In many ways MBL was a pioneer who opened up a new field within anthropology. Since she was in her late 20s and conducting fieldwork for her dissertation until now she has being producing a corpus of work, a mixed oeuvre, which has totally transformed this sub-field. To me MBL’s work is my starting point. She battled against theoretical and methodological misconceptions; her work has clearly demonstrated the active role of children as actors in their own rights and as actors that are very aware of their terminal condition.
But there is something that my work will contribute, which is different from MBL. In The Private Worlds of Dying Children MBL creates different characters juxtaposing several patients into one character. She explicitly said that she did it to protect the subjects to not being recognized but also to synthesize the commonalities of the different stories of patients and families.
My approach will be different. I take MBL as my starting point but I don’t want to combine different patients’ stories quite the opposite I want to amplify these stories, and to re-ensemble the social (following Latour) only at the end of my analysis. In other words, I understand MBL’s approach, but I will try to dismantle each case in its complexity and broaden even more the differences. I won’t unify many cases in one; instead I want to start from one case to see more and more complexities. As I said MBL is one of my starting points, she and other authors within anthropology of children have all demonstrated children are social actors that know more than we imagine about their own lives. From giving no agency at all we moved to conceiving children as very different actors. But I think we still need to problematize how different they are (or are not). What is the distinct of children? At the legal, physical-mental development it is true they are different, but if we consider their capacity to affect/being affected I don’t see so much difference with other non-infant humans. In this capacity we are all equal. Therefore, my contribution lies on a detailed and careful understanding of this capacity (to affect/be affected) in both children and all the people involved in the care of terminally ill children (and the impact that a terminally ill child produce at the social level).
There are differences and commonalities when comparing MBL’s institutional space and mine. First, in terms of commonalities, both places are tertiary care teaching hospitals. Second, as MBL found, there is a big difference for both children and families when comparing the clinic and the hospital. There are a lot of anxieties associated with each visit to the hospital. Once a mother told me that each time they have to go for check ups she need to prepare a big bag with food and clothes since ‘you never know if you are going back home or you’ll have to be hospitalized for days’. On the other hand, there are some differences between MBL’s research study for The Private Worlds of Dying Children, MBL conducted fieldwork in the Dpt of Pediatrics of a large teaching hospital whereas my study was conducted at a Pediatrics large teaching hospital. Another difference is that within the Children’s Hospital the Hematology unit does not have beds to hospitalize children so they rely on other units to do so. Then, this may bring tensions between the hematologists and the other professionals and units who are in charge of the everyday care of these children. The hematologists are in charge of the hematological condition, the treatment, and the management of information but the everyday activities and control of these children is taken care by other units, especially the resident doctors of those units. So one big difference with MBL’s location is that hematologists cannot control the whole process and other actors are getting into the picture.
Organization of clinic:
The Oncology-Hematology unit where I conducted fieldwork is a 2-floor separate building within the Children’s Hospital. On the ground floor when you enter the building there is a big waiting room space with a big foosball just after entering the room. Then, there are four or five rows of benches in the middle and chairs next to the walls. There is a big TV on one corner oriented to the chairs and benches. Then, on the right side there is a desk where families announce their presence to the secretaries. Then, there 9 boxes where oncologists, hematologists, and clinicians do the check ups. There is also a box where nurses take blood samples to children early in the morning when they just arrived for the check ups. Then, on the left side there is the “Day Hospital” in which nurses take care of children for preparing and giving chemotherapy and blood transfusions.
Then, on the first floor there are the doctors’ offices, seminar rooms, and a storeroom for the medicine. Beside this part there are three “Procedures Rooms” in which Post-Basic Residents of the Hematology Unit conduct Lumbar Punctures and Bone Marrow Aspirations. There is also a waiting room with stretchers with 45o inclination (sometimes when they perform Lumbar Punctures they also give chemotherapy on the cephalorachid fluid) where children recover after the procedures.
