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Advanced Breast Cancer Patients' Perceptions of Decision Making for Palliative Chemotherapy

From the Department of Psychology and Cancer Research, United Kingdom London Psychosocial Group, Institute of Psychiatry, King’s College, London; Lynda Jackson Macmillan Centre, Mount Vernon Hospital, Northwood; School of Health Sciences and Social Care, Brunel University, Isleworth, Middlesex, United Kingdom.

Address reprint requests to Elizabeth Grunfeld, PhD, Section of Health Psychology, Department of Psychology, 5th Fl, Thomas Guy House, Guy's Hospital, London, SE1 9RT, United Kingdom; e-mail: beth.grunfeld{at}kcl.ac.uk

	ABSTRACT

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions REFERENCES

 
PURPOSE: To examine advanced breast cancer patients' perceptions of the key decision-making consultation for palliative chemotherapy.

PATIENTS AND METHODS: One hundred two women with advanced breast cancer, who were offered palliative chemotherapy, participated in a study-specific semistructured interview examining perceptions of the information they had received and their involvement in the decision-making process. One hundred seventeen interviews included 70 in relation to first-line chemotherapy and 47 in relation to second-line chemotherapy (15 patients were interviewed in relation to both first- and second-line chemotherapy).

RESULTS: Eighty-six percent of patient interviews (n = 101) reported patient satisfaction with the information they received, and 91% (n = 106) reported satisfaction with the decision-making process. Factors most influential in decisions to accept chemotherapy were the possibility of controlling the tumor (45%, n = 53 of patient interviews) and providing hope (33%, n = 28 of patient interviews; 19%, n = 13 being offered first-line chemotherapy v 43%, n = 20 being offered second-line chemotherapy; P = .006). Thirty-eight percent of patient interviews (n = 44) reported the patient as taking an active role in the decision-making process (33%, n = 23 at first-line chemotherapy v 43%, n = 20 at second-line chemotherapy; P = .06).

CONCLUSION: Women offered second-line chemotherapy were more likely to undergo chemotherapy because of the hope it offers and were more likely to take an active role in that decision compared with women who were offered first-line chemotherapy. Compassionate and honest communication about prognosis and likelihood of benefit from treatment may help to close the gap between hope and expectation and enable patients to make fully informed decisions about palliative chemotherapy.

	INTRODUCTION

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Although chemotherapy is used widely in the management of patients with advanced breast cancer, the decision to use chemotherapy is often complex and difficult. The complexity is, in part, a result of the absence of a cure for advanced breast cancer, although chemotherapy may prolong life by several months or even years.¹ The outcomes of chemotherapy cannot be guaranteed, and even objective disease response does not necessarily imply a benefit to the patient in terms of improved quality of life.² Furthermore, the chemotherapy itself may be associated with adverse effects such as nausea, hair loss, and fatigue, leading to a reduction in quality of life.³ A study examining breast cancer patients' reports of well-being after first-line chemotherapy revealed that only 26% of patients reported feeling better, 19% reported feeling the same, and 22% reported actually feeling worse than they did before treatment.⁴

Oncologists prescribe chemotherapy for a range of reasons including prolonging life, managing symptoms, delaying the onset of new symptoms, improving patient activity and mobility, and maintaining a sense of hope.^5,6 There is concern that patients with advanced cancer pursue chemotherapy without a clear understanding of their prognosis and management options, including supportive care alternatives.^7,8 In particular, there is concern that patients' understanding of the outcomes of chemotherapy may be overly optimistic.⁷ They may be willing to accept anticancer treatment even if it provides a small chance and short duration of benefit.⁹

Ensuring that patients receive appropriate information about the prognosis of their cancer and the likely outcomes of treatment and involving them in the clinical decision-making process related to the management of their cancer may facilitate the process of informed decision making regarding their care.¹⁰ However, providing detailed information to those who do not want it and imposing choice on those who prefer their doctors to assume responsibility for making treatment decisions is likely to be harmful.^11,12 Two issues are important when discussing complex treatment options with patients.⁸ First, the information given should match the patients' preferences for the amount and type they need and want. Second, the extent to which patients are involved in the decision-making process should be congruent with their actual desire for participation.

