the social world of children with hematological conditions

this is the chapter i have been writing since mid-august. roughly 3 months on the making and i am not getting there. i still need to focus more my approach. i want to show the 'non-professional' work those concerned others put, how they organize themselves in relation to the irruption of these illnesses in their children's lives, how they have to be separated for months or even years, how they need to travel and/or relocate themselves, how they need to learn new skills and enhance their abilities to mobilize resources within the children's hospital and outside it in governmental offices, ngos, and other institutions. this chapter is the last i need to write but i have to say that only one of the seven is more or less ok. the rest need huge re-writing and reconceptualizing and retunning my discussion and what i bring as new to this field of tensions.
alright. here am i.

The complexity of the hospital

This place is a small village full of life and hectic movements in the mornings during the weekdays. From very early in the morning, before sunrise, families come to the hospital, form long queue lines for marking an appointment or wait on the waiting room of the emergency unit. Health personnel also start very early in the morning too. Cleaning personnel, cooks, administrative, technicians, nurses, medical residents, staff doctors, psychologists, psychiatrists around 8am start with their usual activities. During weekends and after 4pm the hospital staff is reduced and only some technicians, nurses, medical residents and staff doctors at both the emergency unit and the pediatric acute care unit remain working at the hospital.
This hospital is one of the most complex and specialized pediatric institution at the country. But this doesn't mean it only covers complex conditions because many 'simple' ones are also covered. Hence the range of conditions goes from the 'simplest' to the most complex ones. Also healthy children are assisted at the hospital and are controlled by the 'healthy child' clinic.
Families and children may come from very different (and far) places to be treated at this hospital. But they are not the only ones. This place also attracts professionals from all over the country (and even other countries), and many medical residents who try the exam to get into residency. From all the residents that I met while conducting fieldwork more than 1/3 where not from the city of this children's hospital. In terms of medical residencies there are two types: the Municipal Basic Residency in Clinical Pediatrics (4 years), Infant-Juvenile Psychopathology (3 years), Biochemist (3 years), Pharmacy (3 years) and Pediatric Anatomical Pathology (3 years). The other type of residency is the Municipal Post-Basic Residency which have residencies in more than 15 sub-disciplines including Oncology and Hematology. In order to be eligible to a Post-Basic Residency first doctors need 5 years of medical school and 4 years of clinical pediatrics.
In many ways it can be argued that medical residents and nurses are the ones that sustain the everyday functioning of this (and others) hospital. Without their work, and without the work of technicians, administrative, and the auxiliary personnel (biochemists, biologists, biotechnologists, pharmacists, mycologists, etc.) this hospital wouldn't operate a single day. However, it is worth mentioning that during the weekdays a wide range of specialists throughout the many departments, services, units, teams work at this hospital. So in many ways this is a complex site, complexity in terms of people and specializations, and complexity in terms of the space and the machinery available. The building itself still retains the features that it had a century ago, there are more than ten different wings with parks in between. It takes time to families and even doctors to get to know the places, and some times it takes years. Many wings are intricate labyrinths and often when I was following residents they would take a short cut that I wasn't aware of.

