Marc Le Pape & Suzanne Bradol
Marc Le Pape a été chercheur au CNRS et à l'EHESS. Il est actuellement membre du comité scientifique du CRASH et chercheur associé à l’IMAF. Il a effectué des recherches en Algérie, en Côte d'Ivoire et en Afrique centrale. Ses travaux récents portent sur les conflits dans la région des Grands Lacs africains. Il a co-dirigé plusieurs ouvrages : Côte d'Ivoire, l'année terrible 1999-2000 (2003), Crises extrêmes (2006) et dans le cadre de MSF : Une guerre contre les civils. Réflexions sur les pratiques humanitaires au Congo-Brazzaville, 1998-2000 (2001) et Génocide et crimes de masse. L'expérience rwandaise de MSF 1982-1997 (2016).
Suzanne Bradol est diplômée en sociologie de l’université égyptienne de Khartoum, Soudan. Elle est intervenue comme interprète, traductrice et assistante de recherche.
To explain certain aspects of the Amman project and incorporate current discussions and reflections on the present and the future of this project into this survey, we interviewed Chiara Lepora, programme manager, and Antoine Foucher, head of mission. These interviews were conducted by Jean-Hervé Bradol, Director of Studies at the CRASH, with whom the survey in Jordan was elaborated.
INTERVIEW WITH ANTOINE FOUCHER (3 JUNE 2013)
Jean-Hervé: MSF’s treatment of patients is mainly concentrated in Amman. Is it always necessary to transfer them to Amman? Couldn’t we consider treating some patients in their home country (Yemen, Iraq)?
Antoine: Today’s programme is the fruit of seven years of technical lesson-learning and human and financial investment on the part of MSF. So, it would be costly and probably not particularly relevant to try and reproduce exactly the same thing elsewhere.
However, we don’t have the resources here to cope with a public health problem on this scale, so we’re looking into ways of extending our influence without increasing our costs. We are working on three ideas at the moment:
- Creating partnerships with hospitals that have the technical facilities our patients need and are willing to devote part of their activity to humanitarian action. In this type of scenario, MSF’s added-value would be its detection, documentation and patient referral and follow-up capacity. We have already begun sounding out hospitals in Saudi Arabia and Lebanon.
- Delegating certain phases of patient treatment, such as physiotherapy, psychological care and post-operative follow-up, to partner NGOs, the MoH, etc. MSF would still coordinate the treatment cycle but could increase case management levels at no additional cost. We are currently finalising an ambitious partnership with the Red Crescent which will enable us to refer Iraqi patients in the final phase of their treatment.
- Training MSF project staff or others wishing to work in reconstructive surgery. We have already trained surgeons and anaesthetists from MSF Switzerland in Iraq and we are also working with the OCP’s mission in Yemen.
The challenge for MSF now is to strengthen its political capacity so that we can develop and monitor our network of relations over the long term. The coordination will be recruiting a head of mission in 2013 to take charge of this specific dimension of the project.
Jean-Hervé: At the moment, we provide medical care to people who need an operation, for whom a surgical intervention is still an option, but not everyone with a disability needs a surgical intervention. Some may just need physiotherapy, mental health care, social assistance or adaptations to their housing. Are we planning on doing anything for this type of severely disabled but non-surgical patient?
Antoine: The Syrian crisis has forced us to adapt our relatively standard medical care provision to the specificities of a particularly difficult context. So we’ve developed “physio-only” physiotherapy care, for example, post-operative follow-up, OPD consultations, etc.
We’ve recently been trying to find ways of providing “global” care for our patients, incorporating legal protection, disability management, education for the children, long-term psychological care, etc.
There’s still a lot of work to be done on what is after all a crucial aspect of our programme - re-establishing our patients in their social and vocational lives – but that often takes a back seat to surgical techniques.
Here again, we need the means to provide individual follow-up for our patients and to develop innovative partnerships with organisations offering complementary services. A better service for our patients, mutual benefits for the organisations – it’s through the connectivity of skills and energies that we’ll generate the most humanitarian added-value in the coming years.
Jean-Hervé: What is MSF doing for patients in particular need of protection, who are in danger in their home countries and can’t go back after their treatment?
