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Journal of Clinical Oncology, Vol 23, No 9 (March 20), 2005: pp. 2012-2019 © 2005 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.07.104 Attitudes of Patients With Incurable Cancer Toward Medical Treatment in the Last Phase of LifeFrom the Departments of Public Health and Medical Oncology, Erasmus MC, University Medical Center Rotterdam, Rotterdam; and Helen Dowling Institute, Center for Psycho-oncology, Utrecht, the Netherlands Address reprint requests to E. Voogt, MA, Department of Public Health, Erasmus MC, University Medical Center Rotterdam, P.O. Box 1738, 3000 DR Rotterdam, the Netherlands; e-mail: e.voogt{at}erasmusmc.nl
PURPOSE: When cancer has advanced to a stage in which cure becomes unlikely, patients may have to consider the aim of further treatment. We studied the relationship of patients' attitudes toward treatment with advance care planning and the development of these attitudes after diagnosis of incurable cancer. PATIENTS AND METHODS: Patients with incurable cancer were interviewed and asked to fill out a written questionnaire about their attitudes concerning life-prolonging treatment and end-of-life decision making. These questions were repeated after 6 and 12 months. RESULTS: One hundred twenty-two patients (mean age, 64 years; standard deviation, 10.5 years; 53% women) participated in the study. Patients' attitudes toward treatment could be categorized into the following three different profiles: striving for quality of life, striving for length of life, and no clear preference. Patients who were older, more tired, or had less positive feelings and patients who had more often taken initiatives to engage in advance care planning were more inclined to strive for quality of life than others. Patients with a history of cancer of less than 6 months were more inclined to prefer life prolongation than patients with a longer history of cancer. During follow-up, no changes in attitudes toward treatment were found, except for patients with a short history of cancer in whom the inclination to strive for length decreased. CONCLUSION: Patients who appreciate advance care planning were more inclined to strive for quality of life than other patients. Shortly after the diagnosis of cancer, patients typically seem to prefer life-prolonging treatment, whereas quality of life becomes more important when death is nearing.
When cancer has advanced to a stage in which cure becomes unlikely, decisions have to be made about the aims of further medical treatment. Such treatment can be primarily aimed at prolonging life or at the alleviation of suffering or improvement of quality of life. Patients' preferences concerning the aims of medical treatment and the balance between benefits and side effects of different treatment options are important in medical decision making when the end of life is nearing.1 In a study among patients with metastatic cancer, patients' actual treatment choice was most strongly predicted by patients' treatment preference, and this preference was explained by patients' attitudes toward treatment.2 It is known that cancer patients vary in their attitudes and preferences concerning the aims of medical treatment. Stiggelbout et al3 found that younger cancer patients were more likely to strive for length of life, whereas older patients were more likely to strive for quality of life. Cancer patients who thought that they would survive for at least 6 months were more likely to favor life-prolonging therapy over comfort care than cancer patients who thought they had at least a 10% chance of not surviving the next 6 months.4 Furthermore, treatment preferences of seriously ill patients who had a limited life expectancy were found to depend on the burden of the treatment, the expected outcome of treatment, and the likelihood of that outcome.5 In a European study, physicians reported that end-of-life decisions, such as nontreatment decisions and the alleviation of symptoms with a possible life-shortening effect, most often concerned incompetent patients.6 However, a vignettes study among oncologists showed that they tend to follow their patients' wishes; oncologists more often preferred palliative chemotherapy for patients who wished to be treated than for patients without such an outspoken wish.7 Therefore, discussion of patients' preferences at an early stage of their disease or completion of an advance directive might enable patients to be involved in medical decision making concerning the end of their life. However, several studies have shown that advance care planning is mostly ineffective because advance directives are often vague and the factual situation is often different from the hypothetical situations described in advance directives.8-11 Furthermore, only a minority of adults have filled out an advance directive.11 Completion of an advance directive may be stressful for patients because it confronts people with their own possible future deterioration or suffering. We studied the distribution of patients' attitudes toward medical treatment, how these were related to patient characteristics, and the development of these attitudes over time in a group of patients with incurable cancer. Furthermore, we examined the relationship between patients' attitudes toward treatment and engagement in advance initiatives to participate in medical decision making concerning their own end of life.
