On What Basis do Australian Men Make Informed Decisions about

On What Basis do Australian Men Make Informed Decisions about Diagnostic and Treatment Options for Prostate Cancer? Tom A. Laws, Murray Drummond and Jelena Polijak-Fligic

School of Nursing and Midwifery, and School ofPhysical Education, Exercise and Sports Studies, University of South Australia & Cancer Prevention and Education Unit, Anti Cancer Foundation Men rely on general practitioners (CPs), other medical and nursing staff to provide them with information on prostate cancer and urinary symptoms. This paper identifies several problems encountered by Australian men in gaining information necessary for making an informed decision with respect to the detection and treatment of prostate cancer. An examination of disparities between national guidelines for screening and screening practices ofCPs reveals that complex medical issues exist in relation to the supply of screening tests. Similar complexities exist for Australian men trying to make an informed decision about prostate cancer treatments. In particular, there is very little evidence to show that any treatment option or combination of treatments has better outcomes. Thus, it is unlikely that Australian men, even those who are assertive and information literate, make fully informed decisions when consenting to screening procedures and treatment for prostate cancer. Men with limited use of English and poor literacy skills, such as older migrants are further disadvantaged in terms ofgaining information, and are likely to remain largely uninformed on even the basic issues relating to prostatic symptoms and prostate cancer. The task facing nurses is to research the needs of men and their communities as a basis for the development ofaccessible information resources. This approach will provide evidence in support of holistic nursing practice as well as increasing the likelihood that men's consent to prostate screening and treatment constitutes an informed decision. Carcinoma of the prostate is the second most common cause of cancer death in men in Western countries (Holmes, 1993). Screening for prostate cancer has been performed in the hope that earlier detection, and hence earlier treatment, will result in an improved prognosis for the individual. However, in the absence of evidence to this effect, Sladden and Dickinson (1994) called for prospective studies to test the hypothesis that men with prostate cancer detected through screening have better health outcomes than those who are not screened. Results from this type of study are not yet available. 86

The most commonly used form of screening is the digital rectal examination (ORE), either alone or in combination with a serum prostate specific antigen (PSA). Although the Canadian Cancer Society has recommended an annual ORE for men over the age of 40 years, Sladden and Dickinson (1993) contends that ORE is limited in that only the posterior and lateral aspects of the prostate can be palpated, thus 40-50% of cancers are beyond reach (Sladden & Dickinson, 1993, p. 1386). The PSA test is also problematic in that it carries an unacceptably high false positive result rate (Hirst, Ward, & Del Mar, 1996).

Australian Journal of Primary Health-Interchange Vol. 6, No.2, 2000

On What Basis do Australian Men Make Informed Decisions about Diagnostic and Treatment Options for Prostate Cancer?

A positive PSA result is an indicator for further investigation through biopsy to be done, which in itself is not without risk, including hemorrhage, septicemia, and psychological stress (Hirst, Ward, & Del Mar, 1996; Taylor, 1993 ). In consideration of these points, the Urological Society of Australasia (1993) stated as a policy, that it is entirely inappropriate to screen for prostate cancer, and might even be harmful (Taylor, 1993). Several ensuing national guidelines concur with this recommendation (Australian Cancer Society, 1995; Australian Health Technology Advisory Committee, 1996; National Health & Medical Research Council, 1996; Royal Australian College of General Practitioners, 1996). Despite these guidelines, GPs continue to authorise testing and Australian men continue to request being tested for prostatic cancer. Demand and Supply Issues The vast majority of screening tests are conducted by GPs (either DRE or PSA or combination of both). Selvin, Donnelly, Clarkson, English, and Ward (1999) found that, of 391 men surveyed, aged between 40 and 80 years, 56% (220) stated that they had been tested for prostate cancer by either PSA or DRE at some time. Reasons given by GPs for continued testing contrary to guidelines are that many GPs believe that screening contributes to a reduction in prostate cancer mortality rates (Ward & Girgis, 1998). Girgis, Ward, and Thomson (1999) found that GPs' awareness of the guidelines is low, and knowledge of evidencebased guidelines had little influence on the GPs' decision to perform at least one screening test for their male clients. Further, screening is often performed for medico-legal reasons (Girgis et al., 1999; Pinnock, Wakefield, Marshall, & 0' Brien, 1998). Specifically, GPs are concerned about advising against testing, because that patient could subsequently develop prostate cancer and commence litigation. Girgis et al. (1999) found that these concerns did not