Antoine: Yes, it’s a key aspect of the area explored in the previous question. In practice, we are in relation with the UNHCR and we do what we can to facilitate administrative procedures for obtaining legal protection. When asked, we produce medical certificates to help our patients take legal action and obtain compensation.
This raises the issue of the extent to which we’re capable of organising and facilitating patients’ lives beyond the strictly medical field.
In the past, this has usually been the responsibility of our mental health team, but there has always been considerable confusion about the exact scope of its mission and the resources that should be allocated to it. Frédérique Drogoul (OCP’s mental health adviser) is currently guiding our reflection on this subject and we’ll probably decide to separate the psychiatric/psychotherapy team from the psycho-social team in charge of social issues and the individual follow-up of patients’ non-medical problems.
Jean-Hervé: You wanted to talk about the catering project.
Antoine: The aim of the “catering” project was to offer our patients a meals service that, in terms of quality and quantity, was adapted to their medical needs and compatible with their nutritional culture.
There was much reticence about this project, mainly due to fears that it would deprive patients of the social interactions generated by preparing meals together, sharing resources, etc. As a result, it was characterised as a purely technical arrangement intended to deprive patients of their subjectivity.
It’s interesting to note that when the per diem allocated to patients was abruptly cut in half a few years ago, this caused no noticeable internal debate. And yet it was documented that with this amount of per diem patients were not getting the energy intake they needed for their treatment, and even care-takers couldn’t afford a minimum standard of nutrition.
So, the social activity generated by jointly managing an unfair constraint was just the positive externality of a system that was insufficient in nutritional terms and over-ambitious in what it was trying to achieve socially and psychologically.
But the romanticising of this debate succeeded in undermining the project’s motivation and we decided to shelve the project and opt for an increase in the per diem accompanied by some health education to improve the patients’ nutritional practices – also a somewhat ambitious project.
I think that with the perspective of extending the project (changing sites) we’ll get another chance to look at this nutrition issue in a less charged atmosphere and we won’t let ourselves side-step the social activity aspect this time.
Jean-Hervé: What do you think of the notion of troublemaker?
Antoine: I was very shocked the first time heard of it. It’s the term the care teams tend to use for people who cause problems or who adopt so-called “deviant” behaviour. But calling people troublemakers not only reduces them to a single characteristic, it’s also a way of avoiding having to consider the reasons for their behaviour. In other words, in a system like this, patients suffering from psychological or psychiatric problems are defined by the symptom of their distress and not as subjects of medical attention.
Jean-Hervé: I first heard talk of “troublemaking” in Amman a year ago. The team was worried about disciplinary problems. There was a legitimate concern about disruptions and tensions caused by certain patients. Are there still as many troublemakers a year later?
Antoine: No. The psy team is now better integrated into the patient’s care pathway and is seen as legitimate by the rest of the team. In fact, simply questioning the label “troublemaker” has helped moved the reflection on this forward.
Now we need to start thinking about the care staff: they get no training in this field and there are no safety mechanisms in place. We expose them to people who pose real problems from a functional perspective, without giving them the means to understand the patients’ psychical environment, without giving them any tools, without helping them to manage the stress caused by their professional activity.
It’s a serious problem because our staff are seriously exposed. A physiotherapist on our programme works hard and when, twice a week, a patient flies off the handle, or others don’t turn up for their appointments or refuse to do their exercises, we can’t expect him to be spontaneously capable of finding the sense in all that, or of organising his work accordingly, as if by miracle.
Finding a solution for these reactions is matter of organisation and training, as the patient’s safety and dignity depend on the safety and dignity of the care staff. We’re working on a training project on this subject for all our staff.
Jean-Hervé: What direction would you like to see the programme take now?
Antoine: In my opinion, the project should disseminate the technical capital it has accumulated through the partnerships mentioned in response to the first question. But if we dispense technical know-how and knowledge (publications, etc.), we should also organise ourselves to welcome technical know-how and knowledge from elsewhere. This is what we are working on via the partnership with Bordeaux Teaching Hospital, intended to catalyse the positive medical energies available in France and elsewhere. Many brilliant people are interested in contributing to the programme and we should develop a platform that can adapt to different forms of availability. The resource potential is considerable in this field and this is probably one of the most exciting aspects of the programme.
