Introduction
The concept of tragedy
Moral case deliberation
Method
Data collection
Analysis
Selection of the case and the associated MCD meetings
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In view of the research question, the case discussed during the MCDs must include a strong element of tragedy, commensurate with the definition of tragedy given above;
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At least one MCD meeting must have been held regarding the case;
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The parties involved in the case must be traceable and have taken part in the MCD meetings;
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The case and MCD meetings must not have taken place more than one year ago, to ensure that the parties involved can still readily call their experiences and memories to mind.
The case and the moral case deliberations
The case involves a 38-year old female patient. She has several children. The department’s annual report describes the case as follows: ‘Ten weeks into her pregnancy, the patient was admitted to the neurology department elsewhere due to suspected Cerebro Vasculair Accident (CVA) suggested by loss of strength on the right side and subsequent seizures. A Computer Tomogram (CT)-scan revealed a left-frontal space-occupying lesion. Four weeks later she was referred to a University Hospital, and in the meantime started suffering aphasia and facial paralysis.
The Magnetic Resonanse Imaging (MRI) revealed a progressively growing lesion, and the decision was made to take a brain biopsy. Histopathology revealed an infection consistent with vasculitis. The possibility of a tumour could not be excluded. Following cross-disciplinary consultation, a short course of methylprednisolone was administered to reduce brain oedema and thus relieve symptoms. During the 16th week of pregnancy, a craniotomy was performed to relieve intracranial pressure under a diagnosis of vasculitis. A left-frontal section of bone was removed and an open biopsy taken, which revealed a glioblastoma localised in the leptomeningeal space. Due to the extensiveness, character and multifocality of the tumour, the possibility of further treatment was excluded. The pregnancy had no influence on the prognosis. Despite her aphasia, the patient expressed a clear wish to continue with the pregnancy. Her husband supported this decision.
From the 17th week onwards, the woman was cared for at home under the direction of the general practitioner/midwife in weekly/daily consultation with the neurologists and gynaecologists.
The first MCD meeting, facilitated by an ethicist, took place during the 20th week of pregnancy. At this time the patient was still mentally competent. A report of the meeting was drawn up, which formulated the dilemma as follows:The 20-week ultrasound gave cause to suspect oesophageal atresia in the foetus. The parents declined invasive diagnostics. Although the patient’s clinical condition was deteriorating rapidly, expected time to death remained uncertain since the craniotomy eliminated intracranial pressure as a possible cause.’
Perspective | Values | Norms |
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Patient | Trust | I should trust the doctors |
Lots of children | Now that I am dying, I would like to have this child (even with Down Syndrome) | |
Healthy baby | If the baby dies, I can care for it in heaven | |
Concern for husband | I have to take care of my husband | |
Husband | Compassion | I must be there for my wife |
Obedience | I should do what she wants | |
Patient’s mother | Right to protection (of the unborn child) | I don’t want any discussion |
Willingness to help | My daughter needs help | |
Stand up for my daughter | The doctors have to be less clinical | |
Distrust | I need to check up on the doctors | |
Foetus | (No data) | |
Neurologists | Patient first | We must not do anything that is not in the patient’s interests |
Gynaecologists and paediatrician | Maturity of the child | The intervention limits must be raised to increase prospects for the child |
Support of mother and child | A scenario must be developed | |
brothers/sisters | (No data) |
Some weeks after the patient’s death, a third meeting with the ethicist was organised in order to look back on the events and decisions that were made with those involved. This concluding session was freer in character, and no structure was imposed by the ethicist.(-) A home visit was then made by the gynaecologist, midwife and sonographer from the University Hospital to carry out another detailed ultrasound. This screening, at 27 + 2 weeks, revealed a case of Intra Uterine Foetal Death. The patient died at home that evening. No autopsy was performed.
Results
What characterises the tragedy in this case?
