1 Palliative Care Team and Seirei Hospice, Seirei Mikatabara Hospital, Shizuoka; 2 Psycho-Oncology Division, National Cancer Center Research Institute East; 3 Psychiatry Division, National Cancer Center Hospital East; 4 Hospice, Yodogawa Christian Hospital, Osaka; 5 Division of General Medicine and Palliative Care, Tsukuba Medical Center Hospital, Tsukuba; 6 Palliative Care Unit, National Sanyo Hospital; 7 Department of Palliative Medicine and Medical Oncology, Tokyo Metropolitan Toshima General Hospital, Tokyo; 8 Department of Palliative Medicine, Tohoku University Hospital, Miyagi; 9 Palliative Medicine, Shizuoka General Hospital, Shizuoka; 10 Palliative Care Unit, National Cancer Center Hospital East; 11 Palliative Care Unit, Kawasaki Social Insurance Hospital, Kanagawa; 12 Graduate School of Human Sciences, Waseda University, Tokyo, Japan
* Correspondence to: T. Morita, Palliative Care Team, Seirei Hospice, Seirei Mikatabara Hospital, 3453 Mikatabara-cho, Hamamatsu, Shizuoka, 433-8558, Japan. Tel: +81-53-436-1251; Fax: +81-53-438-2971; Email: seireihc{at}jt6.so-net.ne.jp
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Abstract |
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Methods: A multi-center questionnaire survey was conducted on 630 bereaved family members of cancer patents who received specialized palliative care in Japan. A total of 318 responses were analyzed (effective response rate, 62%).
Results: Thirty-nine percent of the bereaved family members reported that they were very distressed in receiving information about the ending of anticancer treatment, and 19% reported considerable or much improvement was necessary in the communication methods. High-level emotional distress was significantly associated with younger patient age, female family gender, the experience of the physician stating she/he could do nothing for the patient, the physician's unwillingness to explore their feelings, and prognostic disclosure of definite survival periods without probabilities or ranges. High levels of perceived necessity for improvement in the communication methods were significantly associated with the experience of the physician stating she/he could do nothing for the patient, physicians not explaining treatment goals in specific terms, physicians not pacing the explanation with the state of family preparation, physicians not being knowledgeable about the most advanced treatments, and the atmosphere not being relaxing enough to ask questions.
Conclusions: In receiving the information about ending anticancer treatment, a considerable number of families experienced high levels of emotional distress and felt a need for improvement of the communication methods. The strategies to alleviate family distress could include: (i) assuring that physicians will do their best to achieve specific goals, without saying that they can do nothing for the patient; (ii) providing information, including estimated prognosis, in careful consideration of families' preparation and the uncertainty for each patient; (iii) exploring families' emotions and providing emotional support; (iv) acquiring knowledge about advanced treatments; and (v) making the atmosphere relaxing enough to allow families to ask questions.
Key words: communication, family, neoplasms, palliative care
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Introduction |
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However, communicating about the transition from curative or life-prolonging treatment to palliative and symptomatic treatment is still a difficult task for oncologists. A recent survey of American oncologists demonstrated that they listed discussing the unavailability of further curative treatment and hospice referral as the most difficult tasks [19]. Nonetheless, to our best knowledge, only a few empirical studies have specifically addressed patient or family experience in receiving information about the ending of anticancer treatment [20
, 21
].
In Japan, family members have a special role in communicating bad news. While a clinical guideline recommends physicians disclose the diagnoses first to patients themselves [15], it is culturally approved that family members receive the information before patients, and families are requested to decide how and to what degree the patient should be told [7
]. Therefore, family members typically receive the full medical information including incurability and estimated prognosis at one time, whereas patients receive information gradually, and often partially, based on their preferences. Therefore, alleviation of family distress when communicating about the ending of anticancer treatment is one of the main tasks for Japanese medical professionals. The primary aims of this study were thus to clarify the degree of emotional distress when communicating about the ending of anticancer treatment and the necessity for improvement in the communication methods, and to identify factors contributing to their levels.