Children pass through different stages from the first visit to the children’s hospital, there are different actions associated with each stage:
Moment 0: “Debut” (native category): For many different reasons children are sent to the Children’s Hospital (anemia, bleeding, tiredness, migraine, pain, etc.) and after some tests (LP, BMA) they are diagnosed with an hematological condition; hence, this is their ‘debut’ as ill children.
- Patients and families come for check ups* to the clinic depending the phase of the treatment: Usually on the first week after the debut children stay at the hospital for high corticoids doses. But then the first 33 days are critical to the assessment of the type of hematological condition, its risk to the patient, and how the patient reacts to the treatment. There three key moments beside the day 1 after the debut: day 8, day 15, and day 33. Hematologists check if the response to the treatment is good or not, if there is a complete remission or not. These are the three instances in which hematologists perform LP and/or BMA to check how the treatment is working. On the day 33 hematologists can assess, depending the results, if the risk is low, standard or high. So according to several factors such as type of Leukemia + age + LP/BMA responses = risk = type of treatment (there are different protocols), and this treatment would in theory takes 1 or 2 more months beyond the first 33 days. But usually takes longer since children get infected and have all kinds of symptoms and difficulties, which delay the treatment.
*Check up procedure: 1) Children and families need to be present at the desk the appointment’s day early in the morning before 7am, 2) then they wait, 3) then a nurse take a blood sample, 4) then they wait, 5) then a clinician from the hematology unit checks the patient, 6) then they wait, 7) then depending the blood test results they either: a) can go back home and need to come back on X days or b) go the Day Hospital to receive chemotherapy or blood transfusions or c) need to be hospitalized in case there is something wrong.
- Patients and families come directly to be hospitalized for a planned hospitalization before starting a chemotherapy phase: Sometimes before starting a new phase for the chemotherapy treatment children need to be “pre-medicated” (usually is a combination of NAIDs, Antihistamine, and Hydrocortisone and lots of fluids) for 24hs. So if they are ambulatory patients they come to the hospital one day before starting the new phase of the treatment.
- Patient and family come to the admission unit to be hospitalized because children develop symptoms at home: After the normal hours of work during the week days and during the weekends everything goes through the Admission Unit (Guardia) which is open 24/7 and is the one in charge of all the admissions to the hospital beyond the regular hours of work. So if a child develops symptoms (fever, infection, vomits, diarrhea, etc.) when hematologists are not working at the Hematology unit the family will take the child to the Admission unit and he or she would probably be hospitalized at any unit that has a bed for him or her at that time. Whenever possible this child would be transferred to those units hematology feel more comfortable to have them in charge.
During the different phases of the treatment children may need hospitalizations. In this case the hematology unit would mainly ask clinical (there are 4 but they prefer 2 of them) and communicable diseases (there are 2 which are always full of children with hematological conditions) units for beds for these children. 100% of these children need individual rooms with strict isolation rules.
- Different doctors:
This is a tertiary care, high complexity, and highly specialized pediatric teaching hospital. Children would see many different kinds of doctors throughout the entire treatment. At one point in their treatment children would be treated by:
a) The hematology unit: hematologists, clinicians, post-basic residents
b) Other units when hospitalized: staff and resident doctors
c) Other specialists: after ‘debut’ to control before and after the treatment: cardiologists, dentists, ophthalmologists, dieticians, endocrinologists (for girls to inhibit menstruation), and others.
- Main doctors:
a) Hematologists, clinicians and post-basic residents from the Hematology unit. They know each patient, fill their clinical records, seek for their medicines and chemotherapy drugs, talk with the head of the hematology unit for every need they have in regards patients (then, the head will go to the director of the hospital or the cooperadora –the group of people that run the finances of the hospital given it is a non-profit organization). These doctors know everything about the patients but they are not 24/7 next to them.
b) Residents of different units. After many hospitalizations, some of which could take weeks or months, some residents of particular units (for instance, communicable diseases) are the ones who know more these children. These residents jointly with the nurses of these units are the ones that work everyday with these children.
c) Staff doctors (less frequent). In some units such as unit 9 (communicable diseases) staff doctors have a more active role and are aware of what’s going on with each patient and family. This is rare; usually staff doctors are less involved with children and families.