Patients Outpatients with breast cancer, colorectal cancer, ovarian cancer, lung cancer, or prostate cancer were asked to participate in the study by 45 oncologists, pulmonologists, urologists, and radiotherapists in the south and southwestern part of the Netherlands. Patients were included within 2 months of being informed that their cancer was, in principle, incurable. We defined objective criteria for each type of cancer to include an unselected group in whom survival is less than 2 years in the majority of patients (Table 1). 12 Patients were included only after they had given their written informed consent.
The Questionnaire and the Interview The patients filled out a written questionnaire that addressed demographic factors (age, sex, marital status, education, religion, and having children) and psychological status. Positive and negative feelings in the 2 weeks that had preceded the interview were measured with the Positive and Negative Affect Schedule.13,14 The Positive and Negative Affect Schedule contains two subscales, each consisting of 10 items; a high positive affect score reflects a state of high energy, full concentration, and pleasurable engagement, and a high negative affect score indicates a high level of distress. Patients were also interviewed personally at home. The interviewers were prepared for interviewing patients with advanced cancer during a 2-day course in interview techniques. Validated instruments were used in the interview whenever possible. The interview addressed patients' attitudes toward treatment and initiatives to anticipate medical decision making at the end of life. The Quality Quantity Questionnaire was used to assess patient's attitudes concerning treatment aimed at quality or length of life.3 This questionnaire has been shown to be feasible for use in various groups of cancer patients. Patients had to indicate how strongly they agreed or disagreed with eight items on a 5-point Likert scale. A principal components analysis was carried out to analyze the relationships between the items of the Quality Quantity Questionnaire and to identify underlying subscales to confirm the findings of Stiggelbout et al.3 We used the orthogonal varimax rotation method, which facilitates interpretation by maximizing high correlations between factors and variables and minimizing low correlations.15 The factor solution was based on the eigenvalues (> 1.0). The items could be grouped into two factors (both consisting of four items); one factor contained items indicating an inclination to strive for length of life regardless of an impaired quality of life (L-scale), whereas the other factor consisted of items indicating an inclination to strive for quality of life at the expense of survival (Q-scale).3 A higher score on the scales means that someone is inclined to strive more strongly for length or quality of life. In our population, only one item loaded on both factors, but it loaded more strongly on the Q-scale. Patients' initiatives to anticipate medical decision making at the end of their life were addressed by self-constructed questions. We asked patients whether they had refused any potentially life-prolonging treatment, had discussed their wishes concerning medical treatment with their general practitioner, other healthcare professionals, or their relatives, or felt a need for such a discussion. We also asked the patients whether they had filled out an advance directive. Both these questions and the Quality Quantity Questionnaire were repeated after 6 and 12 months of follow-up. The interview also addressed factors that might be related to attitudes toward treatment, such as the time since the first diagnosis of cancer, the antitumor treatment the patient had received, and planned antitumor treatment. The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C3016,17 was used to measure global quality of life, pain, and fatigue. The internal consistency of these scales of the European Organisation for Research and Treatment of Cancer ranged from moderate to good (Cronbach's alpha, 0.77 to 0.90).
Statistical Analysis
Patients Of 200 identified patients, eight died before an interview could take place. Of the 192 eligible patients, 128 agreed to participate (response rate, 66%). Reasons mentioned not to participate were participation was expected to be too burdensome (n = 29) or patients had a poor physical condition or comorbidity (n = 18). For 17 patients, the reason was unknown. Participants were, on average, younger than nonparticipants (mean age, 63.6 v 67.3 years, respectively; P = .02). There were no differences between participants and nonparticipants regarding sex, primary diagnosis, metastases, comorbidity, and the application of chemotherapy, radiotherapy, or surgery. Sometimes patients agreed to participate and filled out the written questionnaire but were unable or unwilling to be interviewed on all topics of the interview schedule. Therefore, for six patients, data on attitudes toward treatment were missing.
Attitudes Toward Medical Treatment
The associations between personal and disease-specific characteristics of the patients and their attitudes toward treatment are listed in Table 3. Younger patients were more inclined to prefer life prolongation. In contrast, patients who were older or more tired and patients who had less positive feelings were more inclined to strive for quality of life. Patients living without a partner and patients who did not receive chemotherapy also had relatively high scores on the Q-scale. When we adjusted for the effect of age in a linear regression analysis, the associations between the inclination to strive for quality of life and fatigue and positive feelings remained significant, whereas having received chemotherapy was no longer related to the Q-scale. No differences in attitudes toward treatment were found for sex, having children, education, having religious beliefs, and type of cancer. Furthermore, we found no different scores on the Q- and L-scale for patients who had received radiotherapy (36% of all patients) compared with patients who had not received radiotherapy and for patients who had received hormonal therapy (21% of all patients) compared with patients who had not received hormonal therapy (data not shown).
