In Chapter 20 of the book, (Sex and sexual orientation), I wrote about the sensitivity of minority gender and sexual orientation issues, including: the adaptation of documentation to take account of same-sex couples, whether in legal or informal partnerships; the recording of next-of-kin choices; personal pronouns and names for transgender and transsexual individuals – and several more important questions.

Two international news stories draw attention to special cases of these issues, which are interesting and revealing. The first, reported in the Bangkok Post 20 April, 2009, relates to hijras – the people of the ‘third sex’, thought to number at least a million individuals in India (and more elsewhere in S.E. Asia).

Although the term ‘eunuch’ is used in English, it is not certain how many hijras have actually been castrated, though some certainly have and are often regarded as the pure expression of that form of being. The category as a whole, probably labelled ‘transgender’ in Western circles, may encompass the terms transsexual, transvestite, hermaphrodite, androgyne, intersex, and true eunuch status.

Here are some extracts from the Bangkok Post article:

India’s one million eunuchs face a unique dilemma every election season — do they stand in the men’s or women’s queue at polling stations or stay away altogether?

In the past, eunuchs — the term used for cross-dressers, pre- and post-operative transsexuals known here as hijras — have largely abstained from casting their ballots because they are unwilling to identify themselves as male or female on voter registration forms.
‘While some eunuchs do vote by listing themselves as female, many are pushing for an alternative or ‘third sex’ option on identity cards, after being granted the franchise in 1994.

And later:

Despite the stigma surrounding them, a campaign to recognise eunuchs as a third sex has yielded some results.

They can now write ‘E’ for eunuch on passports and on certain government forms, but the quest for acceptance at the ballot box - where they have to identify themselves as male or female - still eludes them in culturally conservative India.

This highlights, at a social and political level, issues which will be highly relevant to individual patients HCPs will meet from time to time in practice in many different cultures. The primary challenge is being able to respond to patients in ways which match their own view of themselves, and particularly not forcing them into categories which they feel, or are, offensive and/or inaccurate. The categories of ‘male’ and female’ on documentation are not sufficient any more than are the limited options of ‘married/single/divorced’ (when some patients may be in legal or informal same-sex partnerships).

The dilemma of toilets

This second story comes from the Pattaya Daily News in Thailand. It’s one of those tales which reinforces my affection for this endearing, resourceful and unpredictable country (with its dark side, too).

ISARN SCHOOL BUILDS UNI-SEX TOILET FOR ITS KATOEYS

A high school in North-eastern Thailand has set new precedents by building a toilet for katoey (ladies of the second category) students. Kampang School in Isarn conducted a survey among their students and discovered that nearly 260 students considered themselves katoeys. Accordingly, the school decided to create a unisex toilet for their student-ladies of the second category…the toilet has a sign reading ‘Transvestite Toilet’ with an androgynous symbol - half man in blue and half woman in red.

[After consulting several experts and dictionaries, I have not yet found a translation of the (possibly local dialect) words, and I doubt if 'transvestite' as reported in the newspaper story is correct. New info 22-04-09: the Thai word probably translates best as 'transgender', encompassing all kinds of - in this case male - gender variations. The word is of ancient origin, from the Pali language.]

In the book, I wrote about icon-identified toilets and the problems transgender people can have with choice and with the reactions of others to their choice. Here, in a culture, in many (but not all) ways relaxed with ambiguity, an honest and practical solution to an issue of concern has been found.

The paper reports that: ‘Apparently, the transgender students are overjoyed about the new toilet, because they will no longer have to suffer dirty looks from their peers.’ It seems that adolescent tolerance extends only so far!

One of the extraordinary aspects of rural communities in north eastern Thailand (Isarn), where agriculture provides the tough daily reality of most people’s lives, and where you’d expect a comprehensively macho male culture, is the number of effeminate men and transgender individuals. They are a sizable minority with an often high local profile and are regarded with anything from respect or possessive affection to mild satire.

To my knowledge, there are few places, however, even in Thailand, where any other institution has actually surveyed its population on such issues, as this school has, and sought to meet their wishes. It’s doubtful that such attitudes of simple, respectful maturity can be found in many places in the whole world.

Bangkok post link: India’s eunuchs face ‘third sex’ vote dilemma
Pattaya Daily News link: ISARN SCHOOL BUILDS UNI-SEX TOILET FOR ITS KATOEYS

Margaret Heywood, 58, a nurse at the Royal Sussex Hospital, Brighton, UK, was struck off by the Nursing and Midwifery Council for failing to ‘follow her obligations as a nurse.’ Concerned about the treatment of elderly patients, in July 2005, she filmed conditions in her hospital, undercover, for the BBC Panorama programme. (Reported by BBC News, 16 April 2009: http://news.bbc.co.uk/2/hi/uk_news/england/sussex/8002559.stm)

I am not in a position to comment on the detailed rights and wrongs of this case (though there seems to be strong evidence in favour of the nurse’s position), but the controversy raises issues which are important for all of us and for achieving the best possible healthcare.

