A story of ethics in a doctoral study

Following the discussion of ethical issues raised by research employing stories and storytelling at the 11th Storytelling Seminar, participants collaborated in an experiment of co-creating a story that allows for the discussion of these issues. The experiment was inspired by the Japanese art of ‘renga’, a form of Japanese collaborative poetry. A renga consists of at least two ku (句) or stanzas, often many more, each composed by a different poet. The point of the exercise is that each poet must find his/her own voice within a text that is jointly created and jointly owned. The chemist Carl Djerassi (Djerassi 1998) has argued that by co-creating a prose version of the renga, a community of practitioners can express dilemmas and views that would be unacceptable otherwise. It was in this spirit that fifteen seminar participants decided to create a story that would address the following issues:

  1. To what extent can the researcher trust his/her ethical judgements in delicate research situations?
  2. In eliciting stories, how can the researcher avoid influencing the type of story he/she generates?
  3. What about moving from the small, personal stories to the larger organizational ones? How can the researcher presume to speak on behalf of the organization as a whole?
  4. And what are the power relations and power traps in the relation between researcher and storyteller?
  5. What is the tipping point at which the researcher ceases to be a researcher and is forced to adopt a different role, such as judge, confidante, witness or whistleblower? And what are the role conflicts generated in this way?
  6. What guarantees does anonymity offer and what happens if the respondent does not want to remain anonymous?
  7. How can the researcher display empathy to his/her respondent and at the same time maintain a critical distance and put the stories he/she hears under a microscope?
  8. And is it right that the researcher should submit a story to a kind of analysis about which he/she did not inform his respondent?
  9. What about off-the-record stories? Can they be used without breaking research ethics?
  10. And what of research ethics themselves – are they a guarantee of moral conduct or merely a fig leaf?
  11. And what if the researcher’s own values clash with some of the formal requirements of research ethics?
  12. And to whom should the researcher turn for support when faced with troublesome moral issues?
  13. And finally, when should the researcher seek to corroborate the ‘facts’ of a story before proceeding to interpret it?

Each participant contributed an opening paragraph for the story and one of them was selected through a vote of all the participants to be the start of the story. Following the adoption of the winning paragraph, each participant, in turn, contributed a segment of about 200 words to the story. Participants’ contributions remained anonymous to all except for the co-ordinator, Yiannis Gabriel. When all participants had made their individual contributions, they each supplied a final paragraph for the conclusion of the story. They then voted on the paragraph they prefer which is used to close the story. As a final touch, all contributors proposed a title for the story and voted for the one they prefer. Below is the story they co-created which is jointly authored and jointly owned. We welcome comments on the story, which may be used for teaching or research purposes.
Djerassi, C. 1998 ‘Ethical discourse by science-in-fiction’, Nature 393(6685): 511-511.
Following lines, considering angles, squaring circles:

A story of ethics in a doctoral study: A story jointly created by

Achilleas Karayiannis
Aneta Milczarczyk
Anne Harding
Annet Scheringa
Brigitte Ligtvoet
Con Connell
Helen Kara
Ida Sabelis
Kath Checkland
Paula Lokman
Shuchi Tandon
Stefanie Reissner
Suzanne Tesselaar
Trish Greenhalgh
Yiannis Gabriel

The bus was unusually empty and she managed to sit at her favourite seat – upstairs, front seat, right above the driver. She was irritated when someone came and sat next to her. Surely, there were plenty of empty seats elsewhere in the bus, she thought. She took a quick glance at the woman sitting by her side. Fortyish, composed and smelling vaguely of disinfectant. Then the penny dropped – why of course, this was Nurse McDonald, barely recognisable without her uniform.

Nurse McDonald was working in one of the busiest wards at Saint Saviour’s, the very hospital where she had spent the last two days interviewing staff. She was feeling exhausted and looking forward to the week-end. Now she would have to endure a long bus drive sitting next to one of her interviewees, the one who had said …

Just then, nurse McDonald looked at her and said in her distinctly Scottish accent:

“You are the young researcher collecting stories on patient care, aren’t you. Well, have they spilled the beans to you yet?”

There was something dead serious about the nurse’s question.

——-

Surprised, she turned in her seat and met the other woman’s gaze. The grey eyes were frank and appraising, but she thought she could detect something else in there too; a hint of calculation? Her mind was racing. This was what every researcher was looking for – something more than well-rehearsed public stories. She’d heard rumours about something not quite right at St Saviour’s, but had been impressed by the senior managers with whom she had negotiated access. They had seemed pleased to be asked to take part in the study, and confident that their hospital would come out of it well. They’d assured her that staff would have complete freedom to talk to her, and had understood the need for anonymity. She’d promised to present her findings to the board; what would she do if she uncovered a scandal?

