Shared Decision Making and Advance Care Planning in the Context of Promoting Home Medical Care in Japan: A Narrative Review

ABSTRACT

Japan's rapidly aging population has heightened the need for high‐quality home medical care based on patient‐centered care (PCC). Shared decision making (SDM) and advance care planning (ACP) are essential processes for achieving PCC; however, their implementation in Japan remains limited. This narrative review summarizes theoretical foundations, international evidence, and current challenges in SDM and ACP, and discusses future directions for their integration into Japanese home medical care. Globally, SDM has been promoted through decision aids and policy initiatives, yet barriers such as limited consultation time, insufficient provider support, and variability in outcome measurement persist. In Japan, although professional societies have issued guidelines to promote SDM and ACP, awareness and adoption remain inadequate, partly due to entrenched informed consent practices, provider knowledge gaps, and limited patient involvement. ACP in home care has demonstrated benefits—including enhanced caregiver security, improved patient–provider communication, and greater support for home‐based end‐of‐life care—yet real‐world implementation is inconsistent. Cultural factors, such as family‐centered decision making and reluctance to discuss death, further constrain uptake. Evidence increasingly emphasizes the need for integrating SDM and ACP as a continuous, iterative process, enabling both advance preparation and real‐time decision making. Training programs incorporating SDM skills have shown potential to shift provider behavior toward PCC. Emerging digital and AI‐based tools may expand opportunities for structured conversations and preference documentation. Advancing SDM and ACP in Japanese home medical care will require system‐level reforms, workforce training, and ICT‐supported care models. Japan's experience may also provide insights for other rapidly aging societies.

Shared decision making (SDM) and advance care planning (ACP) are essential to achieving patient‐centered home medical care in Japan. Integrating SDM and ACP as a continuous, iterative process may overcome cultural, clinical, and system‐level barriers and better align care with patients' values and preferences.

1. Introduction

Japan has become a super‐aged society, and the number of older adults spending their final stage of life at home or in long‐term care facilities while receiving care aligned with their preferences is gradually increasing [1, 2]. In response, the national government has promoted home medical care through multidisciplinary collaboration centered on physicians [1]. Japan has also introduced a nationwide community‐based integrated care system designed to provide comprehensive, coordinated support for older adults with chronic diseases or disabilities while controlling rising social security expenditures [3]. The system integrates medical care, long‐term care services, preventive care, housing, and social support within a defined geographic area, often aligned with a junior high school district. This geographically based framework facilitates collaboration among healthcare professionals, long‐term care providers, care managers, and local governments, thereby helping to reduce fragmentation between the medical and social care sectors. Home medical care is central to achieving this system [4].

The Ministry of Health, Labour and Welfare (MHLW) identifies four essential medical functions for home healthcare: (1) discharge support through collaboration with hospital staff, (2) daily life support, including assistance for family caregivers and palliative care, (3) emergency home visits for acute illnesses or exacerbations of chronic conditions, and (4) home‐based end‐of‐life care [5, 6]. These functions must be implemented based on the principle of patient‐centered care (PCC) [7]. The concept of PCC, originally developed by the Picker Institute [8], emphasizes active collaboration and shared decision making (SDM) among patients, families, and healthcare providers to design and manage individualized care plans [9]. Barry similarly underscores SDM as central to achieving PCC [10].

In relation to advance care planning (ACP), NEJM Catalyst highlights that respecting patients' and families' values, cultural backgrounds, and socioeconomic circumstances is a key component of PCC, illustrating the close conceptual link between SDM and ACP [9]. Hayashi et al. also reported that high‐quality PCC significantly promotes participation in ACP [11]. Thus, SDM and ACP represent essential processes for applying PCC in home medical care.

Despite this importance, no comprehensive review has examined the current state of SDM and ACP in Japanese home medical care, related challenges, or future directions. This article aims to summarize current practices and research trends in SDM and ACP in Japan, identify existing challenges, and propose future directions for implementation.

2. Methods

2.1. Study Design

This study employed a narrative review design to examine the concepts, implementation, challenges, and future directions of SDM and ACP in home medical care, with a focus on Japan. A narrative approach was selected to enable integrative interpretation of diverse evidence, including theoretical frameworks, empirical studies, and policy documents.