Following discussion of this case, some specific lessons and recommendations appear at the end of the post.

If patients are being neglected, or abused or given less than satisfactory treatment, what should we do? Obviously the first stage is for staff to represent their views, ideally as a group, to local management, and to insist that they are taken seriously. Sadly, of course, in an institution where patients are badly treated, management itself is likely to be in collusion with the status quo (through laziness, blindness or financial priorities) and staff concerns may well be dismissed (as they seem to have been in the Sussex case).

When this happens there are three options for staff: put up with things as they are; resign; find some way of protesting and bringing the problems to wider attention, first to management, then beyond. In the last case, the risks are great, because, in spite of the rhetoric of openness and transparency, many managers and bureaucrats have a deeply-seated hostility to criticism and often react with oppressive and brutal measures.

The Chair of the Council which struck this nurse off, said, as reported by the BBC:
‘Although the conditions on the ward were dreadful, it was not necessary to breach [patient] confidentiality to seek to improve them by the method chosen…[the misconduct] was fundamentally incompatible with being a nurse.’

‘Dreadful conditions’? How can such a frightening situation have arisen? I do not know if any patient identities were revealed in the film, nor, if they were, whether the patients had given their consent (that would be important, certainly), but don’t ‘dreadful conditions’ demand dramatic remedies? And don’t the responsibilities of a nurse require them to take measures to bring such conditions to light and improve them?

What is fascinating about the Chair’s comment (amongst much else) is the comparative weighing of two ethical imperatives: patient confidentiality and patient safety and welfare. If we had to choose one above the other, which would it be? Can such a choice be made? Are there ways in which both principles could be respected while still finding a solution? (We do not know for certain whether patient confidentiality was actually breached in this case.)

Is ‘patient confidentiality’ being used as a manipulative moral flag or is it a genuine, fundamental concern of those who are hostile to the nurse’s revelations? Could breaches of confidentiality be justified in the face of real threats to patient welfare and safety? Where do you stand?

In the book, I write about the profound effects of the ethos of an organisation on the morale and effectiveness of HCPs. In this case we seem to have an organisation, within a much wider, supportive professional context, which is neglectful of many of the major priorities of staff and patient wellbeing and communication, and punishes those who criticise them.

In the BBC report, a Department of Health spokesman is quoted as saying:
‘Whistle-blowers already have full protection under the Public Interest Disclosure Act passed by this Government.

‘We expect any member of staff who reports concerns about the safety or quality of care to be listened to by their managers and action taken to address their concerns.’

Maybe I can guess your response to this, somewhat similar to my own: this is a communication so far from reality as to be laughable; in the real world, it’s just not like that. What happens when managers don’t listen?

This whole story is about how you can effectively communicate issues of major importance to those who may be able and willing to do something. Choosing to contact the media, even as a last resort, is a very powerful and effective course of action. But we also know that it is very dangerous, especially for individuals, in a world often more concerned with saving face than solving problems.

For the last word in this story, here’s what Joyce Robins, co-director of Patient Concern is reported as saying:

‘This just demonstrates the priorities of the regulators – rules come before patients every time. The message that goes out to nurses is: however badly you see patients treated, keep your [mouth] shut.’

What do you think about this and similar issues?

Lessons and recommendations

The penalties of not listening

People who are not listened to, or who feel they are not listened to, are likely to react badly in one way or another – from minor individual effects like transient irritation or resentment, through the entire spectrum, to massive, public effects like rebellion and revolution at the other extreme.

The act of not listening when someone else has something to say is potentially dangerous to all parties.

If we are not listening to our patients, we shall miss important information about their lives, feelings, health and everything else; we shall upset them, because they will know we are not taking them seriously, and their confidence and trust will be undermined, if not destroyed completely.

If managers do not pay careful attention to what their staff are saying, morale will be damaged and loyalty alienated.

The same dangers apply to teachers, parents, partners, friends, colleagues: if we don’t listen to others the chances are we’ll neglect, hurt, damage, frustrate, alienate them. The consequences can be serious.

People who are not listened to may simply end up carrying a burden of internal anger and frustration (which may damage their mental equilibrium); they may go off and complain and villify the cause of their frustration (in the case of patients or customers, damaging the reputation of an organisation); they may be prompted to go and take much more dramatic, possibly disproportionate action (media exposure and litigation being two of the nasty possibilities).

