Trust and Betrayal: Medicine and Social Relations

 

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Chapter 1

Chapter One

I remember travelling on a suburban train in Melbourne, Australia, when I was ten years old. The carriage was old and not air-conditioned and the windows and doors were able to be opened to let in fresh air. There was a girl of about my age sitting in the seat opposite me. As we neared my destination she bent forward and asked me to show her my ticket.  Without thinking I gave it to her and she promptly threw it out the window.  I was aghast, as in those days there was always a man at the station waiting to collect the tickets. I feared my shame and the disappointment my parents would feel if I was caught, apparently travelling without a ticket. Fortunately, I was able to hide until the ticket-collector went back into his office and thus made my escape. No harm was done yet I still feel the guilt almost as sharply now as I felt it then, even though I was innocent. Even more, I remember the simple trust I had in that girl and my dismay when she betrayed it.

Twenty-five years later I was a junior consultant surgeon at a large teaching hospital in Melbourne. I had been on call the previous night and we were reviewing the patients who had been admitted and treated under my care. This took place in front of all the other members of the surgical unit, including those much more senior than myself.  One of our surgical registrars had telephoned me overnight for advice on the management of a patient and I had agreed to his suggested treatment. It was clear on reviewing our decision the following morning that another course of action would have been preferable. The registrar was questioned about his actions and he turned towards me and said that I had agreed to them. I denied this and said he must have been mistaken. I lied and put my reputation before his. My memory of his reaction is burnt into my soul and I can still see the hurt in his eyes. I had betrayed him and I am sure he never trusted me again. Probably, he was wary of trusting other consultants in the future. My guilt lives with me still, even though I made sure I never did such a thing again, no matter at what cost to my personal and professional image.

For many years I was an Orthopaedic Surgeon and I often discussed surgical procedures and their associated risks with my patients.  My decision to explore the meaning and value of trust began some twenty years ago when I was explaining to a patient the various complications of a certain operation.  She interrupted me to say, “I don’t need to know all that, I trust you”.  I thought it remarkable that she should say this as we had met for the first time only twenty minutes previously. If hers had been an isolated case then I may have thought less about it, as it was not exceptional for a patient to say something like that to me.  Acknowledging the importance most of us give to having some say in, and control over, what happens to us, particularly those things that might lead us to some harm, I later began to reflect on what it was that motivated her  to surrender some of this control to me.  What did she mean when she said she trusted me and what brought her to do so?  Was there anything about me as a person she trusted or did I, perhaps, simply represent a professional whom she thought it was safe to trust because of my position? 

My initial reaction had been to feel somewhat flattered that I was considered somebody of such character as to be trustworthy, but this emotional response was soon followed by a realisation that she had placed some burden upon me.  For some reason I felt strongly that I had to be worthy of her trust.  If my patient was to abrogate one of her rights, that is, in this circumstance a right to be as fully informed as possible, how did that affect my obligation to her?  In some ways it would seem that by offering her trust to me she reduced my responsibilities, as I did not appear to have to give her all the information she may have needed to make a properly informed decision about whether she should have the operation.  Nevertheless, I felt that she had also placed an added responsibility upon me that was separate from and in addition to my normal and expected fiduciary duty to make sure she had enough information to give fully informed consent for her operation.  She was taking a risk in trusting me.  It now became quite easy for me to leave out significant factors in the management of her condition that may have been in her best interests to know.  She certainly could not be aware of how flawed a person I really was.  Yet I now believed I was expected to take on the responsibility of acting well towards somebody who trusted me, simply because of the very idea that she did trust me.  In my superficial assessment of her trust I felt at least two things.  Firstly, a moral obligation to her and secondly, an emotional response to the trust she had placed in me.  It made me feel good and want to be good.  It did not occur to me then that I might also betray her trust.

In life we often make decisions and take risks.  If we enter a relationship with a surgeon these risks can be quite significant and sometimes life threatening.  It is plainly prudent to minimize risks and, as much as possible, to insist on some form of accountability from those we deal with.  As human relationships are often unequal, protecting the weaker party from the stronger may require some sort of social artifice and one way of doing this is to have a formal contract that is protected by the law and by legal redress if things go awry.  I wondered if it might not be better if my patient and I entered into some form of a contract, so that a regulated agreement that fully acknowledged her rights, my duties and our joint responsibilities protected both of us.  There are, of course, other ways of regulating unequal relationships outside of a strictly legal regime.  These include general conventions to behave in particular ways, social obligations, moral principles, duties espoused by organisations and the feeling of individual responsibility that one person may have for another.  Another way is through a trusting relationship, which, perhaps, could include all these things.  That my patient chose a path involving trust suggests that she believed that there were some benefits in trusting that made it worthwhile to take a risk on me.  What were those benefits and what was the risk?

Around this time I had just completed a Masters degree in Bioethics at Monash University in Melbourne. I followed my interest in trust by then completing a thesis on the subject within the philosophy department of the Arts faculty. This took eight years, as I continued to work as a surgeon, and at the end of this time I put it away and did not think much about it for the next ten years. My study was not wasted and it led to a change in my life as I took up teaching ethics at the exciting new medical school at James Cook University in North Queensland.  One day I mentioned to a friend that I had written a thesis on trust and she asked to read it.  I was surprised to find that she had enjoyed it and found it both informative and helpful. Sarndra suggested I turn it into a book. I said I did not have the energy to do it without her help and thought she might be able to enhance and complement what I had written. With what I suspect was some trepidation, she agreed to be involved.

When you do a medical degree and then train as a surgeon you develop a way of thinking that appears to serve you well in that trade. I found that studying ethics and philosophy required me to learn to think quite differently.  It took quite a while to learn what amounted to a new language and even longer to expand the way I saw the world.  Eventually I probably become a philosopher.  This book, therefore, owes much to philosophy, but it also includes something of the trials and triumphs of medicine and also a splattering of science. Why did I need courage?  Because sometimes I lay myself and my colleagues bare. About half way through my thesis I began to understand that to begin to explain the importance of trust, I must also address betrayal.

Sarndra, her husband, children and friends have had many experiences of trust, its value and its dangers.  It is Sarndra’s voice which supplies and drives much of the narrative behind the humanity in this book.  I, a surgeon and quasi-philosopher, did most of the work exploring the possible meaning behind it.  Together, we share our ideas and, we hope, some wisdom gleaned from reflecting on our experiences.  Many of the stories we tell developed from events that have happened in own lives and those we have shared with others.  The story is told mostly in the first person from my perspective, as, as Sarndra insists, it is mostly mine.  Unsurprisingly, tales that involve patients, whose privacy is sacrosanct, whilst based on real events have been changed so that no one person can be recognised.