We also need to raise the programme’s political profile, publish on the realities of treating people with war injuries and the individual and collective consequences once the acute phase of a conflict is over. We should also be more political in our medical reflection: What responses should we be considering to cope with the explosion in antibiotic resistance? We are in the front line in this domain; we should be communicating and engaging in the issue.
And we should move on from the kind of compassion-based communication to which we have too often given way on the programme (and I’m as guilty as anyone here) to a more strategic and militant kind of communication.
INTERVIEW WITH CHIARA LEPORA (3 JUNE 2013)
Jean-Hervé: MSF’s treatment of patients is mainly concentrated in Amman. Is it always necessary to transfer them to Amman? Couldn’t we consider treating some patients in their home country (Yemen, Iraq)? How could this be organised and for what type of case?
Chiara: It’s important to view the project from a regional angle. The health care system is already regionalised. Patients are used to travelling from one country to another for treatment, especially for access to specialised care. From this point of view, the Amman project may be unusual for MSF, but there’s nothing unusual about it in the Middle-East region. But we should still avoid referring patients to Amman if they can be treated at home, and keep the time they spend away as short as possible. This is why we are trying hard to develop more physiotherapy and infection management capacity in the home countries for very long-term treatments and treatments requiring less direct surgical follow-up.
This idea of decentralising part of the project is to avoid having too many patients in Amman for too long a period. We also need to develop care for people with disabilities in their home countries, to set up a system that helps us manage our patients with disabilities, including less severe disabilities.
Jean-Hervé: Do we just select people whose impairments are going to require surgery, or do we also admit people for whom we can’t provide a surgical solution, but can help reduce their disability in other ways?
Chiara: We already have a lot of patients in Amman who are just receiving physiotherapy or psychotherapy.
Jean-Hervé: That’s true for follow-up treatment, but weren’t these patients at least expected to undergo surgery? Was there never any surgery planned for them?
Chiara: We do admit patients who we know won’t be undergoing surgery. We admit them as non-surgical patients. This is new in fact. We started in August last year (2012).
Jean-Hervé: Are there many such patients?
Chiara: We’ve got a total of almost 300 patients in Amman; about 50 of them are non-surgical. It’s a recent development on the project. At the moment, most of them are Syrians.
Jean-Hervé: The thirteen doctors deployed by MSF in Iraq only accept patients who need surgery.
Chiara: Yes. But if we manage to develop the physiotherapy network that we’re working on in Iraq, access to physiotherapy will be possible without it necessarily being linked to specialised surgery
Jean-Hervé: A large number of patients are suffering from a long-term disability. After Amman, they go back to their own country. How does the follow-up work then? What kind of care do they get after Amman? How are their needs for treatment addressed?
Chiara: We really want to ensure possibilities for long-term care in home countries. There’s not much available at the moment. The patients stay in touch with the doctors from the MSF network. Some of them come back here after a year because their surgery has failed, or an infection has set in or there is some other problem.
Some patients stay in contact with their psychologists as most of them don’t want to be referred to local psychotherapists. They prefer to continue their psychotherapy by Skype with whoever they were working with in Amman. A small proportion of patients stay in contact like this, but most of them just go home. We contact them after six months for a functional assessment, and then that’s it.
Jean-Hervé: For these patients who go home and are assessed after six months, do we consider that they don’t need any further treatment? Do they continue their physiotherapy themselves? Do we consider that it’s not necessary?
Chiara: As far as we’re concerned, the treatment is over. It’s actually over by definition. The definition given when discharging cases considered to have been “successful” is “maximum benefit achieved” or, in other words, in medical terms, we can’t do any more. Although, obviously this is debatable... But if we discharge a patient, it’s because, in their particular case, we’ve done all that we’re capable of doing in Amman – which doesn’t mean that they will never improve. Afterwards, the patients go on with their lives. For patients with a disability, their potential for improvement is not necessarily limited to a specific moment in time. But they will remain disabled for the rest of their life. They’ll need life-long care. Their need will be more or less acute, part social and part medical. These are chronic patients.