A second element was the intensely sad nature of the situation. The respondents called it a ‘sad’ situation for both the mother (who is carrying a child that she will never be able to raise) and for her partner (who will be left with several children). They were also emotionally affected by the situation, and the fact that there were several other children amplified the feeling of sadness:There are some cases that just stay with you, and this is one of them (…). The tragedy of a pregnant woman with both a child in situ and a rapidly progressing malignant process… it leaves its mark on you. It gave me sleepless nights, and (…) the problem was we were always dealing with mother and child, we had to consider both. (Interview 5)
The third tragic element is the acceptance of the inevitable. The inevitability of the mother’s death was of course openly expressed during the MCD sessions. The respondents were ultimately relieved when mother and child died together, giving them a certain peace of mind:Yes, absolutely. Of course we were all incredibly consumed by the tragedy of it all. And we… everybody could at least… you know, we could get it off our chest, so to speak. But of course, we all felt, maybe some of us were secretly kind of thinking like, man, the husband, you know. It’s all well and good for her to want the child, but her husband already has all those kids to deal with, and then there could be an extra disabled one, with all the extra care required. What on earth is he supposed to do? (Interview 4)
The fourth tragic element revealed by the interviews was powerlessness. The case presented an unexpected turn of life events attributable only to bad luck and misfortune, which made those involved feel powerless.I’m glad things went the way they did, in the end I’m happy she died with her baby inside her, and that they were buried together. It was just like she wanted, so I am at peace with what happened. (Interview 10)
The fifth element of tragedy concerns the threat to human dignity. The decision of whether or not to provide treatment will affect how the patient will die, and particularly whether she can do so with dignity:The word actually says it all, right? (long pause) An insurmountable… (long pause) …something ominous with an… inevitable conclusion. Something that… ‘cause it’s tragic, of course. (-) And it’s irrevocable too, there are no winners. It’s the worst thing you can imagine. (-) There’s no way around it, you know? It’s going to happen… powerlessness’. (Interview 7)
For me, the complex issue was the huge list of possible scenarios due to the combination of the patient’s malignant disease and missing a piece of her skull. (-) And the list only got longer, because all the scenarios we created for the mother also had consequences for the child. So making her feel as comfortable as possible – essentially giving her a… a dignified death in the relatively short term – that of course denies her child the opportunity of being born alive. On the other hand, a barrage of treatments to extend the mother’s life would make her situation more and more undignified… [but] would improve prospects for the child. (Interview 9)
How did moral case deliberation bring this tragedy into focus?
Giving comfort to the mother and ceasing treatment means that she will die sooner, but will deny the child the opportunity of being born alive. Conversely, while all treatment to extend the mother’s life increases the prospects for the child, they prolong her suffering.During that MCD session (…) the main issue was: what things are important for the mother, and which are important for the child? The real moral component was that any decision to treat the mother and reduce her suffering might do damage to the child. (Interview 6)
Giving nutrition via a feeding tube would also have prolonged her suffering:When everything started, it was still quite early in the pregnancy… And so all kinds of things can enter the equation, you know? At one time, I think, the idea was proposed of treating the patient with chemotherapy. Well… of course, that would affect the child’s development. But even at that early stage, she didn’t want to… to terminate the pregnancy. (Interview 3)
As care professionals, the respondents feel a responsibility to explicitly name the damage during MCDs. Opting for the patient’s desire to bring the child into the world and moving the birth forward would affect the child’s chances of survival. But if it does survive, they run the risk of leaving the father with a disabled child:Once it became clear what we were dealing with, a whole new set of dilemmas presented themselves. What to do? I still remember very clearly that the patient’s mother came here for an appointment, saying gosh, she’s starting to have trouble eating, shouldn’t we try a feeding tube or something? And those were things that I really did have trouble committing to, because they would actually only prolong her suffering. (Interview 6)
