Annals of Oncology Advance Access published online on July 28, 2007
Annals of Oncology, doi:10.1093/annonc/mdm199
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© 2007 European Society for Medical Oncology
Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan
1 Department of Adult Nursing/Palliative Care Nursing, Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo
2 Department of Palliative and supportive care, Palliative Care Team and Seirei Hospice, Seirei Mikatahara General Hospital, Hamamatsu, Shizuoka
3 Center of the Study for Communication Design, Osaka University, Osaka
4 Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya
5 Psycho-Oncology Division, Research Center for Innovative Oncology, National Cancer Center Hospital East, Chiba, Japan
* Correspondence to: M. Sanjo, Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, The University of Tokyo, 7-3-1 Bunkyo-ku, Tokyo 113-0033, Japan. Tel: +81-3-5841-3508; Fax: +81-3-5841-3502; E-mail: shibagaki-tky{at}umin.ac.jp
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Abstract |
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Background: The aims of this study were to clarify end-of-life cancer care preferences and associations with good-death concepts.
Methods: The general population was sampled using a stratified random sampling method (N = 2548; response rate = 51%) and bereaved families from 12 certified palliative care units (‘PCU-bereaved families’) were surveyed (N = 513; response rate = 70%). The respondents reported their end-of-life care preferences and good-death concepts.
Results: Regarding place of end-of-life care, approximately 50% of the general population preferred ‘Home’, while 73% of PCU-bereaved families preferred ‘PCU’. The concepts of ‘Maintaining hope and pleasure’ and ‘Dying in a favorite place’ were associated with the preference for ‘Home’. Regarding prognostic disclosure, approximately 50% of the participants preferred some level of negotiation with the physician. The concept of ‘Control over the future’ was associated with this preference. Regarding treatment of severe refractory physical distress, 75% of the general population and 85% of the PCU-bereaved families preferred palliative sedation therapy. The concepts of ‘Physical and psychological comfort’ and ‘Unawareness of death’ were associated with this preference.
Conclusions: End-of-life care preferences were associated with good-death concepts. It would be useful for health-care workers to discuss patients’ good-death concepts to support subsequent treatment decisions.
attitude towards death, palliative care, neoplasm, cross-sectional studies
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introduction |
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An important goal of end-of-life care is to honor patients' preferences based on their concepts of ‘quality of dying’ and ‘good death’ [1, 2]. To date, researchers have explored such preferences with respect to three key issues: place of end-of-life care and death [3–6], prognostic disclosure [7–9] and terminal sedation and euthanasia for refractory suffering [10–12]. However, studies on preferences for discussing prognoses and treating severe refractory suffering using representative samples in Japan are lacking.
Although recent studies have suggested that a good death is the primary end-point of end-of-life care [13–15], the associations between end-of-life care preferences and good-death concepts are poorly understood. Research has focused on the concept of ‘burden’ [3, 16] or general beliefs about suffering [16] without comprehensively conceptualizing these notions. Vig and colleagues [17] examined end-of-life preferences among geriatric outpatients in a preliminary quantitative study; however, quantitative associations between end-of-life care preferences and good-death concepts could not be identified from their data. As preferences for end-of-life care change with experience [18], it is essential to explore associations in individuals who have encountered bereavement and specialized palliative care. Our survey explored the associations between preferences and comprehensively conceptualized a good death in a representative sample of the Japanese population.
palliative-care system in Japan
The Japanese Ministry of Health, Labor and Welfare supports specialized palliative-care services, which have been covered by National Medical Insurance since 1991. Accordingly, the number of palliative care units (PCUs) increased from 5 in 1991 to 135 in 2004. To be approved as a PCU, institutions must fulfill requirements regarding staff numbers, facilities and equipment. PCUs with religious associations are sometimes called ‘hospices’, but both PCUs and hospices aim to provide intensive symptom control and end-of-life care for cancer patients and their families. Most PCUs belong to general hospitals, and have interdisciplinary teams including physicians, nurses and other specialists [19]. By comparison, the growth of home-based specialized palliative-care programs has been slow [20]. Palliative-care teams were not covered by National Medical Insurance until 2002, and remain in an early phase of development. The most common and best available palliative-care service in Japan remains the PCU, which is the subject of the present study.