However capable or powerful a person is, when she takes the role of a patient she becomes the weaker partner.  I use the term ‘patient’, which is derived from a Latin word meaning ‘to suffer,’ as I believe it is an appropriate term and it is not demeaning.  There has been a tendency for some to use the term ‘client’, but this comes from another Latin root that means to hear, obey or to be subordinate and in Roman usage this meant a plebeian under the control of a patrician, the very opposite to valuing a person’s autonomy.  Using the word ‘patient’ emphasises that in the relationship the doctor is dealing with somebody who is suffering and who may need special consideration and compassion. I use the term ‘doctor’ to include all qualified medical practitioners.  The healing professions include many others: nurses, physiotherapists, social workers, technicians and ambulance workers, to name just a few.  I see them as part of my world and they too are embraced in this book as equal health professionals.

This is Sarndra’s voice:

When I was eighteen years old, my life altered in a way that was shocking to me and my parents and it changed me and how I saw my future completely. 

I wanted to have the mole on my back removed.  It was quite a small mole but, having few other blemishes at that age, I saw it as large and unsightly.  

I persuaded my mother to make an appointment to see my godfather, ‘Uncle Stephen’, who was a leading plastic surgeon and a close friend of my parents.  My mother, who had a flat, brown mole on her wrist, which she thought had been growing larger and altering its shape, also attended the appointment. 

The doctor examined both moles carefully, which included photographing them from all angles necessitating pushing them about.  He then said that he had time to excise only one of our moles and decided to excise my mother’s first, as the removal of mine was for “cosmetic reasons” only.

That night, after towelling myself dry after showering, I noticed that the mole, which had felt sore since my visit to the specialist, had a long ribbon of blood descending from it.  I was immediately dispatched to our family doctor, who instructed me to keep the mole covered with a plaster during the family’s upcoming holiday on the Gold Coast, using an antiseptic cream during each change of dressing.  He did not suggest that I return to my plastic surgeon.

I followed my doctor’s instructions but, when I kept my appointment with my surgeon a month later and he uncovered the mole, I was greeted with at first silence, and then a heartfelt, “Oh, no.”  He was afraid that what he thought had been an ordinary mole had become the most dangerous mole of all:  a melanoma.

Uncle Stephen was upset and agitated.  He brought in two other plastic surgeons to examine the mole in the hope that he was mistaken.  Their diagnoses agreed with his.  He also brought in an oncologist to discuss what procedures would need to take place in order to keep me as safe as possible and to keep scarring to a minimum.

I remember sitting on the edge of the examination table swinging my legs.  I watched as the men walked up and down the corridor outside, looking at me through the door with serious faces.  I heard my uncle murmuring, “If only it hadn’t happened to Sarndra.  Anyone but her.”

The surgeon excised the mole meticulously and prepared the specimen for sending to pathology for a final diagnosis. 

What could I make of it?  There was little in my short life that had happened to me or my young friends that prepared me for this.  It couldn’t be that serious, could it?  I smiled at the doctors but they didn’t smile back.

I was admitted to hospital for surgery.  This involved the removal of the pectoral muscle under my right arm and all axillary lymph-nodes, leaving a scar 170 mm long, and the cutting of further flesh from my back leaving a ‘divot’ measuring 80 mm x 60mm which required a skin-graft.  The skin was removed from the top of my right arm, leaving another large scar.  My godfather insisted on being the one to stitch me up.

I spent much of the following year when I was alone depressed and despairing about what I saw as awful disfigurements.  The surgery had been totally invasive, the resultant devastation very difficult for an eighteen-year-old to bear.  I thought I would never have a boyfriend now and only a nunnery would accept me!  I was, however, very keen to regain more use of my arm than the surgeons had told me I would be able to achieve:  unable to lift the arm above my head, throw a ball, play tennis, even do the ironing!  But I was heavily involved in sport and athletics at school and was determined to prove them wrong, and I did.

“Be grateful it wasn’t your face,” admonished caring friends.  “You’re lucky, really.”  But I didn’t feel lucky.

Did I feel betrayed at the time?  No.  I was incensed at the idea.  This plastic surgeon, a very able man, had made an error of judgement.  He was a doctor who was also a friend and no-one, however lofty, can claim to be outside the very human possibility that errors will occur.  He did his best, but he got it wrong. 

Sarndra trusted her Uncle Stephen on a number of levels.  These may not have been obvious to her at the time, as trust is something we do not often think about, or at least not until it is too late.  She allowed Stephen to look at her back and to touch, manipulate and photograph her mole.  She wouldn’t allow most people to do that and, if it were as plain ‘Uncle Stephen’ that he touched her, in any other context it would have been very uncomfortable for her and she probably would not have allowed it.  Stephen had a special role as a surgeon and Sarndra allowed him to touch her because of this.  No matter how much Sarndra trusted Stephen as her family’s close friend, a trust that had developed all her life as she learnt to know and love him, and he her, she also trusted him, in these circumstances, because he was a surgeon.  She probably hadn’t thought of that before and she slipped into the role of being a patient perhaps with some discomfort.  Stephen the ‘uncle’ and Stephen the ‘surgeon’ were in some ways two different people.  If she trusted Stephen as a surgeon, she did this without any previous experience of this side of him and probably relied on his reputation, her parents’ faith in him and because surgeons are expected to behave in a trustworthy way.

Then everything changed.  Sarndra perceived Uncle Stephen’s reaction in diagnosing the melanoma as one of horror.  Uncle Stephen obviously cared, but he particularly cared for her, murmuring “anyone but Sarndra”.  Uncle Stephen’s emotional reaction to the problem was a complex one because of his unique relationship with Sarndra.  She was not just any patient.  It is difficult for us to imagine Uncle Stephen not caring for any young woman in such circumstances, but his position does complicate our reaction to his attitude to Sarndra and her subsequent feelings about what happened.

Sarndra was vulnerable as she was young and inexperienced.  Her description of the surgery and her precise measurements of the scar and her reflections on her deformity show what a major effect this had on her life and her view of herself as a young woman.  This was something that really mattered to her and, in spite of support from her surgeon, her family and her friends, she felt alone and despairing.

Hegel, the eighteenth century German philosopher, described personal trust in this way:

“I can trust a person if I believe he has sufficient insight to treat my cause as if it were his own and to deal with it in the light of his own best knowledge and conscience.”[1]

The person I trust is expected to try and put himself in my position and assume my values and aspirations and act upon these as he thinks I would wish him to act.

Hegel’s definition of trust is a personal one and he sees trust as an integral part of a relationship between two people.  We mostly tend to think of trust as part of a relationship between two individuals, but we often include small groups as constituting a trusting relationship providing there are significant personal relationships within the group.  This could be illustrated as between members of a team or a small group of people with a common goal.  Trust in a personal sense can be contrasted with a general non-personal trust, such as we might apply to a profession, like a group of accountants or doctors, or institutions like a hospital.  If we are to include large organisations in our attempt to understand trust, we may need to expand our definition to decide whether a large institution can be considered in terms of trustworthiness or whether we should be content with thinking of institutions only in terms of reliability. When someone decides to trust another person it seems likely that that she believes that she is dealing with a person worthy of her trust.  We appear to give particular value to a person whom we consider to be trustworthy.  There is a dimension of respected judgement and character in the person whom we describe as ‘trustworthy’ that is not present when we describe someone as merely ‘reliable’.  We admire people of good character and good will and these are presumably some of the features of a trustworthy person.  In contradistinction, the vision we have of people whom we label ‘untrustworthy’, as opposed to ‘unreliable’, suggests the connotations of those two words are strikingly different.  This may be particularly so in unequal relationships, like the medical one, where the patient’s outcome may depend on the personal attributes of the doctor.

