Volume 165 Issue 10

Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia Charles Waddell, Roger M Clarnette, Michael Smith, Lynn Oldham and Allan Kellehear MJA 1996; 165: 540 For editorial comment, see Hassan Readers may print a single copy for personal use. No further reproduction or distribution of the articles in whole or in part should proceed without the permission of the publisher. For copyright permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Survey participants - Questionnaire - Statistical analysis - Results - Case scenarios 1 and 2 - Case scenario 3 - Case scenario 4 - Responses to request for assisted death - Factors influencing choice of treatment - Factors influencing doctors' responses to patient's request for assisted death - Discussion - Acknowledgements - References - Authors' details - - ©MJA1996 Abstract Objective: To examine factors that influence medical practitioners' treatment decisions for patients with life-threatening or terminal illnesses. Design: Postal survey, conducted between September and November 1995, of a self-administered questionnaire, describing four clinical case scenarios, to a random sample of 2172 Australian doctors in all States and Territories. Respondents were asked to prescribe treatment for the patients described in the scenarios. Patients' characteristics varied in terms of mental competence, illness severity, prognosis, the presence of advance directives, request for assisted death, and sociodemographic factors. The respondents' sociodemographic and medical training characteristics were also obtained. Setting: Random national sample of all active medical practitioners. Participants: Hospital trainees, general practitioners, physicians, palliative care practitioners and surgeons were surveyed. A response rate of 73% was achieved. Main outcome measures: Frequency of prescription of supportive, acute or intensive treatment for patients in the four clinical scenarios based on respondents' sex, religion, medical training and country of medical degree. Results: Three main findings were: (i) doctors did not make consistent decisions, but their decisions varied systematically by sociodemographic and medical training factors; (ii) doctors generally adhered to patient and family wishes when these were known; (iii) doctors did not generally adhere to a patient's request for assisted death. Conclusion: Treatment provided is significantly determined by the individual characteristics of the doctor and not solely by the nature of the medical problem. Participation in the informed-consent process and in the preparation of advance health care directives would enable practitioners to be familiar with patient and family wishes and could reduce variations of treatment related to sociodemographic and medical training factors. Stronger empirical data on the way that treatment decisions are made could provide the basis for an informed euthanasia policy. MJA 1996; 165: 540-544 Introduction Advances in medical technology have allowed the medical profession to maintain life to an extent that is beyond the limits of what many would consider reasonable quality. 1-5 The use of advanced technology, particularly for terminal illnesses, has created a complex array of ethical, moral and legal issues, 6-8 and has been accompanied by opportunities for greater patient participation in treatment decision-making and individual involvement in choosing care. 1,3,4,8 The most contentious aspect of these developments seems to be the promotion of requests for physician-assisted death -- euthanasia. 1,6,9 However, the emphasis on euthanasia has been tempered by a greater focus on palliative-care principles in the management of patients with terminal and life-threatening illnesses. 10-12 A major impediment to the consideration of these issues is the lack of strong empirical data to indicate the way in which treatment decisions are reached. The process that leads to decision-making and action in clinical practice is unclear, and the factors that determine who ultimately makes a treatment decision, what influences treatment choice, and how the treatment is carried out have yet to be established. Although the idea of informed consent implies significant patient participation in decision-making, there is no evidence that such participation actually occurs. Indeed, many patients are incapable of giving informed consent. Doctors and family members usually make decisions in such circumstances, but the path for this process is unknown. Some authors have advocated the use of advance health care directives that can advise doctors of a patient's wishes regarding care should he or she become incompetent. 2 Several studies, surveying both the general public and health professionals, have examined areas relevant to these issues, including reactions of family members to the death of loved ones; 8,10,13 attitudes of doctors to death, dying 1-5 and palliative care; 12,14 doctors' experience with requests for euthanasia; 1,9,15 and factors that influence doctors' choice of treatment. 