- Children very often “choose” their doctors:
This is true for many health professionals who told me that at certain point children would choose one or two main interlocutors, doctors who they think they can trust, and doctors that would receive more affection. These are the doctors children feel relatively comfortable and who they can get along with.
- Doctors very often “choose” their patients:
On the other side, doctors also told me that often, perhaps not so consciously, they ‘connect’ more with certain patients and certain families. Of course, they try to treat each patient and family the same, but for many reasons (some of them random like L. who has the same name of a 13-year old girl and she started joking about that and then she became very close to her patient) they also find that have more feeling with certain children and families.
0. In theory health professionals at this children’s hospital (and I would say at any hospital) say they make no difference in terms of the relationships they build with patients and families. However, in practice there are unclear boundaries and classifications that are produced in the everyday practice of these professionals. These classifications are neither fully explicit nor fixed but certain observations and expressions throughout my fieldwork made me think there actually are:
- “Easy” families: According to the doctors, I am not saying this from the patient-family’s perspective, one could argue that there three kinds of families. The ones that for different reasons they relate well to, families that understand clearly what they said and asked, and then not only do everything they are asked for but also they never complain.
- Normal families: Then, there are normal families that do not represent any kind of difficulty.
- “Difficult” families: And, then, there are ‘difficult’ families. Which can be ‘difficult’ for two main reasons:
a) “Medical” issues: This could mean many things from non-compliance to lack of understanding of medical information. Usually, when doctors mean “medical” issues they refer to organic and biological causation.
b) “Social” issues: Almost anything that falls outside the “medical” issues are considered as “social”, that is, “non-strictly medical”. These issues are poverty, lack of resources (material, symbolical, communicational, affective), distance to the hospital, capacity to transport quickly to the hospital during the night, etc.
- Stress/burn out symptoms: Families have to endure all kinds of difficulties and obstacles in order to not only give a proper care for their ill child but also to overcome impediments inside the family. Often, the stress and even burn out of the members of the family are so powerful that may conduce to divorce, families splitting apart, or the impossibility to care for other siblings who end up living with aunts and uncles, grandparents or neighbors. It is crucial to the future of the family to balance the energy and to avoid neglecting other members of the family like healthy siblings. Some parents told me that doctors who are not only focused on the ill child but also caring in terms of them and their other siblings are the ones generate more respect from them.
- Family and social network becomes critical: Families, especially parents, and above all mothers, are the ones that constantly travel to the hospital with the children, stay with them when need to be hospitalized, and are aware of every little detail of their diagnosis, prognosis and treatment. They are the ones who also go to the Drug Bank to seek for free Chemotherapy drugs or the Ministry of Health and Social Action to push for a pension procedure that is not ‘moving’. But these are the family members at the ‘foreground’, the ones that doctors treat on a day-by-day basis. There are others on the ‘background’ like grandparents, aunts and uncles, neighbors, cousins, older healthy siblings, etc. who also perform all kinds of actions in order to ensure the rest of the family is being taken care and mothers and fathers can concentrate all their energy and time to the ill child. But some families lack these networks. Especially, families that come from long distances from other provinces or from even bordering countries. Families from other provinces usually have some kind of aid from the “House of the Province” in Buenos Aires. Each province has a house in the city of Buenos Aires and these families go there to ask for some help (small pensions, bus tickets back and forth to the provinces, help with several bureaucracies, guidance for receiving free drugs from the national Drug Bank, etc.).
Patient-family-doctors relationship varies widely depending the combination of factors outlined above. The level of education, the socio-economic status, the origin, and the composition of the family (sometimes is only the mother and the child) when mingled with the complexities of the children’s hospital in terms of specialization and medical culture of each medical unit bring an endless possibility of combinations.