Trust in personal relationships usually involves making choices about the giving of ‘goods’ to another.  I use the term ‘goods’ or ‘a good’ to mean anything that we posses, hold or care about and which has a significant meaning to us.  This includes information that is relevant to our well-being. The trusting person, or truster, relies on the goodwill of the person who is being trusted, or trustee, and thus becomes vulnerable to the consequent power of the trustee.  I will also examine how the trusting relationship has an added dimension, in that the truster also takes, or is disposed to take, a certain attitude to the trustee and perhaps also the trustee may take a certain attitude to the truster.  This attitude may consist of an emotional response and an expectation of how the other person ought to behave.

The personal trust I have in mind refers to that which occurs when a person says or implies “I will trust you.”  The truster should have sincerely considered what is meant by this statement and this implies he has asked himself the question “Ought I trust you?”[2]  This further implies that he has some choice in the matter, that he has thought about it and that he is thinking rationally.  The statement “I will trust you” should mean that I have considered the situation in which I have a personal good, which I cannot, or choose not to, look after myself and have decided to give it to you to look after.  I make a choice to give you my good to look after as I could freely choose not to give it to you.  My choice includes my assessment of the value of the good to me and your worthiness and ability to look after it.

This excludes from this version of personal trust statements like “you give me no choice but to trust you”.  The fact that I say, “I am given no choice” means that my options are limited or I believe that I am being coerced into trusting you.  This is not an action of my own free will but one that has been forced upon me by some external power or set of circumstances.  It might even be unreasonable to use the word ‘rely’ in this situation, as to say “you give me no choice but to rely on you” also suggests an action that is beyond my control.  It might be a better statement to say “I am in your power and am unable to influence what you do but I hope that you will look after my goods as I would like”, or “I am forced to depend on you”.  We might also exclude trivial expressions like “I trust you have not forgotten” or “I can’t trust you to do anything properly”, yet in some circumstances these may have real meaning.

When people trust doctors they are likely to expect more of them than they do of policemen or airline pilots.  This is not to diminish the critical importance that policemen and others whom we depend on should be trustworthy, but because of the degree of intimacy that may happen in the doctor-patient relationship, where secrets, vices and weaknesses can be exposed.  These are also exposed to policemen and lawyers and many other professionals but are seen in different ways.  Patients are at a disadvantage because of their ill health, but also they are powerless and often uncertain.  They need to be able to trust the doctor.  This makes the relationship particularly vulnerable to any suspicion or suggestion of betrayal and it makes it very easy for patients to come to distrust doctors if things go wrong.  However, it may be that some patients too willingly hand over their responsibility and are too quick to blame others if they do not achieve their desired outcome.

Good human relations involve all parties and a ‘relationship’ should include responsibility of thought and action, even from the less powerful party.  I was once on a panel selecting young doctors to train as orthopaedic surgeons.  The candidates were asked how they would respond to a patient who asked not to be fully informed; rather like my patient.  The candidates’ answer was invariably that they would not completely accept her attitude and would insist on her knowing at least the most common and more dangerous complications of a procedure.  The candidates reasoned that a patient has some responsibility for her own fate and ought not to delegate this entirely to another.

Sarndra’s thought:

From my experience I, as the patient, may also feel that, no matter how much information the doctor has given me in the consultation time allotted - fifteen to twenty minutes, say – it could never equal, or even put a dent in, the body of knowledge, training and experience of my physician.  Why not, then, use my common sense and make the leap of faith required to trust the doctor, whose ability to make an “informed choice” must be so much greater than mine?  

In the particular trusting relationships I am presently discussing, the truster voluntarily gives some power to the trustee over his goods.  The voluntary nature of this type of trust can be implied, as I can place myself in a situation of trust where I can expect the person with whom I am relating to behave as though it is assumed that we are in a trusting relationship.  Examples of this would include that between a priest and a parishioner or a doctor and a patient, unless it is agreed otherwise.  A patient does not necessarily have to tell his doctor that he trusts him; all he may need to do is follow his advice, as trust is assumed in this relationship.  The doctor is expected to act as well as he can in his patient’s best interest.  Absolute and blind trust however, most would say was imprudent, as to act well in a patient’s best interest a doctor needs to know what the patient’s particular interests are.  The patient may also want to know something about the doctor to see if he was worthy of his trust.

There are dangers involved for those who decide to trust another as they may be betrayed.  Most of us know this and we tend to choose those whom we trust carefully. Thus we may need to share the responsibility if we are let down, as we have freely chosen to trust someone when we might have chosen otherwise.  This responsibility may include a patient who, whilst choosing to trust, does not sufficiently explore her own preferences, or a young boy who hands over a ticket to a stranger without thinking through what could happen next. Hard experience is often the only way we can know this and reflection may give us the wisdom to manage better in the future. Many a love song laments the betrayed lover, but most of us recover and find new solace, yet there are times when we are vulnerable and feel that we are owed trust.  Betrayal in these circumstances can be devastating.

Sarndra is incensed at the suggestion that Uncle Stephen may have betrayed her.  Stephen probably, however, felt very differently.  Indeed, he is unlikely to have thought it good enough to be “very human” and was probably devastated by what he would have considered his faulty judgement. Stephen most likely felt he had let her down and, from both a professional and personal sense, that he had betrayed her.  His whispered, “Oh, no,” certainly suggests this.

This episode in Sarndra’s life is about an error of judgement, but it is also more than that.  If Uncle Stephen felt he had slipped up, then surely so did Sarndra.  She still thinks about it and she still wonders about her loss.  Did she not feel she had been betrayed a bit?  If she did, she has forgiven him.  I asked Sarndra to rethink her reaction to Stephen and she came back with this:

How did I feel then?  It’s hard to remember as it was so long ago but I know I wished that he had decided to excise my mole first, not Mum’s.  My parents had frequently told me that one shouldn’t touch a mole, so I also wondered about the wisdom of Stephen pushing mine about so hard while examining it that he made it tender.  I do remember feeling that he should have taken more care:  a gentler approach may have lead to a better outcome for me.  I didn’t recognize it as a feeling of betrayal.

What did my parents think?  Dad was always fiercely loyal to Stephen.  They had worked together during the Second World War:  Dad filming Stephen’s work with soldiers with burns and other injuries and he wouldn’t let anything be said against him.  I must have complained to Dad about some aspect of Harry’s treatment of me, because I can remember him stomping off looking cross and of feeling betrayed by my father:  I felt his loyalty should be to me.