The third aspect is that of putting oneself in the situation, which involves the participants concretely imagining what is going on. They see a real picture of a woman lying there, with a tumour growing out of her head. The respondents stated that this allowed them to easily feel the tragedy of the situation, which can sometimes evoke memories of earlier, personal experiences, as relayed by the following interviewee:She really wanted to carry the baby to term, and her final goal in life was to bring that child into the world. But she had had so much medication for her operation and her brain tumour, and the child just wasn’t growing properly. (-) Were we supposed to take the child out far too soon? (-) Half of all children born under 26 weeks never make it anyway, and those that do survive are severely disabled. Should we really do that to the father, who is all alone in the world and with a family to care for? To lose his wife, and then be left with a disabled child? But fair enough, that’s what she wanted. (Interview 4)
The fourth aspect concerns insight into the perspectives of the others involved. Because MCD examines the dilemma from a variety of angles, participants can reflect on their own motivations and those of others:An important fact to realise is that my mother also died of a brain tumour at her [the patient’s] age, leaving similar-age children behind, so I had a very clear idea of what it was like. It meant… of course you feel emotional, but I was still able to keep a distance, I wasn’t overly affected. Familiarity with the situation meant that I could contribute and that I had something to offer, like what is important for your children, what do you want them to remember, and letting go… (interview10)
The exchange of perspectives within a multidisciplinary setting raises understanding of the situation, and helps create a support base for the ultimate decision to be made in the dilemma. Taking the decision carefully and in consultation with others helps the MCD participants to move forward.I was very grateful that we always discussed the matter as a large group. Everybody who was involved, the GP came, the neurologist, neurosurgeon, the clinical ethicist. The situation was viewed from all angles. (Interview 4)
Making the values and norms explicit that play a part in the dilemma exposes the conflicts, revealing the tragic aspect of the case:It was much more about the various moral aspects involved, and examining them together in a very structured way. Because moral deliberations are not part of our day-to-day, (…) I found it a very good approach. It brought me a great deal of clarity (…), the heart of the matter (…). I found the structure very helpful, and also the presence of a facilitator with a neutral, objective stance (…). I think all of the specialists would have appreciated it. We do each tend to look at things from our own little corner, after all. (Interview 4)
The extra dimension of MCD? Well, because, let’s say, it was about… usually things are pretty clear, a child either has a defect or it doesn’t, and you decide to treat it or you don’t, and when it should be born is all pretty clear, but here there were two significant interests involved that, um, let me put it this way, the interests complicate things, the conflict of interests is more pronounced. Deciding against one thing will put the other at a disadvantage, so to speak. So deciding not to treat the mother will also reduce the prospects for the child. (Interview 1)
What do people need in tragic situations?
The interviews revealed that MCD is helpful in tragic situations because it provides the opportunity to discuss matters that touch people:The topic should be more open for discussion, I think. But I also believe that professionals should be trained to deal with it. I mean, aside from the emotions involved and the horrible events surrounding them, that it doesn’t automatically mean that you can no longer do your job as a professional or that you need to take extended time off or whatever, but that you learn how it is (…) possible to live with it and retain sufficient confidence in your own ability to continue working as a professional. I would be in favour of that. (Interview 1)
MCD participants sit in a circle, which facilitates the sharing of experiences. During clinical discussions, the participants are often seated side-by-side, facing a screen showing projections of the case data:(…) certainly in all of the MCD meetings too, and especially during the final session when we wrapped things up. Because there had been informal communication that she had died, but we didn’t see one another then, and I did find it important to give things a proper conclusion, a fact that came out strongly again during that meeting. And the one who was most deeply involved, that was [midwife’s name]. Because she’s, she can also describe the family really well. She also went to the funeral, and is good at telling how it all went, with a great deal of attention. (-) That’s why she was so touched by it all. (Interview 8)
The second point is care for oneself and for each other. Tragedy has a major impact, and flips a switch in those involved. Especially within the context of an academic hospital, where all of the complex and serious cases from the region converge, and where doctors and nurses therefore see a lot of tragedy.After that, when the scans were available and the diagnosis had become clear, we had a meeting in one of those rooms with… a radiology room I think it was, a really big room with all the test results shown up the front using the projector. But everybody was sitting side-by-side, and we were right up the back, so we were mostly looking at people’s backs, people did turn around… (Interview 10)
