In this study, we identified four judgment grounds that lead to decision-making by surrogate decision-makers in Japan. With respect to Type 1-3 factors, in view of the standards proposed by Buchanan and Brock for guiding surrogate choices, the Type 3 (family-preference oriented) factor represents one that must be disregarded to the extent possible in the reasoning process leading to surrogate decisions. However, the results of the present study revealed just how difficult it is to eliminate this factor. In the following sections, we analyze this factor, which reflects the difficulty of making surrogate decisions based on the patient’s preferences and/or best interests, while considering the background of Japanese society. We also comment on the influence of ACP that is expected to become more widely used in the future.
<Culture in which conversations about EOL rarely occur>
One of the subcategories extracted from the results of the present analysis was <I did not know what was good for the patient>. This indicated a struggle that, no matter how hard the surrogate decision-maker tries to guess the patient’s preferences, there is no way of knowing what the patient would actually choose, or how (i.e., based on what values). During the interviews, surrogate decision-makers described difficulties presuming the patient’s preferences. In other words, it is difficult for surrogate decision-makers to see things from the patient’s point of view.
One factor contributing to this difficulty is a culture in Japan that does not encourage having specific conversations about EOL (end of life). Such talk is generally considered bad luck and even taboo in some families. According to actual data, only 5.5% of Japanese citizens reportedly talk about medical treatment in EOL situations with their family or medical care personnel, and only roughly 8% put their intentions in writing beforehand (14). Thus, it is likely that the number of surrogate decision-makers who clearly recognize the patient’s preferences is low.
<Changes in social circumstances>
In 1980, almost 70% of elderly people aged ≥65 years lived with their children. By 2015, this rate had significantly decreased to 39.0%. Also, the rate of double-income families, which was 49.3% in 1980, has been rising year by year, and reached 64.4% in 2015. (15)These data suggest an increase in the number of adults (i.e., offspring of elderly individuals) who are not at home all day. With respect to the degree of communication between parents and children who do not live in the same house, Japan reportedly has the lowest frequency of older individuals meeting or contacting (e.g., by phone) their non-cohabiting children, relative to the United States, Germany, and Sweden (16). Although these international comparisons are based on a small number of countries, in Japan, the frequency of communication between elderly individuals and their non-cohabiting children or other family members may be low, according to international averages.
Based on these reports, we predict that in recent decades, it has become less common for children (i.e., potential surrogate decision-makers) to share time and space with their parents (i.e., patients) on a daily basis. This suggests that children in this generation may not be able to easily understand or imagine how their parents live, or what they value in their daily living. This may become an obstacle when they need to figure out what the patient preferences are as a surrogate decision-maker. It is also possible that this situation underlies the practice of surrogate decision-making for which factors other than the patient’s preferences or best interests form the judgment grounds. All 14 of the surrogate decision-makers included in this study were children of patients or the children’s spouses. Although their working statuses are unclear, the rate of cohabitation was 20%. Thus, their circumstances might have made it difficult to imagine the life and values of the patient.
<Time restriction in surrogate decision-making >
When considering the judgment grounds in surrogate decision-making, it is likely that time restrictions have some influence. According to a report from the United States, 48% of surrogate decision-makers had to make critical decisions about life-sustaining treatment for patients aged ≥65 years within 48 hours after hospitalization in acute hospitals (17). Thus, in acute hospital settings, surrogate decision-makers may be forced to make these decisions in a short period of time. If a surrogate decision-maker was to make decisions in such a short time frame on behalf of an elderly patient who developed a serious life-threatening disease, to what extent would the surrogate decision-maker weigh the patient’s preferences? There were some cases in the present study in which the family did not choose life-prolonging treatment (e.g., <I judged it realistically impossible to provide home care>). We presume that, in a setting that requires judgment regarding treatment options related to life support, it can readily be envisioned that the life of the surrogate decision-maker (family) would be affected somewhat depending on outcomes after treatment, especially when the patient’s condition is unfavorable. In such situations, the surrogate decision-maker might make a hasty decision about which treatment to choose, thinking it realistically impossible to bear the burden of care, given their own life circumstances.
<Novelty of Type 4 factor>
The Type 4 factor reflects the reasoning of surrogate decision-makers who consider not only preferences of the patient but also those of family members in an effort to balance the two. Many previous reports examining the judgment grounds in surrogate decision-making only introduced one basis for judgment per case of surrogate decision-making, i.e., one that serves as the core of decision-making. On the other hand, the present study identified 3 types of factors that are not necessarily mutually exclusive; in fact, our findings suggested the possibility that in actual decision-making, multiple types of elements might be considered in reasoning and deriving surrogate decisions. The present study analyzed data obtained from an interview survey pertaining to the entire process of surrogate decision-making up to the judgment stage. For this reason, multiple judgment grounds were identified for each case of surrogate decision-making. From 14 cases of surrogate decision-making subjected to analysis, 55 codes relating to the judgement grounds were extracted. We presume these codes were considered in combination in actual settings of surrogate decision-making, and perhaps in a comparative manner. Those included in the Type 4 factor were categorized separately from others intentionally, since Type 1 - 3 factors reflected single judgement ground, whereas Type 4 reflected the outcome of comparative weighing of multiple grounds. In the United States, where patient autonomy is valued in most cases, there have been reports that, in actuality, surrogate decision-makers derive decisions based on their own values and circumstances in some cases (18-19). In Japan, the present report is the first to address this issue.
