Just a few months after I started working as a doctor, I had a sudden realisation that I was in danger of becoming someone I was not proud of becoming. During early morning rounds, a patient was about to be discharged home days after major cancer curing surgery. He profusely thanked the team acknowledging all of us in his medical team by name. Instead of recognising this as a moment of connection, I walked away. My mind was preoccupied with worry on all the other patients I needed to round on. Back then almost two years ago, I did not know what to do with the shame I felt.
Was there an alternative where the care in healthcare referred to the human connection, rather than just the provision of medical services? After my visit to the Maggie’s centre in Oxford, I was convinced it was possible. Maggie’s is a UK-based charity organisation which offers practical, emotional and social support to people with cancer and their carers through centres that are usually next to the oncology department. Anyone can walk in at any time to a centre in the day and speak to an expert – and all for free. Maggie’s defies the often-cited iron triangle in healthcare, where one must choose between quality, waiting times and cost. While most of discussion of dehumanisation in healthcare focuses on its structural causes, I was also interested in studying the contemporary culture that enabled these norms of dehumanisation.
In my thesis for my master’s in science in medical anthropology, I sought to ask how Maggie’s was able to build and maintain a culture of care even as the organisation scaled. Since the opening of the first centre in Edinburgh in 1996, there are now 26 centres in the UK and four internationally. I did ethnographic research and interviewed staff members at one of the London centres and in Hong Kong, the first centre to be established outside of the UK.
Culture is not a given but as a result of a process of becoming, Pierre Bourdieu the French sociologist argues. With Maggie’s, I noticed that the culture of care was constructed in two key ways. First, Maggie was known to be an organisation that provided care and consequently attracted existing healthcare workers who wanted to care. Second, Maggie’s cared for carers too, extending the same caring quality that they provided to patients to the healthcare workers too. Centre heads I interviewed recognised that the care healthcare workers provided did not come from a bottomless well but required filling the capacity to care. In this, the organisation aligned the internal disposition to care of healthcare workers with the external caring environment they worked in.
Even though Maggie’s is a growing organisation with hundreds of employees, the organisation retains a flat organisational structure. In practice there are only three layers of supervision, and there are no formal representations of this structure. Rather than a hierarchy, employees are primarily viewed through the lens of a relationship. Hence, rather than in a line of command, an employee is seen as an individual with unique capabilities and nurtured as such. Responsibilities attached to titles are seen in an individual context and can be negotiated.
The charity’s long term goal is for a centre to be eventually established in every NHS trust. When the first Maggie’s centre was founded in Edinburgh in 1996, the centre faced hostility from oncologists. At that point in time, oncologists perceived Maggie’s as a place where patients visited to complain about hospital care. Instead of trying to resist, Maggie’s instead built trust with oncologists by showing how both Maggie’s and Oncologists were working towards a common goal. Working within the constraints of limited consultation time with patients, Maggie’s instead became a one-stop centre where oncologists could refer patients to visit to answer extended questions so patients would not feel abandoned. With this, oncologists turned from critics to loudest supporters. Ever since then, Maggie’s has overwhelming demand to establish centres across the UK and the world.
Care is complementary to, not in opposition to, cure. Just as how oncologists had initially understood Maggie’s, my motivation to study Maggie’s arose from the care it stands for in comparison to the “traditional” clinical environment. The understanding of Maggie’s – by potential employees who are drawn to work in Maggie’s, by patients who seek care at its centres – is rooted by its absence in the hospital. While the lens that Maggie’s is understood by external onlookers is through centre versus hospital, internally Maggie’s does not draw a line between care and cure.
Anthropological research has tended to assume that there are differences in the way care is understood and manifested in different cultures. When I started my research, I accepted this at surface level too. The question I sought to answer was how care translated across different cultural settings. Embedded within this question was the assumption of the lens of West and East, with the London centre being representative of the “West” and Hong Kong of the “East”. In accepting this assumption, I fell into yet another dichotomy.
‘You know Scots would say they're not very good at talking about their feelings as we imagine that the folks in Tokyo aren't. Actually cancer treatment is pretty consistent across the world’ one of my interviewees in London stated. In contrast, some of my interviewees in Hong Kong offered differences without prompting. For instance, the Maggie’s in Hong Kong had a round table, which seemed to suggest the importance of family and unity, or had more group activities, which suggested collectivism as we understood “Eastern” culture.
I was uncomfortable with this understanding of cultural differences which seemed to be overly simplistic. As argued by Edward Said in his book Orientalism, the oppositional binary between West and the “Oriental” was necessary to maintain a racial hierarchy to justify violence by colonialism. For instance, if “Oriental” culture was seen as collectivist, colonialists could justify forceful governance by viewing the “Oriental” as pliant. Thus, an individual from an “Eastern” culture was no longer an individual but homogenised as part of a whole. In Said’s argument, this representation of the East by the West is such that the Oriental could not represent themselves but needed to be represented; the Oriental could be known without even being spoken to. But my ethnography seemed to suggest that someone who would be considered Oriental had internalised these orientalised perspectives of themselves.
In fact, cultural theorists have argued that care has precisely been used as a justification for colonialism. Reading more about the history of the charity, I learn that Maggie Keswick-Jencks, who founded the charity and whom the charity is named after, was the daughter of the Taipans (foreign-born senior business executive) of Jardine Matheson & Company, one of the most powerful conglomerates in Hong Kong. Jardine is one of the original Hong Kong trading houses that occupied the vacuum once the British East India Company was on the decline in the early 1800s. The company was one of the biggest smugglers of Opium into China and had in fact actively lobbied for the British army to initiate the Opium war. While knowing this history certainly did not change the admiration I had for the charity, it drew my attention to the palimpsest of colonialism present today. The relationship that Maggie’s as an organisation has with its employees and patients I realised could be described as decolonial by subverting traditional norms of hierarchy associated with or originating from colonial rule.
Before I left for Oxford, I was asked at the airport by a friend if I felt conflicted about being a Rhodes Scholar. The scholarship I hold ties me to Cecil Rhodes who believed in white supremacy and, some argue, was the architect of racial apartheid. That thought lingered for much of my first year as a scholar in residence, but having this opportunity to think about the way Maggie’s works has given fresh perspective. Maggie’s showed me that productive change was possible by engaging with norms of engagement where power between individual and organisation was negotiated.
When I was working as a doctor, I could choose to reinscribe relations of power that are familiar. Maggie’s did not simply do the work of care but interrogated the very way they cared.
History is tainting, yet as Maggie’s showed me, it is not binding.
I thank the Murray Speight Research Fund, the Rhodes Trust for their generous support of this fieldwork.