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materials and methods |
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study sample and procedures
This study was part of a nationwide survey, and the protocol has been described previously [21, 22]. We initially identified four target areas, in order to obtain a wide geographic distribution for the nationwide sample; these comprised an urban prefecture (Tokyo) and three mixed urban–rural areas (Miyagi, Shizuoka and Hiroshima).
A cross-sectional questionnaire was administered to nonbereaved members of the general population (‘nonbereaved general population’), members of the general population who had been bereaved thorough cancer (‘bereaved general population’), and bereaved family members of cancer patients who had died in 12 certified PCUs in Japan (‘PCU-bereaved families’).
We initially identified 5000 subjects within the general population (that is, the nonbereaved general population and the bereaved general population) using stratified two-stage random sampling of residents in the four areas. To identify bereaved family members, we initially identified all 37 PCUs in the four areas as potential participating institutions. We then approached the 18 PCUs with available collaborative researchers. Ultimately, 12 of the PCUs (two in Miyagi, five in Tokyo, two in Shizuoka, and three in Hiroshima) agreed to participate in the survey. Primary-care physicians identified bereaved families in which the caregiver fulfilled the following inclusion criteria: (i) primary caregiver of an adult cancer patient; (ii) aged 20 years or more; (iii) capable of replying to a self-reported questionnaire; (iv) aware of the diagnosis of malignancy; and (v) without serious psychological distress as determined by the physician.
We mailed self-reporting questionnaires to potential participants in August 2004, and re-sent them in October 2004 to those who did not respond; we requested that the primary caregiver filled in the questionnaire.
The protocol was approved by the institutional review board of each PCU, and conformed to the requirements of the Helsinki Declaration in respect to fully explaining the aims of the study, protecting the confidentiality of participants, ethical considerations and voluntary participation.
questionnaire
The questionnaire was designed based on an extensive literature review [3, 5, 7, 11, 13, 17, 23–32] and expert consensus (copies are available from the authors on request). Its feasibility and face validity were confirmed by a pilot study of a convenient sample of 54 members of the general population.
end-of-life care preferences
Respondents stated their preferences for the following aspects of end-of-life care in a scenario where they had incurable cancer. The questionnaire that was finally adopted is described in the Appendix.
place of end-of-life care and death.
Respondents chose ‘Home’, ‘Acute hospital’ or ‘PCU’ as their desired place of care and place of death assuming they had a 1–2 month life expectancy, no physical distress and needed care assistance in their daily activities.
prognostic disclosure.
In two scenarios where respondents had a life expectancy of 6 or 1–2 months, respectively, they stated their preference for initiating a discussion of prognosis from the following: ‘Not to discuss at all’, ‘Physician to inform me only if I ask’, ‘Physician to check with me first whether I want to know’ or ‘Physician to initiate a discussion and inform me in detail’.
treatment of severe refractory physical distress.
Respondents rated their treatment preferences for severe refractory physical distress on a four-point Likert-type scale, ranging from ‘Absolutely do not want’ (1) to ‘Strongly want’ (4). The options were ‘Treatment so that the patient keeps consciousness clear even if distress is not alleviated’ (care without sedation), ‘Administration of sleeping drugs so that the patient feels no distress because of a reduction in patient consciousness’ (palliative sedation therapy) or ‘Administration of lethal medications’ (euthanasia).
factors associated with preferences
Prior to the survey, relevant factors were conceptualized and grouped into five categories based on a literature review [5, 13, 17, 23–25, 27–32]: ‘Concepts of good death’, ‘Perception of PCUs’ ‘Cancer-related beliefs’, ‘Legal knowledge of end-of-life care options’ and ‘Demographic variables’.
good-death concepts [13, 17].
Respondents rated the importance of 58 components of a good death [13] on a seven-point Likert-type scale. Concepts were classified into 18 domains using an explanatory factor analysis [21]: ‘Physical and psychological comfort’, ‘Dying in a favorite place’, ‘Good relationship with medical staff’, ‘Maintaining hope and pleasure’, ‘Not being a burden to others’, ‘Good relationship with family’, ‘Physical and cognitive control’, ‘Environmental comfort’, ‘Being respected as an individual’, ‘Life completion’, ‘Natural death’, ‘Preparation for death’, ‘Role accomplishment and contributing to others’, ‘Unawareness of death’, ‘Fighting against cancer’, ‘Pride and beauty’, ‘Control over the future’ and ‘Religious and spiritual comfort’. Each domain score was defined as the mean of the item scores (range = 1–7).
perceptions of PCUs [28, 29].