The study described here examined advanced breast cancer patients' perceptions of the decision-making consultation for palliative chemotherapy. It focused on women being offered chemotherapy as a first- and/or second-line treatment and describes the extent to which patients' needs for information and involvement in the clinical decision-making process were met.

	PATIENTS AND METHODS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions REFERENCES

 
A consecutive series of patients with advanced breast cancer who accepted first- and/or second-line chemotherapy at two cancer centers were eligible to participate in this study. Patients were excluded if they did not have a good understanding of English. The cancer centers were both organizations providing a full range of specialist diagnostic and treatment modalities for cancer patients, along with basic, translational and clinical research and related education in the London region of the United Kingdom. Patients were recruited between September 2000 and February 2003. Patients were approached to take part in the study after the key clinical consultation with their breast oncologist in which either first- or second-line chemotherapy was discussed for the management of their disease progression. The consultations took place between the patients and one of 16 oncologists involved in the study (seven consultants and nine specialist registrars). Although some of the content of the individual consultations varied, each patient in the study was informed about the proposed treatment options by a medical or clinical oncologist. This comprised an explanation of the nature and extent of the patient's disease and how this related to her symptoms, an explanation that there was reasonable chance that the chemotherapy could control the disease, and a discussion of possible adverse effects. However, there was variation between the oncologists in the extent to which they were explicit in their information giving about the disease prognosis, incurability, and the likelihood of benefit from treatment. Reasons underlying this variation were, in part, related to the oncologists' intrinsic communication style and approach to doctor-patient communication. Other factors included the oncologists' perceptions of the woman's vulnerability, including her desire for prognostic information, her levels of psychological distress, and social situation.

The decision to approach patients for recruitment onto the study was dependent on the agreement of the patient's oncologist. Each patient underwent a study-specific semistructured interview comprising a combination of 15 closed fixed-choice questions and six open-ended questions. The interviews lasted 40 to 60 minutes and were conducted in a private room by a research nurse. This interview usually occurred at the hospital visit subsequent to the key clinical decision-making consultation. The research nurse recorded verbatim in writing the patient's responses to the questions in the semistructured interview. The interviews were also tape recorded. The interview questions were developed from a literature review and through discussion with relevant experts (medical and clinical oncologists, palliative care specialists, and psychosocial oncologists including psychologists and a psychiatrist). The interview schedule was subject to piloting with 13 patients with advanced breast cancer who had undergone a clinical consultation regarding chemotherapy. After the piloting, interview items that had been misunderstood or deemed upsetting were either altered or excluded from the interview. Ethical approval for the study was obtained from the respective local ethics committees.

Section 1: Recall of Key Clinical Decision-Making Consultation
Section 1 comprised four open-ended questions focusing on the main topics discussed during the key consultation, including plans for treatment, perceptions of how treatment would benefit, and adverse effects of treatment. In addition, four fixed-choice questions were included about overall recall of the consultation, concerns regarding adverse effects, the doctor's manner in the consultation, and overall levels of satisfaction with the consultation (answered on 5-point scales).

Section 2: Perceptions of Information Disclosure
Section 2 comprised six fixed-choice questions about the provision of information concerning cancer management (detailed in Table 3). Three questions were answered on a 5-point scale, and three required a yes or no answer.

View larger version (22K): [in this window] [in a new window]   Fig 1. Patients' perceptions of their participation in the decision-making process. FLCT, first-line chemotherapy; SLCT, second-line chemotherapy.

The responses to the fixed-choice scaled questions that were originally 5 points were collapsed to 3 points for the purpose of presentation in the tables. For scales that were originally rated as yes or no, only the percentages of patients who responded yes are presented in the tables. Because of the small number of observations for some of the categories, the Fisher's exact test was used to compare the category responses on the proportions of patients being offered first- and second-line chemotherapy. Only the statistically significant findings are reported in the text (P .05). The ² test was used to compare patient responses on their degree of involvement in the decision-making process using the adapted Degner and Sloane scale.