1-5,7 However, while many of these reports discuss the legal, ethical, medical and philosophical problems confronting health professionals, they do not address the factors that influence the health professionals to act as they do. To examine the factors that influence doctors' decisions on treatment for patients with life-threatening or terminal illnesses, we presented doctors with actual comprehensive clinical scenarios described in a questionnaire and asked them to state what they would do. Methods Survey participants A postal survey was conducted between September and November 1995. An initial mailing of the questionnaire was sent to a national sample of 2016 doctors with a workload of 50 or more services (i.e., items billed to Medicare) per quarter, randomly selected by the Health Benefits Division of the then Commonwealth Department of Human Services and Health. The questionnaire was also posted to all Australian palliative care practitioners registered with the Australian and New Zealand Society of Palliative Medicine ( n = 156). Each practitioner was asked to complete and return the questionnaire anonymously. After two weeks, a reminder card was sent to all in the sample. Of the 2172 posted, 1588 usable questionnaires were returned (3% trainees [interns, residents, registrars]; 41% general practitioners; 10% palliative care practitioners; 46% specialists). The response rate, 73.1%, compared favourably with that of Baume and O'Malley (76.1%). 9 Eighty-seven questionnaires were returned because they were incorrectly addressed. Questionnaire The questionnaire was based upon that used by Molloy and colleagues 2 in Canada. We adapted their case scenarios to the 1995 Australian context, particularly including the issue of physician-assisted death. The questionnaire presented scenarios based on clinical cases (see Box 1). The doctors were asked to choose one of three treatment options in each scenario: 1. Supportive care -- keep warm, dry and pain-free; use only those measures that enhance comfort or minimise pain; start intravenous line only if it improves comfort; perform no x-rays or blood tests and give no antibiotics unless such measures are intended only to improve comfort; 2. Acute care -- may involve transfer to acute-care facility; perform emergency surgery if necessary; do not ventilate (except during and after surgery); carry out all acute-care interventions, except for admission to the intensive care unit or the coronary care unit and performing organ transplantation; 3. Intensive care -- all possible interventions necessary to maintain life. The doctors were also asked how they would respond to a patient's request for assisted death (scenario 4). Three possible responses were listed: 1. Refuse request for assisted death, and explain and provide palliative (supportive) care only; 2. Agree to assist death by providing the means (e.g., by prescribing lethal medication); and 3. Agree to assist death by active intervention (e.g., by administering a fatal dose of narcotic analgesic). To assess the degree to which six independent variables -- legal, ethical, religious and economic factors and patient's and family's wishes -- influenced the choice of treatment, the doctors were asked to complete a five-point Likert-type scale following each scenario. Finally, the questionnaire addressed the sociodemographic characteristics (sex; religious background) and the training of the participating doctors (country of basic medical degree; number of years qualified; level of medical training). The study was approved by the Human Rights Committee, the University of Western Australia. Statistical analysis Our analysis cross-tabulated the aggregated responses to the treatment options of the four clinical scenarios with the sociodemographic and medical training factors to examine whether medical decision-making varied significantly depending on these factors. Statistical significance was tested by chi-squared tests, with exact probability levels being reported. 16 We examined the strength and direction of the relationships among treatment options for the four clinical scenarios and the six independent variables. Somers' d correlation matrix is presented with chi-squared levels of statistical significance of 0.01 and 0.001. 16 Stepwise regression analysis was used to assess the degree of variance explained by the six independent variables in the doctors' responses to the request for physician-assisted death. Results Case scenarios 1 and 2 In the 80-year-old incompetent woman with life-threatening and acute illnesses without the medical directive (Box 2, scenario 1), there were significant differences among doctors' choices by all sociodemographic and medical training factors, except for religion. In the 80-year-old incompetent woman with life-threatening and acute illnesses with a medical directive for acute treatment (Box 2, scenario 2), there were significant differences by religion and medical training factors, but no significant difference between male and female doctors. This woman was twice as likely to receive acute care than was the woman without