When we listen seriously to people, even when we do not wholly agree with them, or disagree completely, we take some of the steam out of their anger, frustration or distress: their case is being given a chance and that opens the doors to dialogue and negotiation. Such dialogue may not always end in agreement, but the case has been treated with respect and seriousness, and is far less likely to result in escalation of hostilities (though it may).

In the book, the section on complaints outlines the damaging results of not keeping an open ear for patient dissatisfaction, and not paying serious attention to it when it emerges. The same applies to the dissatisfaction of everyone: we must listen – and, where possible, concede the case or find a negotiated settlement.

Empathy

Stories like that of the nurse above suggest that empathy is often absent in responses to individuals and their concerns: what has brought this person to the point of such distress? What is it they are seeking (and the insight here could be positive or negative)? Is this a responsible, concerned professional, or a loose cannon out to cause trouble? What lies behind the strength of this feeling and is it something that should be taken seriously and investigated? What are the needs of this individual in terms of resolving the distress? How can we resolve the situation with least damage to all parties in terms of their needs, feelings and priorities?

When citizens take to the streets, it is often because they feel no-one is listening to their concerns, no-one is taking them seriously. Leaders who listen and have empathy are much less likely to have rioters besieging their cities than those who are actively attentive to their people. Healthcare is just as vulnerable to defective listening and absent empathy and no-one should be surprised that there are occasionally nasty conflicts which damage everyone in some way, when basic communication skills are often so sadly neglected.

People who live in deprived areas of the country are more likely to die after heart surgery than those from more affluent places, even after allowing for the effects of smoking, obesity and diabetes, a new study shows today.

The research suggests that health inequalities have deeper roots than lifestyle choices. An editorial that accompanies the study in the British Medical Journal says poverty needs to be tackled if the health of the entire nation is to improve.

“Poverty is commonly understood to be a financial problem, but it can also cause social, familial, cultural, educational, environmental, emotional and aspirational problems,” say cardiologist Martin Denvir and cardiothoracic surgeon Vipin Zamvar from Edinburgh Royal Infirmary.

“Narrowing the gap between the health of the rich and the poor can be achieved only by dealing with the root causes early on in life, and continuously throughout life. A good start - including decent education, adequate housing and employment opportunities - is most important. Health will follow.”

The study was led by Domenico Pagano, consultant in cardiac surgery at the University Hospital Birmingham foundation trust.

The team which analysed data on 44,902 patients, with an average age of 65, who had heart surgery between 1997 and 2007 at five hospitals in Birmingham and north-west England. They based their assessment of each patient’s social deprivation on their postcode in the 2001 census.

They found that 1,461 patients (3.25%) died in hospital after surgery, and 5,563 more (12.4%) died within five years. The chances of dying were closely linked to the patient’s level of social deprivation.

Smoking, obesity and diabetes were all higher in socially-deprived areas, and increased a patient’s chances of dying after heart surgery. Diabetes increased the risk by 31% and smoking by 29%.

However, when the researchers made allowance for these three complicating factors, they still found that people from deprived areas were more likely to die. Their findings indicate, they say, “that some additional factors related to deprivation might influence outcome”.

They add: “In the face of easy access to effective health care, the real challenge lies in developing a coherent health-conscious approach to education and to the environment. This is essential to maximise the benefits of expensive and complex healthcare interventions such as cardiac surgery.”

“Despite 10 years of progress, people from deprived areas still disproportionately shoulder the burden of cardiovascular disease. We should be aiming to reduce the level of deaths across the country to the current level in south-east England or below,” said Dr Mike Knapton, associate medical director at the British Heart Foundation.

Copyright Guardian Newspapers Limited 2009

To see this story with its related links on the guardian.co.uk site, go to
http://www.guardian.co.uk/society/2009/apr/03/health-poverty-heart-surgery

This is one of those great, elegant, clear books about complex subjects which are a joy to read.

Its scope is an understanding of the psychology, sociology and politics of risk and risk perception in almost all aspects of our lives, from familiar, everyday risks like car-travel, to the big perplexing issues of environmental toxicology and terrorism. There are some specific examples from medicine and pharmaceuticals (the US silicone breast implant crisis, and lots about cancer and cancer risks statistics among others), but the book deals with much broader issues which shine a bright light on all aspects of risk in healthcare.

