4. Patients’ reflections on care at the Reconstructive Surgery Programme
We have already explored how hospital staff perceive their working environment and their relationship with patients. Following up on patients’ perilous experiences with treatment before entering the MSF hospital, we will now examine how our participants reflected on the care they received at the RSP. Patients opened up to talk about the many aspects that contributed to their healing. They were also candid about the gaps in care that they thought the programme needed to improve to align the care more closely with patient need.
Hospital environment fosters healing
After looking back at the horrendous risks they faced while accessing medical care in their home countries, my participants described the MSF hospital as a place where their physical and emotional wounds could finally begin to heal. The sense of safety, the warm attitude of staff towards the patients, organized appointments, and satisfactory pain management were some of the elements that were most frequently emphasized when describing the healing process.
When I asked patients how they felt in Al Mowasah hospital, the question repeatedly lightened their faces, and a smile played on their lips as they started to enthusiastically express their fondness for the hospital. They described their time as “happy,” and they communicated a sense of relief and joy: “I felt I was on a trip, not in a hospital” and “I never faced any difficulty. Total relief. Total comfort. Perfect staff, perfect care, perfect treatment, perfect meals, transportation was perfect and in an organized manner” (RSP63, Iraqi, M). The hospital environment was described as pleasant and not comparable to any other hospital the participants had ever experienced, “Honestly, it is the only hospital that I didn’t feel it was a hospital. Whenever I go into another hospital, I would smell the anaesthesia [perhaps the participant meant disinfectant] and such things; I would remember the OT [operation theatre] and vomit; except MSF hospital, which was very comfortable” (RSP21, Syrian, F.). The father of a female patient complimented the hospital similarly: “Their way of dealing was very great, in terms of morals and appointments. We weren’t treated like that even in the private hospitals” (father of RSP32, Syrian, F).
Patients also reported feeling safe – a crucial element for their emotional recovery. One of the patients said; “I was coming from a place with no safety and security [Syria], and I came to a place [MSF hospital] where I [felt] I had a family [I was treated like a family member]. I came from a difficult place to a place of relief” (RSP18, Syrian, M). A female patient who was not accompanied by her family during treatment also felt relieved by the sense of security: “When one sends his daughter there [to the MSF hospital], the situation is safe. I told you I used to go to have surgeries [at the RSP] and be there by myself. If I slept there for one week or ten days, it didn’t matter for me if nobody from the family came [to visit]. There were thousands of people like me in a safe situation” (RSP15, Syrian, F).
Another crucial aspect for participants was that of equal treatment and lack of discrimination by the staff.It is important to note that Yemeni participants were not included in the study due to security constraints. Considering the negative perceptions that hospital staff had of Yemeni patients, their views on discrimination may have been quite different from those of Syrian and Iraqi origin. Among Iraqi patients, for instance, there is a mix of Shia and Sunni Muslims. But representatives of both groups confirmed that they never felt discrimination nor were they treated differently from others, despite the fact that most of the Iraqi staff at the RSP were Sunni. Some participants indicated that it was important to them to have some sort of affiliation with the staff, and that they felt comfortable among their same religious/political group. These patients fondly mentioned the names of surgeons and emphasized which part of Iraq they originated from: Mosul or Anbar, which are predominantly Sunni areas.
There were many examples of patients reporting on the lack of discrimination:
This is an organization that treats everybody equally. They don’t assume this is a good person and this is not, so they treat people regardless of their behaviours. I should be honest: they [MSF medical staff] didn’t only treat me in a good way; they treated all of us [patients] the same. They follow the rules, and they have standards that have never been exceeded [in other hospitals I tried]. They treated us all equally, politely, and with high ethics. (RSP46, Iraqi, M)
Also: “They [MSF staff] treated all the patients the same way, and they treated all the patients in a good way, equally. We all were treated the same way – whether Iraqis, Syrians, Yemenis, all were the same. No patient was favoured over the other; they all got the same care, the same service, and the same treatment” (RSP49, Iraqi, M). On a few occasions participants were convinced that they themselves were “a doctors’ favourite,” and this arose from the fact that a different treatment was described as available for them compared to others.
When I enquired about patients’ satisfaction with pain management, the vast majority reported being fully satisfied with the pain medication and access to it at the MSF hospital. They compared this positive experience to the lack of pain management they had had in Syria and Iraq. For instance: “In terms of pain, whenever I have a surgery here in Iraq, I suffer a lot from pain, but there [in Amman] I didn’t even feel the anaesthesia. After the surgery I was as if I was asleep or have just woke up from sleeping” (RSP44, Iraqi, F). The amount of attention given to pain management at the RSP was described by another patient: “Even before the surgery they did not install the cannula while I was awake. They waited for me to go under anaesthesia, then they would proceed. So I wouldn’t panic or fear or feel any pain. Throughout the whole programme I didn’t feel a single needle” (RSP73, Iraqi, F). Only a very few patients complained about the length of time before pain-control medication was delivered to them.
The notion that a patient should simply abide the pain was sometimes expressed as a good thing by participants, “to make the body strong and resilient.” For instance: “If the patient always takes painkillers, he wouldn’t resist anything, and the body wouldn’t be so strong. So, it’s better not to have painkillers so that the body becomes stronger” (RSP7, M, Syrian). The tendency to “laugh at those” who expressed anguish at the feeling of pain was also mentioned a couple of times by male participants: “When I heard someone [a patient] screaming at the physiotherapy, I laughed at him. Even if he was in pain, I laughed. [I asked him] ‘Why do you scream? Are you screaming to make the physiotherapist feel in pain [uncomfortable]?’” (RSP16, Syrian, M). Hence, the stigma attached to expressions of agony from pain still exists among some patients. The unregulated use of pain medication and potentially of “recreational drugs,” often accessible in the chaotic environment of war, may explain the high threshold some patients have for anaesthetics and pain-control drugs.
Above all my participants communicated a sense of gratitude. From their homes, many conveyed their greetings to the MSF staff and listed names of surgeons and other members of staff whom they “pray for every day and ask God to bless them with good luck and wellbeing.” They also frequently expressed gratitude to MSF as an organization:
A simple thing. We would like to send thanks message to the organization [MSF]. Many, many thanks. Because we couldn’t have treated our son if it wasn’t the organization [MSF] [that treated him]. We saw many cases [back in Syria]. We personally know those who got injured and had severe injuries; they had the injured limbs amputated [because they could not reach medical care, such as provided by MSF]. There were people who died and there were people whose injuries got rotten [infected] and died [in that situation]. But, as we got to know the organization [MSF] and they treated him, we just thank them. It’s indescribable thanks, a huge thanks. (RSP12, Syrian, M)
The importance of MSF humanitarian work was also communicated along the same lines: “I really thank MSF. They helped me a lot. I hope they will continue with their work. Because it’s great when one saves humans. This is very important for humanity” (RSP24, Syrian, M), “It was a non-financial relationship: it was a humanitarian-based relationship [we had with MSF]. It was the first time that one, outside his home country, feels that people are treating him because he is a human, not for financial reasons” (RSP12, Syrian, M).