Respondents rated their levels of agreement with 10 statements about the PCU on a five-point Likert-type scale on the basis of a previous study [28]: ‘Alleviates pain’, ‘Supports patients in living with dignity’, ‘Provides no medical treatments’, ‘A place where people only wait to die’, ‘Shortens the patient's life’, ‘Expensive’, ‘Provides compassionate care’, ‘A place where patients are isolated from the community’, ‘Supports patients in living peacefully’ and ‘Provides care for families’. If the respondents did not know what PCUs were, they were instructed to choose ‘Do not know’.
cancer-related beliefs [5, 23–25, 27, 31, 32].
Respondents rated their levels of agreement about nine cancer-related belief statements on a five-point Likert-type scale. These comprised three pain-related statements (‘Cancer pain is sufficiently relieved if adequately treated’, ‘Opioids shorten life’ and ‘Consciousness is clear until death if pain medication is not used’), three communication-related statements (‘Physicians are generally poor at communicating bad news’, ‘Physicians are uncomfortable discussing death’ and ‘I could not cope if I was told my cancer was incurable’), two hydration-related statements (‘Artificial hydration and nutrition should be continued as the minimum standard until death’ and ‘Artificial hydration and nutrition relieve patient symptoms’), and one home care-related statement (‘It would be difficult for me to receive care in my home environment’).
legal knowledge of end-of-life care options [30].
Respondents stated whether they thought the following medical acts, if requested by a terminally ill patient, were legal or illegal in Japan: ‘Administration of medication for symptom relief when it might shorten life’ (the ‘double-effect’ act) and ‘Administration of lethal medications’ (euthanasia). At the time of the survey, no laws in Japan governed these practices. After discussion with a legal expert, we reached a consensus opinion that the double-effect act would be regarded as legal and euthanasia as illegal for the purpose of our study.
demographic variables.
The respondents reported their age and gender. The general population also reported whether they had a chronic disease (defined as the presence of a regular hospital visit over the previous year) and a bereavement experience caused by cancer within 10 years, and, if so, where the deceased had died.
Despite the possibility of a recall bias, we selected 10 years as the limit of experience of bereavement through cancer in the general population because it yielded similar conclusions to a limit of 5 years.
statistical analyses
End-of-life care preferences were analyzed using descriptive statistics for the three study groups (nonbereaved general population, bereaved general population and PCU bereaved families). We confirmed similar distributions of variables between the four areas sampled, and evaluated the significance of differences in preferences among the three groups using a chi-square test.
To explore the factors associated with preferences, we performed multivariate (for ‘Treatment for severe refractory physical distress’) logistic regression analysis using all potentially significant predictors identified by the univariate analysis (P < 0.2) as independent variables via backward elimination.
We created a multinomial variable capturing the three possible categories of preferred place of care and the four possible categories of preferred prognostic disclosure. To model the multivariate effect of potentially significant predictors on the categorical variables, we performed multinomial regression [33, 34] , which has been used in recent palliative-care research [26].
We combined the general population and PCU-bereaved families as subjects, so subject group was always included in the model.
The independent variables were age, gender, time since patient's death, concept of a good death, and cancer-related beliefs potentially associated with preferences. We tested the following hypotheses: preferences for end-of-life-care setting were influenced by all cancer-related beliefs [5, 29, 32]; preferences for prognostic disclosure were influenced by communication-related beliefs [24, 32]; and preferences for treatment for severe refractory physical distress were influenced by pain-related [31, 32], communication-related [25] and hydration-related beliefs [23, 27]. We also included ‘Perceptions of PCUs’ in the analysis of ‘Place of care’ [28, 29], and ‘Legal knowledge of end-of-life care options’ in the analysis of ‘Treatment for severe refractory physical distress’ [30], as independent variables.