a medical directive. Case scenario 3 In their treatment choices for the 33-year-old competent woman with terminal and acute illnesses insisting on intensive care, there were significant differences among the doctors by medical training factors but not by sociodemographic factors (see Box 2). Doctors from non-Western countries were more likely to honour the patient's request for intensive care than were Western-trained practitioners; however, most doctors chose acute care for this patient. Older doctors and those not trained in palliative care were also more likely to honour the patient's request for intensive care. Case scenario 4 Nearly all doctors (more than 93%) chose supportive care for the treatment of the 56-year-old competent man with motor neurone disease who requested physician-assisted death. The only significant difference was between doctors trained in Western and non-Western countries, with a greater percentage of the latter choosing more interventionist medical treatment. Responses to request for assisted death Box 2 shows three notable findings on the doctors' responses to the request for assisted death: 1. Most doctors reported that they would provide palliative care only to this patient (explaining the grounds for the decision); 2. The percentage of doctors who were willing to provide only the means to assist death was larger than the percentage who were willing to intervene actively to assist death (frequently referred to as active euthanasia); 3. Female, Catholic, Western-trained and older doctors, as well as palliative care practitioners, were the least willing to engage in any form of euthanasia; agnostic/atheist doctors were the most willing to engage in some form of euthanasia; and doctors trained in non-Western countries were more likely than Western-trained doctors to be willing to provide the means to assist death, but were less likely than Western-trained doctors to actively intervene to assist death. Factors influencing choice of treatment Box 3 presents the Somers' d correlation matrix for scenario treatments with factors influencing treatment choice. For the incompetent 80-year-old woman without the medical directive (scenario 1), legal and ethical factors showed a significant positive correlation with the treatment choice, whereas the patient's and the family's wishes had a significant negative correlation with treatment choice. For the incompetent 80-year-old woman with a medical directive (scenario 2), cost and the patient's and family's wishes were significantly related to the treatment choice, the latter two of these three independent variables being positively associated with treatment choice. For the 33-year-old competent woman insisting on intensive treatment (scenario 3), ethics and the patient's and family's wishes had a significant relation to treatment choice. For the 56-year-old man with motor neurone disease who requested assisted death (scenario 4), none of the factors examined were significantly related to treatment choice. Across the matrix, patient's wishes seemed to have a significant positive relationship with doctors' treatment choice in scenarios 2 and 3, but not in scenario 1 (patient's wishes not known) or in scenario 4 (the patient who requested assisted death). This pattern of correlation suggests face validity for this set of questions. It should be noted that, while some coefficients are statistically significant, they do not suggest strong relationships between the variables. Factors influencing doctors' responses to patient's request for assisted death Stepwise regression analysis of the six independent variables that influenced the doctors' responses to the patient's request for assisted death showed three of these variables to be significant: patient's wishes (F = 67.0; P < 0.001), ethical factors (F = 38.8; P < 0.001) and religious beliefs (F = 27.2; P < 0.001). However, together, these three variables still explained only seven per cent of the variance in doctors' responses to the patient's request for assisted death. Legal (F = 0.028; P = 0.87) and cost factors (F = 2.618; P = 0.11) and family wishes (F = 0.017; P = 0.90) were not significant in predicting doctors' responses to the patient's request for assisted death in this analysis. Discussion A major finding of this study was that doctors did not make consistent decisions on the treatment of severely ill and terminally ill patients at the end of life. The data suggest that there are no uniform criteria to guide doctors in managing such clinical situations. If these decisions are left solely to doctors then the outcome will vary systematically according to medical training and sociodemographic factors. The data also show that doctors generally adhered to patients' wishes, both those expressed contemporaneously and those expressed via advance directives. The doctors also considered the wishes of family members to be important in making their treatment choices. Doctors' capacity to treat patients according to their wishes (and, if necessary, according to the wishes of their families) could be enhanced in two ways: 1. By engaging competent patients (and their families, if required) in comprehensive discussions of treatment options and likely outcomes -- in short, by participating in the informed-consent process. 