In my book, we discuss how illogical our perception of risk often is. Gardner takes as one of his central theses the conflict between ‘Gut’ (our unconscious, hard-wired, survival responses) and ‘Head’ – the rational, analytical, considered response which has such trouble moderating the instincts through skeptical questioning and the examination of probability. Dreadful things, he points out, are, for reasons he examines, instinctively felt to be more likely even when there is little or no evidence or plausible likelihood.

A recurrent theme is the use of fear to intensify perception of risk, which serves the interests of those who have products to sell (drugs, health supplements, media outlets, security devices, military equipment, and so on); those who need to raise funds or attract public support (environmental groups, NGOs, police, parent pressure-groups); or have political agendas (‘Vote for us and we’ll protect you!’). He recounts, with extensive, convincing evidence, how far all these constituencies camouflage, distort or ignore facts and probabilities in the pursuit of increasing fear, making people believe they are at imminent risk of harm, and so manipulating them into buying products, taking action or supporting causes the needs for which simply cannot be justified by the neglected facts.

The book is full of stunning examples of human irrationality. Gardner points out that, after 9/11, Americans abandoned flying in huge numbers and took to the roads. He calculates that about 1,500 lives were lost in road accidents which would not have happened if people had continued flying, because the probability of dying in a road accident was vastly greater than the risk of boarding a plane that would be hi-jacked (in the aftermath of 9/11, a risk that was virtually zero). Fear ruled the decisions.

Another example, this time illustrating the impact of immediacy: after an earthquake, people are conscientious about insuring their property and possessions (at a time when the risk is probably at its lowest), but, as time passes, and as the risk actually increases, they become careless and neglect to renew their premiums.

In vivid detail, with extensive evidence, the book blows apart the basis for many common misconceptions and fears, particularly with regard to the probability of dreaded events happening (abduction of a child by a stranger; age of onset of breast cancer, for example). It also highlights how we seem to ignore the highest and commonest risks – smoking and obesity, for example, road deaths, accidents in the home – which are the causes of more deaths than all the fantasy risks put together (including terrorism, of course).

Gardner’s conclusion is that, in the developed world certainly, we are healthier, wealthier and safer than at any time in human history, yet we are consumed with fear about the future and about many risks which are almost invisible.

As background to the whole discussion of risk and risk communication in healthcare, this is an invaluable and wonderfully readable book.

But it’s scientifically and therapeutically very important. In some respects, it really ought to be categorized under ‘treatment’, because any action, including what seems like no action or neutral action, always has some direct effect on health and welfare and is not, as commonly assumed, actually neutral or empty at all. The giving of a sugar-pill or even a diagnosis itself have no pharmaceutical or surgical components, but either may affect the physiology and/or the psychology of the recipient in important ways.

We’re probably most familiar with placebos in double-blind clinical trials where the effect of an active pharmaceutical substance is tested against the effect of an inactive pill by researchers and patients, none of whom knows who is receiving what. Results may show that the active substance has more therapeutic effect than the placebo (though this is not always the case), but it is very rare for the placebo to have no effect, and common for a placebo to have more effect than no treatment at all. Medical literature is thick with accounts of patients feeling better or getting better for no apparent medical reason at all: the placebo effect? Almost certainly, except for natural recovery and spontaneous remission (which may themselves be influenced by the placebo effect, of course).

There are even evidenced records of placebo surgery:

…a team of physicians discovered that sham arthroscopic surgery (in which the surgeon makes an incision but no instruments enter the knee joint) worked as well as real surgery for patients suffering from osteoarthritis.

[Quoted in Markle and McCrea, What if medicine disappeared? p. 54]

What does this startling phenomenon tell us about the nature of being human? It tells us something very obvious, and something we should know even without the specific evidence of the placebo effect: people are integrated organisms in whom body and mind are inseparable, whose feelings affect their bodies as much as their organs affect their feelings; in whom, to a large extent, the duality of ‘mind’ and ‘body’ is an unhelpful and distorting myth. We know this: people who are happy are less prone to illness and recover more quickly from it than those who are miserable; the emotionally vulnerable suffer greater morbidity than those who are confident, optimistic and independent. Psychological state almost certainly affects the robustness of the immune system and all the body’s defenses. Expectations influence how people feel and what happens to them.

Nothing but this can explain why an inactive pill can make people better. It is not, of course, the intrinsic qualities of the pill which have therapeutic effect, but the transaction in which the pill is given. If the patient believes they are being given something useful, their body is prone to respond as if they were being given something actually useful, triggering, presumably, self-healing mechanisms which were always available without external intervention (the release of dopamine is one example). We can assume that the potential impact will be greater the more the patient trusts the giver; the more the context of receipt is convincing; the more positive the expectations are. It’s the human transaction and the patient’s belief which produce the healing effect. (There’s evidence that even the colour of a pill may affect patient’s expectations of it and physiological response to it.)