Patients’ views on their relationship with the hospital staff
A sense of closeness to staff became clear when participants talked about their relationship with those who had cared for them. “Excellent” was the word used most frequently to describe this relationship. “The relationship between us was excellent. You would never feel that this is a doctor or nurse, or you are a patient” (RSP1, Syrian, F). Participants mentioned particular physiotherapists, doctors, nurses, and surgeons, and, even years after their discharge, they recalled the names of staff members who had been the most supportive of them. Every word of reassurance, any smile, any gesture of kindness, and attempt to lift their spirits with humour was greatly appreciated. For instance: “In Amman Dr [gives a name of the surgeon] informed about the news [amputation] in a smooth way; he was joking and smiling at the same time, so I was fine with this procedure” (RSP54, Iraqi, M); and “When the [war] memories started coming back, it was difficult. I coped with it by thinking of the medical staff [that were there with me]. When we went to the OT, we laughed and made jokes with each other. I took a picture with them. They let me forget a bit [my worries]. They made me feel more secure” (RSP8, Syrian, M). Another participant described how much he enjoyed the physiotherapy sessions: “The joking and laughing with the physiotherapy guys [physiotherapists] – the treatment was done with jokes, it wasn’t something serious or boring. It made one feel like he is not going to have the treatment [only] – [it made one feel] like you are going to enjoy it, honestly” (RSP20, Syrian, M).
Participants spoke with the highest regard about the hospital staff. “They did their best,” “they were very polite, kind and respectful,” “they dealt with us in a humanitarian way,” “they had love and dedication,” “MSF staff were more like angels to us.” These were characteristic compliments. I had to promise I would communicate these tributes back to MSF. In accordance with staff perceptions of patients, the patients frequently referred to staff as family and friends: “I swear to God they are better than a family” (RSP4, Syrian, F); and “I left Syria and my family [there]; I felt I was among my family [again] when I went to the hospital” (RSP18, Syrian, M). It was mentioned that the staff were expert in “not making them feel that they are the nurses and doctors separated in any fundamental way from the patients.” Hence, warm, informal, and close relationships existed between patients and their healthcare providers in the RSP.
This close relationship was expressed as invaluable. A sense of optimism, new hope, and emotional recovery was directly linked to these interactions. For instance, one of the participants explained: “If they dealt with me badly, I would hate my life” (RSP9, Syrian, M). Another reported how the surgeon made him not only feel comfortable with the surgery, but also with other aspects of life: “It meant a lot. I never imagined I would go [to a hospital] and have the surgery done. When you go in, you see the doctor [surgeon] feeling comfortable and he makes you feel comfortable, too, with his words. Everything else in life starts feeling comfortable” (RSP10, Syrian, M). Some patients attributed their medical recovery, in part, to the pleasant relations they had experienced: “Being in a good mood is a part of the treatment. When the doctor comes and smiles at you and says ‘How are you?’, this is a part of the treatment” (RSP49, Iraqi, M). Participants reported that interactions with staff enhanced emotional recovery: “We made jokes and laughed with the doctors and nurses just to get rid of the atmosphere of sickness and [emotional] tiredness that we were in” (RSP9, Syrian, M).
The close relationships that patients developed with staff were so important, in fact, that participants expressed a sense of pain and abandonment when the links were cut after their return home. The husband of a female patient suggested that this pattern should change and proposed creating an open communication link:
Even if the patient won’t undergo the second treatment stage [they will not return to the hospital anymore], they [MSF] should stay in contact with the patient through a communication channel like the internet. Because when the patient is treated in this organization, they build a kind of bond with the organization [MSF], and they shouldn’t cut these bonds and would better stay connected through medical consultancy. You know what I mean: they [patients] would love to stay in touch with MSF. (RSP40, Iraqi, F)
Relationships among patients
The network created among patients offered them immense support and benefits. Participants communicated a sense of closeness and emotional comfort arising from their relationship with other patients; they exchanged information about surgeons and treatment and gave practical help to carers or each other. All of these things were communicated to me with a great deal of fondness. The sense that they were able to provide practical support to those who were “worse off than them” was in many ways therapeutic, giving a feeling of purpose and solidarity. Shopping for others, washing dishes, doing the laundry, and helping those with mobility difficulties to move around the hospital were just some examples of the practical support patients provided to each other.
The bonds with fellow patients developed over time. A young Iraqi participant described how he gradually became close with a Syrian patient:
You asked me about the other patients. I remember there was a guy with me in the same room; he was Syrian. He was young: I think he was born in 1995 or maybe 1998. He looked nice with long hair; his name was [mentions his name]. He was injured in his back and spine during the Syrian events, so he was paralysed. From the way he talked, I sensed that he didn’t like Iraqis because of all the bad things that he had heard about us. I was good to him. He had never seen the garden of the hospital, so I carried him and took him out there. He was impressed and said that nobody did that for him, and since then he started liking Iraqis. He wanted to visit Iraq with me; I was helping and supporting him a lot. Whenever he needed something, I was there for him. He said that he had a different image in his mind about Iraqi people: he never thought that they were this kind and gentle. When I checked out of the hospital he was crying about my departure. (RSP74, Iraqi, M)
Many burn victims also expressed a sense of connectedness and noted with relief that they were finally accepted and “among similar” [patients with similar deformities]. As one of them expressed: “It was important for me to meet other patients with burns. I wouldn’t feel different from them because they all have the same conditions as mine” (RSP48, Iraqi, M). Sharing a similar destiny was generally perceived as an important factor in bonding and “complimenting each other.” “Maybe our stories are similar. Maybe each of us has found what she needs and lacks in the other [her friend]. Probably. The three of us complemented each other; me, [mentions the name of her friend], and [mentions the name of her other friend]. We spent our time mostly together. And we’re still close” (RSP4, Syrian, F). Another participant used the shared experience of pain to explain the factors creating closeness with fellow patients: “I share with them [other patients] their pain and try to ease their pain though sharing that I have my own [pain]” (RSP61, Iraqi, M).
Meeting different nationalities in the hospital was also described as enriching: “I met a lot of nationalities that I knew I would (otherwise) never be able to meet within probably twenty or thirty years. They were patients from Yemen, Libya, different governorates of Iraq, Palestine, also from Syria with the beginning of the Syrian events. So, you can say that MSF was like a small Arab homeland that brought together various Arab nationalities” (RSP65, Iraqi, M).
Syrian patients talked about making friends with others from Syria and with Iraqis and Yemenis, while Iraqi patients mostly reported socializing with fellow Iraqis or Syrians. Some male Iraqi patients had negative comments about Yemeni patients, which reinforced the negative perceptions of Yemeni patients reported by hospital staff. Here is an example of how an Iraqi participant described a Yemeni patient:
But in the hospital, you know, there were some people from Yemen, and you know they are ignorant, and they have no civilization, so it was difficult in the hospital [to co-exist with them]. What I meant is that they were unorganized, and not cultured! … There were people from Iraq and Syria in the hospital and they all were respectful and co-operative! We would bring shopping and food to share together, and we helped each other in cleaning. Our relationship was very good with each other. But Yemenis were noisy and uncultured. (RSP54, Iraqi, M)
Many participants are still in touch with fellow patients from the RSP through social media. One participant, for instance, came for the interview in Baghdad accompanied by the friend whom she met at the hospital. They talked about the closeness they had developed: “We supported each other; we eased the pain for each other. We were helping each other all the time. When she had a surgery, I used to go with her; when I had a surgery, she used to come with me. We never felt we were in a hospital: it was like we were together at our home” (RSP66, Iraqi, F). Her friend reportedly encouraged the participant to continue her education once she returned home, so the impact of their friendship is long-term and beneficial.
Patients’ views on hopes and expectations
The topic of patients’ expectations and hopes was delicate for the hospital staff. Surgical and physiotherapy teams complained that patients had “unrealistic expectations” and that this created huge pressure on the therapists. But is this really the case?