Attitudes Toward Treatment and Advance Care Planning At the time of inclusion, 20% of all patients had discussed their wishes concerning medical treatment at the end of life with a healthcare professional (most often their general practitioner or clinical specialist), whereas 25% felt a need to do so (Table 4). Furthermore, 39% of patients had discussed such wishes with relatives, and 19% felt a need to do so. Wishes discussed concerned pain management, place of death, euthanasia, and conditions for forgoing treatment. Patients who had discussed their wishes were more inclined to strive for quality of life and less inclined to strive for length of life. Only 10 patients had filled out an advance directive (data not shown in Table 4); these patients were less inclined to strive for length of life than patients who did not complete an advance directive (mean score on L-scale, 10.4 v 13.6, respectively; P = .01). Six patients who had refused a potentially life-prolonging treatment were also less inclined to strive for life prolongation compared with other patients (mean score on L-scale, 9.7 v 13.5, respectively; P = .02).
Development of Attitudes Toward Treatment Over Time The patients' L- and Q-scores at inclusion were also related to several characteristics of the disease course (Table 5). Patients with a short history of cancer tended to be more inclined to prefer life prolongation than patients with a longer history of cancer (P = .06). In contrast, patients who died within 6 months after inclusion had, at inclusion, higher Q-scores than patients who survived for more than 6 months (P = .01). Of 67 patients who participated for 6 months or more in our study, 43% had discussed their wishes concerning end-of-life treatment with a healthcare professional during the first 6 months of follow-up, but this was not related to the scores on the L- and Q-scale at baseline. Of the patients who participated for 6 months or more in our study, 12% had refused a life-prolonging therapy during the first 6 months of follow-up; these patients were more inclined to strive for quality of life than others (mean Q-score, 18.3 v 15.2; respectively; P = .00). After 6 months of follow-up, only five patients (7%) had completed an advance directive, and of these patients, only one filled out the advance directive during the follow-up period. Patients who had completed an advance directive after 6 months of follow-up were, at baseline, more inclined to strive for quality of life than patients who had not completed an advance directive (mean Q-score, 19.6 v 15.2, respectively; P = .00) and less inclined to strive for life prolongation (mean L-score, 9.2 v 13.5, respectively; P = .02)
Furthermore, we did not find changes in attitudes toward treatment 6 or 12 months after inclusion, except for patients with a history of cancer of less than 6 months at inclusion, in whom L-scores decreased (mean L-score, 14.2 at baseline v 12.9 at 6 months; n = 36; P = .02), whereas the Q-scores remained stable over time (mean Q-score, 14.8 at baseline v 14.5 at 6 months; n = 35; P = .75).
Patients with advanced cancer vary in their attitudes concerning the use of life-prolonging treatment. The scores on the scales of the Quality Quantity Questionnaire were consistent with the scores found by Stiggelbout et al3 in a group of patients with cancer at various stages of the disease. Furthermore, at baseline, about one third of the patients had relatively high L-scores and low Q-scores, which may be interpreted as indicating a relatively clear preference for the use of life-prolonging treatment, even if it would impair their quality of life. Navari et al18 also showed that many patients with advanced cancer preferred to be treated, although the chance of prolonging life was small. This preference for potential life-prolonging therapy may be caused by the patient's wish not to give up hope19 or by a poor understanding of the prognosis.4 Another third of our patients had low L-scores and high Q-scores, which may represent an inclination to refrain from life-prolonging intervention because quality of life is considered more important than length of life. The remaining one third of our patients did not have a clear preference for quality or length of life. These patients seemed unable (low scores on both scales) or unwilling (high scores on both scales) to express a preference concerning the aim of medical treatment. Apparently, quality of life and prolonged survival have to be distinguished as separate axes and cannot be interpreted as the ends of one single, continuous scale. This is supported by the two factors that were identified by the principal-component analysis. An inclination to strive for quality of life and to attach less importance to prolongation of life is related to older age, experiencing fatigue, and having a low level of positive feelings. The variability in attitudes toward treatment found in our patients is consistent with studies in elderly patients, other groups of cancer patients, and severely ill patients.3-5,20 The association between having received chemotherapy and striving for quality of life is probably a result of the fact that chemotherapy was predominantly administered to relatively young patients who, more often than others, had breast, ovarian, or colorectal cancer. Only a small minority of the patients in our study had completed an advance directive or had refused a potentially life-prolonging treatment. Patients' involvement in actual medical end-of-life decision making was mostly limited to discussing