She jolted back to the present. Her companion was waiting for an answer. She had no tape-recorder, no notebook. Would it still count as data if there were no records? Was it OK to collect data on a bus? She glanced behind. There was an elderly couple sitting halfway back, and two kids on the back seat; no one within earshot.

“What do you mean?” she asked.

——

But nurse McDonald had noticed her hesitation. “Maybe this isn’t the right place and time. Why don’t we meet at 7 pm tomorrow in the pub right there” she said, pointing at the pub on the corner of St. Quentin’s. “And I’ll tell you what’s really wrong in Saint Saviour’s. But I don’t want you to tape-record anything and if the information is ever related to me, I will deny everything.” Before Eleanor could answer the nurse hurried down and left the bus.

Eleanor and Tom arrived at the pub on St. Quentin’s a little before seven the next day. Since nurse McDonald had specifically told her not to record anything, Eleanor had asked her fellow researcher to be there to back her up in case her data would ever be discussed by some ethics review committee.

Nurse McDonald entered the pub at seven o’clock sharp. She seemed to hesitate when she saw Eleanor was not alone. But she walked over to their table and nodding her head in Tom’s direction, she asked: “Who is this? “ Eleanor introduced Tom and explained why she had asked him to be there. She wanted to be completely honest with the woman. She invited the nurse to sit down. Nurse McDonald ignored her. “Do you know ‘All the President’s Men’?” she asked.

For a moment Eleanor felt bewildered. The nurse repeated the question and Eleanor recollected herself. Yes, she had seen the movie and read the book by the two journalists Woodward and Bernstein, whose investigations into the Watergate burglary had caused President Nixon’s resignation ages ago. She had no idea where the nurse was heading to.

“Remember the anonymous source? He told the journalists to follow the line of the money to find out who was behind the whole thing. You want to know what’s wrong in the hospital. Just follow the line of medicine. Follow the line of the drugs: who orders them, who distributes them, do they get to the patients, do people get what they need? Follow the line of the drugs.”

The next thing Eleanor saw was nurse McDonald leaving the pub.

She looked at Tom next to her in a state of bewilderment. He started to laugh. “You wanted a story? There’s your story! What a character!” Eleanor looked at him angrily.

“What’s wrong?” Tom asked, hardly able to stop laughing.

“What’s wrong? You ask me what’s wrong? I am trying to do some serious research here and here I am, some … some…. nurse treats me like an idiot!”

“An idiot? She just made you part of a story”, Tom said, serious again. “Obviously or at least maybe there is something wrong at Saint Saviour’s. Here is a woman who wants to tell you more about it, but she doesn’t feel save enough to ‘spill the beans’ to you in my presence, so she gives you a clue.”

“Yes, fine, what do I do now?” Eleanor asked.

——

“Not my problem” said Tom, non-committally. “I only came along to witness what happened”.

That night, Eleanor contemplated the strange metaphor ‘the line of the drugs’. There was a clear implication in Nurse McDonald’s hint that at St Saviour’s, this most clinical of supply chains contained an element of distortion – even corruption. Were patients really being denied the drugs they “needed” – or was it simply that this experienced nurse had had her disagreements with junior doctors on what was appropriate in particular cases? An interesting hypothesis about professional power dynamics. But there were more ominous interpretations to consider. Were drugs (opiates perhaps) being ordered for patients and then personally consumed by a member of staff – or, worse, was a staff member diverting supplies to addicts? “Who distributes them?” – was one of Nurse McDonald’s rhetorical questions. And she had drawn parallels between this research and All the Presidents Men. Was it really appropriate for Eleanor to turn investigative journalist? If Tom wanted nothing further to do with the situation, should she simply pass the problem up the line to her supervisor? But she knew what he would say: stop wasting time and get on with collecting the data. Perhaps she should go directly to the police?

——–

But Eleanor knew that the police would want names, dates, perhaps even access to her tape-recordings. Once any allegations began to surface, then that might initiate an exhaustive investigation that would perhaps prevent her from using her data until the case was resolved. At worst, this might mean she might have to abandon St Saviour’s and look elsewhere for an alternative research site. She had sacrificed a great deal to fund her PhD studies, and another delay, after the setback she had found herself needing to overcome last year, which had arisen from the awkward incident with her supervisor, would be more than she could face. Hadn’t he made it clear to her, on a number of occasions, that he had pulled a lot of strings to ease her access into St Saviour’s? Hardly surprising, then, that all her negotiations with senior management about access appeared to go so smoothly.