2. By developing and implementing methods for advanced care planning (advance directives) so that patients can inform doctors of the care they would want if they were to suffer severe and terminal illness and become incompetent. The first practice, informed consent, may be required by law. However, the concept of informed consent presents problems in a multicultural society, not only because of potential communication problems, but also because of cultural differences in such matters as "truth telling" about the seriousness of an illness. 17 The second practice, the use of advance care planning, is accepted in principle (although its manner of implementation is debated) in North America and the United Kingdom. The practice is rarely even discussed in Australia. In multicultural Australia, research that could inform policy on the acceptability and the implementation of these two practices is lacking. Such research would seem to be imperative. With respect to euthanasia, this study showed that few doctors would have complied with the wish of the patient who requested assisted death. Baume and O'Malley 9 speculated that such reluctance was a function of the illegality of the action. Our data do not support this speculation. While patients' wishes, and ethical and religious factors for doctors (as with Baume et al. 18 ), seem to be more efficient predictors than legal factors, even the three former variables explain little of the variance in doctors' response to this request for assisted death (only seven per cent for the three variables together). As an alternative to the speculation of Baume and O'Malley, 9 it may be that, in Australia today, doctors believe that assisting a patient to die is an act that negates what they perceive to be the very essence of their profession. The different ways that doctors perceive this indefinable essential quality (that is, what it means to each of them to be a doctor) may explain the variations in their decision-making. As Lickiss 19 writes: There will always be differences of opinion on profound matters in a free society, but being put to death with one's consent is not a private matter, for it strikes at the foundations of what we are, and affects not only the one put to death but the one who carries it out. Our acts shape us, and the act of putting another person to death must change us. If we are doctors, it strikes at the core of what we should be in society: bringers of life, of hope, of healing, of comfort, sometimes bringers of bad news, companions on the way. But not bringers of death. Hunt, 20 an apparent proponent of some forms of euthanasia, notes that palliative-care practitioners are firmly opposed to physician-assisted death. Other medical practitioners are also opposed. 6,15 Nevertheless, despite the finest symptom management, some terminally ill patients make serious requests for assisted death. 21,22 Perhaps, if some form of euthanasia is to be available to these patients, medical practitioners may not be the most appropriate group to carry out the request. Certainly, it would be prudent to investigate doctors' perceptions of what it means to them to be a doctor in Australia today. Furthermore, as stated at the beginning of the paper, a major impediment to informed consideration of the issue of euthanasia in Australia is the lack of strong empirical data. While we have added to and improved the data by this study, in which we questioned a national sample of doctors about their end-of-life treatment decisions in the specific clinical scenarios described, we did not attempt the difficult task of obtaining empirical data related to clinical decision-making at the bedside. Data drawn from strong research into this decision-making process could provide important information before policy on euthanasia is drafted and implemented. Acknowledgements This research was funded by the Commonwealth Department of Health and Family Services, Canberra. References Stevens CA, Hassan R. Management of death, dying and euthanasia: attitudes and practices of medical practitioners in South Australia. J Med Ethics 1994; 20: 41-46. Molloy W, Guyatt GH, Alemayehu E, et al. Factors affecting physicians' decisions on caring for an incompetent elderly patient: an international study. Can Med Assoc J 1991; 145: 947-952. Kelner MJ, Bourgealt IL. Patient control over dying: responses of health care professionals. Soc Sci Med 1993; 36: 757-765. Solomon MZ, O'Donnell L, Jennings B, et al. Decisions near the end of life: Professional views on life- sustaining treatments. Am J Public Health ; 1993; 83: 14-22. Christakis NA. Physician characteristics associated with decisions to withdraw life support. Am J Public Health 1995; 85: 367-372. Komesaroff PA, Lickiss JN, Parker M, Ashby MA. The euthanasia controversy: decision-making in extreme cases. Med J Aust 1995; 162: 594-597. Kaufman SR. Decision making, responsibility, and advocacy in geriatric medicine: physician dilemmas with elderly in the community. Gerontologist 1995; 35: 481-488. Ashby M, Wakefield M. Attitudes to some aspects of death and dying, living wills and substituted health care decision-making in South Australia: public opinion survey for a parliamentary select committee. Palliat Med 1993; 7: 273-282. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-145. Maddocks I. Good palliative care orders. Palliat Med 1993; 7: 35-37. Baume P. Living and dying: a paradox of medical progress. Med J Aust 1993; 59: 792-794. Wakefield MA, Beilby J, Ashby MA. General practitioners and palliative care. Palliat Med 1993; 7: 117-126. Seale C, Addington-Hall J. Euthanasia: the role of good care. Soc Sci Med 1995; 40: 581-587. Allbrook D. Palliative care in the 1990s? Med J Aust 1991; 155: 286-287. Anderson JG, Caddell DP. Attitudes of medical professionals toward euthanasia. Soc Sci Med 1993; 37: 105-114. Siegel S. Nonparametric statistics for the behavioural scientist . London: McGraw-Hill 1956. Waddell C, McNamara B. The stereotypical fallacy: a comparison of Chinese- and Anglo-Australians' thoughts about death-related matters. Presented at the Annual Australian Sociology Association Meeting, Newcastle, NSW. December 1995. Baume P, O'Malley E, Bauman A. Professed religious affiliation and the practice of euthanasia. J Med Ethics 1995; 21: 49-54. Lickiss, N. Chapter in: Chapman S, Leeder S, editors The last right? Australians take sides on the right to die. Melbourne: Mandarin, 1995: 98. Hunt RW. The hospice movement matures. Med J Aust 1996; 164: 452-453. Stephany TM. Assisted suicide: how hospice fails. Am J Hospice Palliat Care 1994; 11: 4-5. Peteet JR. Treating patients who request suicide: a closer look at the physician's role. Arch Fam Med 1994; 3: 723-727. (Received 15 May, accepted 29 Jul 1996) Authors' details The University of Western Australia, Nedlands, WA. Charles Waddell, PhD, Senior Lecturer in Anthropology. Department of Geriatric Medicine, Osborne Park Hospital, Perth, WA. Roger M Clarnette, MB BS, FRACP, Consultant Physician. Silver Chain Hospice Care Services, Perth, WA. Michael Smith, MB BS, MRACMA, Director of Clinical Services. The Cancer Foundation Cottage Hospice, Perth, WA. Lynn Oldham , BN(Hons), Clinical Nurse Specialist. Turning Point Alcohol and Drug Centre, Fitzroy, VIC. Allan Kellehear, PhD, Professor, and Head of Research Development. No reprints will be available. Correspondence: Dr Charles Waddell, Department of Anthropology, The University of Western Australia, Nedlands, WA 6907. E-mail: cwaddell AT uniwa.uwa.edu.au - - To top of article - ©MJA 1996 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Charles Waddell · Rodger M Clarnette · Michael Smith · Lynn Oldham · Allan Kellehear

Patterns of alternative medicine use by cancer patients Stephen D Begbie, Zoltan L Kerestes and David R Bell MJA 1996; 165: 540 For editorial comment, see Lowenthal Readers may print a single copy for personal use. No further reproduction or distribution of the articles in whole or in part should proceed without the permission of the publisher. For copyright permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Experiences of conventional treatment - Alternative treatment - Patient characteristics and alternative therapy use - Discussion - Acknowledgements - References - Authors' details - - ©MJA1996 Abstract Objective: To assess the patterns of alternative medicine use in patients of a public hospital oncology unit, and to compare patients' experience of alternative with conventional medicine. Design and setting: Self-administered questionnaire survey of cancer patients attending specialist consulting rooms at the Royal North Shore Hospital and the Oncology Outpatient Clinic at Port Macquarie Base Hospital during August 1995. Participants: 507 patients attended the clinics; 335 (66%) returned questionnaires, of which 319 (62%) were sufficiently complete for analysis. Main outcome measures: Expectations of and satisfaction with both conventional and alternative treatment, use of alternative treatment, and patient characteristics associated with this use. Results: Expectations of and satisfaction with both conventional and alternative treatment were very high. Alternative treatments (most commonly dietary and psychological methods) were used by 21.9% of patients. Median annual cost of alternative therapy was $530, with most patients reporting "value for money". Younger age and being married were positively associated, and satisfaction with conventional treatment was negatively associated, with alternative medicine use; 40% of patients did not discuss alternative medicine with their physician. Conclusions: A significant proportion of cancer patients use one or more forms of alternative therapy. The use of alternative therapy may reflect on deficiencies in the current standard of care. MJA 1996; 165: 545-548 Introduction Rapid developments in the conventional management of cancer have been accompanied by an increased consumer-driven move toward choice and individual control. While alternative (or complementary) medicine has always existed, its availability and variety are growing and its use increasing. 