According to the patients I interviewed, “hope” played a big role in their perception of their own emotional recovery, and it influenced their view of the care they received at MSF. Many reported having lost hope and given up on treatment before arriving in Amman, but then MSF became a new source of hope for them: “It’s like God opened the window of hope for me through this organization, and I feel all respect and appreciation towards them” (RSP49, Iraqi, M). Another patient was similarly inspired: “As I mentioned earlier, when I was in Amman for treatment, at the beginning I used to think that my case was hopeless with my face situation [deformity] and all [other issues]. But when I saw many cases who were worse than mine being treated by MSF [and improving], GOD BLESS THEIR EFFORTS! They gave me hope and I realized that there is nothing impossible in this life” (RSP65, Iraqi, M). The importance of preserving “hope” was crystallized by the participant whose only recommendation to the RSP was “just to give the patients hope” (RSP48, Iraqi, M).
It came as a surprise to the hospital staff that more than half of the participants reported that their expectations of the programme were met or even exceeded. Syrian patients in particular were generally satisfied with the treatment at the RSP: “It was a dream to have the surgeries and walk again. I didn’t expect to find some party to treat me because I was hopeless regarding the treatment. We can’t afford it” (RSP12, Syrian, M). Twice as many Syrian participants as Iraqis reported a sense of satisfaction with the programme.
The participants expected a range of outcomes when they started their treatment. People mentioned wanting a number of things depending on their specific situation: “to be able to walk again,” “to keep the limb which was at risk of amputation,” “to wipe out the physical pain,” “to heal the infection,” “to finally be able to have access to surgery,” “to get artificial teeth inserted,” “to be treated better than in Iraq,” “to be treated respectfully,” “to be able to go to the bathroom by myself,” “to finish the treatment of infection,” “to be treated for all my conditions,” “to feel better emotionally,” “to improve my health and return to my children,” “all bodily deformities to be treated, including neck, ear, and breast,” “not to be neglected in the hospital as I was there alone,” “to have my hand 90% functional,” and “to receive the leg prosthesis.” Considering this list, most patients appear to be realistic in their expectations. Only a few expressed more ambitious hopes, such as “to be able to return to work,” “to look like I looked before [plastic surgery],” “to be able to practise my normal life again,” and “to have my life back to normal as it was before.” Nevertheless, the hospital staff felt that patients had quite unrealizable dreams for their futures.
Patients who expected to have a limb amputated but avoided that outcome reported that their treatment exceeded expectations. For instance, “I thought I had no future. As my leg got worse, I thought it would be amputated. I thought about my situation or what would happen to me later. Until I came here and had the surgeries, thank God. I improved” (RSP3, Syrian, F). But even those who anticipated an amputation and did indeed have a limb removed at RSP still reported the treatment to be “as expected” and commented that “everything there was excellent in terms of healthcare”: “I already had some idea about what is going to happen in Amman [an amputation of leg]. I had a full understanding of my case; I expected that. I expected them to treat me [with the best option available] and I found what I expected; everything there was excellent – the healthcare, the physiotherapy, and they [the staff] were as I expected” (RSP54, Iraqi, M).
Those who had hoped to walk again reported feeling thrilled when they achieved that through the efforts of MSF: “I didn’t expect that they were that good [in treatment] and that I would benefit and be good again. I was hoping to walk even with limping; the important thing was to walk. Thank God, I’m completely treated; I became normal [with my walking]” (RSP13, M, Syrian). Complete satisfaction with treatment was also reported by those who hoped “to start eating again”: “My first and last objective was to have teeth transplanted whether the face was [normal] as before or not. That was what I thought about. The main reason for that is to finally be able to eat and drink. I had only liquids for four or five months [beforehand]. Now I can eat normally” (RSP22, Syrian, M).
Some participants, particularly those who travelled unaccompanied and were worried that they would be “neglected” in the hospital, were also clear that the treatment “exceeded” their expectations: “I don’t know – I thought that I might be neglected. Frankly, they exceeded my expectations by the support and service they provided. They even took me for tourism and even gave me money [patient per diems]” (RSP62, Iraqi, M). One participant was also surprised by the “credibility” he experienced at MSF: “All I hoped for was treatment for my condition and to get rid of this constant pain. Certainly, it took time to reduce the pain, but I never imagined [I’d see] this much honesty and credibility from the organization. I was surprised by the credibility of staff. Most organizations and people I dealt with were fake; this is our society [in Iraq]. This is the truth and I’m not flattering. I felt truth, integrity, trust, and credibility from MSF” (RSP64, Iraqi, M).
For about one quarter of those interviewed, expectations were only partly met. This group frequently identified the percentage of improvement they expected and how much lower the percentage was that they finally achieved (ranging from the highest, 100% expected, to the lowest, 45% achieved). Most of these participants concluded that “their treatment was not completed,” something they reported in a frustrated and sometimes angry tone. The father of one plastic-surgery patient said, “I expected to return home with 90% of improvement. We didn’t complete the treatment! We reached about 75% and returned [back to Iraq; we were discharged].” Another plastic-surgery case complained: “I hoped they would fix my neck, my ear, and my breast, but they didn’t do them all [they did them only partly]. They didn’t do my ear, and only a small part of my neck has been done. And this is important to me because currently I cannot take off my hijab” (RSP44, Iraqi, F).
Among the staff at the RSP there was a common assumption that patients’ expectations were high because they were being treated abroad and by MSF, a well-known international organization. Some participants indeed commented that their expectations rose once they were told the treatment would be provided by MSF. Others, however, were “sceptical” and “had an unusual hesitation” because MSF offered services free of charge. These participants questioned whether “their [MSF’s] performance might not be up to the level that they aspired to, considering that paid treatment before did not bring them desired outcomes” (RSP71, Iraqi, M).
In sum, for two thirds of the patients, treatment expectations were fully or partly met. This confirms the hypothesis discussed in Chapter 2: patients express realistic expectations for treatment, but when they communicate these expectations, they add to them expressions of “hope.” This is more closely related to their outlook on life than it is to the treatment itself. At the same time, the expressions of hope are partly a manifestation of grief for what they have lost. For the RSP staff feeling “under pressure” when patients express their hopes, this discomfort could be reduced simply by providing patients with a safe space in which to express such sentiments.
The other third of my participants (equal proportion Syrian and Iraqi) reported not gaining what they expected from the programme. Some suffered side effects of the surgery, or had unexpected amputations, or their condition had not improved after treatment in Amman. “I expected my arm to be completely fixed and to be treated the way I want. I didn’t expect them [MSF] to make it look worse and feel worse. That was never expected by me at all as the surgery took seven hours and there was a bones transplantation from my leg to my arm. I even don’t like the way it looks now” (RSP46, Iraqi, M). Still others explained that, from their perspective, there were shortcomings in the RSP unrelated to their treatment outcomes but that still needed to be addressed. Let us have a look at the details.
Mismatch between patient and programme priorities
I observed a sixteen-year-old female Iraqi patient during her last session in physiotherapy at the RSP. Her image is clear in my mind due to her striking appearance: long curly honey-blonde hair, beautiful facial features covered with freckles, green eyes, and elegant posture in her long dress. It was obvious that she paid special attention to the way she looked and presented herself. The physiotherapist was asking her to do different exercises: sit down and get up from the chair, walk a short distance using one crutch. The patient had a good sense of balance and was walking confidently. The physiotherapist explained to me that she was “some sort of medical miracle.” Initially one of her legs was fifteen centimetres shorter than the other. This was repaired during surgery and physiotherapy. I asked the patient if she was satisfied with her treatment and if she had received what she hoped for. She looked straight into my eyes and said, “No.” Surprised, I asked for an explanation. She lifted her skirt, exposing her foot on the non-shortened leg, which looked enlarged and slightly twisted. She commented: “I was coping just fine with my shorter leg, but what I was hoping for was a surgery to improve the appearance of this leg” (Field notes, 21 May 2017).