<Concerns about the potential psychological difficulties in surrogate decision-making as the consequence of wide use of ACP in Japan>
ACP, which is expected to become more prevalent in the future, has been suggested to activate communication between physicians and surrogate decision-makers (20). While the widespread use of ACP is desirable, there are concerns that the increased use of ACP might complicate the process of considering judgment grounds in surrogate decision-making and also increase the psychological burden on surrogate decision-makers. In other words, by clearly recognizing patient preferences (more than they already do), the surrogate decision-maker may end up with more conflicts in surrogate decision-making. This is because, as demonstrated by the present study, there are actual situations in which surrogate decision-making is practiced based on preferences of the surrogate decision-maker, which differ from those of the patient.
In Japan, patients rarely talk about their own preferences and values. Having advance discussions more often would allow the surrogate decision-maker to be more aware of patient preferences than they have in the past. This may help identify judgment grounds in surrogate decision-making that are rooted in patient preferences and best interests. However, this may also lead to a clearer awareness among surrogate decision-makers of the fact that their preferences may differ from those of the patient. As a result, we worry that surrogate decision-makers might become more conflicted as they struggle to decide whether to prioritize patient preferences or those of their own. This is a situation that can be inferred from the current state of surrogate decision-making as revealed in the present study, i.e., decisions are made on bases rooted in the preferences of the surrogate decision-maker. We surmise that clarifying patient preferences does not necessarily result in a situation in which those preferences are smoothly prioritized, but rather causes a struggle in surrogate decision-makers who must consider the preferences of both patients and their own families. Whether such struggles are good or bad is beyond the scope of this discussion. Nonetheless, it should be noted that this struggle may complicate the process of surrogate decision-making. Rather than focusing solely on the principles of respect for patient autonomy and standards of decision-making, the judgment grounds in surrogate decision-making should be discussed while considering multiple factors including culture, social situation, and circumstances of surrogate decision-makers. Such approaches in decision making should be allowed for future surrogate decision-makers and medical practitioners in Japan. Given that some patients think it is permissible that, in addition to their own preferences, preferences of the surrogate decision-maker may be prioritized in the surrogate decision-making process, as revealed by previous studies (21-22).
Some patients may want to be aware of possible conflicts before choosing their surrogate decision-makers. Surrogates decision-makers may experience increased conflict when they learn more about patient preferences; however, ACP discussions could lead the patient to choose a different surrogate decision-maker who may not have such conflicts, or who may be more willing to enact the patient’s wishes. We believe that the results and discussions described so far can be useful for health care professionals in Japan as well as in other countries where surrogate decisions are made with a culture and background similar to Japan. For example, it is the case in the region that does not prioritize patient self-determination as much as the United States, but also the case in the society that considers the interests of people surrounding the patient, including family members. Moreover, it has been reported that ACP is not always performed in all patients, even in Europe and the United States, and not all patients want their autonomy to be respected ((23)Br J Gen Pract. 2013;63:e657–68.). As long as there is a possibility that healthcare professionals encounter cases similar to Japanese culture, this study could contribute to more practical and complicated deliberation concerning surrogate decision-making involving international audiences as well as healthcare professionals worldwide.
Strengths and limitations
The present study analyses were performed by a multidisciplinary group of 6 professionals including non-medical practitioners (physician, nurse, pharmacist, philosopher). Discussions were carried out among these analysts from various perspectives, making this system more favorable compared to those adopted by previous studies. In addition, in devising the analysis method, we referenced the “Ueno method” which is based on the KJ method. This allowed us to analyze the entire process of surrogate decision-making and clarify the judgment grounds. The “Ueno method” is superior to other methods in that it allows for the analysis of entire interview contents without omission.
This study also has limitations worth noting. First, since the recruitment process was outsourced to a web research company, interview respondents were limited to Internet users. In addition, participants were restricted to those living in the suburbs of Tokyo due to the location of the interview site. Potential bias also exists as the detailed characteristics of surrogate decision-makers, such as the number of years of care experience, educational background, economic status, religion, and family composition of the patient other than the surrogate decision-maker, were not available. However, as we analyzed data from the 14 participants, we achieved theoretical saturation of concepts extracted as judgment grounds in surrogate decision-making. Thus, we did not increase the sample size any further.
The second limitation is recall bias related to the timing of the interviews. The interview survey was performed within 6 months to 3 years after surrogate decision-making. Due to the time lag, interview contents might have differed from actual events. However, given that experiences of surrogate decision-making might be connected to grief, ethical consideration was given such that interviews were performed after a certain amount of time had passed.
Finally, there was also a limitation regarding the “Ueno method.” Although this method has the analytical advantage discussed above, it has not been validated internationally. No English description is available, and no studies using this method have been reported internationally.
Despite these limitations, the present study provides novel insights into the judgment grounds in surrogate decision-making. A large-scale cross-sectional study on this topic based on the present results would help clarify the actual diversity and its frequency of grounds used for judgment in surrogate decision-making in Japan.