Jean-Hervé: These are chronic patients, so logically they need chronic case-management. But when they return to Iraq for example, there is little chance of them getting this kind of chronic case-management – in fact, most of our patients won’t get any.
Chiara:Exactly. This is why we are trying to develop care provision for people with disabilities in Iraq, Yemen, etc., in partnership with other organisations, such as the Iraqi Red Crescent. And at the same time, we would like the MSF network doctors to provide long-term follow-up.The doctor in Iraq would become the general practitioner of a chronic patient who he refers for specialised care at some point. This is not really how it works at the moment... Amman must remain a specialised project offering treatment over as short a period as possible, and the network project in Iraq must become increasingly separate from it.
At the moment, the network project is seen by many as the way into the Amman project, as if it were a satellite of Amman. Our goal is to separate these two projects and for them to have completely different objectives. The objective of the network project is to improve care provision in countries in crisis for complicated cases that need reconstructive treatment that doesn’t exist or isn’t accessible at home. This means that the network also takes into account the health context, the security context, etc., and even the social and economic context.
Jean-Hervé: And Amman becomes a technical service provider, but within the framework of a much broader treatment project, coordinated by doctors who are in the home countries.
Chiara: Yes, that’s the idea. But at the moment it’s more an idea than reality. We’ve been thinking about it for a long time, and that’s what we’re aiming to achieve - with quite some difficulty. It’s not an easy concept to put in place.
We have to face the fact that the needs are far greater than we’re capable of dealing with. And that means that a project like this has to accept that its rejection rate will always be much higher than its admission rate, and that there will be some very difficult decisions to take.
Jean-Hervé: You’re referring to the selection of patients on the project.
Chiara: I don’t think it’s something that should be left up to the doctor. The coordinator of a project like this should be a person who monitors the context of a country as a whole, or of several countries, who decides that he or she is going to put four Medical Liaison Officers (MLO) here and two MLOs there, because he sees there as being more needs here than there. Again, the decisions these MLO make are not based purely on medical issues, but also on social and other issues.
Jean-Hervé: And quantitative issues too, in fact, as there will never be enough places... Will there be quotas?
Chiara: I don’t think it’s the doctors who should set the quotas. The coordinator should be the person to decide on priorities and adapt the number of MLOs and how they operate according to these priorities.
Jean-Hervé: Very true. It should be up to the project managers to make this kind of decision. But the result is that MLOs have to take a whole series of criteria into account. What’s new is that the need for surgery is no longer mandatory, and medical criteria are less oriented towards technical surgery-related criteria. You’re putting more emphasis on social and humanitarian criteria.
Chiara: I think we still need to keep two types of filter in place. With the first filter – operated by the network (and so by however many MLOs) –, the criteria are not strictly medical, but also political, humanitarian, or whatever else you’d like to call them.
But there is still a second decisional criterion applied in Amman. The surgeons, physiotherapists or other members of the specialists committee must still have the power to choose and say: “I can work on these patients, but frankly there’s not much I can do for these others”. So I think we need to keep this second filter in place.
Jean-Hervé: Do the MLOs still have to seek approval for their decisions to include a patient from the physiotherapist or surgeon in Amman?
Chiara: It depends. If the patients don’t have to come to Amman, the MLOs are completely free to decide what to do. If they want to refer them to Amman, it’s Amman that has the last word. So for these patients referred from one country to another, we keep the two filters. The filter used by the surgeon must be purely technical. I don’t want the surgeon to start differentiating between Shiites and Sunnites, Yemenis and Iraqis, etc.
Jean-Hervé: Let’s talk about these distinctions. How do you imagine that the project coordinator, the head of mission and yourself will organise your deployment with regard to the Shiites, Sunnites, Kurds, Syrians and Iraqis? What’ll be the reasoning behind your deployment?
Chiara: The idea is more or less the same as it has always been. At the beginning, in order to reach a wide enough range of populations, there was an explicit policy of employing MLOs with different personal histories, different affiliations, etc.
Jean-Hervé: Is this what you see as the humanitarian dimension of the project: non-discrimination between the different communities?