Many other patients with aesthetic deformities were dissatisfied and expressed that they felt MSF was not doing them justice by prioritizing “functional improvements.” One of the patients shared her insights:
They [MSF personnel] take a picture of my face, then they display it in front of the [validation] committee. They [the committee] says, “This person can move” [they don’t have functional difficulties]. Then they take [admit] other, more severe cases instead. There are people who have more right to have the treatment [than me, because their cases are severe]. But, if you sit with me [and listen to me], there are things that have destroyed me too. I feel that the appearance of the burns is what has destroyed me. I have the right to be treated, and so does he [the other person with functional difficulties]. (RSP15, Syrian, F)
Some of the participants were well informed about the existence of alternative medical procedures and felt it was disturbing and unjust when those procedures were not offered to them at the RSP. One of the female burn victims, for instance, said:
I always check on websites how developed the treatment is. As for the condition of my legs [skin deformities], they can become normal with laser. I saw that on a website. I contacted an Egyptian doctor. The laser is developed. I saw a case of woman that is exactly like mine. When I saw her, she was without her clothes. She was like me and had the same [injury] in the legs [burns over the thigh and over the foot]. The skin has become normal with the laser treatment. The problem is that there is treatment available for me, but there’s no [financial] capability. I need laser! My face would be normal [with laser too]. They all consider it cosmetic [in MSF]. As I saw the children who have burns [in the hospital], the children lack laser [treatment] too. The MSF hospital does big surgeries; it should have laser as a help for aesthetics. The hospital needs [improved] capacities for the plastic patients. (RSP21, Syrian, F)
There is no clear-cut definition of what is “reconstructive” and what is “cosmetic” surgery. Both fall under the “plastic surgery” domain and both use similar surgical techniques with aesthetic improvement being a desired outcome. The difference, according to the American Society of Plastic Surgeons, is in the ultimate aim of the surgical process: reconstructive surgery aims to rebuild a normal appearance, while cosmetic surgery manipulates “normal” anatomy to appear “more beautiful” (American Society of Plastic Surgeons, 2018). But according to some patients, the team at the RSP refused them further treatment saying that it was “cosmetic,” even when, for instance, it included reconstruction of a damaged ear (RSP57, Iraqi, M).
There were some patients who dedicated their income to obtaining laser treatment after they were discharged from the RSP. This demonstrates just how crucial it was for them to try to improve their appearance. As we have already explored, compromised appearance greatly influences patients’ perception of “self” and can have severe social consequences ranging from complete social isolation to a lack of opportunity to marry, obtain work, or complete studies. Hence, plastic-surgery and some maxillofacial patients who suffer these consequences understandably question why their treatment preferences, as they perceive them, were not taken into consideration. While research into the effectiveness of laser treatment for the management of scars is not conclusive (Greenhalgh, 2016), patients hold out hope for an improvement in their condition using this technique.
It was not only those patients who hoped to achieve visual improvements that complained. Some with more functional disabilities also communicated disappointment and felt that their priorities had not been acknowledged by MSF.
My eyes were my priority. As my fingers were not cut and they were still there [not amputated], I had no problem if they were not healed well. I wasn’t concerned about them as much as about my eyesight. They [doctors at MSF] said, “We don’t have ophthalmologists, only orthopaedics and such things.” I didn’t have my ambition realized as a patient who was being treated. As for my hand, they worked a lot on it until it could help me, even if it was only a bit [better]. But, my needs are not met in regards to other problems [my eyes, my teeth]. It [the treatment] was excellent for my hand. As for the teeth, they refused to fix them in the beginning. They said, “We don’t fix teeth unless the face is fractured.” (RSP25, Syrian, M)
A set of comments was focused on the single type of prosthesis available for amputated limbs, described as “suboptimal” by some patients:
The prosthesis available from MSF presses the air [an adaptable prosthetic socket]. I have a quarter of the bone. From any movement and when the air is pressed, the prosthesis moves from its place and I couldn’t walk with it. After around one week, the centre of Ibn Sina [in Jordan] called me [and told me that] I got a prosthesis from the Islamic hospital; a donation paid for it. I had hope I will be able to walk with it. It was silicon. When I tried it, it was good. I had told [the people in] MSF to make a silicon one for me [before]. Then they told me I can’t get silicon and that patients [at MSF] aren’t provided with the silicon ones. To those patients who need a silicon prosthesis, they [MSF] should give them a silicon one. They shouldn’t refuse it. They refused [giving me one] because it was expensive. I still look after it as something that is very precious, so that I don’t damage it. (RSP16, Syrian, M)
Some other participants questioned whether all available procedures at the RSP were used to the optimal level for them. An example was an Iraqi patient, who said,
I wished for the alternative solutions, like an artificial lens for my missing eye, but they did not place it [the lance] properly. The lens was too small for my eyes. I complained to the doctor and asked him to fix it and asked him to change it with a bigger one. But what he did is he enlarged the same lens, and he made it a bit too big and installed it in my eye. But this made my eye look a bit bigger than the other normal one. I like everything to be perfect to some extent. So, I wanted it [the eye] to be right so I would look normal. Same goes for my hand: I wanted an artificial hand [prosthesis] that could be moved. On the one I received I had to fold fingers on it [manually] to move it into my pocket. It only added weight so I did not like it. It did not help, and I threw it away, because it was useless. I feel angry right now [remembering all this]. (RSP61, Iraqi, M)
The push to use a particular prosthesis may be purely “practical,” having a quantitative, measurable outcome in terms of the progress of the programme. This, however, is the very thing that translates, in the patient’s opinion, to a limitation on the care offered and ultimately provided. There is very little negotiation space for patients to communicate that their treatment preferences include physical, emotional, or social outcomes. Yet, all of these things will be important aspects in their future lives.
Dissatisfaction with the process of hospital discharge and continuity of treatment
The process of discharge and follow-up also caused some concern and dissatisfaction among the participants in the study. The usual procedure is as follows: patients are discharged from the hospital in Amman on the notion of maximum benefit achieved.All interviewed patients stayed at the RSP until they were discharged on the notion of “maximum benefit achieved.” This decision is grounded in individual validation and the conclusion that a patient has benefited as much as possible from the programme as it is currently constituted. After the final discharge, patients return to their residences and are considered to be in a follow-up period, the duration of which is decided case by case by the surgeon in charge. During this period, which typically lasts for a couple of months, they are followed by medical liaison officers (MLOs), who perform patients’ medical check-ups and document their progress. After the period of follow-up, if MLOs do not raise any concerns, the patients are considered as “finalized,” a term used by MSF to indicate that no further treatments or medical assessments are planned for them. Interviewed patients reported on different challenges that arose from this course of action and the difficulties they encountered when institutional rules were tightly applied.
The decision to discharge a patient could cause disappointment for some if they felt that they were discharged from the hospital “prematurely” or that more could have been done with RSP expertise:
Honestly, I didn’t expect they would discharge me from the hospital until everything was completely done, such as treating my legs. My legs are important! I showed them to the doctor and he said, “No. I don’t know how to do anything but with your hands [plastic surgery].” I just want to be able to practise my life. I can’t stand up while they [my legs] are straight [fixed]. I was surprised when they discharged me. Even my face – look at my lips. The skin is all tightened. It all bothers me. But, honestly, they didn’t do anything for me [for the face]. (RSP21, Syrian, F)
Another patient thought that fixing his missing teeth was an obvious need before discharge: “I swear I didn’t feel well when I was discharged from the hospital. Because I didn’t finish [the treatment] for the face [maxillofacial patient]. It wasn’t good. My teeth needed to be fixed, if there was a dentist there [to fix them, but there wasn’t]” (RSP14, Syrian, M).