diminish even when GPs were made aware that guidelines strongly support a decision not to screen. It is unlikely that Australian men, particularly those from non-English speaking cultures (NESC), would be aware of the medico-legal rationale that can provide the impetus for conducting the test. Having gained approval for the test(s) from their GP, men are more likely to assume that screening is beneficial and that they are acting responsibly with respect to promoting their own health (Pinnock et aI., 1998). The aggregate demand for screening made by Australian men has been positively influenced by media coverage of the issue, recommendations from GPs, and encouragement from spouses (Volk, Cantor, Spann, & Cass, 1997). Girgis et al. (1999) found that more than two thirds of a sample of GPs surveyed (n = 219) had received a request for prostate cancer screening from an asymptomatic man between a week and a month prior to participating in their study. Pinnock et al. (1998) identified that men's perceived benefit from the testing was linked to their anticipated 'peace of mind' should the results of the test be negative. Concern over the possibility of acquiring prostate cancer is high, because many older men experience urological symptoms that are indicative of prostate cancer. Age and the presence of benign lower urinary tract symptoms are significantly associated with participation in prostate cancer screening. (Selvin et aI., 1999. p. 185). Prostate enlargement caused by Benign Prostatic Hyperplasia (BPH) results in symptoms that are similar to, but not indicative of, those of prostate cancer. BPH is apparent in approximately 8% of men in their fourth decade of life, reaching 70% by the seventh decade (Glynn, 1985). Whilst Sladden and Dickinson, (1993) have recommend that men suffering 'prostatic symptoms' should be investigated by their General Practitioner, many men are infrequent users of all health services, and only rarely utilise community based health services (Huggins, 1995). Therefore it is


87

Tom A. Laws, Murray Drummond and Jelena Poli;ak-F1igic

not necessarily the case that men will comply with such advice. Consent The supply and demand forces just outlined indicate that complex issues arise when GPs inform patients about screening and patients give consent to be screened. Although Girgis (1999) showed that 88% of GPs surveyed 'agreed' or 'strongly agreed' that men's decision to be screened should be based on 'full disclosure of what is known about the diagnosis and treatment of early prostate cancer', Selvin et ai. (1999, p. 188) has couched this disclosure in terms of: 'an unenviable task in explaining the speculative nature of current evidence and ensuring men make fully informed decisions about screening'. This implies that GPs may not have the time or the background knowledge to outline the complex issues enmeshed in the debates about screening for prostate cancer. The lack of content, and time, devoted by GPs in support of informed consent has been quantified by Selvin et ai. (1999), who found that 38% of GPs did not discuss the pros and cons of the test with their patients. A further 39% stated that they spent less than five minutes on the issues surrounding the tests. Further, men tested by their 'regular' GPs were no more likely to have been counselled for more than five minutes than those consulting with other health professionals. A question to be put to GPs is, do they spend more time with men who have difficulty with English in order to ensure that their patient has a full comprehension of prostate screening and has considered the consequences of testing positive. Selvin et ai. (1999) found that printed information was given to only 17% of men surveyed. These men were significantly more likely to consider that they had been given 'sufficient' information than those not receiving any literature. However, there is no national literature on prostate cancer other than that printed in English. Pertinent 88

