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Journal of Clinical Oncology, Vol 26, No 20 (July 10), 2008: pp. 3372-3379 © 2008 American Society of Clinical Oncology. DOI: 10.1200/JCO.2008.16.6074 Disclosure of Incurable Illness to Spouses: Do They Want to Know? A Swedish Population-Based Follow-Up Study
From the Division of Clinical Cancer Epidemiology, Department of Oncology-Pathology, Karolinska Institutet; Stockholms Sjukhem Foundation, Stockholm; Division of Clinical Cancer Epidemiology, Department of Oncology, Sahlgrenska Academy, Göteborg's University, Göteborg, Sweden; and the Center of Public Health Sciences, University of Iceland, Reykjavik, Iceland Corresponding author: Hanna Dahlstrand, MD, PhD, Radiumhemmet, Department of Oncology, Karolinska University Hospital, 171 76, Stockholm, Sweden; e-mail: hanna.dahlstrand{at}karolinska.se
Purpose Awareness of the cancer patient's terminal state decreases the risk of psychological morbidity of the bereaved. We wanted to determine whether male spouses of cancer patients who died from their disease had received information that the illness was incurable and to determine their preferences of disclosure. Participants and Methods The study included 907 widowers whose wives had died of cancer. In an anonymous questionnaire, we asked whether the widower had received information that his wife's illness was incurable and about his attitudes towards receiving this information. Results Six hundred ninety-one widowers (76%) participated. Eighty percent of the widowers reported that they were told that the wife's cancer was incurable, and 21% reported that they had been informed within 1 week before the patient's death. Although 14% of the widowers did not think the next of kin should be told immediately when the patient's cancer is beyond cure, 39% of the men did not want the patient to be immediately informed. Furthermore, 71% of the men who were never informed about the incurable illness believed that the next of kin should receive that information immediately. Conclusion Although a large majority of men prefer an immediate disclosure about the incurable stage of their wife's illness, 41% of the husbands received this information during the last week of the patient's life or not at all. These findings indicate that there is room for improvement in the level of communication between health providers and the husbands of women with incurable cancer.
Patients with life-limiting illness as well as their caregivers have, in general, a high level of informational needs.1 In fact, communication with health care professionals has been recognized as one of the most important end-of-life issues for quality of care.2 Family members play a key role in nursing and supporting the terminally ill cancer patient, and information empowers them in their care of their dying relative.3 Moreover, disclosure of information to family caregivers (eg, spouses) on the incurable nature of the disease influences the length of time the spouse is aware of the impending death (awareness time).4 Furthermore, the spouse's awareness time and preparedness at the time of death have been found to reduce their long-term risk for depression and anxiety4 (Hauksdóttir, manuscript submitted for publication). Telling the patient or the family caregiver that curative treatment is to be stopped is a major stressor, even for senior clinicians in cancer medicine.5-7 In recognition of this, several recommendations and guidelines on communication about distressful news have recently been made available.8-10 The majority of cancer patients have been reported to prefer honest information about the severity of the illness,11,12 although the preference may vary in different cultures13 and be affected by education, age, sex, and stage of disease.9,14 However, few studies have investigated such disclosure preferences among bereaved spouses of incurably ill cancer patients. Using the Swedish population-based registers, we performed a population-based study including 907 men whose wives had died of cancer 4 to 5 years earlier. We investigated whether the widowers had received information on the incurability of their wife's illness, their attitudes towards receiving such information, and whether demographic factors affected the actual reception and preferences about receiving such information.
Study Population We identified 3,473 women in Sweden who died of breast, ovarian, or colon cancer in 2000 or 2001 and who lived in the Northern Sweden, Gothenburg, Stockholm, or Uppsala health regions at the time of death. A cancer diagnosis recorded 14 days or more before death was required. The women were identified in the Swedish Cause of Death Registry, which was linked to the Swedish Cancer Registry. From the Swedish Population Registry, we determined whether the women were married at the time of death and whether their husbands were alive at the time of study. A husband was identified as eligible for the study if he was 80 years or younger at the time of the study, was born in the Nordic countries, had a registered telephone number, understood Swedish, and had been living with his wife at the time of her disease and death. Nine hundred seven men met the criteria and were included in the study.