The term “maximum benefit achieved,” or “MBA,” itself impacted some patients’ ability to cope. One of them described this as follows:
They [MSF] should treat us without telling us [patients], “This is the maximum. You cannot get better than this.” This caused frustration for us patients and made us feel down. And there were many doctors who just nodded their heads and walked away when somebody asked them for something [more to be done]. They didn’t do anything [in response]. I felt bad because I hadn’t completed the treatment when I was discharged from the hospital. There is a donor here, may God give him good things, who helped to complete the treatment. (RSP31, Syrian, M)
Hence, MBA is perceived by patients as something on their way to recovery and has a negative emotional impact on them. The use of a more neutral term, such as “RSP treatment completed,” “discharged from the programme,” or “the programme target achieved,” might be more suitable and reduce some of the current tension that comes up between patients and hospital staff.
When we discussed the continuity of treatment, the participants’ major complaint was related to what they considered misleading information they received. No fewer than twenty-two patients whom I interviewed (four Syrian and eighteen Iraqi) reported being promised (by the surgeons in charge of their cases) that their treatment would continue after a period of rest at home. They reported feeling misled, shocked, and emotionally affected after their attempts to contact MSF failed and they were unable to talk with programme officials about the continuation of treatment. They reported not being able to get a response or that the response they did get from the MLOs was along the lines of “your medical files is closed” and there are “no more treatment options for you.” They reported that no explanation was provided to them, and they continued to wonder about their cases. They felt disappointed also because they believed that they “had developed a personal relationship with the surgeon” and they “trusted the credibility of MSF.”
One of the patients received me in his home and expressed anger and frustration. He is currently suffering from kidney failure, for which he blamed MSF and their “neglect” of him as a patient:
You know that Iraq has gone through very hard circumstances: at that time the Iraqi hospitals didn’t have the capacity to receive the very large numbers of patients. But MSF – and we appreciated their efforts at that time – made great efforts. But then when they did my surgery on my leg, they left me in the middle of the way [in the middle of treatment] and didn’t complete the job [treatment]. The last time, nine years ago, they [in MSF] told me to go home and that they will contact me later. But when I travelled back home, I tried to contact them many times [over years] and tried to even contact the surgeon in charge of me and I didn’t get any response. During this period, I was in severe pain, so I had to take a lot of painkillers, which caused complications. These painkillers affected my kidneys negatively and now I’m suffering from kidney failure. I contacted MSF many times, but they completely ignored me. If MSF had contacted me or treated me one or two years after my discharge that would have eased my pain and I might have had these plates [internal fixators] removed from my leg [and avoided further consequences]. (RSP49, Iraqi, M)
Another patient felt misled by communications from MSF:
They [the hospital staff] honestly were good, but I was supposed to complete my treatment when I was there. The specialist who was responsible for my case said, “You return to Iraq so you feel emotionally better, and then we will request for you to come back to Amman again.” When I returned to Iraq, I was contacting the doctor [MLO] who was here [in Baghdad], believing that they will reconsider my situation and complete the treatments related to my neck movement [restricted movement due to scar tissue], in addition to the deformed ear. But then they informed me that I’m not entitled to any more treatment. After some time [of trying] I was suffering [emotionally] because the surgery wasn’t completed and I was in the middle of the way [in the middle of treatment]. (RSP44, Iraqi, F)
A young woman who needed breast reconstruction had a similar experience:
When I travelled [to Amman] there was some maintenance work in the operating room, so I didn’t get treated immediately. They only fixed my armpit [the skin release] and added a nipple to my left breast. He [the surgeon] said if it [the nipple] disappears I will do it again for you. They [MSF doctors] also opened my right arm [which does not extend fully] to treat it, but they didn’t complete the treatment. They told me in MSF, “We will call you back to travel to Jordan and get treated,” but they didn’t. I sent them my X-rays three times before; they didn’t answer me and then I was surprised when they said that my file has been closed and I won’t be admitted to any surgery [within MSF programme], and there was no explanation why. (RSP50, Iraqi, F)
Back in Amman I tried to follow up on her case. It was clearly stated in her follow-up summary (dated 22 January 2018) that she had raised the same concerns about the continuation of her breast reconstruction and that, indeed, she was supposed to travel back to Amman for further procedures on her hand. One of the surgeons and another person from the medical department who remembered her case confirmed that she was telling the truth. Despite that, it was explained to me, that she could not be readmitted if her orthopaedic surgeon would not confirm that she needed more procedures on one of her hands. Her admission to “only” fix the breast was considered out of the question as it was not judged to be a “functional improvement.”
The extent to which this miscommunication affected patients in practical and emotional terms was explained by one of the Iraqi burn victims:
In Amman they told me that they would send again for me after a few months to complete my treatment according to the programme schedule. So, I lived hoping to go back again. There were small saving projects that we used to subscribe for; I froze everything [all activities], I did not participate in anything and did not develop myself [financially], expecting that they would give me a call at any moment and tell me to pack up and go. And I kept waiting. After a couple of years they called me and told me that my treatment was over. But I did not understand why they didn’t want to treat me. And [after having reached an emotional recovery] I became upset again” [participant crying]. (RSP73, Iraq, F)
Some other patients reported that they were informed that their treatment at MSF was complete; however, they struggled with long-term health-related difficulties and wondered if MSF could play a role in helping resolve them. Some patients’ condition worsened years after the surgery. I met one who was living in a very harsh economic situation. He asked me: “I’d like to ask about my hand; when I contacted them in Baghdad, they told me that they had closed my file. What should I do now? Can I live with this hand? It’s back to how it was before the treatment at MSF. My kids are even working with me and studying at the same time [to compensate for my lack of functionality]” (RSP59, Iraqi, M).
The most commonly reported conditions that lacked long-term treatment plans were differing degrees of pain (reported by twenty-seven participants), knee replacement, replacement of the leg prosthesis, and aesthetic improvements. A number of patients shared stories about how they, after receiving no response from MSF, tried to follow up with procedures in Iraq. But Iraqi doctors were reluctant to take on these cases because of patients’ complicated medical histories and advised them to return to their original MSF doctor. For instance:
Currently I suffer from pain that makes me even lose sleep. That was my complaint [to MSF]. You are a humanitarian organization, and that was a good initiative you did, and treated me in a good way, and received me well in the beginning, but you should have completed your job and continued the good work you started. I tried to go to many doctors here [in Iraq] and whomever I visited asked me, “Who has done your surgery?” And when I tell them it was MSF, they only give me medications and painkillers and tell me to go back to MSF so they finish their work. I also feel worried by somebody else removing the plates, because the other doctors can’t exactly know how it’s been inserted by the original doctor, and they might damage the injury [the injured part] even more. (RSP49, Iraqi, M)
Patients in need of replacement prostheses reported difficulty accessing them in Iraq. A husband of a patient explained: “This prosthesis [pointing to his wife’s prosthesis], this isn’t good: it hurts her. They repaired it [in Iraq] in a poor way; every time we go, they fix it carelessly. Can’t MSF bring a new good quality prosthesis for her?” (RSP41, Iraqi, F).
Another patient, who underwent above-the-knee amputation at MSF showed me her stump and the dark patches of skin where the prosthesis had rubbed against it. The upper part was covered by gauze to reduce the rubbing. The artificial leg was broken in half and taped. The woman commented that her prosthesis was six years old and does not suit her anymore because her stump has changed in form. She told me that she got a replacement in Iraq, but the new prosthesis was so uncomfortable that she stopped using it and continued with the broken one she received at MSF. The fact that it was MSF where the amputation was carried out made her feel strongly that the prosthesis should be replaced by the programme: “I expected them [MSF] to make another prosthesis for me and reduce the fat in the thigh so it becomes slimmer without that extra fat and fits into the prosthesis” (RSP40, Iraqi, F).
