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Journal of Clinical Oncology, Vol 22, No 9 (May 1), 2004: pp. 1759-1762 © 2004 American Society of Clinical Oncology. DOI: 10.1200/JCO.2004.02.166
Treatment Decision Aids in Advanced Cancer: When the Goal Is Not Cure and the Answer Is Not ClearFrom the Department of Medical Oncology, Princess Margaret Hospital/University Health Network, University of Toronto, Toronto, Ontario, Canada; Medical Psychology Research Unit, Royal Prince Alfred Hospital, and Department of Cancer Medicine, University of Sydney, Sydney, Australia. Address reprint requests to Natasha Leighl, MD, Princess Margaret Hospital/University Health Network, 5-222, 610 University Ave, Toronto, Ontario, Canada M5G 2M9; e-mail: Natasha.Leighl{at}uhn.on.ca HERE'S THE CASE A 74-year-old war veteran presents with bowel obstruction, is found to have multiple liver and omental metastases at the time of surgery, and undergoes palliative resection of a primary colorectal cancer. The patient, asymptomatic following his postoperative recovery, is referred to a medical oncologist, who, recommending palliative systemic chemotherapy, initiates fluorouracil-based treatment. After 4 months, the patient is admitted once for febrile neutropenia, and has experienced fatigue, diarrhea, and mouth sores. His doctor deems these toxicities minor, while the patient feels that the treatment has compromised his quality of life. His oncologist tells him that his scans are unchanged. The patient wonders whether this treatment has been worthwhile, and whether he had other options at the start of treatment. Treatment decision making in advanced cancer is complex for many reasons. The goals of treatment are often palliative: to improve disease-related symptoms and life quality for a limited period of time, and in some cases, to prolong average survival by weeks or months. The limited tumor selectivity of many agents used in systemic cancer therapy, however, means that substantial treatment-related toxicity is common, though developments in targeted therapy may eventually change this. When the goal of treatment is not cure, treatment decisions are further complicated by patient and caregiver denial, anxiety, physical distress, and emotional distress. In addition, potential misunderstandings of information, available through physicians, the health care team, media, and other sources, can make for a complex decision-making process for patients. Patients increasingly define themselves as consumers of health care. Many cancer patients today want detailed information about their cancer diagnosis, prognosis, and treatment options, and many wish to be active participants in medical decision making. Support for involving patients in making decisions about their care is mounting with an increasing weight of evidence in several areas of medicine, demonstrating that this can contribute to better quality decisions and can improve health outcomes. Among cancer patients, those offered choices in their treatment show better psychologic adjustment and health-related quality of life, while those feeling that they have had little control over their disease and treatment have a poorer psychosocial outcome.1,2 Moreover, patients who perceive that their physicians are making an effort to facilitate their involvement in decision making tend to be more involved in that process and have greater satisfaction and physician loyalty.3,4 PATIENT PREFERENCES FOR INFORMATION AND INVOLVEMENT Patients have variable preferences for information and involvement in their cancer care, with predictive variables including age, sex, education, and performance status. A survey of 1,012 Canadian women with early breast cancer revealed that most of these women wanted detailed information about their disease, that 22% wanted to select their own treatment, that 44% wanted to select treatment collaboratively with their doctor, and that 34% wanted their doctor to select the treatment.5 A small study of 48 patients with colon cancer reported that while these patients have similar information needs compared with patients with breast cancer, they have strikingly lower involvement preferences.6 Indeed, 78% wanted to play a passive role in decision making and 80% perceived that they did so. Similarly, a study of 57 men with prostate cancer found that the men wanted to be well informed, though 58% preferred that their doctor make the final treatment decision.7 Estimates of the proportion of cancer patients who achieve their desired involvement in their treatment decision making range from 34% to 42%.4,5 PATIENT INFORMATION RESOURCES To be active participants in their care, patients must have an accurate understanding of information about their disease and treatment options. This requires both the provision of accurate information and its successful comprehension. There are documented problems in both areas. Studies examining the adequacy of information provided during medical consultations have found that many patients are not equipped to make informed decisions.8 Gattellari et al examined initial oncology consultations from a subset of 118 patients with advanced cancer, and found that only 58% were told about their life expectancy.8 While the goals of recommended treatment were reviewed in most consultations, the impact of treatment on quality of life was discussed with only 36% of patients. The concept of uncertainty of benefit was introduced in 60% of consultations, but supportive care was discussed as a treatment option in only 44% of consultations. Existing patient information materials, which can supplement information discussed in the consultation, are often not in an acceptable, comprehensible, useful format for patients. Further, information available through the Internet is often inaccurate, misleading, or too complex for the average patient. However, there are many initiatives to improve this, such as the American Society of Clinical Oncology's People Living With Cancer Web site (http://www.peoplelivingwithcancer.org), and the National Cancer Institute's Cancer Information service (http://cancer.gov/cancerinfo/). Only those patients who understand their prognosis can make informed choices about their care, or participate in treatment decisions in accordance