lunes, 13 de diciembre de 2010
What word would we use to negate the fundamental assumption of flux? Would stability be “unfluidity,” “non-fluidity,” “afluidity”? Would solids be “disfluids”? Words such as “hazy,” “fuzzy,” or “blurred” would have positive connotations.
viernes, 26 de noviembre de 2010
Yesterday I went to a discussion about Sontag's last book at the Belkin UBC Gallery and it was useful for me. At once I was like a fish out the water among art historians and people on different related art studies. Though they didn't make me feel out of context, since everyone was very focused on the reading and its connection with the current exhibition and general discussion. I was interested in discussing Sontag for my own research project. Of course, it is not same at all, but when dealing with children's end of life issues, the capacity to be affected and to 'regard the pain of others' is right there. So here are some quick notes I took from our discussion.
November 25, 2010
How much images can depict other’s suffering
The act of looking: regard (see and consider)
Political struggles and how much is shared those images?
The ethics of looking at something that involves suffering
On photography (1977)
Reject images as meaningful ways to convey suffering
Mirror images have not essential compassion
Aestethization of suffering neglects that suffering…. Becomes a general sense of suffering
Regarding the pain of others (2003)
What is the power of images: she saw images of death camps.
People see these images and why doesn’t war stop?
Why are we interesting and not interesting of other’s suffering?
What is the power of images?
Virgina Wolf: is not that women don’t like war and men yes
Subjectivity: may be is a combination of texts… images is not universal and not sufficient. There is something else: social context
Personal readings: people can be guided with texts in order to see images in certain ways
What is the function of war images? Point of view of the photographer. Aestheticizationof images.
War journalists are using composition of forms.
You only see some parts but how are they compose and what they depict are somehow performed?
Responsibility to regard other’s suffering is not only the act of imaging… it’s about viewing
The fault is on imagination, not being so imaginative in connecting to other’s suffering?
How much are we able to emphasize on other’s suffering?
Images as reminders or bearing witness?
Capacity to be affected is crucial
Dif between recognition and apprehended required affect (Butler)
Distances from the image: too much passivity or one that feel the tension (Adorno) and says ‘what I can do with this image?’
Art dilemma: from image to be everything (dictator) to everything (theory) without images (reaction against the art object). So now is returning to the object but with theory. The object turn? Object based work…
Context sometimes becomes a retaining wall? We only see the trace of something that happened in the past…
Do something with conceptualization… certain return to craft, effort on technique, time, work… Recuperate the work of affect without irony, make yourself vulnerable. Is this connected with regarding others on a vulnerable position (often suffering)…
Eduardo Cadava's "The Image in Ruins" from October
miércoles, 17 de noviembre de 2010
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.
martes, 16 de noviembre de 2010
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.
lunes, 15 de noviembre de 2010
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 .
martes, 9 de noviembre de 2010
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....
viernes, 5 de noviembre de 2010
The genuine community, or death as community, establishes their impossible communion. Community therefore occupies a singular place: it assumes the impossibility of its own immanence, the impossibility of a communitarian being in the form of a subject. In a certain sense community acknowledges and inscribes – this is its peculiar gesture – the impossibility of community. A community is not a project of fusion, or in some general way a productive or operative project – nor is it a project at all (…). A community is the presentation to its members of their mortal truth (…). It is the presentation of the finitude and the irredeemable excess that make up finite being: its death, but also its birth, and only the community can present me my birth, and along with it the impossibility of my reliving it, as well as the impossibility of my crossing over into my death (1991, The Inoperative Community. Minneapolis: University of Minnesota Press, 15).
Argentina, the third largest country in Latin America, has a population of more than 40 million people, with 90% of them living in urban areas. More than a third of Argentina’s population lives in the area that surrounds the capital city of Buenos Aires. According to the United Nations Development Report, 2003, Argentina was ranked 34/175 countries, with a Human Development Index 0.8491 (UNDP 2003). The WHO overall health system performance score situates Argentina in the spot 75 between 191 countries (whereas Canada is 30, and USA is 35). This combined measure of overall health system achievement is based on a country’s goals relating to health, responsiveness, and fairness in financing. The measure varies widely across countries and is highly correlated with general levels of human development as captured in the human development index (WHO 2000).