Another patient with a double amputation of legs talked of the impossible financial burden he would face if he had to organize replacement of his prosthesis himself:
The two prostheses cost 4,000 dollars which is as expensive as a car; it’s not easy for everyone to afford such expensive things. Our government here doesn’t care about the patients; they have the materials, but they don’t have the workforce [to manufacture good quality prostheses]. As for the private offices who can sell the prostheses, they sell them at a very expensive price and, also, they are distant from my home: I cannot easily reach them. They [MSF] told me, “Your case doesn’t require further treatment and the prostheses are available in Iraq”, while, as I told you, they are very expensive. 4,000 dollars is something very expensive: in addition to the surgery that I need in my leg, that all will cost about 5,000,000 Iraqi dinars [4,000 USD], which is very expensive and not really available here in Iraq, and I cannot afford it. (RSP54, Iraqi, M)
The trust those patients developed with the MSF surgeons was an important aspect of their explanations:
My problem isn’t only the prostheses [which needs to be replaced]: it’s also the extra skin in my stump. And I have concerns on doing it here in Iraq [surgery to remove it] because wherever I go they say, “No one can help you but the MSF surgeon, because he’s a good doctor and professional in this field and he is the only one who can treat this for you.” It [the procedure] is not something easy; it’s about a palm size away from my knee, that’s why it’s very risky for me and I cannot do it here [in Iraq]. I have a concern about risking my leg! I even endure the pain rather than risking the rest of my leg. I cannot do it here in Iraq. All the good doctors have travelled out of Iraq and the professional ones [specialists] are not here anymore. (RSP54, Iraqi, M)
During the difficult conversations these patients had with doctors in Iraq, some heard suggestions that they submit a formal complaint against MSF due to their neglect: “One doctor even told me to file a complaint against the organization at the Doctors Union [in Iraq]. But I don’t want to do this because I’m so grateful for what they did, may God reward them and bless them. They did for me a great favour. It’s just that no one will receive my case and treat me, and they say that I can only be treated by my original doctor” (RSP72, Iraqi, F). Another had the idea that she might share her dissatisfaction on Facebook: “I wanted to share my story on Facebook and say that I have been treated by Doctors Without Borders and they left me in the middle of the way [in the middle of treatment]” (RSP40, Iraqi, F).
The father of a young male patient who is still in need of ear reconstruction recommended that more information should be shared with patients at discharge: “Even if they [MSF] cannot help us [with further surgeries], they can [at least] tell us where to go and refer us to other places because they know better than us, and that will be very helpful for us” (RSP57, Iraqi, M).
For some, the lack of treatment opportunities was not the issue. They simply felt hurt by nobody checking on them: “But as I told you no one called me since then [since the discharge] or asked ‘How is your leg? Did you get better? Have your bones grown?’ They [MSF] neglected me as if they mean it [meant to hurt me]. I know they didn’t mean it. I know it’s not on purpose, but I feel as if it was on purpose” (RSP49, Iraqi, M). Along the same lines, many participants were extremely pleased with our visit and that MSF had sent “somebody after all these years to check on them.” I also received warm feedback on my visit: “Thank you very much for this nice visit, and I hope this will be repeated in future, so I won’t say that the organization [MSF] have forgotten all about us [patients]” (RSP49, Iraq, M).
I was often encouraged to “take pictures and show them to the doctors in Amman” in the hope of obtaining “the missing parts” of their treatment. When I was in Iraq, I discussed with one of the MLOs the rules that pertained to patient follow-up. I mentioned “a chronic patient who needed long-term follow up.” The MLO responded: “Just one medical thing: surgery is not a chronic treatment; when is done, it is over and the patient is discharged.” This type of stance not only causes the RSP to be perceived as only a surgical programme: it highlights the limitations in MSF’s thinking about holistic long-term care, and it shows a specific attitude that MLOs, who are the patients’ entry point into the programme, have in relation to the patients. I will explore this further.
A few patients who attended the interviews in a Baghdad hospital requested a medical exam. Some of them insisted on showing me their injuries, despite my explaining that I was not medically trained and was therefore unable to give them medical advice. For such patients, I often enquired if a MLO could do a quick examination after the interview. There was great reluctance on the part of the MLOs, and instead of checking the patients they looked at the computerized patient database. Occasionally an MLO told me, “The patient is MBA-ed at Amman and we can’t do anything. No matter what we say [if we examined them], Amman [meaning the surgical team that makes the decisions] will give us the same answer.” In such cases, they refused to examine the patients and their advice to me was, “You will face many cases like this; try to get out of the conversation.” I also observed the tendency to use excuses to avoid establishing contact. Notes that “patient’s contacts are lost” were made. But I was able to contact these patients after repeated phone calls.
An MLO asked me, “Do you really want to call that particular patient for the interview? We know her, she is really naggy The expression “nagginess” is commonly used in the hospital to refer to patients who act outside of the expected norms of behaviour; asking too many questions, for instance, can be labelled as “nagginess.” and will give you a headache! We told her a number of times that there is nothing that can be done [for her].” The patient they were referring to was the case mentioned above who was promised a return to RSP but was later rejected without explanation. Her enquiries were interpreted as “nagginess,” and she was “being difficult,” hence it was better “not to talk to her at all.” Another MLO used “high expectations” to explain that a patient “has a problem” because he requested some justification for why his trip to Amman was delayed for six months. All of these examples indicate that patients sometimes struggle to receive basic feedback information, and that if they insist, they are considered “naggy” and “problematic.” MLOs also expressed suspicion about the information patients provided, and they frequently labelled patients as “untrustworthy.”
MLOs in Iraq were clearly concerned with “what Amman will say,” and it seems that in order to protect themselves from being “told off by Amman” they use different strategies to avoid hearing back from patients. They expressed the frustration that arises from being between two opposing forces: the patients and Amman. One of them told me that he had been threatened by a patient and his clan. It is understandable that feelings of unease and mistrust prevail in these interactions, which, in turn, seem to influence medical decisions.
MLOs commented that the only feedback they receive from Amman is that “the file is closed.” Hence, they feel they are not in a position to communicate anything more detailed to the patient. Their “duty as medical doctors” is also compromised since, with this current arrangement, they cannot influence medical decisions. The tendency to avoid re-evaluating a medical condition for a patient already fully discharged from the RSP, and hence to avoid any “pressure” from them, is understandable. But it is the patients who pay a high price in this context.
This indicates a need to formalize follow-up procedures for patients and to provide more support to MLOs. They are an important entry and exit point for RSP patients and, due to their contact outside the hospital setting, often have a more holistic outlook on the patients’ personal, social, and medical situations.
Communication and related struggles
Most patients commented that any medical information delivered to them was “clear” and that they felt comfortable asking questions. For instance: “Of course, I was involved in decision-making. For my surgery, they gave me options. When they removed the nail, I was given choices. When I was going into the OT, I chose to have local anaesthesia in my hand and be awake when they remove the nail. They [first] wanted to give me general anaesthesia. There were things that they told me about and gave me choices, and I chose” (RSP28, Syrian, M). Some commented that they were involved in medical decision-making “to some extent, but not to a large extent.” But some others were not at all satisfied with this element of the treatment.
