help. Pain is one of the main reasons people turn to healthcare professionals. They seek relief, rehabilitation and a listening ear. But do I express pain in the same way as you? If I suffer from a headache, I may be more inclined to sleep it off than a friend who will search for the paracetamol. We all know that stoic amongst our friends; the one who shows no emotion and rarely appears to be phased by anything. Everyone has their own way of dealing with pain and distress, and culture is its biggest influence.

Culture defines how a person views themselves, their relationships and the things that are important in their life (Kleinman and Benson 2006). It can affect how we dress, what we eat and even what occupation we go into. It has been suggested that individualists make judgments about happiness based on recent emotions, while collectivists base happiness on both emotions and cultural values of satisfaction. Such a perspective influences how a person experiences lapses in their health. It is important to ask our patients: what is important to you?

It has been argued that culture is a fluid process that is recreated through our interactions with people and the inequalities we come across. However, each culture generally has a core set of beliefs and values. For example, when meeting the health needs for Cambodian women in the USA, attention is often paid to their shared cultural strengths such as enduring pain with dignity (Chau, Yu and Tran 2010).

Of course there is a danger of becoming too reliant on culture – it can be too easy to view a group through the rigidity of stereotypes. And we must be aware in this ever-increasing globalized world that cultures can often mix together. For example, Bhui (2011) found that there was a higher risk of suicide in South Asian women, but this did not apply if they were born in the UK, – what external influences could have been introduced that attenuated this risk?

 

Are we looking after a sick body or a sick society?

Different societies accept different methods of expressing emotion. This is important not only for the individual, but for the clinician treating who is treating them. We must understand where this expression of distress comes from if we are to respond in an appropriate manner. It has been suggested that patients are most satisfied when their psychiatrist shares their model of understanding distress (Bhui 2002). Some may prefer sympathy; others may want the facts straight away; while others still might want some time alone.

It is necessary to explore a person’s model of belief for illness:

What does illness mean to them?

What are the cultural meanings? A burden? Loss of job? More time with family?

What are the social supports?

How is the doctor viewed? An authoritative figure? Paternalistic?

What is the view on medication? Scared of drugs? Worried about side effects? Little awareness?

 Some people in India may use karma to explain illness. In Sri Lanka, youngsters could not understand the idea of feeling ‘numb’ in PTSD (Fernando 2012). In the UK, people may return to their GP again and again with vague complaints, when the underlying problem may be psychosocial, illustrated beautifully in this blog post:

https://abetternhs.wordpress.com/2013/05/04/loneliness/

 

Although bodies have signs and symptoms, only people become sick.

Nichter 2010 described five expressions of idioms of distress:

  • Medicine-taking behavior: requests for prescriptions, self-medication
  • Biomedical disease nomenclature: associating distress with disease
  • Diagnostic tests: expressing distress to others by taking tests
  • Healthcare-seeking: searching for a practitioner and a diagnosis
  • Changes in consumption patterns: eg. increased smoking – distress communicated nonverbally

If your questions focus purely on the diagnosis, the patients experience is lost, and with that, possible compliance to treatment. Even the word compliance indicates a power relationship between doctor and patient. Blumhagen 1962 cited in Parry 1984 compiled some sample questions to reach past the diagnostic criteria and help explore the issue:

What do you think has caused your problem?

Why do you think it started when it did?

How severe do you think your illness is?

What do you fear most about your illness?

What are the chief problems your illness has caused for you?

What are the most important results you hope to get from treatment?

Expressions can affect the way we see our suffering and how we communicate it to others. Despite these differences, there are some similarities in our idioms of distress. Each disease has a specific set of symptoms; thus, it can be assumed that these criteria can be applied universally. Indeed the idea of global mental health rests on the notion that these concepts of disease can be applied across cultures. There is evidence of such similarities. For example, in Sri Lankan Sinhalese, the term hitha kadaavetuna means “my mind broke” and is used to describe overwhelming grief or trauma (Fernando 2012). If we compare this to the West, we notice that many people also use the metaphor of their mind being broken to describe experiences of depression. It could be suggested that the feeling of having a broken mind may be an etic experience of depression; it is these little things that tie our experiences together across continents and show a shared understanding.

 

Image from: http://www.herbalmedicinereviews.com/what-is-herbal-medicine/

 

The Culture of Healthcare

It is important not only to remember the cultural context in which our patient stands, but also the culture in which we reign. We are a part of the culture of healthcare, and this comes with its own boundaries and biases. It has been suggested that training mental health workers should involve an acknowledgement of the alien status of psychiatry in some cultures (Campbell and Burgess 2012). It can be easy for doctors to feel alienated from patients when ones belief is so estranged from their own. Thus, self-awareness of ones own biases is crucial in maintaining an open relationship with the patient.