I remember my mother being upset because she had gone first to have her mole cut out instead of urging me to go ahead of her.  I know she was anxious about what was happening to her young daughter, but I was never encouraged to talk about the event, so I stopped trying to do so.  The fact that my parents didn’t want to talk about it puzzled me but when talking to a friend, whose daughter had endured a similar episode in her life, I asked her if she could talk to me about how she felt about her daughter’s experience and, indeed, how her daughter felt, she was quiet for while and then she said, “No, I can’t talk to her about it, it is too painful.  It was a terrible time.  I can’t bear thinking about it.”   Maybe that is how my parents felt.

 

I never heard anything bad being said against Stephen, I think because he was so upset about it himself:  he charged us nothing and re-did the scar twice until he felt satisfied that it was causing as little disfigurement as he was capable of.  This probably coloured both parents’ view, as it did mine.

At a first look, what I mean by betrayal is something like a breach of trust.  It is probably not every type of trust, as there are some types of trusting that you might think are not related to betrayal.  Recently I was hurrying along a street near my home, hopeing not to miss my train, when a scruffy, unkempt, unshaven man stopped me and asked me for the precise time. Without thinking, I stopped, looked at my watch and told him, correctly, that it was 9.47. It did not occur to me to react in any other way and he accepted my information without question. If I had told the stranger the incorrect time and he subsequently missed an appointment, would this be an example of betrayal?  As I had no particular relationship with this person, then, at first sight at least, I don’t think that I would say that I had betrayed him, even though I can imagine he would be resentful and perhaps angry.  Yet, an emotional response like this surely indicates that it must, in my mind at least, have meant something to the stranger, so maybe there is often some unconscious trust present between strangers and therefore the potential for betrayal. Was there some ‘implicit’ trust between me and the girl on the train? I certainly felt strongly that I had in some way been let down by her and, although I have never before considered she had betrayed me, perhaps in some social sense she did. I think it unlikely she considered she had betrayed me and I can only guess at her motivation, maybe it was a tease to get a reaction or perhaps a show of power. If it was to do with power it may be a good example how power can be thoughtlessly used to harm others, perhaps without the powerful being aware of the potential for betrayal.

If the idea of betrayal comes from the loss of or failure of trust, this implies some disappointment in the expectation of a benevolent action of another or some lack of personal acknowledgment of the importance of the trusting person by the person who was trusted.  The idea of betrayal also seems to imply a prescriptive sense, in that we are likely to believe that the activity of the person we describe as a betrayer is such that we believe he ought not to be behaving or thinking in a particular way.  The idea of betrayal does not appear to be a purely descriptive concept, or one of indifference.  Indeed, if a friend were to seriously betray one of us, we could think that betrayal was in itself sufficient to end the friendship.

 

 

What stands out in Uncle Stephen’s reaction to Sarah is that he obviously cared about her and, no matter what the result of his error of judgement was, Sarah has no doubt she was valued for herself.  Although she was probably not aware of it, Sarah was privileged.  Imagine another young woman of similar financial and social means with a similar problem who went to see a surgeon she had never met before, who treated her professionally but not in a particularly friendly way and whom she felt had misdiagnosed her condition and delayed her treatment.  This surgeon, although not dismissive, does not show any emotion or remorse for what has happened.  What would this young woman say about her surgeon?  How much more likely is she to feel betrayed and not to forgive?  It would be understandable if she decided to sue him to exact some recompense.

Another young woman, who lives in a poorer part of the community presents at a public hospital and only sees junior medical staff in the clinic and never sees the same person twice.  If she is lucky, she meets the consulting surgeon briefly as he has a cursory look at the lesion.  A form of consent is sought by a junior medical officer and she is presented with a long complex document, which she is asked to read in front of him and which she feels she has not had time to comprehend and think about.  She does not fully understand but she has to sign before anything will happen.  She does not see the consultant ever again after the surgery and feels that nobody really cares about her or her fate.  It is not really difficult to compound these problems with the possibility that the pathology report may be mislaid, misunderstood or not fully interpreted by junior staff.  Add to this the possibility that when she eventually gets to definitive treatment, the operating session is cancelled for reasons that are not made clear to her.  If something goes wrong she will feel angry, powerless and despairing.

How a person reacts to a situation will therefore depend on her circumstances.  With exactly the same lesion, a similar delay in diagnosis and treatment and the same outcome, Sarndra accepts and does not blame her loving uncle, although later she does wonder about it, another woman feels betrayed and acts upon it and yet another is left feeling angry and helpless.

In this opening chapter we have seen various manifestations of trust and betrayal. A boy unthinkingly trusts a strange girl and learns that not everyone can always be trusted and, although he does not, at the time, feel betrayed by her, he takes more care in the future. A young surgeon has no doubt he has betrayed a younger, more vulnerable colleague, deeply regrets it and resolves to never let it happen again. A patient trusts a surgeon and perhaps has an easier and more valuable experience and her surgeon feels especially responsible because she has done so. A young woman trusts a surgeon and accepts he has made a mistake and is not inclined to blame him, yet on reflection wonders if he has betrayed her, whilst at the same time resolving to forgive him if perhaps he has. Two other young women feel betrayed to varying degrees by a surgeon, one may decide and be able to take some reparative action and the other is left feeling helpless and angry.

 This book examines the meaning and significance of trust and betrayal using examples from our experiences as a doctor and a patient, as the practice of medicine is a good and important example of the place of trust in our lives. Trust, however, has a profound and pervasive presence throughout everything we do and value and we will take some time to examine it in the wider context of everyday life.

 

[1] Hegel, The Philosophy of Right, from The Hegel Reader, Ethical Life, Ed. Stephen Hulgate, Blackwell 1998 p.392.

[2] R. M. Hare, The Language of Morals, Clarendon Press, Oxford 1952 Chs.1-3 & 11. See for discussion on using ‘Ought’

 

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Chapter 2

 

Sarndra:

I have recently had an experience in which I didn’t actually use the words, “I don’t need to know that, I trust you”, but I suggested it by my behaviour, which was receptive and compliant.

I had made an appointment to consult my eye specialist, whom I had been seeing for many years.  He told me I had “rapid onset” cataracts in both eyes, and we discussed and agreed that the first cataract should be removed and what the procedure entailed.  He told me a few of the dangers and the likely outcome, which, he said, would almost certainly be successful.

He then bent his head of the notes in my file, and started muttering to himself about what he found there.  We had earlier discussed the possibility that he might make one eye more myopic than the other and I understood this to mean that I would be able to read without glasses, but that I would also have a reasonably deep field of vision, four or five metres, say.  I had been short-sighted, particularly in that eye, for most of my life, my vision lengthening only as I aged and was used to needing glasses for distance.

The surgeon continued to talk quietly to himself, and I could hear words like, “Shall I make it 1.5, or 2?  Or should I pull it back to….?”  I had no idea what he was saying, only finding out from my husband later that she was talking about dioptres, (a dioptre being a unit of measurement of the optical power of the lens).