to these findings are Fletcher's (1995) observation that men are reluctant to make complaints about the availability of health services or the health care they receive. And some hold that many men are reluctant to use health services because this somehow challenges their masculinity and may make them feel awkward or embarrassed (Huggins, 1995; Pinnock et aI., 1998). Screening Information Identification of resources that could best support men in making an informed decision about whether or not to be screened for prostate cancer was conducted by Ward, Young, and Sladden (1998). Eighty items were identified as influential in terms of men's decision making. However, the data was collected from 28 health professionals, with only one consumer adviser; the opinions and needs of lay people were not sought. In 1998 Ward and Girgis, called for: A systematic approach to consumer education about prostate cancer screening 'especially to identify strategies to combat uninformed patient demand' (Ward & Girgis, 1998, p. 173). They concede that, 'in the absence of such an approach, experts disagree and controversy continues'. A systematic approach would normally identify the men most at risk of being 'uninformed'. It is reasonable to assume that older migrant men, who speak little or no English, or those whose understanding of medical terminology is questionable, are disadvantaged in terms of making an informed decision concerning prostate screening and treatment(s). The verbal transmission of information from GP to patient is likely to be difficult, given that approximately 17% (2,340,0000) Australians do not speak English as their first language (Australian Bureau of Statistics, 1996). Of these, only 49% reported English as a language that they 'felt most at ease with'. Of those born outside Australia, whose first language is not English, only 35% rated their English speaking skills as 'good' or 'excellent'.



Similarly, whilst Selvin et al. (1999) accounted for socioeconomic differences in men being screened, cultural diversity was not considered. In short, those who did not speak 'sufficient English' were excluded from the survey. Although Warde!, Taylor, Sutton, and Atkin (1999) attempted to account for cultural diversity with respect to screening for cancer in their UK study their data was limited to the categories 'white' or 'other'. Treatment Options Screening for prostate cancer is associated with risks, but they are comparatively minor compared to those associated with the effects of treatment. The early etiology of prostatic cancer remains poorly understood, making treatment options controversial (Taylor, 1993). In their review of treatment options, Siadden and Dickinson (1994, p. 310) concluded that: A diversity of advice exists, ranging from aggressive treatment to minimal intervention, which appears to rely on the beliefs of the proponents rather than on evidence.

That is to say, no studies indicate that any single treatment option (surgery, radiotherapy, chemotherapy) or combination of treatments is more effective than others. The Economist (The future of medicine, 1990) reports on research which has established that the practice of removing tissue from the prostate gland, after the appearance of (non-cancerous) growths but before the growths can do much damage, does not prolong life expectancy. Yet, in spite of this, the procedure for performing a trans-urethral resection of the prostate (TURP) is carried out regularly and costs Medicare, in the United States, over $1 billion dollars a year. Given that impotence is a major complication associated with TURP, men would no doubt want to be fully informed about their treatment options.

Langslow, (1991) states that informed consent should include, firstly, an awareness of the consequences and risks associated with treatment; secondly, the consequences of no treatment; and thirdly, the availability of alternative treatments. In consideration of these points, made by Mr Justice Campbell in relation to the case Roger versus Whitaker, the following conclusion has been drawn. 'The patient's need for information is therefore seen from the perspective of the patient and not from that of the doctor or medical profession' (Langslow, 1993, p. 33). The extent to which men are uninformed about their treatment options in relation to prostate cancer remains largely unreported. However, personal reflections from prostate cancer sufferers provide evidence to suggest that men do need more information (Crapp, 1998). These valuable insights highlight the need for printed information on treatment options and possible complications. Literature supporting informed decisions (Ward & Girgis, 1998, p. 173) contend that 'health information for consumers is partial and processes to develop content inadequate'. Works by Carruthers (1997), Llewellyn-Jones (1997), Hill (1993), Hamilton-Craig (1990) and Oppenheim (1994) provide examples of men's health literature that aim to informing the nonprofessional. An analysis of the content of these publications reveals that they are framed to inform the reader of the etiology of a disease, the potential pathways of a disease (pathophysiology), signs and symptoms, prognosis, and treatment options. Implicit in these literary works is a definition of health that is restricted to the absence of disease. The content also implies that doctors know more about men's health than do other health professionals or social commentators. As such, these works are indicative of the biomedical approach to illness; they are also ethnocentric in their focus. Although there is little literature exploring cultural aspects of health and


