‘What the medications do is that lovely four-lettered word – hope’: A phenomenological investigation of older people’s lived experiences of medication use following cancer diagnosis

Adam Pattison Rathbone


Cancer has high morbidity and mortality in the United Kingdom (Smittenaar, Petersen, Stewart, &. Moitt, 2016), with breast, prostate, lung and bowel cancer accounting for over half of the malignant cancers in England (Office for National Statistics, 2015). Oral and non-oral pharmaceuticals are key parts of treatment to optimise health outcomes (Claros, Messa, & Garcia-Perdomo, 2019; Puts et al., 2014). Indeed, the emotional, cognitive and physical impact of pharmaceutical use in cancer treatment is well documented (Burbridge et al., 2019; Claros et al., 2019; Ellingson &. Borofka, 2020; Raijmakers et al., 2013). For cancers such as prostate and breast cancer, which largely affect older populations (Cinar &. Tas, 2015), oral anticancer medications (i.e., tablets and capsules, rather than non-oral formulations like infusions and injections) are widely available and thought to improve the likelihood that a patient will use treatment (lacorossi et al., 2018, 2019). Rates of medication use, however, are low, between 14% and 60%, suggesting some people with these cancers do not to use medications as prescribed (Simon, Latreille, Matte, Desjardins, & Bergeron, 2014; Wu et al., 2014). This is particularly problematic for older people with cancer, where the burden of managing medications for existing co-morbidities (Puts et al., 2013, 2014) may contribute to negative experiences of medication use, leading to treatment discontinuation and suboptimal health outcomes. Understanding the phenomenology of cancer medication use, what happens when patients use medications, the work involved and how it feels to use cancer medications may provide insights to support patients to continue treatment.

Reducing the work involved in medication use is thought to improve the likelihood a patient will continue treatment (lacorossi et al., 2018). This includes both the physical work of administration, such as taking medication from the cupboard and swallowing it, as well as the cognitive work of keeping track of medications and monitoring side effects (Kampf, 2010; Twigg, Wolkowitz, Cohen, & Nettleton, 2011). Patients are thought to be motivated to complete the work involved in medication use when they hope that their medications are special (Cohen, McCubbin, Collin, &. Perodeau, 2001; Eliott & Olver, 2002). Medications are thought to take on special meanings due to interactions with healthcare professionals, whose professional and authoritative status may be transferred to (non-oral) pharmaceuticals as they are administered following diagnosis (Cohen et al., 2001). It has been suggested, however, that the growing predominance of self-administered, oral medications for the treatment of cancers that largely impact older people - as opposed to infusions or injections administered by health professionals - might make these pharmaceuticals less special (Wood, 2012). Exploring experiences of using medications may help to expand our understanding of treatment continuation (and therefore discontinuation) in older people with cancer.

Merleau-Ponty (1982) theorised that human experience can be ‘prereflec-tive’ or ‘perceptive’. Prereflective experiences are intuitive or natural responses based on expectations. For example, a cancer diagnosis might induce fear so that a person’s first inclination is to take medication provided as prescribed. This response may be modified over time as a result of people’s ‘perceptive’ experiences - moments of physical awareness where information is drawn from the environment to understand the situation and create a response. Nascimento et al. (2017) suggested medication use was a ‘perceptive’ experience, rather than a ‘prereflective’ response, as people become physically aware of the effects (and side effects) of medication use and draw on information around them to assess the risks and benefits of treatment. For older people with cancer, however, there is little empirical evidence to illuminate whether medication use (rather than discontinuation or non-use) is due to a ‘prereflective’ response or the ‘perceptive’ experience of using medications. Exploring the lived experiences of older people using medications following a cancer diagnosis might help to illuminate how people experience this phenomenon.

The aim of this chapter is to examine older people’s lived experiences of medication use following cancer diagnosis.

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