To facilitate interpretation, we collapsed the five response categories for ‘Perceptions of PCUs’ into two: ‘Strongly agree or agree’ and ‘Neither agree nor disagree, disagree, strongly disagree or do not know’. In the multivariate logistic regression analysis for ‘Treatment of refractory severe physical distress’, we collapsed the four response categories into two: ‘Absolutely do not want or probably do not want’ and ‘Probably want or strongly want’.
All analyses were performed using SAS (version 9.1; SAS Institute Inc., Cary, NC, USA). The significance level was set at P < 0.05 (two-tailed).
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results |
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Of the 5000 questionnaires sent to the general population, 26 were undeliverable and 2670 were returned to the authors. Among these respondents, eight refused to participate, 14 were excluded due to missing data, and 2548 responses were analyzed (effective response rate = 51%). Among the respondents from the general population, 25% (N = 649) had lost family members from cancer during the previous 10 years. There were no differences in gender and age between these respondents and the general population according to the vital statistics data for 2003 [35].
Among the 866 respondents from PCU-bereaved families considered as potential participants, 72 were excluded due to serious psychological distress (N = 30), lack of competent adult family members (N = 17) or for other reasons. Of the 794 questionnaires sent to the remaining bereaved families, 56 were undeliverable and 552 were returned to the authors. Within this group, 27 individuals refused to participate, 12 were excluded due to missing data and 513 responses were analyzed (effective response rate = 70%). Comparing the backgrounds of respondents and nonrespondents revealed no differences in gender, age or time since patient's death, but a significant difference in the length of patient's hospital stay (mean = 44 days versus 36 days). Table 1 summarizes the backgrounds of the respondents.
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end-of-life care preferences
Summarized in Table 2.
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place of end-of-life care and death
Approximately 50% of the general population (nonbereaved and bereaved groups) preferred ‘Home’ as the place of end-of-life care and death, while approximately 70% of the PCU-bereaved families preferred ‘PCU’ (P < 0.0001). In all groups, at least 70% of the respondents preferred either ‘Home’ or ‘PCU’ as place of end-of-life care and death, while no more than 20% preferred ‘Acute hospital’ (P < 0.0001).
prognostic disclosure
Across all groups, approximately 10–20% of respondents preferred ‘Not to discuss at all’, 40% preferred ‘Physician to initiate a discussion and inform me in detail’, and 50% preferred a negotiated approach (either ‘Physician to inform me only if I ask’ or ‘Physician to check with me first whether I want to know’). The distributions of responses were similar for the scenarios with life expectancies of 6 and 1–2 months.
treatment for severe refractory physical distress
While there was a significant difference in the preference for care without sedation between the groups (P = 0.04), approximately 50% of all respondents preferred this option.
Regarding palliative sedation therapy, 75% of the general population preferred this treatment compared with 85% of the PCU-bereaved families (P = 0.0007).
For euthanasia, 46–50% of the general population preferred this approach compared with 41% of the PCU-bereaved families. There was no significant difference in preference for euthanasia between groups (P = 0.09).
factors associated with preferences
place of end-of-life care
Summarized in Table 3. Respondents who preferred ‘Home’ were more likely to regard ‘Dying in a favorite place’, ‘Maintaining hope and pleasure’, ‘Natural death’ and ‘Religious and spiritual comfort’ as important for a good death than those who preferred ‘Acute hospital’ (reference category).
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Respondents who preferred ‘PCU’ were more likely to regard ‘Being respected as an individual’ and ‘Religious and spiritual comfort’ as important for a good death than those who preferred ‘Acute hospital’ (reference category).
Respondents who preferred ‘Acute hospital’ were more likely to be older, and to regard ‘Unawareness of death’ and ‘Pride and beauty’ as important for a good death, than those who preferred ‘Home’ or ‘PCU’, respectively.
Respondents who preferred ‘PCU’ were more likely to agree with positive statements about the PCU, such as ‘Supports patients in living with dignity’, ‘Provides care for families’ and ‘Alleviates pain’. By contrast, those who preferred ‘Acute hospital’ were more likely to consider the PCU as ‘A place where patients are isolated from the community’. Other descriptions of the PCU, including ‘Provides no medical treatments’, ‘A place where people only wait to die’, ‘Shortens the patient's life’ or ‘Expensive’, were not significantly associated with a preference for ‘PCU’ (data not shown).
prognostic disclosure (1–2 month scenario)
Summarized in Table 4. Respondents who preferred knowing their prognosis were more likely to regard ‘Control over the future’ as important for a good death, and less likely to regard ‘Unawareness of death’ as important, or to agree with the statement ‘I could not cope if I was told my cancer was incurable’.