Since the last dictatorship, but especially since the beginning of 1990s, Argentina has seen how gradually, often abruptly, its socio-economic situation deteriorated. Argentina is becoming more and more impoverished and unequal, with wider economic gaps between the higher class and middle and lower class (Destremau & Salama 2002). The last economic crisis between 1998 and 2003 brought more inequalities and poverty, the economic growing phase between 2003 and 2007 only slowly improved the social conditions of the lower classes. From October 1998 to October 2003, the poverty incidence among the entire Argentine population increased from 26% to 47.8%. The increase of extreme poverty (destitution) was even higher; it passed from 6.9% in October 1998 to 27.7% in October 2003. If the problem is observed by region, the Northeast presents the highest poverty and extreme poverty rates, and the provinces of Corrientes and Chaco have the highest indices of all country (68.7% and 65.5%, respectively). Seventeen of the 24 Argentine provinces have higher poverty rates than the national rate. Due to the direct relation that exists between those circumstances and the health of the population, the threat to the sanitary status of the Argentines is definitive (PAHO Basic Health Indicator Data Base).
The national statistics agency (INDEC) had a major credibility crisis due to Nestor Kirchner’s (last President between 2003 and 2007) intervention. Now INDEC’s indexes are not reliable. Therefore, private consults have provided more reliable statistics. For instance, SEL consultant affirmed that poverty in 2007 affected 32,3% of the urban population. This means that 11.5 million were poor (some may argue that is probably higher, even 20 million, that is, 50% of the total population), and within that population 3.9 million were extremely poor. In the Great Buenos Aires Area numbers were similar (31.2% of poverty and 9.7% of extreme poverty). The main differences were between the city of Buenos Aires (13.9% of poverty and 3.1% of extreme poverty) and the areas surrounding the Federal District (36.8% of poverty and 11.8% of extreme poverty). In some provinces in the Northeast or Northwest poverty went up to 70% (SEL 2009). Just as a mere comparison, we could contrast Argentina and Canada in regards to distribution of incomes (see table 1). In Argentina, the lowest 40% of the population has access only to 11% of the national wealth, whereas the highest 20% of the population owns 55%. This level of inequality and the dimension of the gap situate Argentina in a completely different social scenario in comparison to countries such as Canada.
Table 1: Family Distribution of Incomes according to Lowest and Highest Social Groups
Family distribution of Incomes (%) 1995-2005*, 40% lowest
Family Distribution of Incomes (%) 1995-2005*, 20% highest
Source: UNICEF 2009.
However, there are signs of improvement in the last 3 years. The Human Development Index of the UNDP shows that Argentina improved 4 places from 2005 to 2010, and now Argentina is in the 46 place among the nations. And when we adjust the HDI for inequality Argentina is on the 55 place. Since November 2009 the government has implented the Universal Provision for Child which currently is aproximately 55 u$d per month. Only with this political decision total poverty was reduced from 26% to 22% and the gap between the richest and poorest that in 2001 was in 39 times went to 24 times. So there are social and economical changes in a good direction but still the richest are even richer.In Argentina, 60% of the population under the age 14 are poor, and 25 children under the age of 1 die per day from hunger and its consequences.[i] Argentina has an infant mortality rate (under 1) of 15 every 1,000 babies born alive, whereas Canada has 5 every 1,000 babies born alive, and a country like Cuba has 5 every 1,000 babies born alive as well. In the case of under-5 mortality rate the numbers stay almost the same (see table 2).
Table 2: Under-5 and Under-1 Mortality Rate Comparison Among Argentina, Canada and Cuba (2007)
Under-5 mortality rate, 2007
Infant mortality rate (under 1), 2007
Source: UNICEF 2009.
The medical system is overexploited and always close to collapsing. In 2001, the total health expenditure per capita in Argentina was Intl$1,130 corresponding to the highest amount in the region. This health expenditure compares with other South American countries as follows: Uruguay $971, Colombia $356, Peru $231, and Ecuador and Bolivia $177 (both countries shows the lowest figure in the region).
Total health expenditure in Argentina represents 9.5 % of GDP. This figure compares with 10.9% in Uruguay (the highest percentage in the region), 7.0 % in Chile, 5.5% in Colombia, 4.7% in Peru, and 4.5% in Ecuador (the lowest percentage in the region).
Even though official data is currently unavailable, it is supposed that the devaluation of Argentina’s currency in 2001, and especially the political manipulation after 2007 of the special agency that keeps track of the economic indexes (INDEC), have significantly distorted these figures.