Chiara: Not just. I’ll take an example. Between a country at war and a country where there’s unrest, I think there are more reasons for increasing the number of MLOs in the country at war. Not necessarily because the medical needs are greater. That’s a foregone conclusion. But I think there are also more humanitarian reasons for being present in a context that is deteriorating and is difficult for the people. That’s what I call the humanitarian dimension of the choices made. Does that sound logical?
Jean-Hervé: You give priority to wherever people are in the most difficult situation.
Chiara: … the hardest situation, to which they are the least accustomed.
Jean-Hervé: In fact, it’s a bit like what we call “impartiality”.
Chiara: It’s concentrating the most resources where the needs are greatest. We don’t just define needs in medical terms, because it’s impossible when the region has thousands of disabled people and we can only treat a handful of them. We have to add other impartiality filters.
Jean-Hervé: What other filters, for example?
Chiara: The medical context, for example. Where is there the most or least access? Is care provision good or bad? Is access determined to any extent by the type of illness or by ethnic type? We try to balance out all these needs. Ah, there’s something I’ve forgotten to mention. The other objective of the network that we want to develop today, other than recruiting and choosing between contexts and patients and identifying patients who don’t have access, is identifying and extending the medical network, identifying more and more medical facilities that could be part of this network and manage patients in a compassionate manner.
Jean-Hervé: Like for example, a group of physiotherapists in a town in Iraq, a group practice, etc....
Chiara: ...who tell us that they will take five patients free of charge. Or, for example, a plastic surgery hospital in Qatar that agrees to keep a bed free at all times for MSF patients.
Jean-Hervé: You will still have a limited number of places within the care system as a whole. You’ll have to keep places for Iraqis, Syrians, etc. So you’ll have to reason in terms of countries. You’ll also have to reason in medical terms, in terms of the state of care provision in the region where the person lives. And you’ll have to take community affiliation into account.
Chiara: These criteria don’t carry the same weight everywhere. According to the context and the time, there are criteria that will become more important and others less so. The essential thing for the network is flexibility, the ability to adapt to different regions, different zones, different problems, etc. But at the end of the day, the choices to be made are going to be very hard indeed.
And we need to accept that what we’re offering to the region’s patients is not as amazing as all that. Take the example of Iraqis. MSF is very proud of the fact that in 2012 it transferred around 350 Iraqi to Amman. That same year, the Ministry of Health sent 2000 Iraqis abroad for specialised treatment. So our budget of €8 million that we’re so proud of and also so worried about at MSF because it’s such an enormous amount, it’s nothing compared to the budget the Ministry of Health is devoting to sending patients abroad. It spends €40 million a year on that alone.
Jean-Hervé: We’re still doing a seventh of their annual volume.
Chiara: And the conditions that we offer are not all that good. The patients sent abroad by the Ministry receive a much more generous allowance than our per diem and a whole series of other advantages that we don’t offer. The people who come to us have either been unable to get treatment in the public system or are really poor and can’t even reach the public system, or all the other systems have failed them. So these are cases that are either socially or medically very difficult. In fact, what we offer is not particularly attractive. What keeps us attractive is despair, which is not so bad.
Jean-Hervé: You gather up those who’ve been left by the wayside, in fact, either because they are too hard to deal with medically, or because they are too poor.
What transformations, improvements, redefinitions of the programme could be envisaged?
Chiara: For me, redefining and expanding the network is a really important objective.
There is also another aspect that the teams have spent a lot of time working on, and that’s opening up the project to scientific study. To begin with, it produced the kind of scientific publications that have existed for a long time. Now, there are also scientific collaborations with different types of specialised centres. And we’re beginning to get students in medicine, surgery and physiotherapy, for example, who come and do part of their training with us. I’ve thought of another aspect; encouraging students to make as much use as possible of our data. Students could use our patient cohort (which is quite an exceptional cohort) for research purposes and to develop much more generalist notions than those we have today. The cohort in Amman represents one of the biggest patient cohorts of civilian wounded. It’s important to appreciate this, as well as the fact that we also have six years’ worth of data on these cases, data that we’re not doing enough with. I think we have a responsibility to make this data available. I find it a bit of a problem that MSF keeps hold of this data without using it. I don’t know why we allow it to happen.
