One by One by One
Author: Aaron Berkowitz
This book documents the effort of one physician to make a humanitarian difference to healthcare in a poor country. The author’s deep-seated humanitarian instinct was inspired by the selfless life and works of fellow doctor Paul Farmer and his organisation, Partners in Health. His passion was also buoyed by the impact that humanitarian foundations such as those of Bill Clinton and Bill Gates have made in tackling global healthcare concerns. But in distinct contrast to the dominant practice of providing large scale aid to vast population sizes, the author focused his efforts at a smaller, individual-level scale in Haiti. As reflected by the its title, the book is a forceful advocate of the collective impact of small-scale efforts. At the centre of the book’s narrative is the author’s valiant attempts to arrange treatment in his hospital in Boston for a young Haitian man with a massive brain tumour. The narrative highlights both the logistic challenges and the ethical dilemmas that altruists come up against in the pursuit of their idealistic goals. The book also provides a revealing insight into the troubled history of a rich country which, on one hand, can boast of such epochs as defeating Napoleon’s forces to become ‘the second European colony to declare independence‘, and on the other, a nation that ‘has suffered enslavement, slaughter, military occupation, dictatorships, and resource depletion by foreign powers’ (pages 40-41).
The protagonist at the heart of the book is Janel, the 23-year-old Haitian whose head CT scan revealed the largest brain tumour the author had ever seen – ‘the size of a tennis ball‘. The author encountered Janel whilst doing voluntary medical work in Haiti, and, feeling well-placed to make a difference, he committed himself to help by liaising with neurosurgeons in his hospital, and by raising funds to cover the substantial transportation and healthcare costs. What transpired however was an arduous and anxiety-provoking saga strewn with challenges such as securing a visa for Janel who had no identifying documents such as a passport or birth certificate, the author remarking poignantly that ‘he was so poor he had no proof he existed‘. The author also had to change the minds of the reluctant neurosurgeons in Boston who had advocated palliative care instead of surgery because of Janel’s pathetic social circumstances. Janel’s story however demonstrated that whilst one person may be the primary driver for a humanitarian intervention, a successful outcome relies very much on the collective efforts of countless people, and this was illustrated by the unstinting support the author received from his department chair, Martin Samuels. This, and other support the author got, underlined a key lesson of the book that ‘if we asked the right questions of the right people, we got the answers we were hoping for’ (pages 67, 10, 31).
In depicting Janel’s medical journey, the author provided very helpful and detailed descriptions of the surgeries he underwent. The graphic narrative was also very educational, and this was evident for example when the author described how the neurosurgeon sliced open Janel’s dura mater– the brain’s protective covering – and then exposed his cerebellum – the structure he depicted as just the size of a fist covered by an ‘intricate’ fern-like surface, and containing ‘as many neurons as the whole of the rest of the brain’. The author also explained how the compression of the cerebellum by the tumour brought about Janel’s walking difficulty and tremulousness. Janel’s neurosurgical course turned out to be as tumultuous as the efforts to get him out of Haiti; for example, he required multiple operations to remove all his brain tumour and to relieve the pressure that built up in his head between operations. Furthermore, because his tumour – a pineal parenchyma tumour – was particularly aggressive, Janel’s post-operative journey turned out to be stormy and required radiation therapy, chemotherapy, and rehabilitation (pages 103-122, 177-184, 117, 123-146 and 163-170).