The space of the hospital IV

I choose three key actors within the children's hospital landscape. When children experience lack of curative options or when the treatment is working children and families will develop relationships with these three groups of professionals. Palliativists, hematologists, and communicable diseases specialists are central to the experience of these children and families. But they are not the only one. This is an intricate space where different disciplines and sub-disciplines would interact with children and families at certain point during the diagnostic-prognostic-treatment process. After feeling bad for days, weeks, or months a child may be diagnosed at this children's hospital with a particular condition such as ALL (acute lymphoblastic leukemia) type L2 but this label may come after some days he or she was hospitalized and many different tests were run in order to confirm or discard other conditions. So diagnosis, prognosis, and treatment are entangled in many different ways. There are diagnostic tools and procedures (which some times can also work as therapeutic) for the 'main condition' like in this case leukemia but there are other moments during the treatment process in which they also need to diagnose a specific fungi or bacteria that is developing and growing inside the child's body. This means that children would interact with multiple teams, groups, units, and would be exposed to manifold diagnostic tools such as MRIs, X-Rays, Biopsies, Ultrasounds, Dopplers, etc (usually these techniques are meant to produce images, take a small sample from the body to test it, or visualize the speed and direction of a particular sample volume). Hence, diagnostic tools are continuously present in the experience of children, families, and health professionals. Especially, in tertiary care teaching hospital like this in which all kinds of specialists and biomedical technologies are available and "ready to be used".
But going back to children and families' experience at the children's hospital one could say that they relate more with specific units and groups of professionals than others. It is accurate to say that for the families there are a group of core professionals and satellite professionals. Particularly, children with leukemia have as their core professionals the hematology unit and the communicable diseases unit (where they go when hospitalized). Whereas children whose treatment seem not to be working (any condition not only leukemia) will have the palliative care team as one of their core professionals at certain moments during the treatment.
The relation between the hematology unit and the palliative care team is particular since they do not seem to interact so much. I guess this may occur for many reasons: 1) children with non-solid types of cancer have a different illness trajectory than children with solid tumours in which usually they may need palliative care early in the treatment, 2) according to the hematologists they themselves provide palliative care treatment to children when they need it, 3) it is not clear that a child might be experiencing end of life issues, some times their condition may change very suddenly and dramatically in terms of hours .

what is my contribution to the anthropological field?

good question. i will try to answer it. i tried to make a comparison between my work and what myra bluebond-langner has done in her more than 4o years of work in this field in between anthropology of children, medical anthropology, and anthropology of the end of life. i thought i was making the comparison but my supervisor asked me in an email:

How would you summarize the comparison with her work and your distinct contribution? How do the studies compare on the institutional basis, organization of clinics, doctor-patient interaction, patient-family interaction?

so i have to go back to my comparison and re-think it through these questions....

The Space of the Hospital III

There are two entrances to the children's hospital, each from two different streets, the main one and the other on the opposite side where staff park their cars. Paradoxically or not there is no ramp on the main entrance so people have to lift baby's cars or wheel chairs if they want to get inside the hospital, or they may go and ask to the security guards to let them enter through the ambulance’s door, which is always close to control the movement of people within the hospital.
Once inside the hospital families and patients need to understand the space and how to move within it. There's a clear rhythm of excitement and work from very early in the morning until 1 or 2 pm when everything starts to calm down. Usually staff doctors and some technicians work from 6am until 2pm, and often they leave at that time to work somewhere else (private offices, private clinics, other hospitals, etc.). So then after 2 pm the ones that stay are resident doctors, patients, family members, and few staff doctors, technicians, and administrative. Usually by 4 pm the hospital seems very empty, but still there is a lot of work in all the units and other clinical sites.
This is also a place where other hospitals bring their patients to perform specific studies. The network of city hospitals share their resources so for instance CAT scans are performed at this children's hospital and often you see adult patients waiting in radiology for their turn for a CAT.
Certain studies like CAT can be done at any time because the machine is working 24/7, so some times children have a CAT at infrequent times like 4 am.

The emergency room works 24/7 and is always full of people, but it is more crowded in the morning. It is next to the main entrance and is the only way a child can get into any unit and be hospitalized. Many children are treated ambulatory but if they need to be hospitalized they need to go through the emergency room. It is the same emergency room for all the kinds of patients that are treated within the hospital. If children need to be hospitalized they send them to the units that have treated them before according to the specific child's condition or depending the availability of beds at any given time. Some times there's no bed, like in the peak flu season, and they may stay at the emergency room for days. Very often parents and family members of children with oncological and hematological conditions complain a lot about the lack of a specific place for their children. These are a particular kind of patients since they almost always have their immune system compromised, therefore being close to other children with other kinds of diseases is a serious risk.