Questionnaire and Preparation We assessed whether the widower had been informed that the wife's cancer was incurable by asking the question, "When did you receive the information that your wife's illness was incurable?" Responses included "Not relevant, I was never informed" and nine other time point alternatives ranging from "The same day she died" to "More than two years before she died." The questions asking the widowers if they thought that the next of kin and the patient should be informed about the incurability of the illness were phrased, "Do you think the physician should immediately inform the next of kin when there is no hope left of cure?" and "Do you think the physician should immediately inform the patient when there is no hope left of cure?"; both of the questions had response categories of "Yes" and "No." Information on who told the widowers about the incurability of their wife's cancer was obtained by asking, "Who told you that your wife's cancer could not be cured?"; the response alternatives were "Not relevant, I was never informed," "My wife," "The physician," "The health care personnel," "A family member," "A friend," and "Other person."
Statistical Analysis
Of the 907 widowers who were included, 691 (76%) agreed to participate in the study and answered the questionnaire. The characteristics of the study population are listed in Table 1. Men who declined participation or who, for other reasons, did not return the questionnaire were similar to those who participated with regard to age (mean age, 66 years in both groups). Reasons for nonparticipation were as follows: 95 men declined, 104 men agreed to participate but did not return the questionnaire, 12 men were not reachable, two men died after the start of data collection, and three men did not participate for other reasons.
Men Informed and Time of Information Twenty percent of widowers (134 of 672 widowers) reported that they were never told that their wife's cancer could not be cured (Table 2). Widowers whose wives were diagnosed with breast cancer were twice as likely not to have been informed of the incurable illness compared with the widowers of wives diagnosed with ovarian cancer (RR = 2.2; 95% CI, 1.4 to 4.6; Table 2), independent of adjustment for age, education level, employment, and marital status in regression analysis. Men who currently live alone were less likely to have been informed of the incurable state of their wife's cancers than men who are married or have a partner (RR = 0.6; 95% CI, 0.3 to 0.9; and RR = 0.6; 95% CI, 0.4 to 0.9, respectively; Table 2), and the results were similar when adjusted by age (Table 2), education level, and employment status.
Twenty-one percent of the men (140 of 672 men) reported that they received the information that the wife's illness was incurable within 1 day up to 1 week before her death (Table 3). Forty-five percent of the men (303 of 672 men) were informed that the illness was incurable within 2 months before the patient's death (Table 3). The widowers who received information about the incurability of their wife's cancer (80% of all husbands; Tables 2 and 3) were informed by the physician in the vast majority of cases (79%). The wife informed the husband in 11% of the cases, and other health care personnel informed the husband in 6% of the cases.
Men's Attitudes Towards Being Informed Fourteen percent of the widowers (96 of 668 widowers) did not think the next of kin should be told immediately when the physician determined that the patient's cancer was not curable (Table 4). Men who considered themselves to be very religious were more positive towards disclosure to next of kin compared with men reporting themselves as nonreligious (atheists; Table 4), and there was no statistically significant change when adjusted for age (Table 4), education level, or employment status. Seventy-one percent of the widowers (91 of 129 widowers) who reported that they never received information that the wife's cancer was not curable also reported that they believed that the relative should immediately receive the information that the illness was incurable (Fig 1).
Two hundred fifty-eight (39%) of 661 husbands did not want the physician to immediately inform the patient (the wife) when it became clear that there was no hope left for cure (Table 5). Men who considered themselves to be very religious were twice as inclined to want the patient to be informed compared with men reporting themselves to be nonreligious, somewhat religious, or moderately religious (Table 5), and the findings were not influenced by adjustment for age (Table 5), education level, or employment status.