The health care system in Argentina is organized around three main providers:
* The public sector: which supplies free clinical care for hospital inpatients and outpatients. A charge is made to outpatients for medicines but if the patient does not have money he or she can have it for free. There is also a national drug bank for specific conditions which is free (oncological, HIV, transplanted people). This sector used to cover about 50% of the population but it seems that now this percentage has increased drastically. The public system serves those not covered by social plans or the private sector. Argentina’s public system shows serious structural decline and administrative ineptitude. The major portion of the public system is under the provincial level. There's a constant struggle for resoures and labor disputes. Staff and publics need more investment in the health system for better infraestructure, equipments, wages, and supplies and so very often there are public manifestations and/or staff strikes. Often Municipalities are in charge of the primary level of care. Since the major 2001 socio-economic and political crisis more and more people rely in public services.
* Social plans (“obras sociales” in Spanish) (around 300 in number): administered by trade unions but now “flexible” to service any client that wants to join it. Employers and employees each pay a fixed fee. The social plan covers the cost of medical care and medicines in varying proportions; the patient pays differences between the fixed fee and the actual cost of treatment. The top 30 Obras Socials hold 73% of the beneficiaries. In the past, these plans have usually covered around 40-45% of the population, although the percentage has recently dropped sharply due to growing unemployment and under the table working conditions, with more and more people having the public sector as the only source of health provision.
* The private sector: where patients meet the total cost of their medical care; this sector covers around 5-10% of the population. The main characteristic of this sector is its diversification and fragmentation; there are many kinds of facilities but just a few powerful networks. There are over 200 organizations, which covers approximately 2 million Argentines. These three sectors very often overlap. Hence it is hard to calculate the degree to which beneficiaries are dependent on the public and/or private sectors. What is clear is that de-regularization of the health care system helped to develop powerful private companies that are taking bigger portions of the market.
However, these percentages vary according to the regions; in the poorest provinces more than 75% of the population can only access the public sector, and those public hospitals are usually badly maintained. Many provinces send their patients to the national hospitals of high complexity, which are mainly located in the City of Buenos Aires. Although these provinces cover the costs of these patients, this situation creates a bottleneck at the high complex hospital in Buenos Aires. Even patients from the bordering countries such as Paraguay and Bolivia often use these services. Each of the three sectors has their own organization of health care provision. Public sector has institutions at the national, provincial and municipality levels, and according to primary, secondary, and terciary care. Social plans by trade unions have their own hospitals and clinics. Private sector also has its own private clinics and hospitals. The county and national hospitals in the city of Buenos Aires attract many patients from the surrounding greater Buenos Aires area (1/3 of the whole Argentine population lives in this area). But the current political situation in the city of Buenos Aires, with a right-wing government pro-market, and pro-“efficient spending” is creating a major crisis at the 15 county hospitals. And, on top of that, the lack of good services at the Province of Buenos Aires creates a bottleneck in both the few good public hospitals in the Province of Buenos Aires and the many good hospitals in the City of Buenos Aires. Professionals tend to work in the three sectors; usually if they are staff workers at the public institutions they work in the morning until 2 pm and then they work in the private sector or in their own private offices.
In terms of significant figures, the health care system in Argentina has more physicians (150,000) than nurses (85,000) and there are also more medical specialists than general practitioners or family doctors. It has also reduced the infant mortality rate (per 1000 live births) from 24 in 1990 to 14 in 2006[iii].
According to Regazzoni (2008), the Argentine health care system is strongly inefficient; he says “The system in the current situation ruin the lives of many. And the Argentine health has no cure if deep changes are not made in its system” (2008: 102, my translation). Regazzoni finds that the types of prevailing illnesses in Argentina are heart diseases, stroke, maternal mortality, tumors, respiratory diseases, car accidents, and infections like diarrhea and hepatitis; these conditions are caused by poverty, working conditions (or unemployment), education, infrastructure, and eating habits. He also says that half of the population does not have any medical coverage, therefore, either they use public hospitals or they pay from their own money for medical services, and more importantly, 45% of all mortality rates are related to poverty, maternal health and pregnancy. But the health problem in Argentina has one of its epicenters in the Province of Buenos Aires where one of three Argentines lives, particularly in the Great Buenos Aires Area that surrounds the city of Buenos Aires (the Northeast and Northwest of Argentina have also extremely high rates of poverty and bad health quality). In this area the trend is that the majority are poor, with lower levels of education, higher levels of unemployment or working under the table, and with lack of social benefits. The Province of Buenos Aires is short of beds for hospitalization, and the quality of its hospitals are generally bad, so inhabitants of the province go to the City of Buenos Aires where the quality is better and this creates a tremendous pressure on the health care system. When facing a health problem, people have three basic options: do nothing, go to the collapsed public system, or pay from their own pocket. Half of the health expenditure in Argentina comes from the private sector, that is, it comes directly from the citizens in context of extreme poverty and unemployment. Therefore, the wealthier the patient the better the quality of health service received; and this is a crucial part of the social inequalities. Regazzoni says, “Each time that the poor has to collect money among family members, friends, and neighbors for buying a medicine or conducting a test, in this same measure society would fail to redistribute its resources. In our country this failure is no less than 50%” (2008: 122, my translation). Half of the children under the age 4 in the Province of Buenos Aires do not have any medical coverage. This is connected with the current situation in the Children’s Hospital in which this project will be conducted, because 1 out of 2 child that comes to the hospital is from the Great Buenos Aires area where children are living in extreme poverty conditions.