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Subjects and methods |
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We initially identified 19 palliative care units as potential participating institutions, following the inclusion criteria: (i) formally approved by the Japanese Association of Hospice and Palliative Care Units, (ii) having 20 or more beds, (iii) belonging to a hospital with more than 300 beds, and (iv) having 100 or more patients per year. We then approached 11 palliative care units with collaborative researchers available. There were no statistically significant differences in the number of inpatient beds, the number of patients, or administration periods between the included and excluded institutions (22 ± 2.5 versus 23 ± 3.1, P=0.39; 161 ± 33 versus 183 ± 65, P=0.40; 41 ± 5.8 versus 42 ± 13, P=0.80; respectively). Ultimately, nine units agreed to participate in this survey. All institutions had some bereavement programs (individual follow-up with telephone and/or letter, n=9; system for consultation with mental care professionals, n=7; supportive groups or meetings of the bereaved, n=5).
Primary physicians identified the potential participants. The inclusion criteria were: (i) bereaved family members of an adult cancer patient, (ii) aged 20 or more, (iii) capable of replying to a self-reported questionnaire, and (iv) aware of the diagnosis of malignancy. Questionnaires were mailed to a family member described as a key person in the medical records, and a covering letter requested a family member who principally had cared for the patient to fill out the questionnaire.
Primary physicians identified families that would have suffered serious psychological burden by participating in this survey, and these were excluded for ethical reasons. This criterion was adopted on the assumption that primary physicians could identify families who would suffer serious psychological burden, because they cared for the families closely in inpatient care settings with a mean admission period of 47 days (the Japanese Association of Hospice and Palliative Care Units, unpublished data).
Each hospital was requested to consecutively enrol 70 family members of the patients who died in 2002. Of 630 family members considered as potential participants, 38 family members were excluded due to serious psychological distress recognized by primary physicians (n=22) or unavailability of competent adult family members (n=16).
Completion and return of the questionnaire were regarded as consent to participate in this study. The ethical validity was confirmed by the institutional review board of each hospital.
Questionnaire
The questionnaire (available from the authors) was developed by the authors based on a systematic literature review, and the content validity was assessed by full agreement of the authors [316
, 20
, 21
]. The face validity of the questionnaire was confirmed by a pilot test on five bereaved families.
The primary end points were family-perceived emotional distress during communication about the ending of anticancer treatment and the necessity for improvement in the communication methods. As a result of the lack of previous validated instruments, these outcome parameters were developed by the authors: the level of family-perceived distress was evaluated by the answer to how distressed were you, when you received information about the ending of anticancer treatment and shifting to palliative care?, rated on a five-point scale from 1: not distressed at all to 5: very distressed. The necessity for improvement was evaluated by the answer to how much improvement do you think was needed in the communicating method, when you received information about the ending of anticancer treatment, rated on a four-point scale as 1: no improvement, 2: some improvement, 3: considerable improvement, and 4: much improvement.
In addition, we requested that family members report whether the patient had told the family about the patient's distress when communicating about the ending of anticancer treatment, and asked them to report it on the same scale. We investigated this item following recommendations that family-reported patient behavior might be useful for estimating patients' perspectives in end-of-life care [22].
Moreover, we investigated 18 communication strategies that empirical studies and clinical guidelines recommended in breaking bad news (Table 2) on the assumption that physicians' communication skills could influence families' emotional distress [316
]. The family members were requested to rate their degree of agreement about the listed physicians' communication behaviors on a five-point Likert-type scale or a yesno format. In addition, the family members were requested to report the types of prognostic disclosure they received from 1) not want (they did not want disclosure), 2) no answer (physician said I don't know or I cannot answer), 3) specific survival ranges (e.g. several weeks or months), or 4) definite survival periods without probability or ranges (e.g. until May or for 3 months).
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To explore the determinants of the levels of family-reported emotional distress and necessity for improvement, we initially screened six background variables (patient age, gender, interval from diagnosis to death, family member age, gender, relationship to the patients), 18 family member evaluations of physicians' communication behaviors, and the type of prognosis disclosure by univariate analyses. To make interpretations easy, all responses to 18 communication strategies were converted to two categorical variables (agree or strongly agree versus others), and use of these parameters as continuous variables achieved similar results. Univariate analyses were carried out using Student's t-test or the chi-square test, where appropriate. To assess the results in 25 comparisons, the P value necessary for statistical significance was defined as 0.002 (0.05/25) using the Bonferroni correction. The P values from 0.02 to 0.002 were regarded as of marginal statistical significance.
Multiple logistic regression analyses were then carried out in a forward elimination fashion. All potential predictors with statistical significance or marginal statistical significance by univariate analyses were entered in the equation as independent variables.