1 Cancer patients use alternative therapies despite arguments such as lack of scientific validity, proven ineffectiveness of some treatments and reliance on the placebo effect. It may be helpful for Australian doctors to know the range of alternative therapies used by cancer patients, and to have an understanding of the reasons why they use such therapies, as this may cast some light on deficiencies in the current standard of conventional care. We aimed to investigate the range of alternative therapies used by cancer patients attending outpatient clinics conducted by a teaching hospital clinical oncology unit, and to assess the level of satisfaction with these therapies and with conventional therapy. Methods Our subjects were all patients who attended the specialist consulting rooms of three medical oncologists at Royal North Shore Hospital (RNSH) in Sydney, and the Oncology Outpatient Clinic at Port Macquarie Base Hospital (PMBH), New South Wales, during August 1995. Reception staff offered each patient a self-administered questionnaire, with a covering letter from the chief investigator encouraging participation, and assuring confidentiality. Response to the questionnaire was voluntary, and patients were not asked to give explanations for not responding. The questionnaire sought demographic data, and the following information about their conventional treatment: understanding of diagnosis and treatment, expectations before treatment, impressions at the conclusion of treatment, and overall satisfaction. All questions were multiple choice, with the exception of diagnosis. Those who had used alternative medicine were asked (in multiple-choice questions, but with space for comments) to outline their reasons for doing so, as well as the treatments chosen. The questionnaire did not seek details of the chosen therapies. The same questions that were used to assess their conventional medicine experience were used to assess their alternative medicine experiences. In addition, they were asked about the reaction of family and friends to their use of alternative therapy, whether they had discussed alternative treatment with their medical oncologist, to estimate the financial cost, and whether they felt they had received value for money. Data were analysed using the Statistical Package for the Social Sciences 2 to determine associations between patient characteristics and alternative medicine use; significance was measured by the odds ratio. Logistic regression analysis was used to analyse all variables which may affect use of alternative therapy. Approval for this study was received from the Royal North Shore Hospital Ethics Committee, and from Port Macquarie Base Hospital. Results Five hundred and seven patients attended, of whom 335 (66%) responded (271 from RNSH, 64 from PMBH). Sixteen questionnaires were excluded from assessment (the alternative medicine question was unanswered in 12, no demographic details were given in 3, and one was returned blank), leaving 319 (62%) to be assessed. Demographic details for the 319 patients are shown in Box 1. It is noteworthy that in our study women, married people, and those with high levels of education and private health insurance predominate. Only 22.9% of the 319 patients were in paid employment, and median household income was in the $20 000-$40 000 range. A wide variety of diagnoses were represented; breast cancer was the single most common diagnosis. Experiences of conventional treatment Most respondents had received chemotherapy, and many had undergone other kinds of cancer therapy (Box 1). When asked about their expectations at the beginning of treatment, 85.6% believed that it would cure them or prolong their lives. By contrast, at the end of conventional treatment 63.0% felt that they had been cured or that their life had been prolonged, while 8.2% felt that their treatment had been of no benefit, or had made them worse. Most respondents (75.3%) were either satisfied or very satisfied with their experience of conventional therapy, while only 3.1% were either unsatisfied or very unsatisfied. Alternative treatment Seventy patients of the 319 assessed (21.9%) indicated that they were using alternative therapy. The most frequently given reasons were a preference for natural therapy, and seeing the alternative therapy as another source of hope (Box 2). Box 3 shows the alternative therapies chosen; dietary and psychological methods were most prevalent, followed by herbalism. Seventy-five per cent of patients tried more than one therapy (median, 3; range, 1-8). Most of the patients had learnt of alternative therapies through friend or family recommendation (37; 52.9%), and personal research (32; 45.7%), while doctor's recommendation (11; 15.7%) and media reports (6; 8.6%) were less common (some patients cited more than one source). In addition, family and friends were overwhelmingly supportive, with