2.2. Data Sources and Search Strategy

This narrative review explored concepts, implementation, challenges, and future directions of SDM and ACP in the context of home medical care in Japan. Literature searches were conducted across PubMed/MEDLINE, Web of Science, Semantic Scholar, and Ichushi‐Web, covering all publications from database inception through November 2025. Search terms included combinations of “shared decision making,” “advance care planning,” “patient‐centered care,” “home medical care,” and “Japan,” along with their corresponding Japanese‐language terms. Additionally, reference lists of relevant articles were manually screened to identify further pertinent sources.

2.3. Supplementary Sources

To capture system‐ and policy‐level perspectives, policy documents and guidelines from Japanese governmental agencies and professional societies, as well as relevant international guidelines, were included.

2.4. Eligibility Criteria

Publications were considered eligible if they addressed SDM or ACP in the context of home medical care, primary care, geriatrics, palliative care, or chronic disease management. Eligible sources included original studies, reviews, qualitative research, policy papers, or consensus statements. Studies focused solely on acute inpatient care without relevance to decision‐making processes were excluded.

2.5. Data Extraction and Conceptual Framework

In reviewing the literature, particular attention was given to how SDM and ACP were defined and applied across studies. For this review, SDM was defined following the framework proposed by Charles et al. [12], which includes: (1) involvement of at least two participants—a physician and a patient; (2) mutual sharing of information; (3) collaborative engagement to reach consensus on preferred treatment; and (4) agreement on the treatment to be implemented.

ACP was defined according to the international consensus definition by Sudore et al. [13], conceptualizing it as a process that helps adults understand and share their values, goals, and preferences regarding future medical care. In addition, we adopted the definition provided by the Japan Geriatrics Society [14], which situates ACP as a person‐centered process that respects individual values within the Japanese healthcare and sociocultural context. These definitions served as conceptual reference points to guide literature selection, data extraction, and thematic synthesis throughout the review.

2.6. Relationship Between SDM and ACP

In this review, SDM and ACP are conceptualized as complementary, iterative processes. ACP facilitates anticipatory preparation for future healthcare decisions, while SDM guides real‐time decision‐making when specific clinical choices arise. This integrated perspective is particularly relevant to home medical care, where long‐term patient–clinician relationships and repeated decision points are common.

3. Results

3.1. Theory and Practice of SDM

3.1.1. Fundamentals of SDM

SDM draws on various theoretical frameworks—including prospect theory and fuzzy logic—in addition to classical decision theory, reflecting the diversification of patient values, increased treatment options, and heightened awareness of uncertainty in medical decision making [15, 16, 17]. Over the past four decades, SDM has evolved from these theoretical foundations into a practical methodology, and many countries have incorporated it into healthcare policies and guidelines [18, 19, 20]. Widely used SDM frameworks include the SDM 3‐Talk Model [21] and the 9‐step SDM‐Q‐9 assessment model [22, 23]. Although the definition of SDM continues to evolve and no universal definition has been established [24, 25], the definition by Charles et al. [12] (see Section 2) has been frequently cited.

3.1.2. Current State of SDM Worldwide

Evidence regarding SDM implementation continues to expand internationally; however, research remains subject to substantial biases, requiring further refinement [25, 26, 27, 28, 29]. SDM has also progressed alongside research on decision aids (DAs) [27, 29].

A 2015 systematic review demonstrated variation in SDM outcomes depending on who assessed them: 52% of patient‐reported outcomes showed significant positive effects, compared with 21% of observer‐reported outcomes and none of the clinician‐reported outcomes. SDM was most strongly associated with affective–cognitive outcomes (54%), followed by behavioral outcomes (37%) and health outcomes (25%) [26].

A 2017 Cochrane review reported that DAs improve participants' knowledge, understanding, and recognition of treatment options, and enhance alignment between personal values and care choices [27]. DAs reduced indecision, improved communication between patients and physicians, and enhanced satisfaction with the decision‐making process. Use of DAs increased consultation time by only 2.6 min on average. A 2020 systematic review of SDM in primary care similarly reported that DAs reduce decision conflict and improve condition‐related knowledge, risk perception, and satisfaction with decisions [30].

