The darker sides of care

Imagine a hospital ward. White walls, grey floors, long corridors. Orange light of the setting sun filters through half-open curtains, while the night staff get their reports. Updates. Behind one of the many doors, in her bed, lies Agatha. She is only fifty-seven years old but ended up falling ill in an abdominal cancer. Since her arrival in the hospital, she has been in a world of pain, more so from the surgery than the cancer. She has felt tired as never before. Being a patient is new to her, and so are hospitals. Uncanny. She appreciated that one nurse’s attention earlier this afternoon. A few kind words of hope, a smile. She can’t remember his name. Now, hours later, the pain is worse, and she feels terribly nauseous.

Suffering and care are deeply intertwined. In situations of pain, illness, and hopelessness, care can function as relief and connection – taking weight of one’s shoulders, taking back what is lost, putting feelings into words and words into feelings. Care can be the beacon of light in one’s darkness, a shimmering candle in what Sontag (1978) called the “night side of life”. Illness. Care, in all its forms, are ways of crafting more “bearable ways of living” (Mol, 2008), whether this means caring for oneself, caring for (non-human) others, or being cared for by others. But how – in the midst of all this warmth and strength – can we make sense of a darker side of care, situations where care becomes careless and “uncaring” (Halldorsdottir, 1996)? What happens when care enhances suffering and makes life less bearable? And how can we understand this when this happens in institutions designed to alleviate suffering? The darker sides of care present themselves as an ironic tragedy, as oxymoronic practices that seems to defy common sense. After all, care is supposed to be something good, right?

Her nauseousness gets worse because of the smell of the food she had spilled on her nightstand and on her bed, earlier this afternoon. Potatoes, peas, gravy. Some, well lots of the gravy had dripped down her chin, onto her bed and pyjamas. She had tried to wipe away some of it with her napkin, instead spreading it out, making a large sticky stain on her pyjamas. Unable to change herself. Now night nurse Gina arrives for a final round of medication before it’s time to sleep. Agatha says she feels nauseous and mentions the stink of gravy from her bed and pyjamas. Gina tries to comfort Agatha, hands out her medication and wipes clean the nightstand. She promises to get back to Agatha to change her pyjamas after the round. Then, a mess. Gina needs to assist her colleagues with an acute situation in a room across the corridor. Her round, another emergency, her round. No time to take a break, take a drink, take a pee. Stressed, tired. Three hours later, Gina gets a shock and remembers Agatha’s pyjamas. Stinky. Gravy.

Stories about the darker sides of care tend to find themselves on two extremes of a spectrum, similar to many other “dark” phenomena. On the one hand, these stories only tend to be shared with a few people close by, or even remain untold. Feelings of shame, humiliation, or a loss of dignity may make people hide dehumanizing healthcare experiences (Brüggemann et al., 2012; Wijma et al., 2016). Similarly, care professionals who find themselves contributing to or being part of dehumanizing care practices, unintended or against their will, may conceal this from their colleagues rather than seek collective support (Wijma et al., 2016; Brüggemann et al., 2019). A common example here is the imaginary story about Gina, a nurse ending up in a situation with too many patients to take care of, being forced to neglect the needs of some and prioritize others. Martin el al. capture the essence of this tragedy, stating that “[c]are is a selective mode of attention: it circumscribes and cherishes some things, lives, or phenomena as its objects. In the process, it excludes others” (2015: 627). Gina may conclude she did the right thing, prioritizing where she was needed the most, yet feels miserable observing the consequences of the situation she and her colleagues ended up in; a feeling of moral distress as it is called in the nursing literature (Jameton, 1993).

On the other end of the spectrum, every now and then, the darker sides of care are put in a public spotlight, when “scandals” hit mainstream media. Healthcare scandals may cause public outrage after inquiries expose the lived experiences and consequences of socially unacceptable care practices. Examples of this could be the kind of neglect that Agatha suffered due to understaffed wards. Or the entry point could be Gina’s testimony, her sense of failure, distress, and the risk of potential burnout in the longer run (Fumis et al., 2017). Other examples are the numerous reports during the Covid19 pandemic about healthcare staff’s inhumane physical and emotional working conditions, resulting in inhumane and unsafe care. Even though inquiries usually build on public display of individual testimonies, their focus is oftentimes not on identifying “bad apples”, but rather observing how certain types of healthcare governance or cultures can be a “collective cause of healthcare failures” (Goodwin, 2018: 109). This portrays the darker sides of care not as a result of individual actor’s but rather care cultures’ “selective modes of attention” (Martin et al., 2015).

These stories are important to listen to, as care managers, as scholars, as fellow humans. The darker sides of care incorporate questions of dignity, justice, and accountability (Goodwin, 2018; Pols, 2006), and they are central to practical and theoretical understandings of care. These darker sides of care are not necessarily opposites of care practices or rare anomalies to be dealt with. As Agatha’s and Gina’s situation shows, they are better understood as part of care practices. Messy, by many unwanted, but nevertheless a dimension of care practices that care professionals, care managers, and patients need to make sense of and navigate. I align with Stevenson, who states that “[s]hifting our understanding of care away from its frequent associations with either good intentions, positive outcomes, or sentimental responses to suffering allows us to nuance the discourse on care so that both the ambivalence of our desires and the messiness of our attempts to care can come into view” (2014: 3). So, rather than working from the assumption that care is inherently good, various research fields have crucially made a “dark turn” that has enriched understandings of care, medicine, and patienthood. Work in the medical humanities, nursing, and the critical social sciences have in many ways highlighted how care can be marginalizing (Corley and Goren, 1998), messy (Mol, 2008), ambivalent (Martin et al., 2015), destructive (Varfolomeeva, 2021), oppressive (de La Bellacasa, 2017), signify careless spaces (Parr, 2003), or even potentially cruel (Rhodes et al., 2024),

The next day, Gina is ready for her next night shift. She had some problems falling asleep during the morning – a combination of a much-needed coffee around sunrise and gut feelings of guilt – yet she feels ready for another shift. Besides doing her routine duties, she is eager to talk to Agatha. But she is also dedicated to talk to her team about the “gravy incident”. She feels unsure whether her colleagues would feel the same kind of regret, and there is not much time during the initial report session, but she is going to try. Her intent is not to put blame on anyone, and she knows understaffing cannot be resolved here and now, but she feels that they, as colleagues, would benefit from sharing their concerns and explore potential improvements, even the slightest ones. Much more so than they have done.

In professional practice, contextual reflexivity, as Pols (2006) calls it, may be one way of incorporating the darker sides of care. That is, to craft a space in which care practices can be evaluated “[…] without erasing troublesome situations” and where “[t]he good as well as the more doubtful situations can be analyzed as a consequence of specific patterns of traditions, values, knowledge, and routines used” (Pols, 2006: 427). Such spaces can also provide scholars with opportunities to attend to the darker sides of care (Brüggemann et al., 2019), a kind of “staying with the trouble” (Haraway, 2016). And, thinking of Agatha and Gina, there may be particular ethical reasons, not the least in neoliberal times, to stay with the trouble of institutional geographies (Philo and Parr, 2019).

Imagine a hospital ward. White walls, grey floors, long corridors. The orange light of the setting sun filters through half-open curtains, while the night staff get their reports. Gina takes a deep breath.

Jelmer Brüggemann is Associate Professor at Technology and Social Change, Linköping University. His research is mainly in the field of medical sociology with a focus on complexities and normativities of patienthood and care encounters.

Referenser

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Foto: Vårdbiträde eller undersköterska vid träddunge på Mölndals sjukus (1939-1941) Mölndals stadsmuseum