FACET - European Journal of Cancer Care March 2003

1. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective BAILEY, C.1 & CORNER, J. Slide One Notes • Older people and cancer: the demographic picture • In Western societies the number of older people is growing, and older age groups represent an increasing proportion of the population. • Cancer disproportionately affects those aged 65 and over, so the number of older people diagnosed with cancer is expected to rise in the future. • Older people have been described as bearing the brunt of the cancer burden. Demographic and epidemiological arguments pointing out the potential consequences of a rise in the number and proportion of older people in our society have been well publicised. However, some writers have questioned the way in which older people have been represented. Victor (1994) argues that the increase in the number of older people in the UK is relatively modest, and that the numerical size of the increase ‘does not seem to merit the panic aroused in those responsible for health and social policies’ (p.90). Perhaps our beliefs about older people have given us a distorted view of the future. One article, for example, asks whether the elderly are ‘an oncologic time bomb’ (Anon, 1991). How many of our views involve such damaging classifications? Do we think of increasing age as a source of fundamental ‘difference’ that sets us apart from our fellow citizens? What might the consequences be for caring practice? Slide Two Notes • Old age and science • The characteristics of old age may not seem to be in question, because we often think of them as having been ‘scientific’ discoveries. • For the purposes of research and academic study in health care, terms like ‘old’ and ‘the elderly’ are often given objective reference points. It is common to see ‘elderly’ defined as 65 years and older, and to find categories like ‘young-old’ (65-74 years), ‘middle-old’ (75-84 years), and ‘old-old’ (85 years and over). However, the chronological age used to define ‘old age’ is largely arbitrary and varies culturally and historically (Victor, 1999). Definitions and categories of old age could be thought of as part of a specifically statistical or demographic way of looking at things. It is sometimes argued that this viewpoint is ‘constructed’ or ‘ideological’. It serves to make a scientific or objective point of view possible, but may obscure experienced – or personal and individual – aspects of ageing. Caring for a person involves subjective knowledge of them, as well as knowledge of them as an instance of objective scientific fact. Estes & Binney (1989) argue that the biomedical model ‘equates the elderly person with his/her disease category’ and thus considers ‘only part of what makes him/her human’ (p.588). slides available at: www.blackwellpublishing.com/journals/ecc

2. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective (continued) Slide Three Notes • Age and functional status • Older age is often presented in the health care literature as part of a process of deterioration and decline. • Older people are statistically more likely to experience functional disability. • This may make it easier to justify the association of an older person with his or her ‘disease category’. There is a risk of making primary sense of older age as a period of increasing functional impairment, physical limitation, and psychiatric disorder. Older people may be thought of as ‘adding to the burden’ of health services that are already stretched to their limits. Older people, as a group, are sometimes interpreted as a ‘problem’ with severe consequences for the economy and health and social care care systems. Once defined as a problem, some people argue, it is easier for social groups to be thought of as the responsibility of ‘experts’ – academics and professionals – whose task it is to develop policy and strategy. The focus shifts from the individual to the ‘expert’. One view of health care is that the power to define need and establish expectations is largely in the hands of professionals and academics whose knowledge gives them expert status. ‘Problematised’ groups are vulnerable, and may be marginalised in terms of their contribution to our understanding of well-being. Slide Four Notes • An example from research • Koch & Webb’s (1996) study of older people in hospital describes care that resembles a ‘routine’ or ‘conveyor belt’ approach. • Individual requirements were not acknowledged. • Patients disliked being segregated or labelled as different on the basis of their age. Baker (1983) argues that the ‘routine geriatric style’ of care is based on a notion of the older person as a ‘stigmatised individual’ (pp.110-111), and that it puts orderliness above individual need. Baker refers us to Goffman (1968), who explains that someone who is ‘stigmatised’ is ‘reduced in our minds from a whole and usual person to a tainted or discounted one’ (p.12). Koch & Webb (1996) associate routine care with a single set of norms that are determined by the requirements of an institutional schedule. Needs are defined not by referring to the individual, but by referring to a series of standard values and associated nursing practices that include hygiene, pressure area care, medication and food. They quote from Ada, who has metastatic cancer: “I am sitting out of bed but I don’t want to be here. They just sit everyone out of bed … They are all resolved to put everyone in their chairs. That is the important thing” (p.955). slides available at: www.blackwellpublishing.com/journals/ecc

3. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective (continued) Slide Five Notes • The ‘biomedical construction’ of old age • The ‘biomedical’ view has been associated with the idea of the person as a machine or container for the mind. • As a machine, the body can be ‘repaired’, but can also ‘wear out’ over time. • This view tends to confirm the idea of ageing as a time of deterioration and decay. Interpretations of the body as a machine or mechanism that is separate from the mind (or ‘self’) may have important consequences for caring practice, and for the care of older people in particular. If we view our bodies as machine - or object -like, it seems normal to allow specialists in the ‘repair’ of bodies a wide degree of control over them. ‘As a machine’, Koch & Webb say, ‘the body can be entered, studied and tampered with in order to be repaired’ (p.957). Attention to the objective body means that the ‘patient as subject fades into the background’, and the individual is left with a diminished role in the process of setting the agenda for care and well-being. The ageing machine/body is subject to increasing amounts of wear and tear, so that it becomes, in effect, a ‘failing mechanism’. This, Koch & Webb believe, has contributed in health care to the negative stereotyping of old age as a time of decay and deterioration (p.958). Slide Six Notes • Is ‘old age’ just a way of thinking? • Bytheway (1995) has argued that old age and ageism are no more than ways of thinking. • He believes that we cannot ‘rethink’ ageism without questioning the presumption that ‘old age’ exists. • ‘The elderly’ or ‘the old’ could be thought of as socially constructed categories that make it legitimate to separate and manage people on the basis of their chronological age. According to Bytheway (1995), ageism is an ‘ideology’, a shared system of ideas or beliefs that ‘justifies the interests of dominant groups’ (GIddens, 1989). Bytheway explains that in health care, doctors may, having taken account of symptoms and clinical evidence, aim ‘more for amelioration than cure’ in their treatment of older people (pp.127-8). If this practice is based on clinical judgement and takes full account of the benefits and risks of the alternatives, it reflects ‘a recognition of the physical realities of age rather than the power of ageism’ (p.128). If, however, ‘treatments are systematically barred to people over a certain age because of a presumption that there will be no benefit, or because younger people are systematically given priority, or because limited success could lead to a continuing burden, then this is institutionalised ageism’ (p.128). To ‘take on’ ageism, we must, in effect, abolish the idea that age is a legitimate basis for distance or separation between individuals. slides available at: www.blackwellpublishing.com/journals/ecc

4. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective (continued) Slide Seven Notes • Images of older people • Johnson & Bytheway (1997) reviewed photographic images of care work with older people from a popular magazine. • The most common image was the ‘caring about’ photograph. • This image suggests that health care aspires to ‘care about’ as well as to ‘care for’ older people. • The images also suggest a view of older people as ‘passive, controlled, and dependent’. In the ‘caring about’ photographs, Johnson & Bytheway found that both the younger carer and the older ‘cared about’ person were often women (79% and 87% respectively). In a majority of the photographs, the younger person is leaning towards the older person (55%) or taking up more space (57%). In some photographs, the younger person is making a conscious effort to face the older person on the same level. In others, the younger person is more prominent, or the older person appears to be on show, or an exhibit, to be inspected by the younger person and the reader (Johnson & Bytheway, 1997, pp.136-7). This, Johnson & Bytheway believe, shows that the images reflect the aspirations of health care to ‘care about’ as well as ‘care for’ older people, as well as a view of older people as ‘passive, controlled, and dependent’ (pp.137-8). Images like these, they suggest, contrast sharply with more realistic and challenging images that ‘ignore the association between age, care, and dependence’ (p.141). Slide Eight Notes • Non-persons and social death • The very old and the sick have been identified as categories of ‘non-person’. • A ‘non-person’ is someone who is treated as if they were not there. • Hospital patients can become non-persons before their actual death, if other people’s behaviour towards them reflects a recognition they they are dying in a clinical sense. • Being treated as a non-person in this way has been likened to a kind of ‘social death’. It is Goffman (1959) who identifies the the old and the sick as kinds of ‘non-person’, by which he means people who are treated as if they were not there. Mulkay & Ernst (1991) say that the ‘sequence of physical decline that we call “dying” is accompanied by a sequence of social decline … In many cases, although the patients’ basic physiological requirements continue to be met … he or she ceases to exist … as an active, individual agent some time before biological termination takes place’ (p.174). Mulkay & Ernst point out that older people ‘are likely to find themselves … subject to a general physical aversion which is akin … to the revulsion caused by dead bodies’ (p.181). They point to research by Sudnow (1967) in which hospital staff are seen to ‘deal with all their elderly patients in a special way which follows from the latter’s proximity, as elderly persons, to biological death’ ( p.181). In other words, elderly people in hospital are already located in a ‘social death sequence’. slides available at: www.blackwellpublishing.com/journals/ecc

5. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective (continued) Slide Nine Notes • Older people and acute illness • Latimer (1997) describes the case of 91-year-old Jessie, who has had a stroke, and argues that she is classed by hospital staff as an ‘old person’ not an ‘acutely ill’ person. • Her problems are interpreted as the natural consequences of getting older. • She is therefore not the responsibility of medical staff, and falls outside the legitimate scope of health care. Latimer’s ethnographic research was carried out on an acute medical unit of a large British hospital. Her account of Jessie is based on conversations with a ward sister. She argues that the category ‘older people’ is absurd but inescapable. We are all part of the process of creating this distinction, because we all fear increasing age. At the same time we are all always already ‘becoming older’. The ward sister, Latimer says, has ‘refigured’ or ‘redefined’ Jessie by removing her from the category of ‘acutely ill’ person, and placing her in the category of ‘old person’. Because ill health in old age is seen as biologically inevitable, it is part of the natural order of things. Jessie is ‘out of place’ in the medical ward because as an old person, she is subject to progressive decline until death, and is unlikely ever to fulfil medical ambitions of an ‘heroic’ recovery. The primary association of ageing with physical decline means that older people fit uneasily into the domain of professional care. Slide Ten Notes • Older people and cancer treatment • Questions have been raised about certain aspects of the treatment of older people with cancer. • Some research suggests that differences in treatment received for cancer may be age-related. • Is there a rational explanation for the differences in treatment received by older people with cancer, or are the differences due to ‘ageism’? In 1991, Fentiman et al published a paper called Cancer in the Elderly: Why So Badly Treated? Even ten years later, the question posed by this paper sets us an important challenge: to ensure that older people are given the same opportunities as their younger counterparts when they have cancer. Some commentators believe that older people with cancer can be subject to age bias: ‘age-related differences in … post-diagnostic treatment suggest a deep … social “ageism” influencing who receives aggressive treatment’ (Mor et al, 1985). Others believe there are good reasons for age-related differences in treatment. Guadagnoli et al (1997) conclude that in early stage breast cancer, for example, the decline with age in the frequency of adjuvant chemotherapy is consistent with the diminished efficacy of the treatment in older patients. What is important is that we all take the question of age-related differences in treatment seriously. slides available at: www.blackwellpublishing.com/journals/ecc

6. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective (continued) Slide Eleven Notes • Chemotherapy • Some research has shown that older people with cancer do not receive adjuvant chemotherapy as often as younger people. • Fear of increased toxicity may discourage doctors from offering this kind of treatment to older people. • Some studies suggest that older people, in general, do not tolerate chemotherapy less well than younger people. Newcomb & Carbone (1993) found that women aged >65 received radiotherapy and adjuvant chemotherapy for breast cancer less often than women aged <65, and that chemotherapy for colorectal cancer was less common in the older age group. In their study, De Rijke et al (1996) found that stage of disease was unknown in a larger proportion of older patients, that older patients were more likely not to be treated, and that older patients were more likely to receive single modality treatment. Popescu et al (1999), who studied palliative and adjuvant chemotherapy for colorectal cancer in patients aged >70 years, concluded that chemotherapy is well tolerated by older patients, that the palliative benefits are similar for fit older and younger patients, and that adjuvant chemotherapy should be offered using the same criteria that are applied to younger patients. Schrag et al (2001) ask why elderly patients do not receive potentially curative adjuvant chemotherapy, and raise the possibility of nonmedical barriers to care. Slide Twelve Notes • Final thoughts • The extent to which nonmedical barriers to care affect older people with cancer should be carefully considered. • We do not yet fully understand the influence of age itself, social resources, cultural barriers, professional attitudes, or patient preferences on treatment decisions in older people with cancer. • Could better patient outcomes be achieved if we could overcome some of these ‘barriers’? There is an increased likelihood, with age, of functional disability (Silliman et al, 1993), and this might affect patients’ decisions not to proceed with adjuvant treatment, for example. The role of functional status and comorbidity in decisions about adjuvant treatment is not fully understood, however, and we need to know more about exactly how important these factors are when such treatment is either not offered or not pursued. The question of whether patients do not proceed with treatment because they judge themselves ill-suited to do so, or whether they are in effect prevented from doing so because of some (potentially) remediable lack of necessary support, is a particularly crucial one. We need to ask ourselves whether, if comprehensive support were to be more readily available, more older people would choose to receive extended treatments for their cancer. We might also ask ourselves what, in these circumstances, the effect on patient outcomes might be. slides available at: www.blackwellpublishing.com/journals/ecc

7. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective (continued) • References • Anonymous (1991)The elderly: an oncologic time bomb? Annals of Oncology, 2(2): 82-83. • Baker, D. (1983) ‘Care’ in the geriatric ward: an account of two styles of nursing. In: Nursing Research: Ten Studies in Patient Care, edited by J. Wilson-Barnett, John Wiley & Sons, Chichester. • Bytheway, B. (1995) Ageism. Open University Press, Buckingham. • Cancer Research Campaign (1992) Factsheet 5.1: Cancer in the European Community. Cancer Research Campaign, London. • Estes, C.L. & Binney, E.A. (1989) The biomedicalisation of ageing: dangers and dilemmas. The Gerontologist, 29(5): 587-596. • Fentiman, I., Tirelli, U., Monfardini, S., Schneider, M., Fersten, J.F., & Aapro, M. (1990) Cancer in the elderly: why so badly treated? Lancet, 335:1020-1022. • Giddens, A. (1989) Sociology. Polity Press, Cambridge. • Goffman, E. (1959) The Presentation of Self in Everyday Life. Doubleday, Garden City, New York. • Goffman, E (1968) Stigma: Notes on the Management of Spoiled Identity. Penguin Books, Harmondsworth. • Guadagnoli, E., Shapiro, C., Gurwitz, J.H., Silliman, R.A., Weeks, J.C., Borbas, C., & Soumerai, S.B. (1997) Age-related patterns of care: evidence against ageism in the treatment of early-stage breast cancer. Journal of Clinical Oncology, 15(6):2338-2344. • Johnson, J. & Bytheway, B. (1997) Illustrating care: images of care relationships with older people. In: Critical Approaches to Ageing and Later Life, edited by A. Jamieson, S. Harper, & C. Victor, Open University Press, Buckingham. • Katz, S. (1996) Disciplining Old Age: The Formation of Gerontological Knowledge. University Press of Virginia, Charlottesville. • Koch, T. & Webb, C. (1996) The biomedical construction of ageing: implications for nursing care of older people. Journal of Advanced Nursing, 23(5):954-959. • Latimer, J. (1997) Figuring identities: older people, medicine, and time. In: Critical approaches to Ageing and Later Life, edited by A. Jamieson, S. Harper, & C. Victor, Open University Press, Buckingham. • McCaffrey Boyle, D., Engelking, C., Blesch, K.S., Dodge, J., Sarna, L., & Weinrich, S. (1992) Oncology Nursing Society position paper on cancer and ageing: the mandate for oncology nursing. Oncology Nursing Forum, 19(6), 913-933. • Mor, V, Masterson-Allen, S., Goldberg, R.J., Cummings, F.J., Glicksman, A.S., & Fretwell, M.D. (1985) Relationship between age at diagnosis and treatments received by cancer patients. Journal of the American Geriatric Society, 33(9):585-589. • Mulkay, M. & Ernst, J. (1991) The changing profile of social death. Archives of European Sociology, XXXII:172-196. • Newcomb, P.A. & Carbone, P.P. (1993) Cancer treatment and age: patient perspectives. Journal of the National Cancer Institute, 85(19):1580-1584. slides available at: www.blackwellpublishing.com/journals/ecc

8. FACET - European Journal of Cancer Care March 2003 Older People, Care, and Cancer: A Critical Perspective (continued) • References (cont.) • Popescu, R.A., Norman, A., Ross, P.J., Parikh, B. & Cunningham, D. (1999) Adjuvant or palliative chemotherapy for colorectal cancer in patients 70 years and older. Journal of Clinical Oncology, 17(8):2412-2418. • Silliman, R.A., Balducci, L., Goodwin, J.S., Holms, F.F., Leventhal, E.A. (1993) Breast cancer in older age: what we know, don’t know, and do. Journal of the National Cancer Institute, 85(3): 190-199. • Sudnow, D. ((1967) Passing On: The Social Organization of Dying. Prentice-Hall, Englewood Cliffs, NJ. • Victor, C.R. (1994) Old Age in Modern Society: A Textbook of Social Gerontology. Chapman & Hall, London. • Victor C. (1999) What is old age? In: Nursing Older People, edited by S.J. Redfern & F.M. Ross, Churchill Livingstone, Edinburgh. Footnotes 1Chris Bailey is Research Advisor for the Wessex Primary Care Research Network, Primary Medical Care, University of Southampton, and a lecturer in the School of Nursing and Midwifery, also at the University of Southampton. Jessica Corner is Professor of Cancer and Palliative Care, School of Nursing and Midwifery, University of Southampton. Correspondence address: C.D.Bailey@soton.ac.uk slides available at: www.blackwellpublishing.com/journals/ecc