All analyses were carried out using the Statistical Package for the Social Sciences (ver. 11.0).
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Results |
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The degree of family-reported distress was: very distressed (39%, n=123), distressed (31%, n=100), slightly distressed (20%, n=62), not so distressed (6.6%, n=21), and not distressed at all (3.8%, n=12). The necessity for improvement in the communication methods as rated by the family members was: much improvement (6.3%, n=20), considerable improvement (13%, n=42), some improvement (39%, n=123), and no improvement needed (42%, n=133).
Among 145 responses where family members heard patients' expression about emotional distress when communicating about the discontinuation of anticancer treatment, the families reported that the patients were: very distressed (34%, n=49), distressed (39%, n=56), slightly distressed (20%, n=29), not so distressed (4.1%, n=6), and not distressed at all (3.4%, n=5). The concordance between families' and patients' evaluations was moderate (Cohen's =0.39), although the absolute differences between families' and patients' ratings were ±1 in 94% (n=137).
Family-reported practice when communicating about the ending of anticancer treatment
Table 2 shows the percentages of family members who agreed with each statement. Over 80% of the respondents reported that they received information in a quiet place where privacy was protected, and that they were allowed to be accompanied by the persons whom they wanted. However, the levels of adhesion to the other recommended practices were moderate, and 22% of the family members reported that the physician told them that she/he could do nothing for the patient any longer.
The types of prognoses disclosure reported by the family members were: did not want to be told (14%, n=44), no answer (6.6%, n=21), specific ranges (40%, n=127), and definite periods without probabilities or ranges (38%, n=120).
Determinants of family-reported emotional distress when communicating about the end of anticancer treatment (Table 3)
Compared with the family members with low-level distress, family members with high-level distress were significantly more likely to report that the physician told them she/he could do nothing for the patient, and informed them of definite estimated prognoses without probabilities or ranges. They were less likely to report that the physician was willing to explore their feelings, that the physician explained the treatment goals in specific terms, and that the atmosphere was relaxing enough to ask questions, with marginal statistical significance.
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Determinants of family-reported necessity for improvement in the communication methods (Table 4)
Compared with the family members who perceived low-level necessity for improvement, the family members who perceived high-level necessity for improvement were significantly more likely to report that the physician said she/he could do nothing for the patient, and that the explanation was interrupted for the physician's reasons; they were significantly less likely to report that the physician explained the treatment goals in specific terms, that the physician talked about the treatment goals in an affirmative manner, that the physician paced the explanation with the state of families' preparation, that the physician was willing to explore family feelings, that the physician was knowledgeable about the most advanced treatments, the atmosphere was relaxing enough to ask questions, the explanation was given in understandable language, and that the physician provided as much time as they wanted. In addition, they were less likely to report that they were informed in a quiet place where privacy was protected, with marginal statistical significance (75%, n=42 versus 89%, n=218; P=0.008).
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Discussion |
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One of the important findings of this study was the clarification of family evaluation of physician skills in communication about the ending of anticancer treatment. This study demonstrated that 40% of the family members expressed high levels of emotional distress, and 20% reported that considerable or much improvement was necessary in the communication methods. In addition, the levels of adhesion to recommended practices were generally moderate, except on a few items. This is in contrast with a high level of competence reported in a US survey [4]. The proportion of subjects who agreed on each statement were: informed in a quiet and private location (93% in the US survey versus 82% in the corresponding item in our survey), given a chance to ask questions (97% versus 66%), informed with understandable language (98% versus 63%), paying attention to patients'/families' feelings (92% versus 44%), and considered the state of patients/families' preparation (76% versus 42%). This result strongly suggests that Japanese physicians' skills in communication about the discontinuation of anticancer treatment should be further improved.
The second and most important finding was the clarification of determinants of the degree of family emotional distress and areas requiring improvement from family perspectives. The areas significantly associated with family distress and perceived necessity for improvement are grouped into five categories: (i) physicians responsibility and saying nothing can be done, (ii) providing information with careful consideration of the family's preparation and preferences, (iii) emotional support for families, (iv) physicians' knowledge about advanced treatment options, and (v) general communication methods in breaking bad news.