89

Tom A. Laws, Murray Drummond and Jelena Polijak-Fligic

cultural issues surrounding health care, it is very much needed. For example, growing evidence indicates that the traditional dietary patterns of many migrant men provide some protection against developing prostate cancer (Sacks, 1998). Triggering this research has been the knowledge that the incidence of prostate cancer in the migrant population is far less, relative to Australianborn males (Giles, 1995). However, there is no literature specifically encouraging migrant men, from a public health perspective, to maintain their traditional dietary patterns as a means of reducing the risk of prostate cancer. The lack of literature exploring the issues surrounding the treatment of prostate cancer suggests that it would be difficult for men, irrespective of their cultural background, to seek out appropriate information upon which to base informed consent to any treatment. Data that originates from men in the general population, taking account of cultural variables, is badly needed to complement existing knowledge. The questions: 'what do men see as the issues surrounding prostate cancer?' and: 'what information do they need to make informed decisions about screening and treatment options?' have thus far remained unanswered. Cultural Issues There is ample evidence of the 'embarrassment, confusion and humiliation' experienced by migrant women as a result of interactions with an ethnocentric Australian hospital and medical system (Macintyre, 1994). However, there is no corresponding information about men, though it is reasonable to assume that migrant men encounter similar difficulties when seeking information and negotiating treatment options, particularly in relation to problems associated with their reproductive system, such as BPH or prostate cancer. The cultural beliefs of men, and the way this variable influences their health behaviours 90

and their propensity to seek help in relation to actual and potential health problems, receives scant attention in the Australian public health literature.

Developing appropriate printed materials From their study of the perceptions of GP's, Girgis & Ward (1998, p. 173) contend that: Mass media campaigns rated much lower than the development of better pamphlets for men [especially in languages other than English J as a strategy to reduce uninformed demand for prostate cancer screening.

An appropriate process for the development of materials would be the identification of cultural issues, using qualitative research methods. This approach has been employed in relation to identifying health issues amongst women from nonEnglish speaking cultures (NESC). A study of Vietnamese women in South Australia was conducted to assess their knowledge and behaviours in relation to participation in Pap smear screening, with the view to developing health promotional resources (Cheek, 1999). Other studies have identified a range of cultural beliefs about cancer that impinge on women's decision making about health promotional activities (Russell, 1996; Temple-Smith, 1995). It is reasonable to assume that cultural beliefs amongst migrant men would result in comparable outcomes. Requesting that similar research is conducted for men should not be interpreted as men simply seeking competition for resources between the sexes. Rather, it is a call for research in recognition of the fact that men have health needs specific to their gender in the same way as women have separate needs. Having identified the salient issues, researchers must then consider the most appropriate mode in which health promotional material can be disseminated. Although pamphlets are relatively easy to develop, inexpensive to make, and can be circulated quickly, they may not prove to be


an effective means of informing all cultural groups. In a report on 'The social cost of inadequate literacy', Hartley (1989) states that: 'There is very little information beyond the anecdotal which looks directly at the .individual and social costs of limited literacy skills in the area of health' (Hartley, 1989, p. 21). However, Hartley (1989, p. xi) also claims that: 'if people have restricted access to general preventive health information; their health and the health of their children may suffer'. Stress brought about by low levels of literacy can also contribute to ill health. Among the population of Australian men, the majority will be able to speak and read English. However, the extent to which they can comprehend existing health promotional literature will need to be assessed. There will be other men who can speak English but have very limited literacy skills. A further category is those men who can only speak their native tongue, and they may be either literate or non-literate (Hartley, 1989). Consequently, the extent to which these migrants are competent in their native language will also need to be assessed before the development of printed culturally specific material regarding prostate cancer and BPH.