She awoke the next morning determined to return to St Saviour’s. Nurse MacDonald had revealed, during their brief exchange on the bus, that a number of people knew what was going on. If Eleanor was to ‘follow the line of the drugs’, she would need to know precisely who the ‘they’ were who might be prepared to spill the beans. Perhaps her interview tapes might hold an answer, or at least give her some clues as to where to go next?

—–

Five interviews later, Eleanor had not made any progress in finding out what was wrong at St Saviours. She was frustrated. She had transcribed the interviews with utmost attention but nothing materialised. Eleanor was glad that she had the weekend to think about her next steps. She had come to the conclusion that she ought to find out what was wrong at St Saviour’s as suggested by Nurse MacDonald within the constraints of her research. She needed to be more proactive. Remembering the study she had read about in which the researcher had used gossip to elicit covert stories, Eleanor decided that this might bring her closer to the truth.

On Monday, Eleanor went back to St Saviour’s for another interview and was told that the interviewee was sick, but that a replacement had been found: the nurse in charge of distributing medicines. Eleanor’s mind began to race. But she quickly steadied her nerves and went into the interview room. Eleanor went through her interview routine. Towards the end of the interview, she asked innocently: ‘Excuse me for asking, but I have recently read this novel about a hospital in which doctors refused patients vital drugs to sell them on the black market. I trust something like could never happen here?’

——

The look on the nurse’s face said it all, surprise, shock and embarrassment. Her reply was nervous but measured. “If you want to know what is going on then you need to speak with the junior doctors. I’m not saying any more. I’ve got two young children and I need this job.” Eleanor thanked her for her brief but pointed clue and began putting her notebook in her bag when the nurse added “You might also like to speak to Mr Gardener, the hospital pharmacist.” With that she left the room leaving Eleanor wondering exactly where all of this would eventually lead. Interestingly she had an interview planned with one of the junior doctors the following day.

 

The afternoon of the interview arrived all too soon and as she set up her tape-recorder Dr Phillips arrived. After exchanging introductions Eleanor went through her usual interview routine. She knew what she wanted to ask but did she have the courage? If she heard something that was incriminating would she be forced to change role from researcher to whistleblower? If so what would be the tipping point? What conflicts would emerge as a result of the change of roles? What effect would it have on her research? With these questions racing around her head she steeled herself. “Now Dr Phillips, what can you tell me about the drugs being supplied to patients?”

——–

On the following day, Eleanor had to go to the hospital as she had arranged two meetings: with a nurse Anna and one of the patient who knew the place like nobody else since he was a ‘frequent guest’ there. The Eleanor’s head was full of running thoughts despite the fact that it was an early morning. She could not get rid of feelings that something bad is going on at Saint Saviour’s and she – a young researcher who has just started taking first steps in this field – would need to face this dilemma. ‘Will I be able to handle it?’ ‘What about the professor?’ ‘What will his reaction be when she finds that something unethical is really happening there?’ These thoughts accompanied Eleanor to the hospital. She entered the building through the main entrance, said ‘hallo’ to a receptionist and made her way towards a lift since the ward was on the third floor. The lift came, she stepped in, the door was closing when somebody’s hand stopped it. Tall, handsome man entered the lift and with a disarming smile said: ‘Sorry’. Something in him was familiar to Eleanor. ‘It is strange’ she thought. They got the third floor where the man came off and went straight to the ward administrator office. ‘I had to see him somewhere’ Eleanor said to herself, ‘I am sure of that’, ‘But where and who is it?’

—-

There had been no answers to any of her questions. Dr Phillips had been skilfully evasive. She needed to talk to other doctors, and the pharmacist, but they weren’t returning her calls. At least some people would still talk to her, even if they were only nurses and patients.

Anna introduced herself as a Ward Sister. She cut off Eleanor’s preamble about anonymity and confidentiality with one raised hand.

‘I don’t need all that,’ she said. ‘I’ve got another job and today is my last day at St Saviour’s. I had to leave because I couldn’t square my conscience with what is going on here.’

Eleanor had the sense to keep quiet.

‘They’re using unregulated drugs,’ Anna said. ‘Drugs that haven’t been through clinical trials in the UK, only in other parts of the world. Usually to treat rare diseases where the UK patient population isn’t high enough for clinical trials to be done here. I understand why the doctors are rebelling against the ethical procedures, they want to do their best for the patients. But if something went wrong and it came to litigation…’ She shuddered. ‘I’ve already contacted the press. But I don’t know if they can be bothered with yet another NHS scandal.’

