chapter  12
Dying to Be Heard: Cancer, Imagined Experience and the Moral Geographies of Care in the UK
ByFIONA M. HARRIS
Pages 12

In a comparison of cancer experiences in Scotland and Kenya (Murray, Grant, Grant & Kendall, 2003), a key fi nding was that cancer narratives in Scotland focused on anger, distress and the fear of dying; whereas in Kenya narratives focus on physical pain and suffering in the absence of comfort and support that minimizes fears of dying or other forms of existential distress. The authors argue that although Scotland (unlike Kenya) provides no-cost access to specialist cancer and palliative care services, the inability to voice distress and fears around death and dying remains an important area of unmet need for most Scottish cancer patients. The authors then pose the question: “has the professionalization of palliative care and the medicalization of death [in the UK] taken away skills and power from families and communities so that they are no longer able to accommodate the distress of dying?” (Murray, Grant, Grant & Kendall, 2003, p. 4). This question is linked to the sociology and anthropology of death and dying more broadly and exploring this provides a key to understanding and situating the narratives of cancer patients in Scotland. 2

How we talk about, manage and experience death and dying in the UK has changed dramatically over the last 50 years. For instance, the majority of deaths in the UK now occur in hospitals, hospices or nursing homes and only around 20% of people die at home (Taylor & Carter, 2004). Current UK policy supports the notion that dying at home is a hallmark of a “good death,” however, whether dying at home refl ects the wishes of patients and their families has been subject to debate (Thomas, Morris & Clark, 2004). For instance, one study found that those who have a terminal illness are more inclined to choose death outside the home, because of (for instance) fears around the fi nal stages of dying, or the impact on families (Seymour, Payne, Chapman & Holloway, 2007). There is no doubt that dying bodies have become subject to a multidisciplinary professional scrutiny (Giddens, 1991): death is no longer the preserve of communities, but has become invisible , sequestered from everyday life by institutional practices (Aries, 1981).