First, 20% of the family members reported that the physician said she/he could do nothing for the patient, and this experience was a strong cause of both family distress and perceived necessity for improvement. This result confirmed a finding from a qualitative study that patients received words of giving up with serious negative emotions, when they were informed of the ending of cancer treatment [21]. Published guidelines strongly recommend that physicians should not say that they have nothing to provide for patients, and physicians have continuing responsibility for all patients through providing symptom palliation and emotional support, even when a tumor cannot be treated [8
, 11
, 13
, 15
]. This study strongly indicates that, in communicating about the ending of anticancer treatment, physicians should ensure that they continue to do their best for the patient in their responsibilities as a physician, and should indicate specific goals to be achieved, instead of saying that they can do nothing for the patient.
Second, this study suggests that providing information with careful consideration for families' preparation and preferences is an important strategy in communicating about the discontinuation of anticancer treatment. Family perception that physicians did not pace the explanation with the state of their preparation was significantly associated with perceived necessity for improvement, and prognostic disclosure of definite survival periods without probability and ranges caused high emotional distress. This finding is constant with a finding from a qualitative study that providing a fixed time-frame was seen as very frightening for patients [21]. The possible interpretations of these findings are: family members did not wish to know or were unprepared to hear the estimated prognosis; or even when family members wished to know and were prepared for receiving prognostic information, physicians' communication skills were not adequate. In a large survey of Japanese, the percentages of respondents who wanted to know the estimated prognosis was not very high (63%) [7
], and it is recommended that estimated prognosis should be conveyed with the context of statistical uncertainty for each patient [11
]. Therefore, in communicating about the discontinuing anticancer treatment and prognostic information, physicians should first confirm families' preparation and preferences, and then convey information along with probability and uncertainty for each patient.
Third, this study revealed a strong need for emotional support of family members. Because family-reported experience of a physician who was willing to explore family members' feelings was significantly associated with lower levels of families' emotional distress, physicians should regularly explore family feelings, listen to their worries, provide appropriate reassurance, and, if needed, refer them to professional support [912
, 15
].
It is noteworthy that family members who were informed by physicians they considered not knowledgeable about the most advanced treatments reported higher levels of necessity for improvement. This finding is consistent with an empirical finding from the US that physicians who are up-to-date on research and physicians who know the best treatment are the most important factors that patients require for oncologists [3]. Thus, in communicating about the ending of anticancer treatment, similar to communication when choosing treatment options, it is important for family members to believe that the physicians have the most recent knowledge about anticancer treatments.
Finally, this survey identified several factors related to general communication skills in breaking bad news as areas to be further improved: the atmosphere should be relaxing enough to ask questions, physicians should explain in understandable language, and physicians should provide as much time as family members want. Although these skills are not limited to the situation of communicating about the ending of anticancer treatment, physicians should encourage questions periodically using simple and non-technical terms, and ensure enough undisturbed time for communication [912
, 15
].
This study had several limitations. First, as 3.5% of family members were excluded because primary physicians determined they would suffer serious psychological distress, the population might not be representative of such families in general. Second, because this study focused on family members' experiences, and the concordance between families' and patients' evaluation was moderate, the findings from this study do not correspond to the patients' evaluations. Third, the study subjects were limited to family members who received specialized palliative care, and the findings might not be applicable to family members in other settings. Fourth, due to a lack of validated instruments, primary end points were measured without formal reliability and validity testing. The relatively low percentage of family-perceived necessity of improvement (20%) suggests that this parameter might be influenced by social desirability. Additionally, family-reported levels of emotional distress could have been affected by their grief. Fifth, this study depended on the retrospective evaluation of bereaved family members, and recall bias could exist. Confirmation of the findings will require prospective studies such as video-taped analyses. Finally, due to the lack of comparable studies, we compared our results mainly with patient surveys, but preference and concerns might be different between patients and families.
In conclusion, when communicating about the ending of anticancer treatment, 40% of the family members expressed high levels of emotional distress, and 20% reported that considerable or much improvement in the communication methods was necessary. The strategies to alleviate family distress include: (i) assuring that physicians will do their best to achieve specific goals, without saying that they can do nothing for the patient; (ii) providing information carefully in consideration of families' preparation and the uncertainty for each patient; (iii) exploring families' emotion and providing emotional support; (iv) acquiring knowledge about advanced treatments; and (v) making the atmosphere relaxing enough to allow families to ask questions. These suggested communication strategies should be tested in future prospective observational or interventional studies.
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Acknowledgements |
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Received for publication January 23, 2004. Revision received April 28, 2004. Accepted for publication May 17, 2004.
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References |
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