I sat silently trusting him because of his training, experience and reputation.  He decided on a number and nodded with apparent satisfaction, appearing to feel that he had arrived at the right conclusion.  I smiled and nodded back and the decision was made.

When, after the operation, I found that my depth of field was no more than a metre, far shorter than I had experienced before, I was shocked.   I could see no further than my hand with my arm at full stretch:  everything beyond that was blurry.  Is that what those numbers meant?  Why hadn’t I asked questions?  Why hadn’t he explained to me what those numbers referred to and how they might affect my sight?

I alternatively mentally thrashed myself and him and felt extremely disappointed at the outcome.  Also, as I had to undergo a further operation to remove a cataract in the other eye, I had serious thoughts about withdrawing my trust from this specialist and transferring it to another. 

When, after much soul-searching, I decided that I would place my trust in him again, at the next consultation about my other cataract operation, he told me that if I continued to be disappointed about the original outcome, laser surgery could be performed to improve the depth of field.  I hadn’t known that was possible and was hugely relieved. 

When deciding what depth of vision would be appropriate for the other eye, we agreed that 20/20 would be best in case the eye had a tendency to “pull back”, which may have been what had happened originally.  He said he was not sure that had taken place and apologized for not making the possibility that this could occur clear to me.  He seemed troubled that I was not completely happy with the outcome.

Sarndra comments:

This seems to be an instance when the patient was too uninvolved, possibly because she felt that she could not obtain enough information to make a properly informed choice or because being compliant was in her nature.  If she had asked questions she may have been told more about the risks of the surgery, but also that, whatever the outcome, laser surgery may be available to fix it.

Trust and betrayal in doctor-patient relationships can work both ways.  In this case the surgeon, who appeared to be a decent and caring man, was upset that the outcome of his surgery had disappointed his patient and could have been saved from that if she had been more proactive.  He possibly trusted that she was participating as much as was necessary for her and may have been justified in feeling a little betrayed when she showed shock and disappointment.    

Annette Baier[1]  writes that no one is able, by himself, to look after everything he wants to have looked after. Not everything can be kept under lock and key.  Sometimes you think you just have to trust others and other times you may freely choose to do so.  It is easiest and perhaps more dangerous if you don’t think about it at all. Sarndra probably was too compliant, but she was either not given sufficient information or was not able to understand what she was given to be able to know which, if any, questions to ask.

Providing information to patients does not necessarily mean that they absorb and comprehend it.  A number of studies have highlighted the difficulties patients can have in understanding and recalling information and in reading and understanding consent forms.  Ian Olver and others[2] investigated the impact of the design of their consent forms and information packages on patients receiving cytotoxic chemotherapy for cancer.  Olver’s group found that most patients did not appear to understand the purpose of the information they were given and the consent forms they filled in.  The patients had poor recall of the major facts about their treatment and older and less educated patients performed less well than the younger and better educated.  Most patients have difficulty absorbing large amounts of information in a short time, although the patients themselves did not identify this as a problem, as they may not have been aware of it. Olver also believes that patients may overstate the goals and understate the risks of chemotherapy “because health professionals frame the information in an optimistic light or because patients use denial”.  Olver believes “that total disclosure improves understanding but also increases the level of anxiety”.  He postulated that the full disclosure of side effects may be undesirable and information should be limited to the common or serious toxicities expected to affect a patient’s decision to accept or reject treatment. This is a contentious issue and there is other evidence that suggests that full disclosure is not detrimental to patients in the long term, even if they have an initial increase in anxiety. [3]

Many professionals have problems communicating with people outside their profession.  There is difficulty with language and understanding that needs to be solved, perhaps with a simple, clear explanation of the important and major complications, rather than a comprehensive review of all of them.  Giving simple information may be at odds with a legal requirement to provide information that would “be reasonably required by a person in the position of the patient”.[4]  What the courts consider a reasonable requirement is not necessarily that which can be easily communicated to and assimilated by the patient.  Stanley and others [5] were aware of this problem and attempted to come to some understanding about it.  As an example of how difficult it is to study consent procedures, it is of interest that Stanley noted that the protocol he used for his study was rejected by three major teaching hospitals in South Australia before an ethics committee finally approved it.  The process was delayed on the grounds that the ethics committees had decided that it was morally and legally wrong to deny a patient complete information, even for the purpose of conducting a trial on this issue.  The ethics committees would not accept a protocol that did not provide patients with a comprehensive list of complications, even though the purpose of the trial was to determine whether such a comprehensive list of complications was of value.

Duggan[6] noted that in Sydney one in four of the population was born overseas and many do not read or write English.  Duggan believes that for this reason alone many patients are being invited to give consent to procedures “of which they have no concept whatsoever and with no capacity to understand the options, risks and benefits”. One helpful procedure to improve information to non-english speaking people is to give written information in their own language, but even then, some of these people are illiterate, even in their own language.  Whilst it is often possible to obtain interpreters, the true meaning of terms and the understanding of process, hard in itself, is even more difficult to comprehend when passed on through the interpretation of language.

In another paper about informed consent, McCormack and others[7] asked fifty patients who were admitted to the orthopaedic department in the Mater Misericordiae Hospital, Dublin, to complete a questionnaire testing their knowledge of the orthopaedic terminology involving the procedures to which they were consenting.  McCormack’s group found that the majority of the patients questioned were unsure of the meaning of what, to the surgeons, were such apparently simple terms as ‘fracture reduction’ or ‘internal fixation’.  Yet all of the patients questioned had signed consent forms for such procedures.  One of the problems the author had had in preparing the questionnaire was finding agreement amongst the surgeons in defining some of the terms and phrases used.  McCormack contends that, in a technically advanced specialty such as orthopaedics, many procedures are ill understood, even by other doctors, and they believe this probably holds true for all medical specialties.  He questioned that, from a point of view of terminology alone, truly informed consent could be obtained from a person outside the profession.  McCormack suggests that truly informed consent would involve a prolonged process of patient education, perhaps to the extreme point that the only person who could really give informed consent about an orthopaedic procedure would be another orthopaedic surgeon.  Most, if not all, patients who appear to be giving willing consent are doing so to procedures they do not fully understand.  Because of this McCormack argues that there must be an element of trust involved in any process of giving consent. 

I cannot resist a wry comment that McCormack published these conclusions in an article in a surgical journal in 1997, to very little acclaim, and Manson and O’Neill[8], two philosophers, came to similar conclusions in a book published in 2007, to be greeted with wide applause. I concede that in their book Manson and O’Neill make detailed and cogent arguments to support their position, albeit in the usual long winded philosophical fashion, to whose depths I admit to descending myself in unguarded moments, and include a wide ranging, knowledgeable account of various facets of consent.  I quote them later in support of some of my arguments.