A 2023 scoping review evaluated SDM across individual, interactional, organizational, system‐level, and clinical domains [25]. Most studies assessed SDM at the individual and clinical levels, and only a few at the organizational level. Of 296 reported outcomes, 81 showed positive effects, 205 showed no effect, seven indicated negative effects, and three were mixed. The review highlights substantial variation in SDM effectiveness, partly attributable to differences in clinical contexts, urgency, and healthcare system structure across countries.

A 2024 Cochrane review updated evidence on DAs, showing no major changes in overall trends since 2015. DAs did not increase decision regret and posed no measurable harms. When used before consultations, DAs did not extend consultation time; when used during consultations, they added approximately 1.5 min on average [29]. These findings suggest that DAs can support SDM without imposing major time burdens.

3.1.3. Challenges in Implementing SDM in Healthcare Worldwide

A lack of robust evidence remains a concern across many SDM studies. Limited clinical time is widely cited as the most significant barrier to SDM implementation, and simply providing additional time or resources is insufficient; provider support and motivation are also critical [31].

A 2020 US study reported that the Centers for Medicare and Medicaid Services (CMS) require SDM using DAs for certain conditions (e.g., lung cancer screening, atrial fibrillation). This requirement highlighted challenges at policy, provider, and evaluation levels [32]. At the policy level, implementation guidelines for mandated SDM were lacking. At the individual level, providers faced difficulty adapting standardized DAs to patients with varying health literacy. Evaluation challenges included the absence of clear outcome measures and clinical workflows to determine whether SDM was provided to eligible patients.

Efforts to overcome these barriers include integrating SDM support into electronic health record (EHR) systems [33]. EHR‐based tools—such as individualized risk calculators, structured presentation of test results, automated SDM prompts, documentation templates, and preference‐alignment monitors—improved SDM outcomes in 94% of studies [33]. However, challenges remain regarding provider awareness and the effective use of these tools.

3.1.4. Current State of SDM and Challenges to Implementation in Japan

In Japan, professional societies such as the Japanese Geriatrics Society [14, 34] and the Japanese Society for Dialysis Therapy [35] have issued guidelines promoting SDM. Correspondingly, SDM‐related research has increased, and similar to findings in other countries, SDM has been shown to strengthen patient–physician trust and improve satisfaction with care [36]. Many Japanese patients also prefer to participate in treatment decisions through SDM [37].

Studies of SDM education in Japan show mixed results: some report improved SDM scores after training [38, 39], while others find no significant differences between intervention and control groups [40], suggesting the need for further research.

Several challenges unique to Japan have been identified. A mismatch exists between patients' and physicians' perceptions of desired involvement. For instance, among prostate cancer patients, 41% preferred active involvement and 48% preferred SDM, yet 29% of physicians underestimated patients' desire for participation [41]. Clinical trial coordinators—typically oriented toward informed consent (IC)—expressed positive attitudes toward SDM but lacked accurate knowledge of its principles [42]. Surveys in primary care settings indicate that IC remains the predominant approach to decision support [43]. Moreover, only 4.7% of patients selecting renal replacement therapy were aware of SDM beforehand [44], suggesting insufficient awareness among both providers and patients.

Japan's long‐standing reliance on IC, along with its entrenched cultural and procedural norms, contributes to challenges in adopting SDM. Canadian guidelines similarly note the limitations of IC, emphasizing that consent forms hold limited value without adequate explanation and dialogue, and that decision making should be a conversational process [45].

To promote SDM in Japan, several initiatives are needed: (1) increasing awareness of SDM among healthcare providers and the public; (2) accumulating evidence of SDM's effectiveness in Japanese clinical contexts; and (3) developing digital decision‐support tools that reduce time burden.

Digital tools, in particular, may simultaneously support research and promote widespread implementation of SDM.