Secondly, it is important to care for one another. Tragedy places great demands on those involved, as demonstrated by the following quote from the sonographer:So, when something like this happens, it’s important for you as a person to have a support network. Of course there are your immediate colleagues, who don’t necessarily need to discuss all the details of the case, but more like gosh, how are you going to process that? (…) That’s the inner circle of course (…). But besides that it’s also very important for people to have lots of extra circles – family and friends – to provide support, like, if it’s something that will be affecting you for longer than the average patient in an emotional sense. If you hit a roadblock or… then do you think that… your professional life will keep going well? Not for long. (Interview 9)
The third point identified as important by the respondents was need for structure. The purpose of structure when talking about tragic situations is to prevent participants from getting mired down in the emotional discussions elicited by the tragic case. The facilitator plays a key role in this respect:I went to do the ultrasound, and I was pregnant myself. (…) Everyone really was a little worried about me. I remember that the professor of neurosurgery even gave me a phone call, that was very thoughtful of him. And a week later, during my visit to the clinic, they asked “ And? How did it go?” And: “ It was so brave of you to go do it.” That was really nice I thought. And one of my colleagues also came along with me. She said yeah, you can’t go by yourself. So in that sense there was (…) plenty of support. (Interview 4)
The structured nature of the MCDs also raised questions. Two of the respondents did not feel supported by the method:The idea was certainly to arrive at a decision according to a schedule. And I think that MCD – especially when facilitated by someone who knows what they’re doing – also means you don’t get bogged down in all manner of emotional or other discussions; it may sound a little clinical, but not staying on task and making a decision… I think it was achieved in a very structured way. (Interview 6)
A fourth point concerns attention to emotions. One respondent perceives MCD as a ‘rather businesslike discussion’, and believes that discussions of tragic situations should include more opportunities for emotional reflection.And the pros and cons, that sort of thing you know, it was all forced into a kind of mould, and I thought, I actually thought it was a little unnatural. Those pros and cons, we’re already doing that in our own heads, continually actually. (…) I actually found it a little contrived, the pros and cons, yeah it… And then you even need to sit down and formulate everything. (Interview 5)
Humour is also important for dealing effectively with tragedy:I can well imagine that you… that it would be good to be able to discuss certain emotions more easily (…) because it’s a rather businesslike discussion after all, those norms and values. Behind norms and values are always emotions, of course. And that, it might be a good idea I think, to provide that opportunity, from a certain perspective of reflection, so to speak. (Interview 1)
In addition to the necessary attention to emotions, respondents also talked about the importance of reflecting on one’s own attitude to life. MCD should target attitudes related to life problems, and contribute to the examination of personal motivating factors:I think that there should be room for the emotional side of what we do and the cases we encounter, (…) so that includes the humorous aspect. Humour is also very important, which means the other side as well. So it’s, that aspect should be included too. Even hospitals need a bit of normality. Normal people, actually using your ordinary eyes to keep looking at people, who just happen to find themselves in an awkward situation. (Interview 5)
A fifth point is the fact that people want to learn from the case, particularly with respect to similar future situations. For this reason, the respondents say it is useful that the case was discussed not only during MCD meetings, but also in casuistry discussions with gynaecologists, paediatricians and midwives from the local region:Yeah, and formulating your view of big life questions. Hard ones… (-) Yeah, life, um, problems that present as a part of life. Like, what is your attitude to them. How do I see them? How critical am I, and why am I critical? What are the important factors? Is it my emotions, my beliefs, is it culture? Is it my ignorance? My insecurity? What, what is it? What motivates me?
Yeah, because I think it’s, there’s a valuable learning experience here for doctors in various stages of their training, (-) because what you want to avoid is for this to become a sort of (-) story that’s whispered in the corridors, you know? She’s a very ill patient in a very complex situation, with aspects that you want to put into perspective for all those involved. The story shouldn’t do the rounds at drinks sessions. It’s just, yeah, a very complex medical problem. And the thing you notice about trainee doctors is precisely the emotionally charged aspect, which of course means that they want to discuss it with everybody they believe can help them, and I think it should be given a proper forum, not like “ Did you hear about that patient? Well listen to this…”, no. But holding in-depth discussions with those around you in order to find a way for yourself to deal with things and to make decisions and so on, I think that’s the way to get the greatest learning benefit out of the situation. (Interview 9)