We may not be able to look after our goods for a number of reasons.  It may be that we are physically or emotionally unable to and we are dependent on others or we may be unable to make a decision because of unreliable or deficient evidence or the complexity of the situation.  Sometimes we are so stressed that we are unable to think clearly and abandon ourselves to the care of another with a feeling of relief. At other times we may freely choose to trust someone because we believe trust is an important part of a good relationship and is to be valued as a thing in itself.

There are people who are in no position to trust, those who do not have the power, opportunity or authority to transfer their goods to another.  An unconscious patient could not, at the time, entrust his health to a doctor.  When conscious before his accident or illness he may or may not have expressed his confidence in trusting doctors, either in general or in particular, but when he is unconscious he cannot express thoughts about the matter.  Children are often said to trust their parents, but, at least when they are very young, it would appear that they have no choice and, somewhat like the unconscious patient, are uncomprehending of their surrounding circumstances.  As the child grows older and learns more about his parents then the situation changes and Baier believes it is possible to have unchosen trust, such as may exist at various times between an infant and a parent.  This lack of choice makes this sort of trust different to what we have been discussing, as choice appears to be an important element of that.  Baier believes that it is not possible to have an unconscious or an unchosen contract and contends that contracts, or mutual promising, can be entered at will, whereas in general we cannot trust at will.  She claims that one cannot offer trust, or accept it by an act of will, unless there is some trust securing social artifice, such as a promise, that can be offered and accepted at will. 

Trust needs to be supported by social structures and agreements and it may be our commitment to these that allows trust to work.  Holding to these commitments may make it appear that we can trust without choosing, but we usually only trust those who we have already seen to have, or assumed to have, some social commitment to us.  Infants may learn to trust on the basis of what they have learnt about the commitment of their parents.  In this sense the trust is unconscious, but the realisation of commitment is not necessarily present.  Sometimes we do not appear to be aware of any commitment of those we trust because we have been brought up with it and do not recognise its existence.  We may only become aware of it if our trust is betrayed.

Baier differentiates promises from contracts in that promises are very special things that can create trust on the will of the truster and obligations on the will of the trustee.  Nevertheless, she argues that promises are basically an ingenious social invention, in which you can have an agreement with somebody you do not trust, and that promises are associated with a background of social sanctions and pre-conditions.  Contracts and promises are distinguished as social devices used by adults who are not intimate with one another and who see one another as more or less equal in power and is thus a relationship between equals.  Promising and contracts are not for children, slaves or the physically or mentally incompetent.  Opposed to contracts, trusting relationships are often between unequals

In personal forms of trust we give something that we value ourselves to another to look after.  What do we mean when we talk about goods as ‘ours’?  We do not necessarily own the goods, at least in a commercial sense, and it might be better to say we have an interest in them or that they enhance our lives.  You do not ‘own’ your children in some ways, but you can certainly trust their care to others.  For instance, in a marriage ceremony a father might ‘give his daughter away’.  In some sense the daughter is not his to give but in another, symbolic, way she may be.  Once ‘given’ she is no longer his responsibility and it might be said that he is no longer in a position to trust somebody with her.  Yet a father still might trust his daughter to the care of others, for example, if she was to have an operation, particularly if she was very ill or severely injured.  Whilst the father does not own his daughter she is still a good to him.  If, for instance, she died because of medical negligence or incompetence we can imagine a father properly saying, “my daughter’s life has been stolen from me”.  The word ‘own’ can mean many things, depending on the situation.  From the point of view of trust, I will use it very broadly, including actually physically owning something, like a motor car, or having a significant interest in something, such as a daughter, or even a more abstract concept, such as having expectations of somebody’s fidelity or honesty.

Our youngest, Emily, aged five, had swallowed a nail.  She’d been sucking a wooden toy when visitors came to the door and was so excited by their arrival that she’d swallowed the nail, which had apparently worked itself loose.

We took her to our local GP who first ensured that the nail was not still in her throat and then had her x-rayed.  The nail was there alright.  It was standing vertically and was the length of two of her vertebrae long.  It looked enormous and threatening and my husband and I felt afraid.

The doctor informed us of the dangers that the nail could get stuck en route through her digestive system, which could require an operation.  However, after some deliberation, he made the decision that we should simply keep her on her left side at night as she slept in order to encourage the safe passage of the nail through her body and out through her intestines. 

We trusted the doctor’s advice utterly, spending two subsequent anxious nights rolling our precious girl back into position on her left side every time she moved about in her sleep.

When, on the third morning, we once again checked Emily’s stools in the potty, there was the nail, safely out again, with no harm done.  No diamond has ever looked more valuable.

We rang and thanked our GP for his excellent advice and felt that our trust in him had been well rewarded.  As a family we felt safe in his care. We have attended this family doctor for nearly forty years.

Emily’s parents did not have the expertise to manage a complex medical problem, particularly one involving their own child.  They expected their doctor to do a thorough examination and make a correct diagnosis.  This, in itself, is a question of trust, as they expected the doctor to have a set of skills by virtue of his professional training.  They appear to have taken this for granted, probably confirmed over many years of experience.  Their consciousness of trusting came with the doctor's decision not to refer their daughter to a specialist or a hospital but to send her home in the expectation that the nail would probably pass through without causing harm.  He informed them of the possibility that things could go wrong.  They trusted his judgement that this was the correct procedure and their trust was subsequently justified, yet whilst they claim to have trusted his advice “utterly”, they still spent sleepless nights worrying. If they had had total faith in the doctor, surely they would not have worried at all. Their trust could not have been an absolute thing as they were aware the doctor may have been wrong, as he could not have predicted exactly what would happen. By its nature, medicine is an inexact science and their trust must have been in his judgment and commitment to the best care possible in the particular circumstances.  

Looking back nearly forty years it is fascinating to see how the practice of medicine has changed. The advice to turn Emily on her left side does not make any sense. The bowel is packed into the abdomen as a long serpentine tube actively contracting to push the contents onwards, so in passing through, the nail would move in many directions and lying in a particular position would make no difference. Perhaps it was good advice in the sense that it gave Emily’s parents something to do and ensured their constant attention and observation.  In modern times this reliance on what might be seen as the ‘Art’ of medicine might not be seen as sufficient to overcome the ‘Science’.

Emily’s parents did have a role to play. They were able to look after their daughter throughout the evening, observing her and changing her position.  They needed instruction on what to look for in case the nail perforated the bowel, such as pain, an increasing pulse rate and fever, and were capable of doing this.  Their doctor trusted them to do this, for he had a stake in the outcome as well, something he may not have done with other less reliable and caring parents. The doctor could have made the wrong decision.  The nail may have perforated the child’s intestines and she may have died.  Anybody can make mistakes and errors of judgment even when acting with goodwill, but it is unlikely that the doctor would have just shrugged his shoulders and said “Oh well, that’s life” and thought no more about it if Emily had died. Like Uncle Stephen, he would probably have been very upset.

