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Research Are Asians comfortable with discussing death in health valuation studies ? A study in multi-ethnic Singapore

H. Wee,Shuchuen Li,F. Xie,Xu-Hao Zhang,N. Luo,Y. Cheung,D. Machin,K. Fong,J. Thumboo

Published 2017 in Unknown venue

ABSTRACT

Background: To characterize ease in discussing death (EID) and its influence on health valuation in a multi-ethnic Asian population and to determine the acceptability of various descriptors of death and "pits"/"all-worst" in health valuation. Methods: In-depth interviews (English or mother-tongue) among adult Chinese, Malay and Indian Singaporeans selected to represent both genders and a wide range of ages/educational levels. Subjects rated using 0–10 visual analogue scales (VAS): (1) EID, (2) acceptability of 8 descriptors for death, and (3) appropriateness of "pits" and "all-worst" as descriptors for the worst possible health state. Subjects also valued 3 health states using VAS followed by time trade-off (TTO). The influence of sociocultural variables on EID and these descriptors was studied using univariable analyses and multiple linear regression (MLR). The influence of EID on VAS/TTO utilities with adjustment for sociocultural variables was assessed using MLR. Results: Subjects (n = 63, 35% Chinese, 32% Malay, median age 44 years) were generally comfortable with discussing death (median EID: 8.0). Only education significantly influenced EID (p = 0.045). EID correlated weakly with VAS/TTO scores (range: VAS: -0.23 to 0.07; TTO: -0.14 to 0.11). All subjects felt "passed away", "departed" and "deceased" were most acceptable (median acceptability: 8.0) while "sudden death" and "immediate death" were least acceptable (median acceptability: 5.0). Subjects clearly preferred "all-worst" to "pits" (63% vs. 19%, p < 0.001). Conclusion: Singaporeans were generally comfortable with discussing death and had clear preferences for several descriptors of death and for "all-worst". EID is unlikely to influence health preference measurement in health valuation studies. Published: 05 December 2006 Health and Quality of Life Outcomes 2006, 4:93 doi:10.1186/1477-7525-4-93 Received: 25 September 2006 Accepted: 05 December 2006 This article is available from: http://www.hqlo.com/content/4/1/93 © 2006 Wee et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Health and Quality of Life Outcomes 2006, 4:93 http://www.hqlo.com/content/4/1/93 Page 2 of 12 (page number not for citation purposes) Background Health valuation studies are performed to understand population preferences for various health states and are important in informing healthcare resource allocation [1]. The topic of death is invariably raised in such studies as subjects are required to value death either directly, for example, when visual analogue scales (VAS) are used or indirectly, for example, when time trade-off (TTO) or standard gamble (SG) are used [2]. Previous studies have found that health preferences may be influenced by respondent characteristics such as age [3], social class [4], educational status [4] and presence of illness [5,6]. However, to the best of our knowledge, no studies have investigated how willingness to discuss death may affect health preference measurements in health valuation studies. Reluctance to discuss death may potentially reduce participation in health valuation studies, thus resulting in selection bias. It may also increase the prevalence of missing valuation data for the health state of being dead, which is particularly problematic because these values are required to rescale raw scores onto a 0 (dead) to 1 (perfect health) scale [7]. These missing values would also render other associated data unusable, resulting in significant data wastage [8]. Reported prevalence of missing dead valuations ranged from 8% to 71% [8-10]. Reluctance to discuss death may be particularly relevant in an Asian population, where, for example, many Japanese and Chinese avoid talking about death because they believe that doing so may bring misfortune [11-13]. Differences in Asian and non-Asian views about death and dying could potentially influence health preference measurements in several ways. First, in general, Asians may view death and other health-related decisions as family rather than personal matters, in contrast to Caucasians who may value individualism and autonomy [14]. As such, Asians are more likely to value health by taking their families' needs into consideration. Second, Asians, notably the Japanese, generally prefer not to be a burden to others [15]. Hence, they are more likely than Caucasians to assign higher values for the health state of being dead and lower values to those health states in which they are dependent on others (e.g. confined to bed) [16]. By highlighting these cultural differences, we are not implying that views on death are clearly demarcated between Asians and Caucasians. Rather, these important cultural differences suggest that health preferences generated from