Not much talked about, but equally important, is the nocebo effect – the extent to which patients may suffer negative effects for no apparent scientific or physiological reason. Perhaps the commonest example of this is the patient who has some investment in being ill with accompanying low expectations of treatment, whose rationally prescribed therapy has little or no effect, or negative effects. It is said that patients who are worried or obsessed by the possibility of particular disease or adverse reactions are much more likely to become sick or experience pain than those who think less about such things.

We cannot doubt that the impact of a relationship with an HCP can be positive or negative, on a scale from healing to damaging, according to the quality of the personal care and communications offered – irrespective of pharmaceutical or surgical intervention. That is why, earlier, I included diagnosis as one among many aspects in discussion of the placebo effect: the very way in which a disease is identified and communicated will certainly affect the feelings of the patient, and may, therefore, possibly affect the course of the disease and how the patient deals with it. We might hear talk of the ‘placebo effect of diagnosis’ – but that’s nonsense, because while it may be pleasing, it’s also intervention.

The issue of diagnosis highlights the inadequacy of the concept of placebo, and the absurdity of the disease model of medicine:every element of interaction with a patient has content and meaning and has some effect on the whole person. Giving an active or inactive pill, providing a diagnosis, are not neutral, empty, mechanical processes: they take place within a relationship, and can be done warmly, coldly, effectively, briskly, confidently, cynically – and in a thousand other ways. Those ways will affect the patient directly, to a greater or lesser extent, irrespective of the message or the treatment bring given.

Placebo’, in its common usage, is an inadequate concept because it refers only to the physical substance and ignores the quality of the transaction in which the substance is given and the expectations raised. How much of the positive effect of an active substance given in clinical trials results from the effect of the transaction in which it is provided and the belief of the patients in the beneficent intentions of the researchers?

This whole issue is, of course, at the very heart of my book, and underlies the obsession with relating with patients as whole people, not as carriers of disease states to be treated. The relationship is a critical, inescapably influential element of any treatment and, in some situations, may be the only treatment needed.

There’s an interesting allied effect of expectation from 1950s industrial sociology, known as the Hawthorne effect: in this, a group of workers being observed and researched, increase their productivity as a result solely of the attention given them while being studied. If you study the behaviour of a group of people, unless you are very clever, your research will change how they behave and your study will record behaviour which is different from what would have occurred had you not been there. The change may last only for the period you are present, or slightly longer, unless the changes are somehow embedded in new structures, rules or expectations. Patients too, we know, may be co-operative and compliant while we are around, but then go off and do entirely their own thing once we are out of sight.

There’s a lengthy and very intelligent review of the placebo effect and several related effects of expectation in: The Hawthorne, Pygmalion, Placebo and other effects of expectation: some notes, by Steve Draper at:http://www.psy.gla.ac.uk/~steve/hawth.html#placeb

Lots more on the Hawthorne effect at: http://www.12manage.com/methods_mayo_hawthorne_effect.html

This is a great book, written by a man wrestling with all the challenges and contradictions of emergency doctoring. His competence, intelligence and humanity make his practice distinguished and his writing riveting and illuminating. The technical and emotional journey is a tough one, but his acute awareness and thoughtful introspection enrich this memoir with vivid and instructive accounts of relationships with patients and colleagues; of failures and successes; of the emotional impact of facing the daily drama of the ER: how much time is there for empathy and compassion? How far should suffering be kept at a distance? What is there to offer to the bereaved?

Austin’s practice seems to be a perfect blend of technical competence and expert communications – even though there are times when he fails by his own high standards. Against all the odds of pressure and disorder, he struggles to maintain his humanity in relations with patients and colleagues – even those whose weaknesses or obstreporousness compromise the work.

He is frank about his weaknesses and doubts, and about his errors and misjudgements. Particularly unusual is his account of the impact of his obsession with work – and rotating shifts – on the quality of his home life, and his strenuous and painful path to restoring domestic contentment. He and his wife have one child with Down syndrome, and the interplay between that tough family reality and his practice is beautifully and touchingly explored.

This man is a gifted writer too, and the book is full of acute observations, lively dialogue, thoughtful and illuminating reflection, and dynamic prose.

Something for the pain is a wonderful exemplum of the kind of practice I struggled to characterise in Healthcare Communication and leaves me full of admiration. In the most distressing and pressurised medical environment, Austin shows how best practice can flourish against all odds, and how a collaborative, compassionate team can work effectively together to save lives, reduce suffering and deal humanely with all kinds and conditions of people.