The Dark Side of Hope in Health Care

The Dark Side of Hope in Health Care

Patrick Brown

A biomedical scientist sits at a desk writing a grant application for money which would further her research into enzymes associated with Alzheimer’s disease. A cancer doctor explains the likelihood that he can operate on the tumour, which threatens of life of his patient. Two parents board a plane to India in order to access novel stem cell therapy for their child, which is not available in their home country. These three experiences are quite different from one another, but share at least one important feature in common – they are each profoundly shaped by hope.

Hope is a ubiquitous feature of everyday life. We often use words such as hope or hoping to refer to a way of approaching the future in terms of what could happen and what we would like to happen. As a positive orientation to an unknowable future hopes shape our actions, our emotions and our social relations in myriad ways but we seldom reflect on what it really means to hope. The popular lexicon is replete with adages about hope – as it springs eternal, or as it emerges out of suffering and endurance – yet until recently social scientists had spent little time studying hope. Hope was, it seemed, seen as a lofty notion better left to the theologians and philosophers. But recent years have witnessed an emerging body of research which sheds a lot of light on hope, what it involves, what it feels like and – perhaps less intuitively – why it is dangerous. Many important insights have come out of anthropological and sociological studies of hope in contexts of illness and health care, where nature of hoping may be more extreme (life and death) and therefore the ways in which hope ‘works’ becomes more explicit.

In shaping how we think about our future, hoping has a big impact on our experiences in the present. In settings which would otherwise be experienced as profoundly negative and lost, hoping that things may be different in the future gives light, and is a powerful means of coping. Sabine de Graaf and I have written about Sabine’s in-depth interviews with advanced cancer patients. These patients’ involvement in drugs trials opened up horizons of possibilities that were positively different to their (often) limited prognoses. The uncertainty of the future, combined with the possibility that one of these drugs could be a new ‘breakthrough’, enabled these patients to rework and reimagine their futures; often a powerful tool for keeping going and getting through each day.

But our research shows that these patients’ experiences of hope were not entirely positive. In many instances these patients were living with profound tensions between what they hoped for and what they saw as ‘likely’. These tensions made hoping an uncomfortable and awkward process. Living with these contradictions, as I have found in other research, which considered hope in contexts of psychosis, would seem to be part of what it means to hope. So while hope can be a potent tool in coping with vulnerability, there is always something about hoping which makes us vulnerable in turn. Hopes – by their nature fragile and contrary – can moreover be undermined. Sometimes this may follow from a deliberative communication by a doctor or other healthcare professional, for example following test results. At other times however, careless words by a professional can have devastating effects of which the clinician remains unaware. Whether this management of hope is deliberate or not, these interactions can leave the patient profoundly shaken, with their lives and identities falling to pieces.

Hope, in this light, is immensely helpful but awkward and prone to unravelling. Yet there are further negative consequences associated with hope. Hoping helps the hoper keep going amid very difficult circumstances, but this endurance may also lead to passivity and acquiescence as opposed to resistance and a challenging of the status quo. This points us towards the possibility that hope can be used as a tool of power, control or even manipulation. In a similar way that the rhetoric of a hopeful and different future can be used by politicians to win votes and push their own agenda, healthcare professionals may (wittingly or unwittingly) use hope for their own ends.

Sociologists became aware of this dark side of hope as early as the 1970s. In a 1978 book which was so controversial that, shortly after publication, all copies were recalled and pulped following a court injunction, Abraam de Swaan (a sociologist) and Andries van Dantzig (a psychiatrist) developed a highly critical analysis of hope. In the cancer hospital at the heart of the study – the same institution which took out the injunction on the book – the authors argued that a ‘system of hope’ was at work from which many people benefitted; especially the most powerful. Senior clinicians gained power and prestige by providing hopes of cure and better health, while patients (at least in the short-term) also benefitted from such prospects. Meanwhile, when bad news had to be given, it was the lower level doctors and nurses who were called on to dash patients’ hopes, insulating the senior doctors from the messy fall out when all hope was exhausted.

Mary-Jo DelVecchio Goods work echoed this kind of analysis on the other side of the Atlantic in the 1990s. Her work describes a peculiar ‘culture of hope’ in US cancer care by which huge amounts of research money and pharmaceutical company profits were bound up with an overtly hopeful approach to cancer. As with van Dantzig and de Swaan’s analyses, the most powerful interests – senior researchers and big pharmaceutical companies – were best placed to benefit from these wider cultural tendencies, while patients were also drawn in through what Good refers to as the ‘biotechnical embrace’. Through using this latter concept Good suggests that vulnerable patients’ need to cling to hope means they are bound by necessity to follow the treatment paths offered to them. ‘Choices’ they make therefore are not really choices at all. Their vulnerability, and a related will to prevent their identities from being shattered by the spectre of death, obliges patients to pursue treatment.

Our research further suggests that even in treatment contexts where trust in particular doctors has been lost, some patients may feel that they have little choice but to keep going and keep quiet – due to their understanding that they had to maintain hope and that the doctor held the key to these hopes. Whether this was in treatment decisions or access to trials of new (potential ‘breakthrough’) drugs, it emerged that hope had implicitly become a tool of power. Hope (in medicines and outcomes) and trust (in individual experts) had become intertwined with one another, with one leading to and protecting the other – despite some distinctly negative experiences. Trust in doctors thus leads patients down treatment pathways that point in hopeful directions. The need to stay on these pathways insulates trust in the doctor and vice versa.

But hope is not only dangerous for the patients in these settings. Healthcare professionals can also be harmed by hope. As I noted already, this may be a result of the power dynamics which, as de Swaan and van Dantzig observed, leaves the lower level professionals with the most emotionally difficult and exhausting work. Moreover whole teams of professionals working with vulnerable patients may, with the very best of enthusiastic intentions, come to approach their work with the naïve idea that almost everyone can be made better. In care contexts where chronic and debilitating conditions are very difficult to treat, this can lead professionals towards problems with burnout through over work and disappointment.

So how are we to handle hope without getting harmed by it? The obvious answer would that we manage hope more appropriately – that by ensuring people hope in a realistic way, we can better deal with moments where hopes are too high or where there is no hope. The question remains though – who decides what is a ‘realistic’ hope? Here we come up against the difficult conundrum of which hopes are ‘normal’ and which not? There is, furthermore, a utopian quality of hope which, (as with More’s pun) combines notions of a good place with a non-existent place. We must be careful that the power of large institutions does not allow them to delineate what is reasonable (and therefore unreasonable) to hope for. Instead it would seem that by encouraging an awareness of what hope does to people, and how hopes are managed within healthcare settings – wittingly and unwittingly – we can equip both professionals and patients to grasp their hopes in a more enlightened manner. This may not necessarily ease the tensions that are inherent to hoping but it may well help address some of the other negative features of hope which I have reflected upon in this piece. To this end, sociological and anthropological studies of hope amid health care while not having all the answers are useful in equipping us for a more critical dialogue around social processes of hoping.

 

Patrick Brown is an associate professor in the Department of Sociology at the University of Amsterdam. He is particularly interested in the processes through which people experience and handle uncertainty – such as risk, trust and hope – and how these impact on patients, professionals and others within healthcare settings.

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