Sarndra had multiple roles in her relationship with Stephen, each mirrored in his relationship with her. He was her surgeon, uncle and family friend and in each role they both had expectations on how each should behave.  As her surgeon she trusted him in one way, as an uncle in another and as a friend in yet another and in each manifestation she took a different attitude to him, as he did to her, and in each attitude they experienced differing emotional responses and reacted to each other in different ways.  Emily’s parents also had a complex relationship with their doctor and this case it was complicated by the doctor’s need to trust them and the possibility that, if things went wrong, he would have had a very complex and strongly felt reaction. In both situations the patient and the parents deferred to the doctors knowledge and experience. Sarndra variously described this as due to “common sense” or a “leap of faith” and felt the doctor was better placed to make an informed choice about how to act.

Emily recovered well and the reciprocated trust was justified and led to all-round satisfaction. Stephen’s reaction was clear to her as he was upset and agitated and expressed his dismay that it was not “anyone but her” and he worked hard to get the best possible result for her, in which he was successful. Sarndra, in spite of her initial protestations, has been left with a perception of betrayal by Stephen, something she has had difficulty defining, yet she gives the impression that she is, perhaps, defending him too strongly. How much is this a justification and support for her own trust, in which she may have blamed herself for accepting too blindly and thus denied her own vulnerability?   She is much more definite about her father, who she did believe had betrayed her by appearing to defend Stephen when she thought he should be more concerned about her. Eventually Sarndra has accepted Stephen’s betrayal, as he openly showed her cared about her, and forgiven her parents as she has realised she must have mattered a lot to them when the whole episode became too painful for them to talk about.

It may not appear to make sense to trust someone with what appears to be a trifle.  Nobody would take you seriously if you asked them to look after one grain of sand on a beach.  Both truster and trustee need to believe that the goods are considered valuable and worth the effort. It is possible to not value something yourself yet see that those same goods are valuable to someone else.  For instance, a dying friend might ask you to look after some poetry he has written and to ensure it is published and yet you think the poetry is worthless and not worth publishing.  In these circumstances you may reflect upon the situation and perhaps change your attitude to the poetry because of your relationship with your friend, as the poetry was valuable to him, and try hard to have it published. 

It may be important to be specific about how valuable a good is to you.  Whilst a patient may request a doctor to look after his health it should not necessarily be construed that this means entrusting him with, to use Baier’s term, “the care of our valued autonomy”.  He may need to be specific.  He may trust a doctor, for instance, not with his autonomy but perhaps something specific, like the bunion on his foot.  We may need to specify whether somebody is to look after our short-term gain or our long-term interests.  Sometimes individuals have important specific goals and are prepared to take risks to achieve them.  A sportsman might consider having an injection into one of his joints so that he can play in an important contest, knowing that he risks long term injury.  The injection might allow him to achieve fame and wealth and he may value this over the long term disadvantages of playing sport whilst injured.

Another criticism of the process of informed decision making in medicine is that, even should patients intellectually understand the idea of a complication and be able to list such a complication in a questionnaire, they may not necessarily be able to understand what it would be actually like to have the complication.  It is one thing to know that you may have a complication and another to know what it is like to suffer from that complication.  As an orthopaedic surgeon one of the things I used to do was to perform total hip replacements for patients suffering from painful arthritic hip joints.  Over the years I have seen most of the complications of this procedure and recognise the severe distress they may cause patients.  One of the major complications of total hip replacement is deep infection in the wound.  This infection can sometimes lead to a chronically painful joint and the need for treatment that may involve multiple operations.  Sometimes there is a total failure of the process leaving the patient severely disabled.  I have seen patients who have had to have a leg amputated following chronic infection.  I do not wish to see my patients suffer any more than they need.

Because joint replacements tend to be performed on elderly people who have other problems, occasionally I have seen patients who, in association with their severe arthritis, have a chronically infected open ulcer on the leg.  These ulcers usually occur due to poor circulation of the blood and sometimes take a considerable time to heal.  Unfortunately, when they are not healed, they harbour bacteria, which may spread to other parts of the body.  This is particularly likely to happen if there has been a fresh wound and foreign material in the body, such as occurs following a total hip replacement.  If this happens then the joint replacement may become infected and lead to the complications that I have mentioned.  It is therefore important that all ulcers are healed and there is no sign of infection in the body before we proceed to a total hip replacement.

On more than one occasion I have discussed total hip replacement with patients who have such an ulcer contaminated with bacteria and I have explained to the patients the difficulties and dangers of proceeding with surgery in such circumstances.  On occasions I can remember that patients have said to me something like, “I understand this and I know that I could get the complication of infection, but nevertheless I want you to do the operation because I am having so much pain in my hip I will accept the risk”.  As much as it is possible, on a general definition of consent I would think it is likely that in this situation the patient is making an ‘informed’ decision.  The patient knows it may be possible that the hip could be infected in the operation and what that can mean, but is ready to take that risk because he believes he is having sufficient pain to warrant the risk.  On the occasions I mentioned I have, rightly or wrongly, refused to do the operation until the ulcer was well healed.  I did this on the grounds that I did not believe that the patient fully appreciated what it was like to have an infection in a joint replacement and therefore they were not making a truly informed decision.

There is no doubt in my mind that by such action I risk being called ‘paternalistic’, but I believe I have a responsibility not to unduly place a patient at risk.  I also have my own integrity and reputation to consider and that can include me not doing what I believe is wrong.  I do not intend to debate the place of paternalism in medicine and merely use the example to illustrate what I see as another difficulty with informed consent.  The patient trusts me in one way, but not in another, if he insists I should operate with such doubts in my own mind. In a way he is asking me to betray my own integrity.

A good argument can be made against my position.  Justin Oakley[9]  answers an argument that a woman cannot autonomously consent to gestating and relinquishing a child to another couple in altruistic surrogacy.  The argument is that, because she cannot be fully informed about what her future emotional response will be to the foetus developing within her and to the giving up of the newborn to its social parents, a woman cannot really know what her real preferences will be when the time comes to give up the baby.  Oakley argues that even if women cannot have this kind of information about their future emotional responses, when we consider what counts as informed consent, in the context of other important ventures with uncertain consequences, he claims that informed consent does not necessarily require having complete information about one’s future emotional state.

Oakley believes that it is false to claim that making an informed and autonomous decision requires having knowledge of or information about what the actual outcome of the decision will be.  To illustrate this he considers a marriage contract, which we would accept could be entered into autonomously, even if later on a person was left with enduring feelings of depression, loss and regret about undergoing the marriage.  He claims that these later feelings, and the earlier ignorance of their strength and meaning, do not undermine the autonomy of the original decision.  He also argues that unforeseen post-operative depression, for instance, does not in itself show that the patient’s original consent to undergo the operation was inadequately informed or non-autonomous.  Oakley claims that what is required for autonomous decision making is not knowledge of actual outcomes, but an adequate appreciation of the risks involved.  He argues that autonomous decision making and informed consent seem compatible with a degree of uncertainty about the consequences, emotional or otherwise, of what it is we are deciding on or consenting to.  It is our general experience that we can regret decisions we have made, and wish we had never made them, yet still take full responsibility for those decisions as we went into them, as it were, with our eyes open.  The consequences of our decisions may be more related to hasty or bad judgement rather than to ignorance. So too is it with trust.