Oh yes, they could be bothered. That was who the man in the lift was. Jack Brodie, top investigative reporter. She’d only seen him on TV before, but he would have reminded her of someone without that, seeing as he was Tom’s father.

—–

Eleanor put her tape-recorded and papers aside – she had to go after Brodie and introduce herself. That could be a way out of everything; a talk to a trustworthy person, sharing the trouble and, perhaps, leave the investigation to him. She might just manage to get Tom involved and indirectly monitor the possible scandal.

Just while she stood up to walk to the door, a man came in. Late fifties, a scruffy look about him, but bright brown eyes shining from under his baseball cap. “I am sorry’, Eleanor said. ‘Ehm, I was just going for some coffee”, and she tried to get around the man.

“I was sent here for an interview”, the man replied, stretching out his hand. “My name is Jack McDonald. I come here three times a week for my dialysis. They told me you wanted to talk to some of the regulars here?”

“Oh, yes”, Eleanor replied, “but…” – “Well, here I am”, the man said and sat down comfortably. Eleanor could clearly see that this man was by no means impressed by his surroundings. She had the uneasy feeling that this man would keep her busy for at least half an hour. Determined, she said “I’ll get us some coffee – you make yourself comfortable and I see you in a minute. You want some yourself? Milk, sugar?”

Eleanor spent a few agonizing and unsuccessful minutes in trying to find Brodie around the hospital. She then quickly rushed to the coffee machine and bought McDonald and herself some coffee. Her mind was already working on what would happen after the meeting — ‘I need to see Tom as soon as I can and convince him to arrange for a meeting between all three of us’, she thought. Eleanor introduced herself to Jack McDonald and despite the fact that she thought of him as a difficult interviewee, her initial impression was soon to change.

McDonald took a sip from his coffee and his first comment struck Eleanor by surprise ‘I am a three-times-a-week receiver of unregulated drugs. I am not in a position to choose the way I personally want to be treated, I am a family man, I cannot afford the money. The doctors perfectly know what is going on and most of them are decent enough to accept the wrongdoings in this hospital. But nobody is speaking, nobody is ready to spill out the beans outside of these walls’ McDonald remarked with his hands pointing to the opposite sides of the room. ‘Who would take the risk? Who would be prepared to lose their job? Who would be prepared to make themselves the main figure in a scandal?’

At that moment Eleanor takes a quick decision; that main ‘figure’ is not going to be her!

“I see what you are saying Mr McDonald. Thank you for your trust in sharing this with me. Unfortunately I am only a researcher at St. Saviour’s. The situation you describe must be addressed by professionals – not by a Ph.D. student. There are other signals in this hospital that cannot be ignored. This morning, I was in the lift with Jack Brodie, the journalist – the press must already be in on the case. This whole affair should be handled by a professional, with integrity and a good reputation. You know Jack Brodie? He and his team produce programmes about very difficult subjects. Do you remember his role in uncovering Dr. Shipman five years ago?” “I certainly do” McDonald replied.

“You see, I think this situation must be investigated by a journalist – the ethics of journalism dictate that all sides of the story should be investigated with impartiality. Good journalists are the gatekeepers of our democracy. I am worried that a scandal at St. Saviour could harm the patients or the hardworking nurses.”

“Yes, Jack Brodie does have a reputation to keep up…”

“Do you want his telephone number?”

——

Eleanor was surprised at herself. She could not believe what she had just said to Jack McDonald. She could not believe that her head felt clearer. All those dilemmas and questions that had troubled her in the last few weeks seemed to be getting answered.

She had finally sorted out her role in the ‘scandal’! Importantly, this time her head, heart and conscience – all felt aligned. She realized that she was not trained to be an investigative journalist and could do more harm by attempting to be one.

Eleanor – the researcher, gave a measured look to Jack McDonald, who had been looking at her closely now. McDonald stood up hesitantly, dropped his business card on the table beside Eleanor and just left the room without saying anything….

Eleanor smiled as she picked up the card; McDonald too had validated her thoughts. He had subtly agreed to speak to Jack Brodie about the scandal.

As Eleanor dropped the card, her papers and her tape recorder into her bag, she heard her phone ring softly…..