with their values. But even when patients receive the required information, a significant proportion misunderstands this information. The reasons for this are multifactorial, relating to physician and patient communication techniques, information overload, as well as patient anxiety and possible denial. Studies have shown that as many as a third of cancer patients misunderstand information they have received.9,10 For example, in a study of 244 Australian cancer patients, less than 20% correctly estimated the chance of treatment achieving cure, prolonging life, or palliating their symptoms. While patient denial contributed to misunderstanding in this study, patient rating of the clarity of information received was also predictive of their understanding.10 What patients understand, or misunderstand, about their prognosis can lead to polarized decisions about management. A study of 916 hospitalized patients with advanced non–small-cell lung or colon cancer found that while doctors were reasonably accurate in their prediction of patient life expectancy, 82% of patients overestimated their life expectancy, and 59% were significantly more optimistic about their life expectancy than their physician.11 The perception patients had of their prognosis had a profound effect on their subsequent treatment decisions. Overly optimistic patients were nearly three times more likely to pursue aggressive therapy over supportive care, but their survival was no better than those who pursued supportive care alone. Physicians are also contributing to the increasingly aggressive management of cancer patients at the end of life, with as many as 18% of patients receiving chemotherapy within 14 days of death.12 Clearly, physicians are obliged to determine what their patients wish to know, to provide information on prognosis, including life expectancy, the evidence-based impact of therapy on survival and quality of life, and to review all treatment options, including supportive care alone, in the setting of advanced cancer. DECISION AIDS FOR PATIENT MEDICAL DECISION MAKING There are several potential methods to promote patient understanding and to facilitate decision making. These include patient information aids, techniques to reduce patient anxiety, communication training for patients and/or physicians, and decision aids (DAs). DAs are defined as "interventions designed to help people make specific and difficult choices among options by providing information on the options and outcomes relevant to the person's health status."13 More than 50 studies of DAs for cancer patients have been published, with most targeting patients considering primary or adjuvant treatment of early stage breast or prostate cancer. However, DAs have been developed to address issues of cancer screening, genetic testing, cancer prevention, and, less commonly, the management of advanced cancer. Many of these are developmental studies, but more groups are testing DAs through randomized trial designs. Whelan et al14 conducted a randomized trial in patients with node-negative breast cancer considering chemotherapy, comparing the effect of the standard medical consultation versus the consultation plus use of a validated decision board (DB). Patients randomly assigned to use of the DB demonstrated a significant improvement in knowledge about disease and treatment, and greater satisfaction with decision making up to 12 months after the initial consultation; however they exhibited no statistically significant difference in patient anxiety, consultation duration, or treatment choice between the two arms, nor in physician satisfaction with decision making. Patients randomly assigned to use the DB were more active participants in their medical decision making than those randomly assigned to the standard consultation. Ravdin et al15 also presented the results of a randomized trial in patients with early-stage breast cancer, using the computer program "Adjuvant!" (http://www.adjuvantonline.com) to assist patients and physicians with adjuvant systemic therapy decisions. Patients randomly assigned to use the computer program were significantly more satisfied with the decision-making process and had a better understanding of adjuvant treatment. Patients randomly assigned to use the program were more likely to select either a chemotherapy-containing regimen (39% v 36%; P = .04) or no systemic adjuvant therapy (15% v 11%; P = .04) than those not randomly assigned to use the program. These encouraging results with decision-support tools in early-stage cancer patients do not necessarily predict the success of similar tools in the setting of advanced cancer. For patients with incurable cancer, the prognosis and treatment goals differ substantially from the goals of adjuvant therapy. The trade-off between benefits and toxicities of palliative therapy is more complex. Advanced-stage cancer patients often have greater need for emotional support and symptom control, in addition to their information and decision-involvement needs. Five studies have been published describing the development of DAs for patients with metastatic cancer, and one for locally advanced cancer.16–21 However, none one of these has been evaluated through a randomized trial. Elit et al16 developed and tested a DB to elicit patient preferences for therapy in advanced epithelial ovarian cancer. This DB describes two cancer chemotherapy options for patients with suboptimally debulked ovarian cancer, with their potential adverse effects and possible outcomes. Although one of the treatment options in this DB is no longer widely used, the use of the board made it possible to provide prognostic information to 98% of patients, which was previously uncommon, and the DB was shown to be a reliable, valid method of sharing information about advanced ovarian cancer with patients. DAs have also been developed for patients with lung cancer. Fiset et al,17 developed a DA for patients with metastatic non–small-cell lung cancer—a workbook and an audiotape for patients to take home. Using a pre-/posttest design, the aid was demonstrated to improve patient knowledge of options and outcomes, and reduce decisional conflict. Most physicians reviewing the aid found it acceptable. For patients with locally advanced and metastatic