In 1977, H.M.B. Murphy argued in an editorial in Psychological Medicine that “transcultural psychiatry should begin at home” (Swartz 2012). We must listen to our patients before categorizing them. Psychiatry, like any medical speciality, requires a global currency as a science, yet it still needs to value the importance of people. It is arguably one of the most holistic specialities we have. It is not helpful to wade into another culture with our westernized perceptions of what is health and what is illness. Swartz 2012 reminds us of the image of the colonist man with a bible in one hand and a rifle in the other. Here is such an example (Lee 2012):

A mother, Maria, comes to see a doctor with her teenage daughter who has started skipping school and using alcohol. The mother emigrated from Mexico to the USA, and has difficulty understanding her daughter’s refusal to obey her parents.

The doctor has “Eurocentric values” and believes that the mother needs to let her daughter explore her autonomy and distance herself.

Maria finds this advice unhelpful, but due to her beliefs about people in authority, she withdraws quietly.

Another example is the release of the National Mental Health Program in 2002 by the Indian government that placed emphasis on psychotropic medication. Jain and Jadhav 2009 argued that this focus on medication silenced the voices of the community. They noticed that social workers in rural villages took histories of patients, decontextualizing the symptoms into a list from which the doctors could make a diagnosis. The symptoms of the patients were framed through a biomedical lens, and clinical dialogues were structured around compliance. The medication eventually served as a boundary, with psychologists and social workers being seen as assistant doctors and part of the doctors entourage – the power lying in the hands of the prescribers. The clinicians were alienated from the daily lives of their patients, ignoring the idioms used by their patients to describe their suffering.

 

What do we do?

Although we can create checklists for clinicians to tick through cultural influence on their patients, we must not forget the individual sitting in front of us. Families can adopt new values and may not always be tied to their heritage.

So what can we do? We acknowledge the person sitting in front of us in their entirety. We become aware of any judgments that may cross our mind, and fix our eye on the person with open curiosity. We learn from our patients, and they give us the answers on how we can help them. They are the experts in the room.

 

References

Bhui, K. 2002. Explanatory models for mental distress: implications for clinical practice and research. The British Journal of Psychiatry. 181:6-7

 

Bhui, K. 2011. Cultural psychiatry and epidemiology: Researching the means, methods and meanings. Transcultural Psychiatry. 48:90-103

 

Campbell, C., Burgess, R. 2012. The role of communities in advancing the goals of the Movement for Global Mental Health. Transcultural Psychiatry. 49: 379-395

 

Chau, R.C.M., Yu, S.W.K., Tran, C.T.L. 2010. The diversity based approach to culturally sensitive practices. International Social Work. 54:21-33

 

Fernando, G.A. 2012. The roads less traveled: Mapping some pathways on the global mental health research roadmap. Transcultural Psychiatry. 49:396-417

 

Ganzer, C., Ornstein, E.D. 2002. A sea of trouble: A relational approach to the culturally sensitive treatment of a severly disturbed client. Clinical Social Work Journal. 30:127-144

 

Jain, S., Jadhav, S. 2009. Pills that swallow policy: clinical ethnography of a community mental health program in Northern India. Transcultural Psychiatry. 46:60-85

 

Kleinman, A., Benson, P. 2006. Anthropology in the Clinic: The Problem of Cultural Competency and How to Fix It. PLOS Medicine. 3:e294

 

Lee, E. A working model of cross-cultural clinical practice (CCCP). Clinical Social Work Journal. 40:23-36

 

Nichter, M. 2010. Idioms of Distress Revisited. Culture, Medicine and Psychiatry. 34:401-416

 

Parry, K. 1984. Concepts from Medical Anthropology for Clinicians. Physical Therapy. 64:929-933

 

Swartz, L. 2012. An unruly coming of age: The benefits of discomfort for global mental health. Transcultural Psychiatry. 49:531-538

Pathographies

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“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” 

– Susan Sontag, Illness as a Metaphor

 

Words are important. They allow us to meet a common ground, to share experiences and learn from each other. They can evoke emotions and open new friendships. They can also be therapeutic, and a way to fill the gap between doctor and patient.

Pathographies, defined by the Oxford Dictionary as ‘the study of the life of an individual or the history of a community with regard to the influence of a particular disease or psychological disorder’ have become more popular over the years. Walk into any bookstore and you will eventually come across the healthcare corner: a small stack of books by people who have crossed the abyss into the land of ill health. Such stories speak of hope, love, loss and despair as patients and their families come to terms with the sudden invasion into their lives. Treading through illness can be an isolating experience, filled with pain and uncertainty.

The Database of Individual Patient Experience is a UK-based charity that runs two websites: healthtalkonline and youthhealthtalk. It was created by Dr Ann McPherson, a GP who was diagnosed with breast cancer, but found that she had no one to talk to and share her experiences with As a result, these websites are filled with patient’s experiences of their illnesses, how they coped and their family’s reactions. Such websites can open a common ground for those who are suffering, those who have just received a diagnosis and the friends and family who want to learn about how they can help.

 

“I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy, and tired of acting as though I have something to hide.” 

– Kay Redfield Jamison, An Unquiet Mind

 

How can they help us?