their wishes with a healthcare professional or with relatives. Patients who had discussed their wishes or who had taken initiatives to participate in end-of-life decision making were more inclined to strive for quality of life at the possible expense of length of life than others. Apparently, patients' concerns about the perspective of receiving medical treatment that is predominantly aimed at life prolongation in the last phase of their lives more often result in advance care planning than concerns that such treatment will be forgone. Whether a preference for medical care aimed at quality of life is indeed less often granted than a preference for prolonging life cannot be concluded from our study. Teno et al21 found, however, that more than one third of the patients who preferred comfort care reported that the medical care they received was focusing on extending life and, therefore, was inconsistent with their goals. We found that patients with a short history of cancer tended to be more inclined to prefer life prolongation than patients with a longer history of cancer. In a longitudinal study, Danis et al22 found that patients were more likely to desire more treatment after they had experienced a health-threatening situation, such as having been hospitalized, having had an accident, or having become more immobile. Accordingly, patients in our study may have been more inclined to strive for length of life shortly after they were informed about the diagnosis of cancer than before. In our study, we did not find changes in attitudes toward treatment during 12 months follow-up, except for patients with a history of cancer of less than 6 months, in whom the inclination to strive for length of life decreased. It is suggested that quality of life gains importance when death is nearing. Weeks et al4 found that cancer patients with a more accurate understanding of their poor prognosis were more inclined to favor comfort care over life-extending therapies. Furthermore, in our study, patients who died within 6 months after inclusion were, at inclusion, more inclined to strive for quality of life than patients who survived for more than 6 months. Thus, changes in attitudes may predominantly occur shortly after the primary diagnosis of cancer and shortly before death. The fact that, in most studies, treatment preferences were found to be rather stable over time20,23 may be explained by their follow-up windows, which are often in between these extremely significant points in time. Furthermore, the limited number of patients for whom 12 months of follow-up data were available restricts drawing firm conclusions on the stability of attitudes in our study. Our study has some limitations. Our group of patients was probably somewhat selected because patients with a very poor health status and patients who died shortly after the diagnosis of advanced cancer could not be interviewed. Furthermore, most patients who declined to participate did not want to talk about their disease because they considered it too burdensome. Another limitation is the relatively small number of patients. Because of a poor prognosis, only a small group of patients could be involved in the analyses over time, which makes further longitudinal research to confirm our findings necessary. We conclude that attitudes toward medical treatment vary in cancer patients in whom the cancer is, in principle, incurable. One third of the patients can be classified as striving for length of life, whereas another third can be classified as striving for quality of life; the remaining third of the patients seemed unable or unwilling to express a preference concerning the primary aim of treatment. Older patients, patients who are more tired or who have less positive feelings, and patients who appreciate advance care planning are more inclined to strive for quality of life. Discussing wishes concerning medical treatment with doctors predominantly seems to result from patients' attitude to give priority to the quality over the length of life. This suggests that, according to many patients, the standard medical treatment offered in the last phase of life is focused on length of life, whereas a preference for quality of life requires discussion with doctors. Further research is necessary to explore patients' expectations and understanding of the aim of medical treatment at the end of life. A proactive attitude of oncologists and other doctors towards discussing patients' perspectives on anticipatory decision making may contribute to patient-centered end-of-life care for all types of patients.
The authors indicated no potential conflicts of interest.
We thank the patients, doctors, and nurses who participated in this study, and we thank J.C.J.M. de Haes for helpful comments on this article.
Supported by the Dutch Ministry of Health, Welfare and Sport and the Center for Development of Palliative Care–Rotterdam. Authors' disclosures of potential conflicts of interest are found at the end of this article.
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23. Patrick DL, Pearlman RA, Starks HE, et al: Validation of preferences for life-sustaining treatment: Implications for advance care planning. Ann Intern Med 127:509-517, 1997 Submitted July 19, 2004; accepted December 14, 2004. This article has been cited by other articles:
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Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
), two patients; (
), three patients; (
), five patients; (*), the median length score is 14, and the median quality score is 16.