non–small-cell lung cancer, Brundage et al developed DAs to help patients decide between supportive care (or radical radiotherapy in locally advanced disease), with or without chemotherapy.18,19 The aids describe the different treatment options and the adverse effects of each treatment choice, including an assessment of the effect of each treatment choice on the patient's physical and social functioning. This information is followed by a structured interview to help the patient work through trade-off exercises to clarify the patient's values for the outcomes of median survival and 1-year or 3-year survival with either treatment option. Both have been demonstrated to be feasible and useful. For metastatic prostate cancer, one DA provided a letter that patients took home, explaining two potential hormonal treatment options—surgical castration versus therapy with a luteinizing hormone-releasing hormone.20 More than 90% of patients and their wives indicated satisfaction with their treatment decision, revealing that they would select the same treatment again. Chadwick et al21 reported a case series of 51 patients with advanced prostate cancer who were offered a structured interview to assist them with decision making about medical or surgical orchidectomy, reviewing the procedures, their benefits, and adverse effects. These patients identified treatment convenience and the doctor's recommendation as the major considerations contributing to their treatment decision. Lastly, a DA has been developed for patients with metastatic colorectal cancer to facilitate decision making for the systemic management of their disease and to improve patient understanding about their disease and treatment options.22 Evidence from randomized trials and individual patient meta-analyses describing the potential benefits and toxicities of different standard treatment options, including supportive care alone, was incorporated and illustrated using graphic formats, with a values clarification exercise. The aid, in the format of a take-home booklet and audiotape, was well received and proved to be feasible, highly acceptable to patients, valid, and reliable. Review of the DA using a pre-/posttest design in an initial pilot study of 27 patients significantly improved knowledge (P = .013), and did not seem to increase anxiety. A randomized trial of the DA in this patient population is ongoing, to evaluate its effectiveness in the clinical setting with respect to patient knowledge, decisional conflict, decision satisfaction, treatment decisions made, and patient well-being. CONCLUSION Treatment decisions in advanced cancer are difficult. The uncertain benefits of systemic anticancer treatment must be weighed against likely toxicity, in a situation where the goal of treatment is not cure. While many decision supports exist for early-stage cancer patients, there are few for advanced cancer patients, who arguably have a greater need for decision support. The potential benefits of DAs include enhanced patient understanding, reduced decisional conflict, enhanced harmonization between patient values and treatment decisions, and greater patient involvement and satisfaction with decision making. Two systematic reviews have been reported regarding 18 randomized trials that studied the effects of DAs on improving patient decision making and patient outcomes in patients with early-stage cancer.13,23 These meta-analyses demonstrate that, compared with controls, most of the DAs studied produced higher patient knowledge scores, lower decisional-conflict scores, and more active patient participation in decision making. No differences in anxiety or satisfaction with decisions were seen.13 The effectiveness of these promising decision support tools for advanced-stage cancer patients and their role in current oncology practice should be better defined through additional randomized trials. DAs and supports to facilitate decision making for patients grappling with the diagnosis of advanced cancer can further our goal of improving the quality of decision making and overall care in advanced-stage cancer patients, through enhancing informed consent, decision satisfaction, better harmonizing of treatment decisions at the end of life with patient values, and potentially improving patient well being. THE CASE REVISITED The patient participated in a developmental study of a DA for advanced colorectal cancer patients. He learned, among other things, that supportive care alone was a valid option for the management of advanced cancer, as is expectant management in the case of the asymptomatic patient. He also learned more about the potential survival benefit from chemotherapy, and the concept of progression-free survival. On reflection, he felt that it had been worthwhile trying the chemotherapy, but, given the toxicities that he had incurred with chemotherapy, he approached his oncologist at his next visit about stopping treatment and observing the course of his disease with supportive care alone. Authors' Disclosures of Potential Conflicts of Interest The authors indicated no potential conflicts of interest. NOTES N.L. is supported in part through an American Society of Clinical Oncology Career Development Award. Authors' disclosures of potential conflicts of interest are found at the end of this article. REFERENCES
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19. Brundage MD, Feldman-Stewart D, Cosby R, et al: Phase I study of a decision aid for patients with locally advanced non-small-cell lung cancer. J Clin Oncol 19:1326–1335, 2001 20. Cassileth BR, Soloway MS, Vogelzang NJ, et al: Patients' choice of treatment in stage D prostate cancer. Urology 33:S57–S62, 1989 (suppl 5)[CrossRef] 21. Chadwick DJ, Gillatt DA, Gingell JC: Medical or surgical orchidectomy: The patients' choice. BMJ 302:572, 1991 22. Leighl NB, Butow PN, Clarke SJ, et al: When the goal of treatment is not cure: Development of a decision aid for patients with metastatic colorectal cancer—Presented at Medical Oncology Group of Australia Annual Meeting, Sunshine Coast, Queensland, Australia, August 10–12, 2001
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Copyright © 2004 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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