The space of the hospital II

Children with hematological conditions
In this children's hospital children with hematological conditions (different forms of Leukemia, anemias, or blood diseases) are treated by the Hematology unit. They will have these hematologists as the main doctors but if they need to be hospitalized they may end up at different clinic units that have beds, usually isolated single rooms since these children need to be closely checked to avoid infections. These children go through cycles of low defenses from their compromised immune systems. Given its unespecifity chemotherapy attacks all cells ("good" and "bad") and attacks more those cells that divide faster and this have major impacts such as decreased production of blood cells, mucositis (inflammation of the lining of the digestive tract) and hair loss; among others. The oncology-hematology unit has a 'day hospital' site where they provide children with chemotherapy, blood transfusions, immune-globulin, etc., but they lack of their own beds to hospitalized children. Then, these professionals rely on other doctors, especially residents at clinical units or at the communicable diseases units.
The oncology-hematology unit is a three-level building that has at the ground level a major waiting room, then it has 9 boxes to clinical check ups, and the 'day hospital' for chemotherapy. Then, at the first level it has three rooms for procedures such as bone narrow aspirations and lumbar punctures, and then several different offices for all the oncologists and hematologists. At the second level there is a big laboratory where professionals perform all kinds of lab tests to blood or cerebrospinal fluid. In this building children and families stay for hours, and days, and weeks, and months during children's treatment. They start 'staring at your own shoes' as one father described the waiting room to me. But then they recognize other faces, and children and parents become friends with other children and other parents. There is a 'metegol' (a soccer game to play with metal players and a ball) in the middle of the waiting room where children usually play, there is a big tv always on, and there are people passing by all the time. Doctors call patients and people enter to the boxes first to take a blood test when children arrive early in the morning, and then to be checked by oncologists and hematologists to decide if they are fine for the next cycle of chemo or whatever they need to do in the specific moment of each child treatment.
(to be continued)

The space of the hospital I

Ok, then. So I will try to use this blog to start thinking about and writing on my dissertation.
Here is my first reflection on the space of the children's hospital where I conducted my fieldwork.
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Located in the heart of a middle class neighborhood the children's hospital is built in a two full city blocks area surrounded by four streets. It actually breaks the pattern of the streets and two streets bump into it and have to circumscribe it. The hospital has more than 20 buildings and more than 60 departments, services, and units. The children's hospital is dependent of the Buenos Aires city government, and is one of the two main pediatric hospitals in Argentina (patients and families come from all over the country, even from bordering countries). Jointly with the national children's hospital these two hospitals are the main public institution when high complexity is needed.
There is a wide range of social actors dwelling in these buildings: all sorts of professionals, administrative staff, family members, and children as patients or healthy siblings shape the human landscape of the hospital. Within this constantly changing assemblages a relatively small group of children live under critical conditions and are characterized and narrativized by different professionals as “terminally ill.” These narratives, of course, are never clear. The line is often drawn between the ones, who are still receiving curative treatment (Chemotherapy, Radiotherapy, and others), and the others, who “passed” to Palliative Care (PC). (Although children can move back and forth from one “phase” to the other endlessly.) This precise point in which some children are seen as non-adherent of any curative attempt, and, therefore, “pass” to palliation is critical. On the one hand, it shows the marginal position of the PC professionals who can only “receive” the children and have relatively few options to influence the trajectories of children and families within the hospital before this precise event; on the other hand, it frequently produces a separation from the curative professionals (Oncologists, Hematologists, etc.) that is seen through children’s and parents’ eyes more as denial and aversion: patients/families that have to be avoided, people that no longer require their services.
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The Palliative team at the children’s hospital has a connection with the Argentinean branch of Make a Wish Foundation. This is an organization that started in US with the aim of producing wishes to terminally ill children. Wishes of any kind are being generated all over the world through the hundred of branches. I think what is important here is desire in itself. The production of certain kinds of desire, with specific aims, under particular conditions, ultimately, is also producing desirability for certain kinds of terminally ill children. These “most wanted” children, “clients” of this foundation, need to be in the exact phase of their ill condition: they cannot be too ill (they would not enjoy their own wish, and the wish-makers would feel distressed) nor be too healthy (their wishes have no sense). In the picture below one can see a girl who has at least three sources of desirability (besides her cancer): her gender (woman), her ethnicity (from India), and her family status (orphaned) make her a desirable target of charity.
This technology permits to focus the gaze into desire, and, in so doing; it shows different intensities of the will. It is like desire produces a side-road of what you have to live (on both side, the wish-givers and wish-receiver): you know you are going to die, but death resides (for a moment) as the background.