Literacy In 1996 there were 2,340,000 (17%) Australians aged between 15 and 74 years whose first language was not English. Only 65% of these rated their reading skills as 'good' or 'excellent', with 16% rating their reading as 'poor'. Of those aged 55-74 years, 62 % rated their English writing skills as 'moderate' or 'poor'. Of the people who spoke a language other than English, 27% could not write in the language they first spoke, or rated their skills as 'poor' (Australian Bureau of Statistics, 1996). These figures indicate that men who have problems with literacy would be in the same age group as men who are at risk of developing prostate problems. This suggests that information on prostate cancer might

best be disseminated by means other than literature. As it has been established that 70% of people use television as their primary source of information, it may be more appropriate to develop health information using videos produced with subtitles, or in languages specific to target cultures (Hartley, 1989). In summary, there is no evidence to support the belief that the early detection of prostate cancer through screening will contribute to the prolongation of life. This knowledge is reflected in several national medical guidelines recommending that screening for prostate cancer not be performed. Despite these guidelines, GPs continue to screen, and Australian men continue to request to be screened. Fear of litigation as a consequence of not screening, and lack of knowledge about screening guidelines, are cited as reasons for GPs continuation of screening (Girgis et aI., 1999). Men's requests to be screened are spurred on by a belief that screening is beneficial, and this is supported by mass media campaigns concerning screening per se (Pinnock et aI., 1998). These disparities indicate that Australian men, irrespective of their cultural background, would have difficulty in understanding the complexity of issues surrounding screening. Consequently, they are unlikely to be making informed decisions regarding the detection of prostate cancer. Similar problems arise with regard to consenting to treatment(s) for prostate cancer. A logical deduction is that men from NESC experience an even greater degree of difficulty in arriving at informed consent because a substantial number have limited comprehension of English and literacy skills. Conclusion In the absence of a systematic and validated review of how culture and gender intersect with the health beliefs and practices of the Australian male population, nurses are hard pressed to meet their role


91

description in terms of practising holistically. Urgently needed are materials that enhance the transmission of information and knowledge from English speaking health professionals to patients who have limited literacy kills and poor comprehension of English. Studies have already been conducted, and materials produced, to address health issues specific to Australian migrant women. Consequently, the authors call for a series of studies that identify health issues as expressed by men from a variety of NESCs. It is appropriate, once there is an understanding of how gender, language and culture intersect with the health beliefs and health practices of migrant men, that health

resources are developed to meet the needs of men and their communities. Given Australia's cultural and linguistic diversity, materials covering a wide range of languages, representative of Australia's migrant groups, would need to be developed. Informative materials that are linguistically and culturally specific could be taken home by the patient for reiteration of points made at the time of consultation with health professionals. The material could also provide the basis for informing the family on health practices, and discussing issues arising from a consultation. This approach should provide the evidence needed to support holistic nursing practices, as well as creating resources that promote informed consent.

References Australian Cancer Society (1995). Prostate cancer screening: Guideline for health professionals. Cancer Forum, 19,47-50. Australian Health Technology Advisory Committee (1996). Prostate cancer screening. Canberra: AGPS. Carruthers, M. (1997). Maximising manhood: Beating male menopause. London: Harper-Collins. Crapp, G. (1998). You have prostate cancer. In T. Laws (Ed.), Promoting men's health: An essential book for nurses (pp. 192-200). Melbourne: Ausmed Publications. Fletcher, R. (1995). An outbreak of men's health: The history of a welcome epidemic. Proceedings of the National Men's Health Conference (pp. 26-31). Canberra: AGPS. Giles, G., jelfs, P., & Kliewer, E. (1995). Cancer mortality in migrants to Australia 1979-1988. Canberra: Australian Institute of Health and Welfare. Girgis, S., Ward,]., & Thomson, C. (1999). General practitioners' perceptions of medicolegal risk: Using case scenarios to assess the potential impact of prostate cancer screening guidelines. The Medical journal of Australia, 171, 362-366. Glynn, R. (1985). The development of benign prostatic hyperplasia among volunteers in the Normative Ageing Study. American journal of Epidemiology, 121, 78. Hamilton-Craig, I. (1990). Men's health. Sydney: Pan Publications. Hartley, R. (1989). The social cost of inadquate literacy (A report for International Literacy Year). Canberra: Australian Institute of Family Studies, AGPS. Hill, A. M. (1993). The male menopause: What men and the women in their lives really need to know. Singapore: Times Books International. Hirst, G., Ward, ]., & Del Mar, C. (1996). Prostate cancer screening: The case against. Medical journal of Australia, 164, 285-287. Holmes. A. (1993). Carcinoma of the prostate. Australian Family Physician, 22 (8),1375-1384. Huggins, A. (1995). The Australian male: Illness, injury and death by socialisation. Perth, Western Australia: Curtin University, Men's Health Teaching and Research Unit. Langslow, A. (1991). Disclosing the risk. The Australian Nurses journal, 20 (10), 27-28. Langslow, A. (1993). Disclosure of risk: An important decision. The Australian Nurses journal, 22 (9),32-34. Llewellyn-jones, D. (1997). Your prostate, an owner's manual: The Essential guide for every man.