	RESULTS

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The majority of patients with advanced breast cancer who were offered chemotherapy during the study period accepted this treatment option. Only eight patients refused chemotherapy and opted for supportive care only. This reflects the predominant oncology research culture of the two cancer centers. Because of the distinct nature of these eight patients, they were excluded from the study. All patients who were offered and accepted chemotherapy and who were approached consented to participate in the study. Seventy interviews were completed with patients after a key consultation in which first-line chemotherapy was discussed, and 47 interviews were completed after a key consultation in which second-line chemotherapy was offered. Fifteen patients underwent both first- and second-line chemotherapy and were interviewed after the key consultation related to each treatment. The profiles of the 15 patients' responses to the interview after the key consultation for second-line chemotherapy were similar to the profiles of patients who completed only the second-line chemotherapy interview, and thus, these interviews were included in the analysis. Therefore, 117 interviews (from 102 patients) were included in both the quantitative and content analyses. The demographic and clinical characteristics of the patients are listed in Table 1. The patients recruited from the two cancer centers had similar characteristics. The average duration between the key clinical decision-making consultation and the research interview was 20 days (range, 1 to 60 days) for patients receiving first-line chemotherapy and 13 days (range, 1 to 63 days) for patients receiving second-line chemotherapy. A maximum time limit of 63 days between the key consultation and the research interview was set.

Section 2: Perceptions of Information Disclosure
Overall, in 86% of patient interviews (n = 101), patients reported satisfaction with the information given to them in the key consultation. Although the majority of patient interviews reported that the patients were given the right amount of information (83%, n = 97), 14% (n = 16) reported that the patients had been provided with too little information (Table 3). Similarly, 83% of patient interviews (n = 97) reported that the information was delivered at an appropriate pace. However, 21% of patients (n = 15) offered first-line chemotherapy reported that the delivery had been too quick, compared with only 4% of patients (n = 2) offered second-line chemotherapy (P = .01). Although 90% of patients (n = 105) reported that they felt there was enough time to ask questions, only 50% (n = 58) did in fact ask questions. More patients offered first-line chemotherapy asked questions compared with patients offered second-line chemotherapy (59%, n = 41 v 37%, n = 17, respectively; P = .02). Eleven percent of all patients (n = 13) reported not understanding everything they had been told by their doctor. Although a minority of patients were dissatisfied with different aspects of the information disclosure, it was not the same patients who responded negatively to each question.

Section 3: Perceptions of the Clinical Decision-Making Process
Most patients reported that the oncologist had directly recommended chemotherapy as a treatment (92%, n = 108; Table 4). Similarly, in most patient interviews, patients reported agreement with their doctor about the treatment decision (94%, n = 110). Although 84% of patients (n = 91) reported that the time taken to reach the decision was about right, 15% of patients (n = 18) felt that the time taken was too long. Overall, the majority of patients (91%, n = 106) reported satisfaction with the process by which the decision to receive treatment was reached. However, more patients offered second-line chemotherapy reported dissatisfaction with how the treatment plan was decided compared with patients offered first-line treatment (11%, n = 5 v 1%, n = 1, respectively; P = .05). We found no concordance between patients expressing dissatisfaction with information disclosure and patients expressing dissatisfaction with the decision-making process in relation to chemotherapy.

The person who most influenced the patient's decision to have chemotherapy was the oncologist (74%, n = 86). Patients offered first-line chemotherapy were more likely to be influenced by the oncologist than patients offered second-line chemotherapy (81%, n = 57 v 62%, n = 29, respectively; P = .02). Thirty-nine percent of patients (n = 46) reported that family members influenced their decision, whereas 28% (n = 33) reported that their partners in particular were a key influencing factor. The factors that most influenced patients in making their decision were the chance that the treatment would control the cancer (45%, n = 53 of all patient interviews) and the fact that the treatment provided the last hope or option (28%, n = 33 of all patient interviews; Table 5). Offering hope was a factor for 43% of patients (n = 20) offered second-line chemotherapy compared with 19% of patients (n = 13) offered first-line chemotherapy (P = .006). The desire to be cured was an influential factor for 10% of patients (n = 7) offered first-line treatment compared with no patients offered second-line treatment (P = .04).