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treatment for severe refractory physical distress
Summarized in Table 5. Respondents who preferred care without sedation were more likely to regard ‘Fighting against cancer’, ‘Physical and cognitive control’ and ‘Preparation for death’ as important for a good death; they were less likely to regard ‘Physical and psychological comfort’, ‘Not being a burden to others’ and ‘Unawareness of death’ as important for a good death, or to have legal knowledge of the double-effect act.
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Compared with other respondents, those who preferred palliative sedation therapy were older, more likely to regard ‘Physical and psychological comfort’ and ‘Unawareness of death’ as important for a good death, and to agree with the statements ‘I could not cope if I was told my cancer was incurable’ and ‘Cancer pain is sufficiently relieved if adequately treated’.
Compared with other respondents, those who preferred euthanasia were older, more likely to regard ‘Physical and psychological comfort’, ‘Control over the future’, ‘Not being a burden to others’ and ‘Unawareness of death’ as important for a good death, and to agree with the statement ‘Physicians are uncomfortable discussing death’. They were less likely to regard ‘Fighting against cancer’ as important for a good death or to agree that ‘Cancer pain is sufficiently relieved if adequately treated’, and more likely to have legal knowledge about euthanasia.
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discussion |
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To our knowledge, this is the first population-based survey clarifying the association between end-of-life care preferences and good-death concepts.
In a scenario where participants had incurable cancer, no physical distress and needed assistance with daily activities, most preferred end-of-life care and death at home or in a PCU. Moreover, PCU-bereaved families were more likely to prefer PCUs than the general population. Thus, PCUs had made a favorable impression on the bereaved families. In Japan, the proportions of cancer patients who died at home or at a PCU in 2003 were only 6% [35] and 4.4% (Hospice Palliative Care Japan, unpublished data), respectively.
In Japan, many people regard a home death as unrealizable, because of insufficiencies in the home-care system and concern about caregiver burden [5]. Thomas and colleagues [36] reported that patient's informal care resources, and their experiences of health and social services, shaped their preferences for place of end-of-life care. Consistent with these recent findings [5, 36], in our current study, respondents who believed that they could not receive in-home care were significantly more likely to prefer hospitals to home. Thus, our results highlight the need for regional palliative-care programs, including home systems [20] and local inpatient services, to create a network and to deliver end-of-life care according to the preferences of patients and families [37]. It is thus important in future studies to clarify what family caregivers regard as a burden and also what patients feel makes them a burden to others in their care settings.
Consistent with findings in Australia [7], approximately 50% of our respondents preferred negotiating with their physician concerning prognostic disclosure. Notably, the preference for prognostic disclosure was associated with the good-death concept (specifically ‘Control over the future’ and ‘Unawareness of death’). This finding suggests that approximately 50% of patients desire some level of negotiation about communication of prognosis, and that some Japanese patients do not necessarily consider autonomy as the most relevant factor, preferring to entrust decisions to their physicians [13]. In addition, ‘Unawareness of death’ seems more important in Japan than in Western countries, so living as usual without a feeling of impending death could be a core factor for the Japanese concept of a good death [21]. Thus, Japanese clinicians should recognize that routine prognostic disclosure and encouraging self-determination might not always be desirable for all patients, and that the physician–patient discussion premised on imminent death and preparing concerns for the aftermath might undermine a good death for some patients. Clinicians, however, face the challenge of helping their patients to achieve a complete life while facing their own mortality at the same time. Thus, communication skills focusing on daily concerns and negotiating short-term goals with careful consideration of the patient's good death concepts are of importance.
When facing severe refractory suffering, most respondents preferred sedation, although some preferred care without sedation or euthanasia. Consistent with previous studies [11, 16, 38], those who wanted care without sedation were more likely to regard preservation of intellectual activities as important for quality of dying, whereas those who preferred euthanasia were more likely to value not being a burden, having symptom control and control over the future. Thus, clinicians should identify good-death concepts and explore the best solution for individuals, particularly through discussions about balancing symptom control and degree of consciousness.