The ethical conundrums that permeate humanitarian work, a phenomenon pertinently illustrated by Janel’s case, formed a central theme of the book. In this regard, the major ethical dilemma the author confronted was how to justify the amount of resources he was willing to expend on saving one person – knowing fully well that this was enough to ‘vaccinate an entire region of Haiti against deadly childhood infections‘. He was also perturbed by the realisation that ‘actions to help individuals’ may ‘create ripple effects that only serve to create new inequities‘. He repeatedly reflected on these moral quandaries, but he philosophically validated his choices as legitimate trade-offs, arguing that as a doctor he should ‘try to help this one patient‘. Whilst he admitted that what he was doing was ‘not sustainable‘, he also reasonably concluded that ‘neither is the alternative‘. Because he reassured himself that ‘a few individuals working together might just be able to make a difference…one by one by one‘, he consistently chose ‘compassion over cost-effectiveness‘. Another ethical difficulty he faced was deciding whether to proceed or pull back from his commitment to help when he discovered that Janel was much worse than he was initially made to believe. He chastised himself that he had ‘gravely misinterpreted everything’; although he was ‘uneasy about the whole thing’, he nevertheless felt morally obliged to stick to his commitment (pages 5, 51-61, 10-13, 236, 320 and 320).
Beside the relatively narrow perspective of providing individual-level humanitarian aid, the book also addressed the larger context of how global health disparities and inequities create and entrench the circumstances that make humanitarian aid necessary in the first place. For example, the author pointed out that there was only one practicing neurologist in Haiti at the time, compared to the more than 100 neurologists working just in his hospital in Boston. He further illustrated the comparative disadvantage of Haiti when he reflected that ‘had Janel been born just a two-hour ride away in the US…he would have never ended up with a tumor so advanced as too require such a complex intervention’. He also highlighted Haiti’s broader health disadvantage when he portrayed Janel’s case as ‘a painful reminder that medicine is powerless when it narrowly focuses on treating a disease, neglecting to address the patient’s social and economic circumstances‘. The author further demonstrated Haiti’s predicament with disheartening life expectancy statistics which show that ‘infants born in Haiti are eight times more likely to die than infants born in the US’, and that the average life expectancy is sixteen years less in Haiti. He therefore asked a deeply moving and fundamental rhetorical question: ‘if every person truly believed that every other person was a person just like them, then how could anybody accept inequity, let alone racism, sexism, classism, and the conflicts that arise as a result of these individual views and societal forces?’ (pages 2, 6, 235, 67, 157 and 170).
In summing up his experience of humanitarian medicine, the author emphasised that ‘helping Janel gave us the chance to try to right one individual wrong, to try to rectify one grave inequity‘. He was rightly ecstatic that ‘Janel had gone from rural Haiti…to a Harvard hospital for care by a renowned neurosurgeon by way of an air ambulance’, and he advocated for these types of feats which can be achieved by ‘working together…one patient at a time‘. The book underlined the key lesson that humanitarian medicine doesn’t have to be done at a large scale, but that it may be achieved by tackling problems case by case. The author’s experience also showed that humanitarian objectives do not have to be the ‘high adrenaline big saves‘ that are seen in trauma surgery or emergency medicine, but they may be more subtle in specialties such as neurology where ‘big saves are generally few and far between‘ (pages 170, 88 and 7).
This is a truly human story in which the author narrates his single-minded determination to do the best for the patient in front of him. With great humility, he discussed the difficult ethical challenges that came with all the decisions he took, and the reality that what he achieved required the assistance of many. Whilst the story of Janel was perhaps overdrawn, and at times over-dramatised, this did not in any way lessen the significance of the feat, the purity of intention, or the lesson of what one person can achieve when dedicated to a worthy cause, no matter how small it might seem on the larger scheme of things. There was some stereotyping of Haitian behaviours and attitudes and this stood out in the context of the book’s stated caution against reinforcing stereotypes. These minor shortcomings aside, this book is a truly inspiring testimony to what one person can achieve in the face of what appear to be unsurmountable challenges.
This book provides an alternative, and perhaps more easily achievable, concept of humanitarian medicine – one carried out at the individual level and therefore one that requires more compassion and personal commitment. The book’s narrative also projects the highly valued qualities of humility and honest reflection which underpin humane medicine. This refreshing perspective of empathic medicine balanced with realism greatly enhanced the book’s contents. The book excellently conveys the worthy subject of humanitarian medicine and I recommend it to all doctors.
Publisher, Place, Year: HarperOne, New York, 2020
Number of chapters: 22
Number of pages: 340
Star rating: 4