Pathographies are about putting the patient at the heart of healthcare – a sentence that has been bounced around in todays society. Can you truly understand what a person is going through if you have never suffered that ailment yourself? By putting experiences into words, a bridge is created between these two islands, allowing those of us who work in healthcare to reach our arms that tiny bit further. These stories can help us to take a step back from our jargon-filled lives. To not see the routine dialysis, but the precious hours spent with the husband. Not the dry numbers steadily increasing, but the feeling of accomplishment when one puts both feet on the ground. Illness is not just a list of problems that need to be crossed off. It is a continuous process, filled with dark corners and dead ends.

In an increasingly globalized world, a cultural lens is ever more needed. Everyone experiences illness in a different way. The culture we grew up in influences how we look at ailments, the way we handle pain and how we use our social networks to get through our suffering. It is through pathographies that these different worlds are brought together, creating a narrative, which allows us to delve inside the patient’s mind, regardless of ethnicity or race. We look beyond the clinical terms, the graphs and the numbers, and not only does this help us to see the patient through a broader lens, it also breaks barriers with the next person we meet. It will allow us to look after the ill in the way that they want to be treated, with dignity and compassion. It puts control back in the person’s hands, at a time when chaos reigns. Pathographies can help to break the formulaic clinical story. A person is not a machine with a broken part, but an autonomous being with desires and goals, whose need for help cannot always be fit into a category.

Pathographies can also help us to change our treatments, tailoring them towards a particular lifestyle. We no longer live in the world of the authoritative doctor dressed in his white coat; we let the patient’s words fill the silence.

All too often we can get caught up in the stereotypes: the smoker with COPD, the teenage overdose, the forty-year-old female with gallstones. Working in healthcare is a culture in itself; you are in a bubble of your own, stacking symptoms on top of patients, and then tearing them away with a blast of medication. Through patient pathographies, we can step outside of this bubble and breath the air of our patients.

Instead of opening another lengthy medical textbook, looking up the obscure and the malignant, we can open up a pathography, and step into our patient’s lives. No matter what our role, whether it’s inside healthcare or not, the voice of illness speaks in everyone’s ear, and it deserves to be heard.

Some examples of Patient Narratives:

  • ·      Illness as a Metaphor, AIDs as a Metaphor by Sustan Sontag
  • ·      An Unquiet Mind by Kay Redfield Jamison
  • ·      C: Because Cowards get Cancer by John Diamond
  • ·      Intoxicated by my Illness by Anatole Broyard

Death

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Since beginning clinical medicine, I feel as if I have stepped into a different world. One filled with constant beeping, bright lights and rushing footsteps. This may be the image that crosses many peoples minds, but we often forget about the emotional side; seeing people at the line between life and death – a line that is gradually fading away. Faced with the diversity of human emotion, from fear to hope, love to loss. Being privy to events that make your heart twist and turn, looking through the mirror at your own life, at the luck that can smash through our bodies and wrench us from our feet.

Why is death such a taboo subject? Why is something that is so prevalent, something that is a part of everyone’s life, spoken about in hushes and whispers? Is it because of the medicalisation of daily life? Do we have unrealistic beliefs about immortality? Can we just stick a wire into every pore of our being, zapping ourselves with drugs and electricity so that we stay as pristine as a newly opened toy? Do we expect some sort of warranty? If ever we falter, medicine will always be there to break our fall. It will hammer together our bones, stick together our vessels and wrap up our falling limbs. News about the latest scientific breakthroughs constantly invade our television screens, creating a world of perfection inside our heads.

Is it because death is no longer in front of our eyes, that we can so easily ignore it? No longer are our streets scattered with the ill and dying. In our minds, we have created the fantasy that we will be young forever. Being elderly is almost seen as a sign of weakness – something to battle with our anti-wrinkle creams and botox injections – the war on ageing.

The fear of death has been with us for a long time. It is an understandable fear, something that we had previously conquered through myths and religion. These days our dreams of immortality now lie upon scientific discovery; by replacing every part of our body perhaps we can beat nature.

Death is not always a bad thing. It is not a monster under the bed, something to be fed through fear and denial. We must remember that death is a part of life; Terry Pratchett illustrated this beautifully in his Discworld series, in which Death is personified as an old friend. In the series, Death no longer wears the cloak of disease and pain, but is described as an “angel” and a “kindly death.”

Death is now just a word for most of us; we have become so used to sweeping illness under the carpet, brandishing our wand and making symptoms disappear, that death has little meaning beyond the skeletal Grim Reaper waving his scythe. Or if there is any meaning loaded in the word, it is of fear and apprehension.

If we continue down this path of ignoring the very word and pretending it doesn’t exist, where will we end? How far do we continue down the path of playing with nature’s game? How long do we continue to watch people deteriorate, their suffering prolonged – all to keep that heart pumping those few seconds longer? Being given the chance to live an extra year can be a gift, but we must be careful not to go too far and take away what makes a person human.