92



Ringwood, Penguin. MacIntyre, M. (1994). Migrant women from EI Salvador and Vietnam in Australian Hospitals. In C Waddell & A. Petersen (Eds.), Just health, inequality in illness, care and prevention (pp.159168). Melbourne: Churchill Livingstone. National Health & Medical Research Council (1996). Clinical practice guidelines: The management of uncomplicated urinary tract symptoms in men. Canberra: Author. Oppenheim, M. (1994). The man's health book. Englewood Cliffs: Prentice Hall. Pinnock, C, Wakefield, M., Marshall, V., & Obrien, B. (1998). Men's attitudes to prostate cancer screening. Cancer Forum, 22 (1),23-27. Royal Australian College of General Practitioners (1996). Guidelines for preventive activities in general practice (4th ed.). Melbourne: Author. Russell, C (1996) Attitudes and barriers to mamographic screening amongst Arabic-speaking women in the Sydney metropolitan area (Report to BreastScreen NSW). Sydney: State Planning and Coordination Unit, NSW Cancer Council. Sacks, F. (1998). Scientific basis of the healthy Mediterranean diet. Australian Journal ofNutritional Diet, 55 (Suppl.), 54-57. Selvin, T., Donnelly, N., Clarkson, J., English, D., & Ward, E. (1999). Prostatic cancer testing: Behaviour, motivation and attitudes among Western Australian men. The Medical Journal of Australia, 171,185-188. Siadden, M., & Dickinson, ]. (1993). Effectiveness of screening for prostate cancer. Australian Family Physician, 22 (8), 1385-1392. Siadden, M., & Dickinson,]. (1994). Carcinoma of the prostate. The Medical Journal of Australia, 160,310-311. Taylor,]. S. (1993). Carcinoma of the prostate. Medical Journal of Australia, 159,436-437. Temple-Smith, M., Banwell, C, Gifford,S., & Presswell, T. (1995). Promoting health beyond recruitment: Beliefs and attitudes to breast cancer screening services among Italian-born women in Melbourne. The Health Promotion Journal of Australia, 5 (2), 31-36. The future of medicine: Warning doctors can damage your wealth (1990, October 20). The Economist, pp. 17-20. Volk, R., Cantor 5., Spann,S., & Cass, A. (1997). Preferences of husbands and wives for prostate cancer screening. Archives of Family Medicine, 6, 72-76. Ward, J., Young, J., & Siadden, M. (1998). Australian general practitioners' views and use of tests to detect early prostate cancer. Australian and New Zealand Journal of Public Health, 22, 374-380. Ward, ]., & Girgis, S. (1998). Making an 'informed decision' about prostate cancer screening: What information is required? Health Promotion Journal of Australia, 8 (3), 173-176. Wardel, J., Taylor, T., Sutton,S., & Atkin, W. (1999). Does publicity about cancer screening raise fear of cancer? Randomised trial of the psychological effect of information about screening. British Medical Journal, 319, 1037-1038. Tom A. Laws School of Nursing and Midwifery City East Campus University of South Australia North Terrace Adelaide, South Australia, 5000 AUSTRALIA

Jelena Polijak-Fligic Cancer Prevention and Education Unit Anti Cancer Foundation

Murray Drummond School of Physical Education, Exercise and Sports Studies University of South Australia Correspondence to Tom A. Laws Australian Journal of Primary Health-Interchange Vol. 6, No.2, 2000

93