—–

Becky had invited her for a dinner at a small sushi restaurant. After a moment of contemplation, Eleanor decided she could take the evening off and meet-up her best friend for a relaxed night out. Before that, however, she’d promised herself to transcribe Jack McDonald’s interview. It had surprised Eleanor, how intense the research project had become; how pre-occupied her mind was with the study, with reading, writing, collecting data. It felt like almost everything around her was somehow related to the project. Along with her enthusiasm had come the guilty feeling of not doing enough, progressing fast enough, producing exquisite texts. Even though she knew she’d recently been seriously neglecting her social life, she couldn’t help but feeling that she should stay glued to her desk, unfolding the secrets of the collected data, instead of going out for a meal. Stop it, Eleanor commanded herself, you need a breather after this hectic week filled with unexpected situations and tense moments.

At home she played the interview. Jack McDonald’s coarse voice told his story of illness, frequent hospital visits, the quality of patient care in St. Saviour’s, and the widely known and silently accepted situation of the distribution of unregulated drugs. His telling was hypnotic, sentences long, expression soothing and his Scottish accent just added to this mesmerizing piece of data.

“..nobody is ready to spill the beans outside of these walls”, Jack was telling her. Where had she heard that same expression a few days ago..? How come Eleanor felt she’d met Jack McDonald before? There was something about the man that reminded her of someone else… Well, of course! McDonald, Scottish accent, bright brown eyes – Could Jack be related to Nurse McDonald?

—-

He must be; this is all just too coincidental not to! She agreed to double check the relationship before drawing to conclusions, but she was just too excited to refrain herself from thinking ahead: why would they both wanted to reveal this story so much? The recordings showed that Jack was determined to spill the beans, and since this was almost too obvious, the question raised: why? Didn’t they both put their position at risk by doing so? If Nurse McDonald and Jack are relatives it would be hard to deny her relatedness to this information, Eleanor presumed ….

Before her head started racing again, Eleanor reaffirmed her determination to transfer the investigation of the scandal to Tom and his father Jack Brodie tomorrow. She was certain that her professor would agree with this, for it allowed her to focus on studying the underlying mechanisms, which would be more appropriate for her PhD: the interaction between power relationships, ethics and sense making processes in the medical workplace. This area of research was still not touched upon in literature, and – accidentally – she had landed herself with a case to study these mechanisms in depth. But first Eleanor allowed herself some time off and enjoyed a girls’ night out with Becky.

The next day at St. Saviour’s hospital Eleanor met with Tom and Jack Brodie.

—-

[Winning closing paragraphs)

www.news.bbc.co.uk/unregulateddrugs

Health

Last Updated: Friday, 18 May 2007, 17:19 GMT

Drugs Scandal in NHS Revealed

Investigative journalist Jack Brodie reports wide-spread unregulated drugs prescribing practices in St. Saviour’s Hospital, London. Patients with varied chronic illnesses have come out with stories of their medical treatment including drugs that have not been through clinical trials in the UK.

Doctors in St. Saviour’s have been imposing patients to these drugs – tested and approved for use in other parts of the world – in order to ‘do the best for the patients’ commented an inside source, hoping to remain anonymous. The patients who have received unregulated drugs have been aware of what is being offered to them and no harm to anyone as a result of the treatments has been reported.

Several Chairs of Primary Care Trusts have judged this procedure ethically unsound, and the breaking of the news has initiated a storm of debates surrounding the controlling of drugs-testing process in UK. Public Health Minister Caroline Flint has launched an inquiry looking into the misconducts in St. Saviour’s.

BBC 1 is broadcasting a special news feature tonight at 8pm with Jack Brodie in the studio commenting on the recent events.

Related internet links:

Clinical Drugs Trials

General Medical Council

Department of Health

NHS Primary Care Trusts

Eleanor Rubin

‘Power and Ethics in medical work place: A case-study of a UK hospital’

Abstract

This thesis presents a reflexive study into ethical sense making processes in a medical work place. At the heart of this ethnographic project was the concept of ‘ethics of care’ and how clinicians and patients in a hospital jointly construct a context bound framework of ethics.

The study focused on the underlying mechanisms of power relationships, ethics and sense making processes in the medical workplace, emphasizing the negotiated nature of social knowledge. In order to conceptualize ‘ethics of care’, a reflexive research methodology was applied thus the researcher’s own experience and enhancing understanding of the ethics in a particular hospital were recorded along with the experiences of the research participants. The data consisted of reflexive research diaries, participant observations in several hospital wards and narrative interviews with patients (n = 12) and clinical staff members (n = 13).

An agenda was developed for researching a multidimensional social phenomenon and the findings of the study further contribute to understanding of the everyday realities in a medical setting and how socio-cultural ethics become subverted through context specific ethics.

Key words: ethics of care, reflexivity, NHS, case-study