3 Problems with quantification
One of the main problems with the medicalisation of death and dying is the idea that science has all the answers. Illness and dying carry the same degree of unpredictability and uncertainty as all everyday life events. So when service providers draw on medical knowledge and experience to offer some certainty and in one way to quantify the dying experience, it can be difficult to challenge. Indeed, there is a tension between wanting certainty and hoping for things to be different. Campaigner and mother of three Jane Tomlinson was diagnosed with terminal cancer in 2000 and told she had approximately 12 months to live. However, over the next seven years she completed various marathons and long-distance runs, undertook triathlons and cycled across the USA, until her death in September 2007. Astounding the medical professionals who had delivered the terminal diagnosis, her individual achievements stand as a well-known example of the unpredictability of medical prognosis and the dying period. Another example comes from our researchers’ experience of conducting research on end-of-life care, where only 10% of the people in a study died within the year of the study, despite all being identified as likely to be in their last year of life (Borgstrom, 2014).
In addition, human beings are not machines that respond in predictable, impartial ways to their situation and environment(s), so what of the unquantifiable elements of being human? In particular, what account is taken of the emotional component and how it plays a significant part in the experience of health, illness and dying? When someone is dying, the relationship between the health care professional(s) and the dying person is extremely important, in terms of not only the control of bodily death, but also emotional responses. This is especially the case if the dying person is in a public setting such as a hospital, where extreme emotional displays could be distressing for other patients, visitors and staff. The control of emotion by professionals as part of their role is sometimes called emotional labour, a term first used by Arlie Hochschild (1983) in her study of the way airline crews had to present a pleasant manner to their customers no matter how they felt.
Furthermore, when undertaking emotional labour, not only do professionals need to control their own emotional reactions, they also have to manage other people's, which Hochschild called emotion work. Emotion work has been criticised in professional contexts for controlling the customer/patient/client's visible response to their experience. In the context of this course, the emotion work that is undertaken by medical professionals is an example of the application of medical authority in dying. In the most extreme cases, dying people can be sedated to quieten, even to silence, their strong emotional reactions to dying, such as those described by the sociologist Julia Lawton (2000) in her ethnography of death in a hospice. This upholds one view that death should be a peaceful and controlled event, reminiscent of the concept of the good and ‘tamed’ death.
Taking a more policy-orientated view of quantifying the dying process, however, boundaries for treatment need to be drawn somewhere to ensure that there is equality and efficiency in access to and provision of health care services. When this course was first written in 2008, the problem of limits and cut-off points for treatment has been most commonly seen in discussions about access to drugs, such as the National Institute for Health and Clinical Excellence (2007) guidelines on access to donepezil, galantamine, rivastigmine and memantine for people suffering from moderate Alzheimer's disease. When this course was updated in 2020 during the COVID-19 pandemic, there were public discussions around how clinicians decide who can and will be admitted to intensive care units and a wide-scale engagement to sign DNACPRs. These reflect the medicalised tension of balancing the needs of the individual against the fair distribution of resources to the collective dying community.
This dilemma of the individual versus the collective is reflected in the UK in health institutions, such as hospitals, that have to be overtly accountable to the electorate. Hospices, although usually funded through a combination of the state and charity, also have to be able to provide a fair and equal service to all. This is the case from the ideological basis of the health care setting through to the everyday activity on the ward. When someone is dying, therefore, it can be an extremely challenging act of negotiation between the dying person, the medical professionals, the administrative staff of the facility and the family. Medical intervention can take control away from the dying person and control their dying.