those of 64 patients (91.4%) being either encouraging or tolerant of the use of alternative therapies. At the beginning of alternative treatment 51 patients (72.9%) expected it would cure them or prolong their lives, while at the completion 34 (48.6%) felt that they had been cured, or that their lives had been prolonged. Only seven (10%) had the impression that alternative treatment was of no benefit, or had made them worse. Overall, 49 patients (70%) were satisfied or very satisfied with alternative treatment, and only one (1.4%) was unsatisfied. Forty-five patients gave an estimate of the annual cost of their alternative therapy; the median annual cost was $530 (range, 0-$20 000). Of the 70 patients who had alternative therapy, 45 (64.3%) felt they were getting value for money, five (7.1%) did not, and the remainder did not answer this question. Importantly, 37 (52.9%) felt that they could discuss their alternative treatment with their physician, while 28 (40%) felt they could not. Patient characteristics and alternative therapy use Being young and being married were significantly associated with use of alternative medicine, with marital status significant at P = 0.02. Logistic regression analysis showed that age and satisfaction with conventional therapy are the key predictors for a decision to use alternative therapy. Overall, younger patients used more alternative therapy (odds ratio, 1.67; P < 0.0001; 95% CI, 1.32-2.13), and those who were very satisfied with their conventional treatment used less alternative therapy (odds ratio, 0.55; P < 0.0001; 95% CI, 0.38-0.79). Sex, level of education, employment status, income, private health insurance, diagnosis, expectations at beginning of treatment or impressions at the end of treatment were not significantly associated with use of alternative therapy. Discussion Any discussion of alternative medicine is complicated by arguments about terminology. The most commonly used terms in the literature are "alternative", "complementary" or "unproven". Some have suggested that the term "alternative" is spurious, because it suggests equally valid options, 3 but we have chosen to use it because it is in common use in describing treatments outside conventional medicine. "Complementary" may seem an appropriate term for a study of patients attending a hospital, but it suggests therapies that are valuable when combined with conventional medicine. "Unproven" is the American Cancer Society's preferred term and relates to methods that are "on the basis of careful review by scientists and/or clinicians, not deemed proven, nor recommended for current use". 4 It has also been suggested that "There are no unproven treatments for universally curable diseases" 5 -- the very fact that this issue is so controversial in cancer medicine suggests that conventional treatment has a long way to go in optimising management of malignant disease. Previous studies have shown that between 9% and 54% of adult cancer patients use some form of alternative medicine, 6-10 while a recent Australian study reported a 46% rate of alternative therapy use in a paediatric oncology population. 11 The rate of alternative medicine use in our study (21.9%) is within this range. It may not be an accurate reflection of alternative therapy use in cancer patients as our patients' response to the questionnaire was voluntary, creating a potential selection bias. Nevertheless it does indicate that a significant proportion of cancer patients use some form of alternative therapy, and gives some idea of the current range of therapies. Several features of our study population should be considered when relating our results to other populations. Royal North Shore Hospital services the northern Sydney area, where the population is characterised by being relatively wealthy, and having high levels of education and private health insurance. Port Macquarie Base Hospital serves a community with a large retired population and relative wealth (by rural standards). The high prevalence of breast cancer managed by this unit explains the predominance of women in the group studied. There was a high level of optimism at the outset of both conventional treatment and alternative therapy (85.6% v. 63.0% belief in cure/life-prolongation), which fell modestly by completion of treatment (72.9% v. 48.6%). As most patients were receiving palliative chemotherapy, it seems that many patients had an unrealistic expectation about the goals of treatment. This reinforces the need for clear communication with patients. However, most patients were highly satisfied with both conventional and alternative treatments (75.3% v. 70.0%), and dissatisfaction was almost non-existent (3.1% v. 1.4%). This high level of satisfaction, often in the absence of objective benefit, has been described in studies of conventional 12 and alternative 6,11 medicine, and may be related to a hope engendered by the intervention of a clinician. 