PCU-bereaved families were less likely to prefer euthanasia than the bereaved general population, suggesting that experience of good-quality palliative care influenced their preferences. Physicians should thus communicate empirical evidence of high success rates for pain control and legal issues to their patients.
Our study had several limitations. First, because respondents were not terminally ill, the results could not necessarily be extrapolated to cancer patients. The patient's perspective is important, but we did not survey cancer patients because questions regarding dying were considered too burdensome to such patients in Japan. We believe, however, that this study provides a unique and valuable perspective because bereaved families who had experienced end-of-life care at home, in acute hospitals, and in specialized inpatient PCUs (the best available practices in Japan) provided useful suggestions, and the generalizability was supported by the fact that 40% of the participants in the general population had a chronic disease. Second, the response rate among the general population was low, although similar to the average for population-based surveys in Japan [5]. Thus, a response bias might exist. Moreover, a relatively long interval, such as 10 years, might cause a recall bias, although it yielded similar conclusions to a limit of 5 years; it could also be influenced by changes in medical services over this time period. Third, preferences might change [6, 39] if individuals experienced the situations explored in the scenarios; future studies should evaluate the decision-making process longitudinally.
In conclusion, our analysis revealed that PCU-bereaved families were more likely to prefer PCUs as a place of end-of-life care, and less likely to prefer euthanasia than the general population. The PCUs were well received by bereaved families, and experience of high-quality palliative care influenced their preferences. Systematic efforts to improve the availability of good-quality palliative care are needed. Moreover, end-of-life care preferences were associated with good-death concepts, highlighting the importance of identifying patients’ general goals before discussing specific treatment choices, as recommended in the Education in Palliative and End-of-life Care curriculum [40]. We therefore recommend that health-care providers should identify not only patients’ preferences for end-of-life care, but also their beliefs about a good death, which should help to improve the quality of the dying process.
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appendix |
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end-of -life care preferences (in a scenario where you had incurable cancer)
- (1) Place of end-of-life care and death
If you had a 1–2 month life expectancy and no physical distress, but needed care assistance in your daily activities, which place would you prefer, and as a place of death? (Three possible categories: ‘Home’, ‘Acute hospital’ or ‘PCU’.)
- (2) Prognostic disclosure
If you had a 6-month life expectancy, how would you prefer to initiate a discussion of prognosis; and if you had a life expectancy of 1–2 months? (Four possible categories: ‘Not to discuss at all’; ‘Physician to inform me only if I ask’, ‘Physician to check with me first whether I want to know’ or ‘Physician to initiate a discussion and inform me in detail’.)
- (3) Treatment of severe refractory physical distress
If you had severe refractory distress, would you want the following treatment?
- (a) Treatment so that the patient keeps consciousness clear even if distress is not alleviated (care without sedation). (On a four-point Likert-type scale, ranging from ‘1. Absolutely do not want’ to ‘4. Strongly want’.)
- (b) Administration of sleeping drugs so that the patient feels no distress because of a reduction in patient consciousness’ (palliative sedation therapy). (On a four-point Likert-type scale, ranging from ‘1. Absolutely do not want’ to ‘4. Strongly want’.)
- (c) Administration of lethal medications’ (euthanasia). (On a four-point Likert-type scale, ranging from ‘1. Absolutely do not want’ to ‘4. Strongly want’.)
- (b) Administration of sleeping drugs so that the patient feels no distress because of a reduction in patient consciousness’ (palliative sedation therapy). (On a four-point Likert-type scale, ranging from ‘1. Absolutely do not want’ to ‘4. Strongly want’.)
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Acknowledgements |
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The authors thank K. Inaba for comments on legal aspects of palliative care, and K. Kazuma, T. Sasahara, T. Ashiya, T. Ishihara, T. Hisanaga, T. Matsubara, I. Miyoshi, T. Nakaho, N. Nakashima, H. Onishi, T. Ozawa, K. Suenaga, and T. Tajima for helping to carry out the study. This work was supported by a Health and Labor Sciences Research Grant entitled the Third Term Comprehensive Control Research for Cancer Grant.
Received for publication January 5, 2007. Revision received April 4, 2007. Accepted for publication April 11, 2007.
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