The Spirit Catches You and You Fall Down
Author: Anne Fadiman
This book is a deeply moving illness narrative that reconstructs the architecture of a medical tragedy that unfolded when two cultures became mired in conflict and discord. The book methodically and meticulously pieced together what transpired when a Hmong family, refugees from Laos, came up against a US healthcare system completely at odds with its values. At the heart of the tragedy are Lees who were ‘among the 150,000 Hmong who have fled Laos since their country fell to communist forces in 1975′. Hampered by language and communication barriers, the Lees had disagreed with their doctors on what treatment was best for their youngest child, a dispute that set the scene for the gripping but tragic clash of two healthcare systems. And as she exhaustively reenacted the illness and its complications, the author also provided an enlightening anthropological exploration of the rich and colourful Hmong heritage with its deep-rooted traditional practices (page 5).
In painstaking detail, the book graphically portrayed the severe and drug-resistant epilepsy which had plagued Lia, the child at the centre of the saga, and her parents fourteenth child, from the age of three months. The author depicted her truly distressing seizures which characteristically consisted of eye rolling, staring spells, blackouts, grand mal episodes, and status epilepticus. With ‘more than a hundred outpatient visits’ within a span of four years, Lia had been admitted to hospital countless times, at one time ‘on the verge of death‘. It was unfortunately on one of these admissions that she developed septic shock and disseminated intravascular coagulation, and became ‘effectively brain dead‘. Discharged to the care of her parents ‘quadriplegic, spastic, incontinent, and incapable of purposeful movement’, her brain damage paradoxically curing her epilepsy, the book sensitively chronicled the committed way her family cared for her and defied the prediction of her doctors by keeping her alive. The dedication by which the family tended to Lia was such that the author said they maintained her as ‘a radiantly vital child’, endowed her with a ‘regal‘ position in the family, and made her ‘a central stillness around which the life of the family condensed‘ (pages 20, 38-39, 90, 141-150 and 210-216).
The defining theme of the book is the clash of cultures that overshadowed Lia’s medical treatment, a direct fallout of the Hmong’s mistrust of Western medicine generally, and of epilepsy care specifically. And central to this misunderstanding was the Hmong’s positive perspective of epilepsy as a blessing rather than as a medical problem, convinced that anyone with epilepsy was ‘a person of high moral character‘ and ‘a person of consequence‘. This was the reason the author said Lia’s parents viewed her illness with a ‘mixture of concern and pride‘, and this was why they were ‘ambivalent about suppressing the symptoms’. The book also explored the wider healthcare beliefs of the Hmong which perpetuated the conflict with their doctors, and these included their conviction that ‘repeated blood sampling..may be fatal’ because ‘the body contains a finite amount‘; that ‘anesthesia may lead to illness or death’ because ‘when people are unconscious, their souls are at large’; that cutting or disfiguring the body may leave it ‘in a condition of perpetual imbalance‘; and that autopsies, with their attendant loss of vital organs, restrict souls from being ‘reborn into new bodies’ after death. Further points of contention for Lia’s parents which the author reviewed were their loss of autonomy over her care and safety whenever she was admitted to hospital; her frequently changing drug treatment regimes; and ‘their doubts about the efficacy of Western medical techniques’ (pages 21-23, 29, 33 and 43-48).
Whilst the book tried not to attribute blame for the cross-cultural conflict that compromised Lia’s care, the author nevertheless highlighted the failure of her orthodox caregivers to make efforts to communicate with her parents. This was why, for example, her doctors never realised that Lia’s family attributed her deterioration to the spinal tap she underwent, or that they did not understand why she remained comatose even after receiving extensive treatments. Further illustrating the consequences of the poor communication, the author pointed out that the doctors had no way of telling Lia’s parent’s their diagnosis, and Lia’s parents could not explain to the doctors that they thought she was the victim of ‘soul loss‘. The outcome, the author remarked, was that ‘both sides were wounded but neither side seemed to know what had hit it or how to avoid another crash‘. The author described how the conflict between the two sides came to a head when her doctors arranged to have Lia ‘removed from the custody of her parents’, a situation that further entrenched the view of the family that ‘doctors were not to be trusted and that they were in league with other coercive authorities‘ (pages viii, 28 and 148-150).
In exploring the root causes of the dispute between the two sides, the author painstakingly identified the many ways by which the Health Centre created and perpetuated the misunderstanding with Lia’s parents. Remarking that ‘there are so many ways to err‘, the author pointed out such shortcomings of the Health Centre as its failure ‘to work within the traditional Hmong hierarchy‘; its tendency to act like an authority figure over the family; and its absence of a budget for interpreters. Most striking however was the lack of any ‘instruction in cross-cultural medicine‘ for the staff, the author pointing out that none of Lia’s extensive health records made any reference to the family’s ‘perception of their daughter’s illness’; this, she stressed, was one of the fundamental questions of cross-cultural medicine which was ‘designed to elicit a patient’s “explanatory model” of their illness’. The author however made it clear that the clash of cultures did not reflect the diligent care and attention Lia received from the Health Centre, her doctors going to extreme measures on her behalf, and always having her on their minds. The author was also sympathetic to her medical team who resented the lack of appreciation from Lia’s family for all the effort they put into her care (pages 25, 41-42, 57, 61, 65 and 259-260).
The most impressive feature of the book is undoubtedly the scrupulous anthropological study of Lia’s family and the wider Hmong society. By immersing herself in the history and culture of the Hmong, and getting close enough to the family to be trusted, the author succeeded in extracting a meaningful concept of Hmong life. With a sensitive and considerate approach, the author narrated how she very quickly recognised that Lia’s family was ‘smart, humorous, talkative, and energetic‘, and that this ‘bore little resemblance to the one the doctors had described’. She also discovered that the Hmong ‘had a rich history and complex culture, an efficient social system, and enviable family values‘, and that they were overwhelmed by what they perceived as peculiar American customs steeped in rules and regulations, and symbols that were hard for them to decode. The detailed portrait she painted of the Hmong was of a people who are determined and attached to their culture, and as a people who ‘do not like to take orders,…do not like to lose,…are not intimidated by bring outnumbered,…are capable of getting very angry‘, and ‘are rarely persuaded that the customs of other cultures..are superior‘. The also also noted their egalitarian system, in which there was no class system, and their aversion to authority, with which they fought against occupying Chinese and Vietnamese communist forces (pages 13-17, 97, 121 and 187-190).
With a very disciplined prose and a multifaceted narrative, this book is a brilliant investigation of the cultural dynamics that had hitherto been ignored by healthcare. The detail is exhaustive but relevant, covering all facets of the subject. The lessons cover not just health care attitudes but fundamental family values as epitomised by the Hmong. The description of the Hmong as having a homogenous nature felt very stereotypical and perhaps a generalisation after the fact of their conflict with the American healthcare system. This is however the only criticism of a book that has highlighted such an important dimension to patient care.
With a dispassionate approach, this book unearths the factors at play in this one illustrative case. The author provided a balanced and fair perspective of both sides and, without being judgmental, highlighted the key lessons of the tragic saga. In the process, the book provides healthcare with invaluable insights into the dynamics of cross-cultural medicine. The book’s far-reaching recommendations for avoiding cross-cultural misunderstandings are gems aimed at enhancing the physician’s effectiveness in such circumstances. The book’s thorough and immersive content has much to teach healthcare, and I highly recommend it to all doctors.
Publisher, Place, Year: Farrar, Straus and Giroux, New York, 1997
Number of chapters: 19
Number of pages: 355
Star rating: 5