Jean-Hervé: Has anyone asked for this data?
Chiara: Not as far as I know.
Jean-Hervé: From a distance, it looks to me like, in these three surgical subspecialities (maxillo-facial, plastic and orthopaedic), we have the biggest series of old cases...
Chiara: ...old cases of civilian war-wounded...
Jean-Hervé: The armies have fresh cases most of the time, so the type of surgery is different.
Chiara: ...meaning we develop a whole series of specific surgical techniques that don’t exist elsewhere.
Jean-Hervé: Yes. Are there any other private or public hospitals in Iraq with such a large case series?
Chiara: Yes, I can think of Wassity hospital in Baghdad, for example. They have case series of patients like ours, but they don’t do any data-collection. They have records of admissions and discharges, but they don’t keep any details or files.
Jean-Hervé: There are practically no files. Do they have bigger patient cohorts?
Chiara: Our cohort is relatively coherent at least - old, complicated cases. They have much more of a mix of cases - fresh, old, etc. So probably if we only take the cases that are the same as ours, they don’t have as many. If we count all their cases, they have a lot more. But, again, it’s a cohort that is much harder to use from a scientific point of view because there’s more of a mix of cases, whereas ours is much more coherent.
Jean-Hervé: More coherent and better documented.
Chiara: Exactly. As I was saying, we have a responsibility...
Jean-Hervé: Original know-how is developed in this kind of situation that we should be passing on. According to the Hippocratic Oath, there’s an obligation to do so.
Chiara: The third transformation, improvement and redefinition is really a redefinition of “programme results”. How can we assess the quality of a programme on the basis of results that we don’t actually agree upon? Today, we are evaluating the success or failure of our programme against criteria that are very surgery-oriented. It’s the surgeon who decides that “maximum benefit” has been achieved. He decides this on a rather functional basis and pretty much relative to his own capacities, because not all surgeons will decide that "maximum benefit has been achieved” for the same patient.
I think that, as this is a programme on which no-one dies, we need to redefine much more specific treatment objectives, related more to the patients than to the medical facility.
Today we’re trying to give some substance and content to the term “medical quality”, but we don’t know how to go about it and where to take it. It’s a programme with chronic patients but who only stay in Amman for a limited period; people who had a life before and will have a life afterwards. These are not sick people in the sense that they are confined to bed and completely socially-impaired. No, these are people who spend a specific period of time in treatment during their lifetime.
Jean-Hervé: Just to make sure I’ve understood: when you talk about redefining the objectives, you mean, for example, for a young patient, the fact of going back to school?
Chiara: I think that the only outcome we should be looking for is patient satisfaction.
Is he going to go back to school? Will he be able to get married? Will he be able to hold a cup? It’s not up to us to choose. By looking at things in terms of patient satisfaction, we can put patients back at the heart of their treatment; they can guide it where they want to go. That said, it’s obviously very difficult to quantify these objectives.
Jean-Hervé: Yes and no. There are qualitative assessments with categories (satisfied, not completely satisfied, etc.). If you want to produce some statistics, there’s always a way. To develop case definitions, you study frequency against the case definitions you’ve developed, even if they’re subjective categories.
Chiara: Yes, except that here we’re talking about chronic patients. So the time factor plays an important role. Do we ask them whether they’re satisfied after their first intervention, whether they’re satisfied when they return to their home country, whether they’re satisfied a year later, and how many other factors will affect this evaluation?
Jean-Hervé: Yes, it’s the same with all chronic diseases. You repeat the evaluations.
Chiara: Except that with other chronic diseases, there’s mortality. Not with this one.
Jean-Hervé: I tried comparing the evaluation chart that the surgeons use against other norms. I compared it with insurance norms. I found that our chart was very functional in a physiological sense, but there was still a series of quite crucial questions on social aspects, on the ability to be active in society, to be relationally active in society, which go beyond simply asking a patient if he can put his hand behind his back. These criteria which are not strictly surgical also feature in the official chart.