3.2. The Definition and Practice of ACP

Sudore et al. [13] and Rietjens et al. [46] defined ACP through a worldwide multidisciplinary Delphi panel. In 2020, the Japan Geriatrics Society [14] proposed its own definition of ACP as “a process that supports individuals in making decisions about their future medical and long‐term care, with respect for each person as a human being.” This definition was developed specifically to reflect Japan's unique social, cultural, and familial contexts, which differ from those emphasized in Western conceptualizations of ACP. This represents the first ACP definition published by an academic society in Japan.

The Ministry of Health, Labour and Welfare (MHLW) incorporated the concept of ACP into its Guidelines for Medical and Care Decision‐Making Processes at the End of Life [47] and began promoting ACP awareness among healthcare professionals. It also adopted the nickname “Jinsei kaigi (life conference)” for ACP [48] and launched nationwide public awareness campaigns. A 2023 MHLW report [49] based on The Survey of Attitudes Toward Medical and Nursing Care in the End‐of‐Life showed that physician awareness of ACP increased to 45.9% (from 22.4% in 2017). However, 47.5% of physicians (up from 35.4% in 2017) reported not having detailed discussions with patients regarding the medical care and support they would prefer to receive—or avoid—at the end of life. These findings suggest that the practice of decision support has stagnated despite increased awareness.

Another report [50] surveying 258 geriatric specialists from the Japan Geriatrics Society examined ACP implementation rates and related factors during the COVID‐19 pandemic. Only 28.7% reported practicing ACP. Although the Japanese Geriatrics Society has actively promoted ACP, including issuing recommendations [51] and providing the national definition, these results raise concerns about whether ACP practice is truly expanding in clinical settings.

Goto et al. [52] investigated ACP implementation and challenges in Japanese primary care settings using a cross‐sectional survey. Although the response rate was only 7%, 65.7% of respondents reported implementing ACP, suggesting that ACP practice—particularly in home‐based medical care—may be more prevalent than in general clinical settings in Japan.

3.2.1. Possible Benefits of Implementing ACP in Home Medical Care in Japan

ACP in Japan's home medical care setting has shown multiple benefits for patients, families, and healthcare providers. A prospective cohort study (n = 169) in home‐visit nursing found that ACP processes improved family caregivers' sense of security over a 3‐month period, as measured by the Sense of Security Questionnaire [53]. In home care clinics, higher levels of PCC—assessed using the Japanese version of the Primary Care Assessment Tool or its short form—were associated with greater ACP participation, more substantive discussions, and clearer expression of treatment preferences [11].

Among patients with advanced cancer and those receiving primary care, ACP discussions were linked to better alignment between end‐of‐life outcomes and patient wishes, including a higher likelihood of home death [54]. Surveys of primary care physicians and qualitative studies also noted that structured, team‐based ACP approaches—often guided by official guidelines or narrative frameworks—enhanced provider awareness, trust, and interprofessional collaboration [55]. Moderating factors include the nature of caregiver relationships (e.g., adult children balancing multiple roles), overall care quality, provider engagement, and broader cultural or system‐level influences. Collectively, these findings indicate that patient‐centered, multidisciplinary ACP implementation yields tangible benefits within Japan's home medical care context.

3.2.2. Research Findings on ACP Outcomes in Japan and Abroad

McMahan et al. [56] conducted a scoping review of randomized controlled trials on ACP for adults published between January 2010 and March 2020. They concluded that ACP consistently improves patient preparedness for future medical care, facilitates communication between patients and healthcare providers, and enhances documentation of care preferences. Although satisfaction among patients, families, and healthcare professionals improved, and the psychological burden on families and surrogate decision‐makers decreased, little improvement was observed in goal‐concordant care or patient quality of life (QOL). The authors emphasized that a single intervention is insufficient due to the interconnected “six pillars” of ACP: patients, families, healthcare providers, communities, systems, and policies.

Similarly, an overview of 80 systematic reviews (1600 articles) by Jimenez et al. [57] found no strong evidence that ACP improves end‐of‐life decision‐making, enhances goal‐concordant care, or increases perceived care quality.

In response, Morrison [58] proposed designating trusted surrogate decision‐makers in advance and strengthening real‐time SDM between proxies and clinicians when actual—not hypothetical—medical decisions arise.