Caucasian populations may not fully reflect health preferences among Asians and therefore may not be suitable for use in healthcare decision making in Asia. An understanding of the Asian perception towards death is also necessary for handling and interpreting logically inconsistent values in health preferences [17], because the logical order of health states (from worst to best) may be different in different cultures. An understanding of terms used to describe the worst possible health state is also germane in this context, in particular as the term "pits", which has been used in health preference studies, is a British colloquial term which may not be well-understood in this Asian population. The aims of this study were thus to characterize ease in discussing death (EID) and its influence on health preference measurement and to determine the acceptability of various descriptors of death and "pits"/"all-worst" in health valuation in a multi-ethnic Asian population. We characterised EID and its influence on health preference measurement by evaluating subjects' EID and explored the influence of sociocultural variables on EID. We also studied the influence of EID on VAS/TTO utilities with and without adjustments for sociocultural variables, as this could impact on health preferences and might therefore need to be adjusted for in health valuation studies. We determined the acceptability of various descriptors of death and "pits"/"all-worst" in health valuation and explored the influence of sociocultural variables on the acceptability of these descriptors (of death, pits and allworst). We studied the appropriateness of these commonly used descriptors because they represent alternative lower anchors for the continuum of health in health valuation studies, with perfect health representing the upper anchor. Hence, the choice of words to describe these health states could potentially influence health preference measurements. Methods Subjects In this Institutional Review Board approved study, indepth interviews in either English or the subject's mothertongue (i.e. Chinese, Malay or Tamil) by interviewers of the same ethnic group were conducted among consenting Chinese, Malay and Indian Singaporeans (distribution in the general population: 78% Chinese, 14% Malay, 7% Indians; % English-speaking only: Chinese – 16%, Malays – 2%, Indians: 22%; % Bilinguals: Chinese – 32%, Malays: 20%, Indians: 55%) with at least 6 years of education. The various mother-tongue versions of the questionnaire were translated based on the English version. To achieve adequate representation, 2 male subjects (one speaking English, the other his respective mother tongue) and 2 female subjects (one speaking English, the other her respective mother tongue) from each age band (20–29, 30–39, 40–49, 50–59, >60) were recruited from the general population, giving a minimum of 20 subjects per ethnic group. Study design This study was conducted in 3 stages. First, subjects were asked to comment on and rate, using a 0 to 10 horizontal Health and Quality of Life Outcomes 2006, 4:93 http://www.hqlo.com/content/4/1/93 Page 3 of 12 (page number not for citation purposes) VAS, (1) EID (VAS anchors: most comfortable vs. least comfortable) and (2) self-reported religiosity (a potential determinant of EID; measured in response to the question, "On a scale of 0 to 10, how religious do you feel yourself to be?"). Second, subjects were asked about their views regarding death, several descriptors of death and "pits"/"all-worst". To facilitate the discussion, interviewers prompted subjects with questions such as "How comfortable are you with discussing death?", "Do you think it is a taboo to discuss death?", "Do you believe in life after death?". Subjects' comments were recorded verbatim. Subjects were also asked to comment on and rate, using a 0 to 10 horizontal VAS, (1) acceptability of eight commonly used descriptors of death, i.e. "dead", "passed away", "death", "deceased", "demised", "departed", "sudden death" and "immediate death" (VAS anchors: most acceptable vs. least acceptable) and (2) appropriateness of "pits" and "all-worst" (VAS anchors: most appropriate vs. least appropriate) in describing the worst possible health state (the descriptors were shown on two separate cards). Third, subjects completed a simple health valuation exercise to determine their preferences for 3 hypothetical EQ5D defined health states using a 0 to 10 vertical VAS (anchors: best imaginable health state vs. worst imaginable health state) followed by the TTO method. Each health state on the EQ-5D consists of one of 3 possible levels from each of 5 single-item health dimensions. Perfect health on the EQ-5D would be described as 11111 while the worst possible EQ-5D health state would be described as 33333. The 3 health states used in this study were selected from those used in the EQ-5D MVH protocol [18] representing mild (11122), moderate (23321) and severe (32313) impairments. Sociode

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