Chiara: Yes, except that we’re not using them at the moment to evaluate our work. The only statistics and baselines used in Amman are based on the “maximum benefit achievement” defined by the surgeons. This produces a very paradoxical situation. Today, if we look at the statistics for 2012, only 54% of patients gained “maximum benefit”. So, all the others were failures, i.e. every other patient. But I don’t think that’s an accurate reflection of reality.
Jean-Hervé: From an orthopaedic point of view it corresponds to reality, an orthopaedic reality.
Chiara: The team in Amman conducted a study to try and demonstrate that we should stop taking cases that were over two years old; stop taking them because, according to the surgeons, there can only be limited improvements in this kind of case. In the end, the study showed exactly the opposite of what the team was expecting to prove. The patients who are happiest to come here are the oldest cases, the most complicated, the most infected, etc. They probably don’t improve very much in functional terms. If we look at their autonomy, they don’t necessarily make much progress. But they way they see things, they were desperate before, and they are a bit desperate afterwards. That’s enough to make them much more satisfied in comparison.
Jean-Hervé: What you’re talking about is trying to invent a system for assessing the outcomes of care pathway that can be common to both the medical team and the patient. When you think about it, it’s a bit like entering into a contract at the outset.
Chiara: I’d like to talk about the notion of “troublemaker”. I’ll start by telling you about what happened when I was on a field trip to Amman. The psychologists and psychiatrists asked me for a special meeting. They wanted to talk about the problem of suicidal intent. There had only been one or two suicide attempts, but intent was quite wide-spread. The project wasn’t really capable of managing this type of problem properly; there wasn’t enough medical attention or collaboration between the psychologists/psychiatrists and the others. They showed us some quite worrying data.
Jean-Hervé: Semiological data?
Jean-Hervé: So, in psychiatric or psychological terms, these people were suffering from depression.
Jean-Hervé: Suicide is just the end result. There are quite a number of pathologies where patients become suicidal, but mainly in cases of depression.
Chiara: Exactly. So that’s what they were talking to us about.
Jean-Hervé: They were talking about the frequency of relatively severe depression?
Chiara: That’s right. They told us that they had prepared a questionnaire designed to detect this type of case and determine whether someone had suicidal tendencies. We told them that it was good, a very good tool, and they should use it at admission. They said no, that it was a triage tool. In fact, they wanted to give the questionnaire to the MLOs so that could do the screening and reject anyone with suicidal tendencies.
Jean-Hervé: That’s awful! That’s crazy! Were the expat clinical staff there too?
Jean-Hervé: And they didn’t see any problem with excluding people with depression?
Chiara: Not really...
Jean-Hervé: For me, things came clear when I discovered that having an addiction was also a potential motive for exclusion. I mean when I realised that they saw an alcoholic not as a patient suffering from an addiction but as a “troublemaker”. It’s so radical! Perceiving people with a disease as “troublemakers” is usually what you see happening in society and what the doctors fights against. Well, normally... if I’ve understood what they taught me in medical school!
Chiara: Except that the Amman project is a little society and the patient/carer relationship is not a typical relationship because the patients are not exclusively patients, they are much more like people in a community. The fact that the first rule in the internal regulations is “no discussing politics and religion” shows that you consider your patient to be someone who is potentially dangerous and not as someone confined to their bed and attempting to cope with their health problems. So, you give him social rules, quite conservative rules, rules that in fact infringe all kinds of rights.
Jean-Hervé: Usually, this kind of rule ends up being over-applied and interpreted in the strictest way possible.
Chiara: If what you mean is “you must not cause violence”, you should just say so. You don’t then need to add, “Watch out, because if you start discussing politics or religion...” All these people come from extremely complex situations. You just need to say to them, “be careful, you’re with people who are different from you, so be careful”.
Jean-Hervé: People understand without being told.
Chiara: If you tell them that the rule is no discussing politics, they don’t understand. But “Don’t cause violence”, they understand better, at least I hope they do.
Jean-Hervé: The thing about the psychologists screening for people with depression to stop them accessing the surgery progamme... I just can’t get over it!