3.3. Need for Integration of SDM and ACP in Home Medical Care

Following Morrison's perspective [58], global discussions have examined how to integrate SDM and ACP. The Japan Geriatrics Society states in its position statement [14] that the aim of ACP is to conduct a shared, person‐centered decision‐making process that respects the individual as a human being. This process enables healthcare providers and family members to appropriately understand and honor the patient's wishes and preferences—even when the patient can no longer express them verbally or nonverbally. Thus, the Society emphasizes the central role of SDM in ACP implementation.

Hickman et al. [59] also responded to Morrison's critique by proposing an expanded concept of ACP. They introduced the “Care Planning Umbrella,” which reframes ACP as a holistic, lifelong process preparing patients and surrogates for communication and decision‐making across all life stages. In this framework, QOL forms the foundation and encompasses both real‐time (“in‐the‐moment”) and advance decisions across healthy, chronic illness, and end‐of‐life phases. Because “in‐the‐moment” decisions correspond to SDM, the framework implies that ACP and SDM operate simultaneously throughout the care continuum.

Sloan et al. [60] reported that SDM tools facilitate ACP and goal‐of‐care discussions in serious noncancer illnesses and may improve patient satisfaction with communication and advance directive documentation. Similarly, Rosca et al. [61] argued that SDM and ACP should be integrated as components of a single iterative process in which all key decision‐makers can contribute their expertise and perspectives to care planning.

3.4. Challenges in Decision‐Making in the Current Practice of Home Medical Care

In home medical care, numerous critical decision‐making moments arise, including decisions regarding the transition to home care, selection of treatment options (e.g., artificial nutrition and respiratory management), protocols for responding to sudden changes in condition, and determining the preferred place of end‐of‐life care. However, a cross‐sectional study of 337 dyads of home medical care patients (mean age 86 years) and family surrogates in Japan by Tsuda et al. [62] found that only 1.9% had written advance directives, while 32% delegated all decisions to physicians or family members. Among advocates, 21.9% preferred that physicians make decisions on their behalf. Lack of care goal discussions (OR 2.88) and patients' verbal wishes or delegation to others (OR 2.51) were associated with advocates' preference for physician‐led decision‐making. Many patients preferred delegation over preparing advance directives, increasing families' dependence on physicians. The authors concluded that qualified ACP is needed to promote family discussions and enhance advocates' readiness for decision‐making.

Regarding social and cultural barriers to ACP in Japan, Naito et al. [63] provided comprehensive evidence based on interviews with 11 community nurses, identifying three major cultural barriers: (1) the complexity of family power dynamics, (2) cultural taboos surrounding death‐related discussions, and (3) traditional beliefs that inhibit open conversations about end‐of‐life care. These inhibiting factors are not unique to Japan. A review conducted by ACP experts in six Asian countries [64] found that population aging has intensified the need for end‐of‐life care, but Confucian values and filial piety often subordinate patient autonomy to family and physician authority in clinical decision‐making.

In summary, SDM and ACP in home‐based care face three major challenges. First, policy barriers include insufficient implementation funding despite supportive legislation and misaligned payment incentives that prioritize efficiency over time‐intensive discussions [65]. Second, clinical barriers involve clinicians trained in paternalistic communication models [66] and a lack of ACP‐related knowledge, skills, and formal education among healthcare professionals in Asia [67]. Third, cultural barriers reflect East Asian family‐centered decision‐making rooted in Confucianism, which often conflicts with Western notions of individual autonomy [68]. Addressing these challenges requires culturally adapted, communication‐focused approaches supported by enhanced professional education and institutional infrastructure [69, 70].

3.5. Possible Shift Through Training or Educational Programs From Family‐ and Provider‐Centered Care to PCC

Although several reports support a family‐centered approach to decision‐making support [64, 71], uncritically extending this perspective may inadvertently validate family‐driven decisions for individuals with limited decision‐making capacity. To uphold the dignity of people with dementia, it is essential to listen carefully to their personal narratives and life histories, prioritizing their voices over family input [72]. Komatsu et al. [72] found that Japanese long‐term care settings often prioritize family wishes over the direct involvement of patients living with dementia (PLWD) in decision‐making, frequently without adequate assessment of patients' decision‐making abilities. This reflects cultural influences that emphasize family‐centered decision‐making. However, facilities offering training in decision‐making support and ACP demonstrated significantly higher implementation of person‐centered practices. The authors therefore recommend expanding SDM and ACP training to better support the autonomy and preferences of PLWD in care decisions.