This last group expressed their dissatisfaction with the difficulties they encountered when they tried to discuss their treatment priorities. They report feeling ignored:
It was in Jordan one month or less after leaving Syria when I went to MSF – I don’t exactly remember. But in MSF they focused on my hand the most. They focused on the fracture that was in my hand and finger. Every time I told them about my leg, the doctors said, “When we finish the treatment of your hand, we will start with your leg.” I was like that in the hospital for three months or four months. (RSP28, Syrian, M)
Another patient felt similarly: “No, I could not contribute my ideas. I depended on them [the surgical team] and on their decisions” (RSP50, Iraqi, F); and another said, “The surgeon told me: ‘We know our work.’ I asked him: ‘What are you going to do?’ He said [again]: ‘We know our work’ [without further explanation]” (RSP27, Syrian, M).
One of the patients was annoyed that a decision taken on a surgical procedure that he had agreed to was changed “at the door to the OT” without any discussion:
As for the doctors, there was only one thing that annoyed me when I left MSF. There was Dr [mentions a name of a surgeon who has left MSF], who did tendon-transfer surgery in my hand. When I went into the surgery, I signed on to nerve-exploration surgery [not the tendon transfer]. Before [my surgery], I went to his clinic [at the hospital OPD] and he told me it would be [the surgery of] nerve exploration. I signed the [consent] paper. At the door of the OT, he looked at it [the arm] and said, “The nerve exploration needs a long time for treatment. Let’s do the tendon transfer instead.” That was at the door of the OT! I wish… The right arm is considered the fundamental thing of the body. So, I wished it was a nerve exploration [that had actually been done for me to improve my right arm]. (RSP20, Syrian, M)
Using English or employing specific medical terms was also seen as problematic for patients who did not fully understand planned medical procedures and who were given no chance to discuss what was going to take place: “When the surgeon came, he didn’t explain to me what procedures I had. He just talked to the foreigner who was next to him. They didn’t speak Arabic and I didn’t understand” (RSP31, Syrian, M); “The way they delivered medical information to me, sometimes I understood it and sometimes I didn’t. They tend to speak in English terms or specialized terms, and I don’t understand the specifics within their specialty” (RSP53, Iraqi, M).
Lack of communication was identified in other non-medical areas of care as well:
One would have an appointment and the doctor would postpone it for one month. When the patient knew the reason, he felt emotionally comfortable. But when one has a surgery planned for that week and it’s postponed, [he asks the surgeon] “Why [is it postponed]?” and they would answer him, “We just postponed it.” But we always told them, “When there’s a reason for delaying the surgery, explain the reason to the patient. Does one have infection in the wound, and this is the reason for delay? Is it possible that the [physical] response from the physiotherapy [is lacking] and the lack of improvement would cancel the surgery?” When the doctors delay the surgery and there’s no more discussion, this was annoying for the patients. One didn’t feel emotionally comfortable with this. (RSP17, Syrian, M)
Hence, not every patient felt that they were listened to or that they received an appropriate response, particularly when it came to discussing their treatment priorities. According to these accounts, patients excluded from the dialogue involving their basic treatment are seen as passive recipients of care.
The insufficient involvement of patients in their own healthcare starts at the admission process. I observed videos of deformed limbs presented to the validation committee. These videos do not feature the faces of the patients, and they do not feature the patients’ own words describing their challenges in life and treatment preferences. The lack of a negotiating space between patients and their healthcare providers, the lack of systematic, transparent documentation of the circumstances surrounding patients’ dismissal from the programme,Patients who cause “safety threats” to the hospital are dismissed from the programme. Currently there is no systematic documentation of such cases nor of the context in which the decision to dismiss them is taken.and the lack of a complaint mechanism or opportunity for patients to appeal are institutional deficiencies that remove patients from the decisions that will influence their future lives.
Unease around the definition of war-injured
A topic which appeared to be taboo with the participants was whether they were injured in war. The RSP accepts patients who fit surgical criteria and lack access to the same specialized healthcare in their war-torn countries, even if they were not injured directly in war.
Despite this, their concern that they might not be considered a victim was obvious in the way they narrated their past, particularly if they were not injured in war. An Iraqi male participant, for instance, described how he “stopped the car on the side of the highway to get some water from the trunk of his car because I was thirsty,” but then he appeared nervous and added, “when bombing was going on.” He continued: “Then another car [approached] at high speed and lost control and hit me.” He paused again and added, “Perhaps he was shaken from the bombing sounds.” This participant later admitted he was injured a car accident, but that he was “supposed to be registered as an explosion victim” at RSP (RSP69, Iraqi, M).
An Iraqi female participant similarly mentioned the war context despite having had an accident at home: “During the war we were running away from the bombing sounds and I fell into a pot with boiled water” (RSP50, Iraqi, F).
A victim of a suicide attempt – self-immolation – from Syria also mentioned that “not many people in the hospital knew about it.” She expressed some concern about disclosing the real story to me. Throughout the interview it was obvious that this patient still suffered feelings of guilt: “If it was a car accident, it would be God’s faith. But I was the one who did that to myself [crying]” (RSP15). She translated this into a perception that “others deserve treatment more than me,” which was then reinforced by the idea that she wasn’t a war victim. Her conclusion was that she should remain quiet about the history of her injuries. The emotional burden of keeping this secret was obvious in her emotional responses.
I observed a related dilemma during discussions among doctors on the validation committee. During one of the validation meetings, we looked at a video of a patient who was limping. One of the surgeons was convinced that his deformities had existed since birth: “Look, there are no marks on his skin, no scars which would be obvious if the wall had fallen on him [in war] as he reported.” The surgeons validated the case on the grounds that the patient was suffering from a deformity that could not be treated in his own country and “we have the capacity to do it here.” The discussions, however, were carried out in a “hush-hush” way, and the sense of discomfort was obvious when the decision was taken.
One of the RSP doctors confirmed such cases. He said patients tend to adjust their stories when providing their medical histories, which, according to him, negatively affects medical decisions. He noted that these “exceptional cases” felt that “they could be sent home without treatment” if the truth were discovered. He further commented on how he needs to reassure them that “they, like all the others, are validated into the programme, so their treatment is not under threat.”
It was unquestionable that the treatment at RSP greatly improved the lives of all three mentioned patients. But it was also clear that the patients and surgeons felt under pressure to “fit the story in” and make it appear war-related. The programme could much more accurately capture its scope if it were labelled as “RSP for the war-affected.” This would reduce the pressure on surgical teams who are currently placed under an ethical dilemma of whether or not to validate certain patients. Changing the programme definition would also reduce the tendency for patients to tailor their stories to the definition rather than reporting them as they actually happened.
Gaps in psychosocial support
The likelihood that patients will suffer from injury-related psychological trauma is very high, and therefore psychosocial support was from the beginning of the programme one of its main treatment components. When I attempted to carry out observations in the psychosocial department, the idea was resisted on the basis of ensuring patients’ confidentiality. As a result, observations of my participants are the dominant source of information in this field.
When I explored with them their experiences with the psychosocial support services at the RSP, some participants did not even know that it existed. I assumed, then, that they did not receive any treatment in this regard (“Nobody offered those sessions to me” (RSP5, Syrian, M)), or the sessions were not relevant enough for them to recall any impact. One patient, for instance, recalled a counsellor listing the hospital rules and nothing more:
“He told me that ‘The treatment in the hospital would be like this: Smoking inside the hospital is prohibited. Don’t be close to the patients who have infections’” (RSP6, Syrian, M). Those who did know of psychological sessions at the RSP thought they were not adequately delivered. “The psychosocial sessions: it was as if I was a little kid and another person was telling me, ‘Do that. Do this. This might be good and beneficial for you,’ such things” (RSP31, Syrian, M). Another patient felt similarly: “There were four of them [psychosocial specialists] and every month a different one came and I had to repeat my life story over and over again” (RSP56, Iraqi, M). Some patients refused the counselling sessions altogether for fear of being stigmatized or labelled as “insane” because “people say so about someone who receives psychosocial counselling” (RSP3, Syrian, F).