	DISCUSSION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions REFERENCES

 
This study examined patients' recollection of the discussion of chemotherapy for advanced breast cancer. The majority of patients being offered palliative chemotherapy in this study reported that their needs for information and involvement in clinical decision making were met. It is of concern that a significant minority of women (10% to 20%) described that their needs for information or involvement in decision making were not met. However, patients who expressed dissatisfaction with individual aspects of the decision-making consultation did not represent a cohort of patients with consistently negative reports on all aspects. The information needs of patients with curable cancer are well documented; broadly, patients tell us they want as much information as possible¹⁵ but that it needs to be tailored to the individual in terms of the amount and the pace.¹⁶ A similar pattern of need is emerging for patients with advanced cancer generally, although information requirements around disease prognosis in particular are less clear.^15,16 Kirk et al¹⁷ highlight the complexities involved in communication about prognosis to patients with advanced cancer. They describe the following six attributes as necessary for sensitive information sharing: playing it straight (extent to which health care providers are honest and direct in conveying information), staying the course (extent to which messages given by the health care provider indicate that they will not abandon the patient/family as the illness progresses), giving time (extent to which health care providers offer the patient and family enough time during the information discussions), showing you care (extent to which verbal/nonverbal messages conveyed by health care providers are delivered in a compassionate and empathetic manner), making it clear (extent to which health care providers convey information in ways that the patient/family can understand), and pacing information (extent to which health care providers offer the patient and family enough time during the information discussions). These attributes represent a considerable challenge to the communication skills of oncologists and others involved in cancer care.

Our study indicates that the informational needs of women with advanced breast cancer being offered treatment with chemotherapy vary according to the stage of their disease progression. Women who are being offered first-line chemotherapy seem to ask for more information, involve themselves in more discussion, and elicit more explanations than women who are being offered second-line treatment. This is in agreement with other work indicating that patients more recently diagnosed with metastatic disease are more likely to receive information than patients with more longstanding disease.⁸ Patients being offered second-line chemotherapy in our study seem not to have sought or elicited information disclosure as actively, probably because they had prior knowledge and experience of the treatment process. Or, they may be aware of the poorer evidence base for second-line chemotherapy.

Much of the work on patient involvement in decision making has involved early breast cancer and used the scale developed by Degner et al¹⁸ in Canada. Most of the women in these studies expressed a desire to collaborate with their doctors in decision making. Only approximately 30% to 40% of patients achieved their preferred role; patients who did not were generally less involved than they wanted to be, rather than more involved.¹⁸ There seems to be a poor correlation between the patient and doctor perceptions of the patient's decision-making preference in early breast cancer.¹⁹ Preferences for involvement in decision making in advanced cancer seem to be more variable, according to a recent systematic review.²⁰ Overall, approximately two thirds of patients with advanced cancer would like to be involved in decision making to some degree.^16,19,21,22 Bruera et al²³ found that, among patients attending a palliative care outpatient clinic, 20% preferred an active role, 63% preferred shared decision making, and 17% preferred a passive role. It seems that patient’s desire to be involved in treatment decision making changes over the course of their illness.^24,25 There is some evidence to suggest that, as patients experience disease progression, they tend to relinquish control,²⁴ whereas other work suggests an increasing preference for shared decision making with disease progression.^16,26 Our study is unique in that it examines the involvement of advanced breast cancer patients in two treatment decision points during disease progression. The findings suggest that a patient's involvement in the decision-making process concerning treatment varies according to the stage of their disease progression. Patients who were being offered first-line chemotherapy were more likely to report having taken a passive role in the process compared with patients who were being offered second-line treatment, who were more likely to take an active role. The findings in this study show that women offered first-line chemotherapy seek more information or explanation and, yet, are more passive in the decision-making process than women offered second-line chemotherapy. It could be argued that patients offered first-line chemotherapy are naïve about metastatic disease and palliative chemotherapy and, therefore, require more information and greater physician involvement in the treatment decision-making process. Patients offered second-line chemotherapy might be seen as expert patients who know what chemotherapy is like and have already rehearsed the arguments for and against treatment. Greater understanding is needed of the particular ways in which patients' needs for involvement in treatment decisions change over the course of their illness. The evidence to date underlines the importance of re-evaluating these needs on an ongoing basis throughout the patient's illness trajectory.