A large majority of bereaved widowers of cancer patients in the study believed that the relative should be informed immediately about the incurable nature of the disease. This also holds true for men who never received information on the incurable illness. More than 40% of the men were either never told that their wife's condition was incurable or were informed at a late stage. Furthermore, we found attitudes of patient nondisclosure among the widowers. A considerable proportion of the men who were never informed about the incurable illness (71%) answered that the next of kin should receive that information immediately. The finding indicates that the caregivers' wish for information on the chance of cure is greater than acknowledged by the professionals in the field. Results from other studies support the view that the caregivers' wish for information is not being met and that caregivers want to be informed sooner about the incurable state of the disease.19-21 A questionnaire study investigated communication on ending the anticancer treatment; according to the family members, considerable or much improvement was needed in the level of communication in 20% of the cases, and the caregivers were more likely to wish for improvement if the physician did not explain treatment goals.11 Our results show that 14% of spouses to women with fatal cancer do not want to be immediately informed about the incurable nature of the illness. Morita et al11 also reported that 14% of the family members do not want to receive information on prognosis, and this is confirmed by the interviews by Cherlin et al.19 The large proportion of widowers in favor of information is in line with results that have been shown previously that indicate that the palliative patients themselves want all information, good or bad.22 It is a great challenge for physicians and other professionals to perceive which patients and family members do not desire and will not benefit from open communication. More research is needed to assist clinicians in identifying this subgroup and to learn how they want to be approached. The widowers were more positive toward the idea that the caregivers should be informed about the incurable state of the disease as compared with the idea that the patients should be informed. Thirty-nine of the widowers answered that the patient should not immediately be informed about the incurable illness. Religious faith was associated with attitudes towards disclosure; the very religious men were more positive towards the wife receiving information on her incurable illness. Requests by family members of nondisclosure towards the patient present a delicate and difficult task for the physician.23,24 The caregivers' protective view regarding how much information should be given to the patients has also been reported by Friedrichsen et al.25 However, results from other studies do not support the view that the patients want information on incurable or terminal illness to a lesser degree than the family.22,23,26,27 In the study by Fallowfeild et al,22 84.9% of the palliative patients wanted as much information as possible, whether good or bad. Furthermore, Yun et al27 reported that 91.6% of the patient group in their study said that the patient should be informed about the terminal illness compared with only 76.9% of family members who thought that the patient should be informed. The majority of the patients (72.5%) in the same study also wanted to know immediately about the terminal illness, whereas only 42.5% of the family members wanted the patient to know immediately about the terminal illness.27 Interestingly, 54% of the family members who were against disclosing to the patient that the illness was terminal believed such disclosure would cause the patient to lose hope and discourage her from fighting, whereas only 6.7% of the patients who were against disclosure thought it would mean loss of hope.27 Whether physicians are aware of the proportion of patients and spouses who want information on the incurable state of the illness may vary in different countries. In a questionnaire survey of palliative care physicians, 81% of Canadian physicians stated that at least 60% of family members of the patients want the patients to be informed about the terminal stage of their disease, whereas none of South American and 18% of European physicians agreed with this position.28 Moreover, in a study of oncologists from North America, Europe, South America, and Asia, it was found that physicians from Western countries were less likely to withhold unfavorable information at the family's request.29 One fifth of the men stated that they were never informed about their wives' incurable illness. The same proportion of family members (20.8%) who never received information on incurable illness or ending curative cancer treatment has been reported by two other studies.11,19 However, disclosure of information on incurable prognosis to the caregiver may be influenced by diagnosis (as discussed later) or by sex; 53% of 379 widows of men dying as a result of prostate and urinary bladder cancer were not informed of the incurable nature of their husband's cancer illness.4 The perception that clear and honest information of the illness has not been given may not only arise because of well-intended attempts to protect the patients and their families from stressful news, but may also be related to misunderstanding caused by ambiguous language.22,30 Research has shown that poor communication when breaking bad news may lead patients with