Similarly, Goto et al. [39] evaluated an online ACP training program that incorporated SDM skill development during the COVID‐19 pandemic. The program significantly improved participants' SDM skills and shifted decision‐making from a provider‐centered to a patient‐centered approach. These findings indicate that even in Japan, where family‐centered care remains dominant, SDM and ACP training can foster behavioral changes among healthcare professionals toward more PCC.

3.6. New Developments for Promoting SDM and ACP (Global Trends)

A growing body of research has explored the use of Information and Communication Technologies (ICTs) in ACP and SDM. A systematic review by Ostherr et al. [73] identified 11 types of technologies used in end‐of‐life care, including websites, videos, telephone, videoconferencing, and SMS messaging. These tools were primarily used for information provision, DAs, and promotion of ACP. Digital platforms such as Koda Health [74] and Accordons‐nous [75] have also been shown to enhance accessibility and patient engagement.

Generative AI demonstrates promising potential in supporting SDM and ACP, particularly through its capacity to analyze and synthesize complex medical information. Baig et al. [76] reported that generative AI may enhance personalized care planning by facilitating communication, strategy development, and collaboration among stakeholders, although they did not specify applications related directly to SDM and ACP. Bowles et al. [77] showed that generative AI can translate administrative claims data into narrative summaries to assess palliative care needs. However, researchers caution against overreliance on AI, emphasizing that it should remain a supportive tool rather than a replacement for human judgment. Di Palma et al. [78] underscored the importance of maintaining transparency and ensuring clinician oversight to keep AI functioning as a collaborative partner in patient care.

3.7. Future Outlook in Promoting SDM and ACP in Home Medical Care in Japan

The promotion of SDM and ACP within Japan's home medical care system is expected to advance through the integration of person‐centered care, interprofessional collaboration, and digital transformation. As Japan continues to experience rapid population aging and increasing numbers of older adults living alone, the need for proactive, preference‐based care planning will intensify.

In the coming years, the Japanese healthcare system must focus on three key directions.

First, system‐level reforms are needed to embed SDM and ACP into routine care processes, including structured ACP discussions aligned with the Ministry of Health, Labour and Welfare's “Appropriate Care Management Methods” [79], developed within the long‐term care insurance and medical reimbursement frameworks.

Second, capacity building among healthcare professionals and care managers will be essential. Training programs that enhance communication skills, ethical sensitivity, and interdisciplinary coordination will be crucial for effective decision support in home care settings.

Third, ICT will play an increasingly central role in implementing SDM and ACP. Digital tools—such as electronic ACP records, teleconsultation systems, and remote monitoring—can facilitate continuous dialogue, document care preferences, and support information sharing across care teams.

Future policy initiatives should create an ecosystem in which patients, families, and healthcare professionals engage in ongoing conversations about care preferences, supported by digital infrastructure and standardized guidelines. Japan's experience with community‐based integrated care, digital health innovation, and culturally sensitive practices may offer valuable insights to other aging societies seeking to promote SDM and ACP in home medical care.

4. Conclusion

SDM and ACP are essential to achieving PCC in Japan's home medical practice. Although existing evidence demonstrates meaningful benefits, persistent barriers—including limited time, insufficient professional training, and cultural influences—continue to hinder widespread implementation. Integrating SDM and ACP as a continuous, iterative process is critical. Looking ahead, system‐level reforms, workforce capacity building, and the adoption of digital and ICT‐based tools will be vital for establishing a collaborative and sustainable decision‐making environment for patients, families, and care teams.

Author Contributions

H.M. and Y.G. conceived and designed the study. H.M. collected the data. H.M. and Y.G. analyzed and interpreted the data. H.M. and Y.G. wrote the manuscript. Both authors approved the final manuscript. H.M. is the guarantor.

Funding

This work was supported by Yushoukai Medical Corporation's fund.

Ethics Statement

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.