Chiara: Then we get to the discourse on addictions. But the notion of “troublemaker” shouldn’t be caricaturised, reduced to a caricature that of course exists and that is the first that comes to mind. You have to appreciate that when you have 300 people spending 6 months under your responsibility in hotels-cum-rehabilitation centres, they form a society. There will be something of everything in this society. We, as doctors, practitioners, are not necessarily equipped to manage a community like this, as complex as this. So, with regard to our mishandling of discipline (and I really think we’ve overstepped the mark on a number of aspects), MSF the organisation, the association, should take its share of responsibility. For six years we’ve exposed the Amman staff to the complexity and difficulty of managing this community without supporting them and helping them to find solutions. Just an anecdote (but which is particularly revealing): when we told Paris about these unacceptable disciplinary measures, the reply was “the doctors, practitioner and expats who did that should be sanctioned”. They applied exactly the same logic.
Jean-Hervé: It’s also a disciplinary approach to social, cultural and political problems. People are accused of abuse of authority and so we sanction them. “Sanction the sanctioners”, that was the reaction.
Chiara: Yes, except we mustn’t ignore this complexity. We need to look for and find solutions. I think the first solution would be to reduce the time spent receiving care, the duration of treatment in Amman.
Jean-Hervé: It’s inevitable that there’s a certain amount of “policing” to be done in an institution like this, which is a permanent community of several hundred people.
Chiara: Again, I think we should learn from the way other chronic diseases are managed, by, for example, making the patients assume much more responsibility. I’m not talking about individual patients, but the patients as a community, by creating groups and a system of mentoring like in the management of AIDS, where a mentor who already knows the ropes provides support to a new arrival and tells him what to do and what not to do. So, we should make the community much more responsible for managing itself. The patient who comes back at 11 o’clock at night, who wakes everyone up because he feels like a chat or playing loud music shouldn’t become MSF’s problem. People need to learn to manage themselves.
So we need to differentiate between levels of problems. Individual problems which have medical causes and consequences must be treated in a medical manner. Problems that have a social consequence, such as a social attitude that poses a problem to others for example, should be treated by the patient group in the first instance.
But we also need to define what conduct to adopt with regard to the criminal problems that exist, that are going to exist and which are very difficult to handle. Again, we’re not in our home country, but then nor are the patients. Going through legal channels is not an option. Excluding someone from the care system because he’s a criminal is not necessarily the best choice either.
Jean-Hervé: If there’s criminal activity within the care system, then you have a valid motive.
Chiara: From an institutional standpoint, we can’t keep the person. But in medical terms, theoretically, a person can’t have their medical care withdrawn for criminal reasons.
Jean-Hervé: Except when the criminal activity concerned is directed against the care system itself. For example, if somebody steals from a doctor’s surgery, the doctor is completely justified in refusing to take him back as a patient.
Chiara: Yes, but how far are you willing to take this kind of reasoning? Would you withdraw care from someone involved in criminal activities within the institution but who could be put at risk of dying?
Jean-Hervé: At risk if dying, no. You don’t exclude anyone whose life is at risk. But usually people are only at risk of dying for relatively short periods. Afterwards, in cases of chronic care, if people are a menace to other patients, or to members of staff or equipment, you are completely justified in telling them that we can’t treat them, that we think they’re in need of care but their behaviour means we’re not able to provide them with it. To say to them, “we can’t take your treatment any further. My advice to you is to seek medical care elsewhere and think carefully before behaving in the same way with your new medical team. Here, you can’t just steal my wallet during a consultation. I can’t treat you in these conditions. Even the best medical ethics couldn’t persuade me to treat you in a situation like this”. Of course, there are always the borderline cases. I’m not saying it would be easy. But at a purely theoretical level, it’s not that complicated. It’s very difficult to put into practice, but in conceptual terms, it’s not very difficult.
Chiara: It is when it comes to defining the limits. If you take extreme cases, of course it’s not difficult. There are conditions in which it’s impossible to treat someone. So we don’t even try because it’s not possible. But once you get into the “grey areas”, such as the patient who doesn’t follow your advice, for example, who tries to push in, who is troublesome to the point of preventing you from doing your job properly... I think that this grey zone is where the problems lie, and our teams have trouble knowing how react.