advanced malignant disease to be unaware of their diagnosis and prognosis and to misunderstand the therapeutic intent of treatment30-33; poor communication may also lead to increased risk of later psychological morbidity for surviving relatives4,34 (Hauksdóttir, manuscript submitted for publication). The husband's receipt of information that his wife's curative treatment for cancer has been stopped has been reported to be one predictor of the level of his preparedness at the time of his wife's death (Hauksdóttir, manuscript submitted for publication). Such preparedness can have significant health consequences because it has been found that younger men (38 to 61 years old) with a low degree of preparedness at the time of the spouse's death had increased risk of depression and anxiety 4 to 5 years after the wife's death (Hauksdóttir, manuscript submitted for publication). There is no bereavement support available to a large extent in Sweden. In our study, diagnosis influenced the chance of receiving information about the incurable state of the disease; men whose wives had died of ovarian cancer were told twice as often that there was no hope of cure than were men whose wives had died of breast cancer. The reasons for this are unclear, but it is not a result of differences in attitudes towards disclosure or a result of differences in sociodemographic variables. The findings may reflect experience that a larger proportion of women with ovarian cancer have an advanced stage of disease already at the time of diagnosis, which accounts for the 41% 5-year survival rate in Sweden.35 In contrast, women diagnosed with breast cancer in Sweden have a relatively good prognosis, with a 5-year survival rate of 82%.35 This may, in turn, lead to situations in which the husbands of women with ovarian cancer are more likely to be aware of the incurable nature of the illness already from the time of diagnosis. A notable proportion of the widowers (20%) were informed late in the disease period of the incurable state of their wife's illness, meaning only within the last week before death. Cherlin et al19 also reported that family caregivers were informed about the incurable illness rather late in the course of the disease; 23.5% of caregivers were informed less than 1 month before the patient's death. Furthermore, only a minority of patients understood that the illness was incurable before the physician discussed this with them.19 Our group has previously reported that an awareness time of less than 24 hours increases the risk of psychological morbidity of the bereaved.4 Approximately 60% of cancer patients in Sweden die in hospitals and 25% die at home, which are similar rates to other countries in northern Europe and the United States.36-39 The palliative care is well established in Sweden but with an uneven distribution throughout the country.40 In the north of Sweden, which has a low population density, the access to a specialized palliative care unit is scarce, whereas in Stockholm, there are several comprehensive palliative care units with both inpatients wards and home care. Our data should be interpreted by taking into consideration the fact that they are based on the participants' self-reports on information actually given 4 to 5 years earlier. The responses might have been different if the question about attitudes towards being informed immediately had been divided into wish to be informed and at what time (in the course of disease). However, the use of a large population-based cohort of widowers and the high response rate in our study minimized potential problems of selection and can be seen as major strengths of the study. In addition, our extensive preparatory process and the use of anonymous, self-administered questionnaires decreased the risk of measuring errors and prevented interviewer-related bias. However, we cannot exclude the possibility that the nonparticipating widowers would have reported differently on communication about incurable illness. In conclusion, results from our study show that a substantial number of husbands of incurably ill female cancer patients received information about the incurable state of the patient's illness at a late stage or not at all, even if they were in principle positive to immediate disclosure. This implies that communication with the husbands or partners of women with incurable cancer may still be improved.
The author(s) indicated no potential conflicts of interest.
Conception and design: Hanna Dahlstrand, Arna Hauksdóttir, Unnur Valdimarsdóttir, Gunnar Steineck Financial support: Unnur Valdimarsdóttir, Gunnar Steineck Administrative support: Arna Hauksdóttir, Gunnar Steineck Provision of study materials or patients: Arna Hauksdóttir, Carl-Johan Fürst, Gunnar Steineck Collection and assembly of data: Arna Hauksdóttir Data analysis and interpretation: Hanna Dahlstrand, Arna Hauksdóttir, Unnur Valdimarsdóttir, Karin Bergmark, Gunnar Steineck Manuscript writing: Hanna Dahlstrand, Arna Hauksdóttir, Unnur Valdimarsdóttir, Karin Bergmark, Gunnar Steineck Final approval of manuscript: Hanna Dahlstrand, Arna Hauksdóttir, Unnur Valdimarsdóttir, Carl-Johan Fürst, Karin Bergmark, Gunnar Steineck
Supported by the Swedish Cancer Society, the Swedish Research Council, Stockholm City Council, Stockholm Cancer Foundation, and the Center for Health Care Sciences at Karolinska Institutet. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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Copyright © 2008 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