13,14 As in other studies which report that patients will frequently try multiple alternative therapies, 6,11 we found that over 75% of patients used two or more therapies. Alternative therapies available in Australia appear to be a mixture of the British and United States experience. Psychological methods such as relaxation, imagery and healing, which are prevalent in the United Kingdom, 6 and interventional methods, such as diet and megavitamins, more common in the US, 7 are used with similar frequency. The predominance of friend and family recommendation (52.9%) as the source of information on alternative medicine may partially explain the significantly increased use by married patients. The contribution of recommendation by doctors is comparatively low, but it must be remembered that these patients were attending an oncology service. Of course, some cancer patients may not seek conventional care, and consultations with alternative practitioners, or with medical practitioners who combine conventional and alternative therapies, are becoming more common. 15,16 In the US there are currently more referrals to alternative practitioners than to primary care physicians. 17 Many studies report the significant financial costs of alternative medicine. 5,9,18-20 There is a wide variation in the cost of various therapies, with psychological methods usually far less expensive than interventions such as metabolic therapy, Laetrile and high-dose vitamin C. In one US study, the median annual outlay was US$262, and the mean was US$3492, suggesting enormous expense in some cases. 7 Our findings are similar, with expenditure ranging from nothing to $20 000 per year. However, nearly all of those using alternative medicine felt they were getting value for money. Previous studies have reported that users of alternative therapy tend to be young, female, of higher social class and more highly educated, while income, increased time since cancer diagnosis, increased number of people in a household, and tumour site may be associated with alternative therapy use. 6,7,9 We found that being young and being married were significantly associated with increased use, and that those who were very satisfied with conventional therapy used less alternative therapy. The finding that being married is associated with increased use of alternative therapy may be related to having increased numbers in a household, 9 and perhaps greater access to ideas and support for trying new things. Many patients in our study did not discuss their use of alternative therapy with their physicians, possibly because they were afraid of getting a negative response. This may reflect a need to improve doctor-patient communication. If a proportion of patients are going to use alternative therapies, it is important that their doctors are informed: firstly, so that possible interactions and complications can be avoided, and, secondly, to enable doctors to provide informed opinion on the alternative choices available. Acknowledgements We thank Professor John A Levi and Dr Helen R Wheeler for contributing their patients to the study. References MacLennan AH, Wilson DH, Taylor AW. Prevalence and cost of alternative medicine in Australia. Lancet 1996; 347: 569-573. SPSS: Statistical package for the social sciences [computer program], version 5. Chicago, Ill: SPSS inc, 1990. McGinnis LS. Alternative therapies, 1990. An overview. Cancer 1991; 67: 1788-1792. Pamphlet number 3028-REV. Atlanta, Ga.: American Cancer Society, 1990. Cassileth BR. The social implications of questionable cancer therapies. CA Cancer J Clin 1989; 39: 311-316. Downer SM, Cody MM, McCluskey P, et al. Pursuit and practice of complementary therapies by cancer patients receiving conventional treatment. BMJ 1994; 309: 86-89. Cassileth BR, Lusk EJ, Strouse TB, Bodenheimer BA. Contemporary unorthodox treatments in cancer medicine. A study of patients, treatments and practitioners. Ann Intern Med 1984; 101: 105-112. Harris L and associates. Health information and the use of questionable treatments: a study of the American Public, 1987. Washington DC: Department of Health and Human Services, 1987. Lerner IJ, Kennedy BJ. The prevalence of questionable methods of cancer treatments in the United States. CA Cancer J Clin 1992; 42: 181-191. Miller MJ, Boyer MJ, Dunn SM, et al. Why do Australian cancer patients use unproven therapies? Proc Clin Oncol Soc Aust 1995; 22: 78. Sawyer MG, Gannom AF, Toogood IR, et al. The use of alternative therapies by children with cancer. Med J Aust 1994; 160: 320-322. Coates A, Gebski V, Bishop JF, et al. 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Complementary medicine: common misconceptions. J R Soc Med 1995; 88: 244-247. (Received 24 Jan, accepted 5 Aug 1996) Authors' details Department of Clinical Oncology, Royal North Shore Hospital, Sydney, NSW. Stephen D Begbie, MB BS, Oncology Registrar; Zoltan L Kerestes, PhD, Computer Scientist; David R Bell, MB BS, FRACP, Medical Oncologist. Reprints: Dr D R Bell, Department of Medical Oncology, Royal North Shore Hospital, St Leonards, NSW 2065. - To top of article - ©MJA 1996 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Stephen D Begbie · Zoltan L Kerestes · David R Bell