Some other participants said they thought the sessions were too early in the process of their emotional recovery to be effective. The phrase “I was emotionally tired” was used frequently to express a level of emotional exhaustion: “No, it was difficult [to attend the psychosocial sessions], because I was feeling tired and in emotional pain. At that time, we were just arriving from Syria. It was difficult. In that year, we didn’t feel comfortable at all. It [that year] was emotionally and physically tiring” (RSP2, Syrian, F). Another patient, who was a victim of torture, described how the counselling sessions were offered to him, but he just could not talk to anyone at the time: “No, I didn’t accept the counselling in the hospital. When I was alone, I remembered the whole past as how I was living before [the torture] and how I am now, how my life was, and how it has become. I became an introvert [after the experience with torture]. I didn’t like to speak with anybody” (RSP20, Syrian, M). Another participant recalled: “I didn’t attend the counselling sessions. I might be asleep or sad at the time [they were being offered]” (RSP42, Iraqi, M).
One of the Iraqi participants mentioned that
those sessions always made me cry. I don’t have good memories there; I have sad ones. It was when the psycho support person came, every time he came to talk to me, I started to cry. We were like three or four in the session, Iraqis and Syrians; we would sit like this [indicating around the table], and whenever he [the counsellor] started talking or asked me a question I started to cry. I couldn’t stand his questions! Because then I remember my family back in Iraq, especially that I have daughters. If they were boys I wouldn’t care as much, but because they are girls, I worry a lot about them. (RSP51, Iraqi, M)
Some patients reported doing emotionally well and not needing the psychosocial sessions: “My emotional state was stable. There were no [emotional] pressures. I didn’t have any [psychological] problems. So, it [the psychosocial sessions] didn’t play a big role for me” (RSP11, Syrian, M); “I wasn’t emotionally affected. I lost my hand, but there were two guys who were killed in front of me. The counsellors here evaluated my situation and decided that ‘He doesn’t need psychological sessions’” (RSP16, Syrian, M).
Other participants, however, benefited from the sessions, “feeling comfortable and comforted.” Many reported that counselling sessions made their stay in the hospital much better: “My emotional state was very bad. I didn’t accept being with others. I was always alone. I went downstairs by myself. I stayed in my room by myself. We had more intensive sessions with my counsellor. She told me, ‘We should sit together for one hour to talk every day.’ And we really talked for one hour every day. And in her own way, she made me have friends from the hospital and make social relations” (RSP12, Syrian, M). Some also commented how they managed to overcome the feeling of stigma related to the mental-health care: “We Iraqis hesitate to talk with shrinks but, honestly, it was very helpful for me to talk with a psychiatrist [in the MSF hospital]” (RSP65, Iraqi, M).
Many participants greatly appreciated the social activities organized by the psychosocial team. They especially liked the daily trips out of Amman into the countryside, parties for women, and parties to celebrate Eid, for example. They felt that keeping the planned activities in mind was something special that helped to break up the daily routine: “The nicest thing was the party. We couldn’t wait until it was Monday to have the party” (RSP4, Syrian, F).
During the interviews, I observed many participants still suffering from mental-health issues. Some of them cried from the moment they saw me until the end of the interview, and many reported lingering feelings of depression. One of them described this:
I saw the aircraft [before I got injured]. This is the most traumatic thing that I saw. Before my injury, when there was aircraft bombing, I wasn’t afraid of it. I went out [of the house] to see what was bombed; I just stood there and looked at it. And I went out there to check on people [after]. But after the injury I feel so emotionally destroyed. I can’t… at all. I can’t stand anyone. I can’t see anyone. It is like depression. I like loneliness. If aircrafts came now, I would pass out. (RSP29, Syrian, F)
Similar struggles were reported by other participants. For instance: “During the one month and half that I spent at home, I was very introverted. I couldn’t go out of the house at all. I didn’t speak with anyone. I was all alone. I reached a stage where depression was normal” (RSP20, Syrian, M).
From their perspectives of Syrian and Iraqi participants, their emotional stress was partly related to their past and partly to the difficult situation they face today: “Fear of the future, the fear of being lost, concern for our lost country, and concern for our children’s future – sometimes the difficulty of getting a job as we are refugees. These are the emotional obstacles [we face daily]” (RSP20, Syrian, M).
Feelings of severe anxiety were often mentioned. Syrian participants talked of being overwhelmed by a sense of panic when they heard aircraft. Some reported suffering from short-term memory loss, and others said they still suffer from regular nightmares. Their memories of suffering still chase them. “Sometimes, I remember what happened with me, mostly in the night. I feel like there’s heartache, but I can’t let it out. When something difficult happens, it’s difficult to forget it” (RSP9, Syrian, M). It was mostly Iraqi participants (both men and women) who talked about their outbursts of anger, leading them to be aggressive towards their family members: “It’s rare that I feel calm. If you noticed when I came here I was mad, but then gradually [talking to you] I felt relaxed and fine. Even with my family I’m always frustrated and angry” (RSP46, Iraqi, M). Iraqi participants also reported feeling highly anxious as a result of their experience with explosions. For instance: “I cannot even cross the road, I feel scared” (RSP41, Iraqi, F). Some participants reported being under psychiatric care when they were at the RSP, but none of them was working with any kind of psychotherapy at the time of the interviews.
The family members of patients also appear to be strongly emotionally affected. During one of the family visits in Jordan (RSP10, Syrian, M), it was the participant’s parents who mainly answered my questions. The father communicated how much he needed to sacrifice to keep their son “safe and hidden at home in order for the army not to mobilize him.” He emphasized that he was “the one who was taking risks, trying to make money and as a result got imprisoned.” The mother commented: “When they saw any guy, they would arrest him.” The parents finally left the room and the participant, a young man in his mid-20s, was given space to talk freely. He communicated feelings of guilt “for all the sacrifice his parents made to save him.” He reported feeling as if he was “a burden” to others and said it was difficult to live with this feeling.
Parents of other participants who were injured as teenagers were similarly extremely protective and attempted to dominate the interview. They referred to participants as “shy” and barely let them speak. After I managed these dynamics, it was obvious that the participants were open and well spoken. It was the overprotective parents who kept them silent during the interviews and, according to my observations, also contributed to their social isolation at home.
Hence, for many patients, psychosocial support is needed but is not adequately delivered. The psychosocial support offered to patients at the RSP is focused on short-term objectives related to their experience of trauma. Recent psychological models that explore the impact of armed conflict on mental health (Miller and Rasmussen, 2010) are, however, moving away from a narrow trauma-related focus to a broader exploration of daily stressors, such as social marginalization, inadequate housing, and changes in family structure and functioning, all of which add to the psychological distress of trauma victims such as RSP patients. Psychosocial support for parents is essential since, according to the literature, excessive parental control, overprotectiveness, and infantilization – all things I observed in my interaction with younger participants in their family environments – increase the symptoms of PTSD in adolescents and hamper their recovery (Bokszczanin, 2008).
In sum, participant feedback confirmed that the MSF RSP does indeed provide a healing environment for patients affected by war. The healing of their physical and emotional wounds is supported by the personalized relationships they develop with the hospital staff and among themselves. Patients assist each other and have an unmistakeable sense of solidarity. Patients’ expectations of the MSF programme are often met, which include the satisfactory provision of pain management. However, patients too often do not feel that their priorities are sufficiently included in the treatment plan, shown mainly when they talked about the challenges they face after discharge from the hospital. Several communicated their concern with the lack of transparent communication, and they reported that they saw rigidity in the application of institutional procedures, which they felt sometimes compromised their medical care.