Current Palliative Care provision in Argentina
In the beginning, professionals working on Oncology or pain control started to study palliative care and to develop teams of Palliative Care within their medical institutions. From three or four Palliative Care teams at the beginning of the 1990s, there are 14 palliative care services[iv] and more than 80 teams throughout the country today; 11 of them working in pediatric palliative care. Most of these services are hospital based although a small number of the more developed services also provide home care. In Argentina there is a gradual development of health policies promoting and establishing Palliative Care services within the three main providers, especially official recognition at the public hospitals of not only staff palliative professionals (doctors, nurses, psychologists, social workers) but also the need of developing residencies on Palliative Care in order to secure the creation of more human resources specialized in Palliative Care. One of the main obstacles that Palliative professionals confront is the low availability and the high cost of analgesics, and they are struggling for the provision and universal access of opioids for patients experiencing acute and chronic pain and suffering, especially patients experiencing life-threatening conditions and on terminal phase.
In spite of all these teams in the country, the famous English Palliative specialist (with close ties to Argentine Palliatives) Dr Robert Twycross from the University of Oxford, after visiting many of the Palliative Care teams throughout the country, says “The Palliative Medicine in Argentina is fragmented, and possess limited resources, besides the fact that society ignores its right to receive it through health programs”[v]. In the same token, Dr De Simone from the Palliative Care team at the Hospital Udaondo adds, “Palliative Care are currently included in the Mandatory Medical Program of the National Ministry of Health, but the program was drastically cut and Palliative Care is yet unavailable for the majority of the population”[vi]. Therefore, Palliative Care in Argentina still needs to confront many challenges in a general context of perceived crisis.
[ii] http://www.cbsnews.com/stories/2009/06/26/ap/latinamerica/main5117624.shtml; accessed on July 2009.
[iii] http://www.eolc-observatory.net/global_analysis/argentina_health_care.htm; accessed on July 2009.
[iv] They are called as “services” although only few of them are officially recognized as services with its own space and human resources.
jueves, 4 de noviembre de 2010
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.
miércoles, 3 de noviembre de 2010
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)
martes, 2 de noviembre de 2010
Here is my first reflection on the space of the children's hospital where I conducted my fieldwork.
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.
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.
domingo, 17 de octubre de 2010
So here I am, re-reading MBL and finding similarities and differences. And here is something I've just written on my review:
Bluebong-Langner, Myra. 1989. Worlds of Dying Children and Their Well Siblings. Death Studies, 13(1): 1-16.
MBL starts this paper talking about the feelings the rest of the family members have, especially the well siblings, in relation to the terminally ill children. Of course, they “do not look forward to permanent disability or to death” (1). Therefore, she says, “So begins for the family, for each and every member of that family, a cycle of feelings that includes anxiety, guilt, neglect, denial, anger, and depression” (1). And, this is precisely what I want to look at: How are these feelings produced? What lies behind and below these feelings? How does the end of children’s lives affect everyone not only in terms of feelings and rational choices/thinking but also in terms of physical and corporeal affect amongst bodies? Whit this I am not so interested in the codification of these “feelings” in “anxiety”, “guilt”, “neglect”, etc. but in the actions these affects propel.
jueves, 23 de septiembre de 2010
BTW, on a different note, I have just checked that my MA thesis (which is linked on the top right of this blog) has been viewed and donwloaded by many people and I am happy with it. I hope it helps others, and if you were one of those that read it you can send me an email with your comms to my email (rafagua(at)gmail.com).
Below are the statistics from the UBC page....
|When medicine cannot cure : dying children, palliative care, and the production of companionship|
|United States of America||196|