A limitation of this study is that it is based on patients' recall of the key decision-making consultation. Because the consultations themselves were not recorded, it is not possible to know to what extent that recall reflects the actual information disclosure and participation in decision making. This limitation was a consequence of the concerns that the oncologists involved in the study had about undertaking recordings. They felt that such an approach would be insensitive to the patients during such a critical and challenging consultation. Although recording sensitive consultations involving patients with early cancer has become more acceptable over the last 20 years, relatively few studies to date have involved recording the management discussion of patients with incurable disease. A notable example is the work of Gattellari et al⁸ in Australia. The findings of our study based on patient recall of a key clinical consultation require validation. Such validation should involve the replication of this research and comparison of patient recall and the actual contents of the key consultation itself based on a recording. This would also provide evidence of whether patients are able to reliably recall the clinical discussion. A potential bias in this study is that patients may have responded to the questions about the quality of their care more positively if they believed that their oncologist was aware of their participation. Patients may not have wanted to appear negative about the oncologist who was working to improve their quality of life and potentially prolong their life. The patients were, of course, ensured of the confidentiality of their participation and that the research nurse, who conducted the interviews, was not involved in their clinical care. However, we acknowledge that these procedures related to confidentiality and the independence of the research do not control for the women's intrinsic sense of indebtedness to the oncologists on whom they may perceive their life to depend. This issue is well recognized and documented.²⁷

Maintaining a sense of hope is highlighted in this study as a key motive for accepting treatment with chemotherapy among women with advanced breast cancer and one that seems to become more important as the objective likelihood of benefit from treatment diminishes. Nearly half of the women offered second-line treatment in this study described the importance of chemotherapy in maintaining a sense of hope compared with a quarter of women offered first-line chemotherapy. Having hope is clearly a central aspect of patient well-being at all stages of the cancer journey.^17,23,27 The challenge for those involved in cancer care is how best to foster and maintain hope that is appropriate to the patient's situation. How does the clinician match the realistic expectations of the treatment to the patient's hopes, and how is this congruence facilitated and communicated? This is particularly difficult when the patient's disease carries a poor prognosis and the anticancer treatment offers a low chance and short duration of benefit. The offer of chemotherapy by the oncologist and the acceptance by patients with advanced disease may well mitigate the feelings of helplessness that accompany cancer that is beyond hope of cure. The patients in our study seemed generally well informed but may not have been aware of their prognosis or alternatives to anticancer treatment. Other work has demonstrated the misunderstandings in patients with advanced cancer of these issues^7,8,28-30 and that patients are often not told about the alternative of supportive care as opposed to active treatment.³¹ Exploring these issues with compassionate and honest communication may help to close the gap between hope and realistic expectation and enable patients to make truly informed decisions about palliative chemotherapy.

	Authors' Disclosures of Potential Conflicts of Interest

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions REFERENCES

 
The authors indicated no potential conflicts of interest.

	Author Contributions

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions REFERENCES

 

Conception and design: Elizabeth A. Grunfeld, E. Jane Maher, Teresa Young, Michael A. Richards, Amanda J. Ramirez Financial support: Michael A. Richards, Amanda J. Ramirez Administrative support: Gay Walker, Alex M. Westcombe Provision of study materials or patients: Elizabeth A. Grunfeld, E. Jane Maher, Susannah Browne, Teresa Young Collection and assembly of data: Susannah Browne, Pippa Ward, Bella Vivat, Gay Walker, Cathy Wilson Data analysis and interpretation: Elizabeth A. Grunfeld, Susannah Browne, Belle Vivat, Henry W. Potts, Amanda J. Ramirez Manuscript writing: Elizabeth A. Grunfeld, Amanda J. Ramirez Final approval of manuscript: Elizabeth A. Grunfeld, E. Jane Maher, Susannah Browne, Pippa Ward, Teresa Young, Bella Vivat, Gay Walker, Cathy Wilson, Henry W. Potts, Alex M. Westcombe, Michael A. Richards, Amanda J. Ramirez

 

	Acknowledgment

 
We thank the patients and clinicians who gave their time to participate in this study.

	NOTES

 
Supported through project Grant No. NCO/GO1 from the National Health Services Cancer Research and Development Programme and by Cancer Research UK.

Presented in part at the 2nd Annual Conference of the American Psychosocial Oncology Society, Phoenix, AZ, January 27-29, 2005.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

	REFERENCES

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions REFERENCES

 
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Submitted March 9, 2005; accepted December 6, 2005.

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