Oakley does not deny that there is a need for some basic level of information when we make decisions.  He gives an example of a woman who marries without understanding whom she is marrying or what marriage means in a particular situation.  In that case she might be thought to be non-autonomous and incompetent to make such a decision.  I contend that a patient’s inability to comprehend what it would be like to suffer a serious complication is equivalent to marrying without knowing what marriage means.  Oakley also argues that it is possible to make autonomous decisions when having less than full information, as we may decide to delegate our decision making capacity to another person whose judgement we trust.  In limited situations, such as I describe in infection after hip operations, the patient’s lack of appreciation of the degree to which he might suffer, qualifies, I suggest, to be taken account of in an assessment of that individual’s long-term nature and interest.  Young’s[10] account of dispositional autonomy allows for situations in which a person may not always be in control of his fate and may include some constraints over short-term acts that are not in the person’s long-term interest.  These constraints can probably only work if I insist on maintaining certain basic standards and principles and the patient is prepared to trust my judgement on these.  This does not mean I would not explain my position to him.  If the doctor-patient relationship is some form of partnership this implies that my integrity has to be honoured as well as the patient’s.  If I can reasonably explain my strong belief in the basis for my opinion I should not be coerced into acting against my professional judgement.  This is not only a discussion about informed consent, but about, as we will discuss later, the attributes and character of a trustworthy person.

We cannot make a decision to trust if we are unable to give our goods to another. An unconscious patient is unaware of his need and cannot make decisions and therefore is unable to trust, yet could have taken steps in the past to make her likely preferences known.  There are also situations where we may wish to trust another but not be physically, psychologically or morally able to do so.  You might say “I would like to trust you with my money but I can’t as my wife would not allow it”.  A child may wish to lend something to a friend but his parents will not allow him to do so.  In this situation the child is frustrated, as he is not allowed to choose to trust his friend.  In a way he still trusts his friend but he is not allowed to entrust his friend with a particular thing.  The parents of this child might reasonably say that the child is not able to make good decisions and choices, either because he is not able to realise the consequences of his actions or is not able to assess the character and capabilities of the trustee.  Parents might therefore disqualify their child from being involved in a personal trusting relationship on the grounds of his inability to make rational choices or to choose as they would choose.  However, we will consider later whether this is always a reasonable disqualification, as it may be that non-rational choices are at times quite justifiable and valid in a personal trusting relationship.

Citizens may be forbidden by society to make choices.  Consider a young quadriplegic patient who wishes to trust his friend to help him commit suicide.  The friends have come to some mutual understanding about the value of what is left of his life.  This decision warrants a close assessment of the quadriplegic’s enduring values and this has been done. It has been decided that he is not simply depressed because of his severe disability, but he genuinely believes that death is a preferable alternative to his present unfulfilled life.  Yet the law may forbid them to proceed.  It is possible to wish to trust somebody but not have the authority over the goods to give them over.  Perhaps you have a friend who wishes to borrow a book that you have already borrowed from another friend.  You might say to the first friend, “I would like to trust you with this book but it is not mine to lend”.  Society, through the law, is saying something similar to this to the young paraplegic, as in a way it considers that it is either not his life to give, perhaps on religious grounds, or that he is not sufficiently rational to so dispose of it.

There has been a recent court decision in Western Australia[11] which shows that legal and community attitudes are changing, at least in relationship to refusal of treatment. Mr. Rossiter became a quadriplegic after a fall in March 2008 and was a resident of Brightwater Care Group from November 2008.  He was unable to move and was totally dependent on others for his care. He was mentally competent and could have lived for many years with the provision of this care.  However, he had clearly and unequivocally indicated on many occasions that he wished to die and directed Brightwater staff to discontinue provision of nutrition and general hydration through a PEG tube, which is a tube through the abdominal wall into the stomach used for feeding.  The court was asked to decide whether Brightwater Care Group was legally obliged to comply with Mr. Rossiter’s direction to discontinue provision of nutrition and general hydration through a PEG tube, with the exception of pain relief medication. The court held, that if after receiving full information concerning the consequences of ceasing provision of nutrition and hydration, Mr. Rossiter requested that provision cease, then Brightwater could not lawfully continue administration of nutrients and general hydration. In these circumstances, Brightwater would not be criminally responsible for any consequences to his life or health. Brightwater was expected to continue ‘palliative care’, that is, the provision of reasonable medical procedures for the relief of pain, suffering and discomfort; or the reasonable provision of food and water, but PEG tube treatment was considered to be a medical treatment that could be refused by a patient. Mr. Rossiter died some weeks later after he refused treatment for an infection.

There is also a type of person who appears emotionally unable to trust.  Think of the misanthropic person who is brought up with a deep suspicion of others and who sincerely believes that they are all unreliable and untrustworthy.  The physically or mentally battered child, as he grows, may find it impossible to trust others, even though there may be good and rational reasons why he should.  Similarly, a person suffering from an illness such as paranoia may sincerely believe that the world is actively plotting against him and that he would be most unwise to trust anything to others.  A fatalist, who believes that nothing he does will influence the outcome of his relationships with others, may see no need to choose particular courses of action. 

 

[1] Annette Baier, “Trust and Antitrust”, Ethics 96 (January 1986)

[2] Ian N. Olver, Susan J. Turrell, N. A. Olszewski and Kristyn J. Wilson, “Impact of an information and consent form on patients having chemotherapy”, The Medical Journal of Australia, Volume 162 16th January 1995 pp 80-83.

[3] J. Simes et. al., “A randomised comparison of informed consent procedures in clinical trials”, British Medical Journal, vol 294 1986, pp.1065-8

[4] High Court of Australia, Christopher Rogers V. Marie Lynette Whitaker, 1992, p.790.

[5] Stanley, B.N. D.J. Walters and G. J. Maddern, “Informed Consent: How Much Information is Enough?” The Australian and New Zealand Journal of Surgery, Volume 68 No. 11 November 1998 pp.788-791.

[6] J.M. Duggan, Editorial, Journal of Quality in Clinical Practice, Volume 17. Issue 4, December 1997 pp.175-176.

 [7] D. McCormack, D. Evoy, D. Mulcahy and M. Walsh, “An evaluation of patients comprehension of orthopaedic terminology: implications for informed consent”, Journal of The Royal College of Surgeons of Edinburgh, February 1997 Volume 42 No.1 pp.33-35

[8] Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, Cambridge University Press, 2007

[9] Justin Oakley, “Altruistic Surrogacy and Informed Consent”, Bioethics 6, no. 4, October 1992, pp.269-287

[10] Robert Young, Personal Autonomy, Op. Cit. Ch.5

[11] Brightwater Care Group (Inc) v Rossiter (2009) WASC 229

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