We conducted the research based on a qualitative descriptive research design.

The participants were visiting nurses employed by home-visit nursing agencies in Japan. Suitable candidates were recommended by workplace supervisors or other research participants. They were required to have at least five years of experience in home-visit nursing and be thoroughly familiar with the home care situation in their assigned area. They were also required to have extensive experience in end-of-life care and be able to discuss their own experiences in practicing ACP with home-bound elderly individuals certified as requiring long-term care due to worsening of chronic disease or dementia. To avoid limiting the selection to specific regions, snowball sampling was employed to identify participants who met the above criteria. Data collection and analysis proceeded concurrently, and data saturation was deemed to have been achieved once data were collected from the 10 participants.

The study period was from February 2024 to August 2025. Semi-structured interviews, each lasting between 60 and 90 minutes, were conducted online with each participant. To facilitate the interview process, participants were provided with a guide in advance. The interview topics were as follows: 1) memorable examples of ACP practice, 2) instances where effective ACP support successfully elicited the wishes of elderly people, and 3) daily considerations in home-visit nursing practice. For topics 1 and 2, participants were asked to “specifically describe which users you conducted ACP with, in what situations, and the subsequent outcomes.” Conversations were recorded on an IC recorder with the participants’ consent.

The interview data were transcribed verbatim and analyzed using Greg et al.’s qualitative descriptive analysis method [16]. Descriptions related to ACP support for older adults were focused on, and codes were carefully created to preserve meaning. Subcategories were formed based on the similarities and differences between codes, and these subcategories were further categorized. The temporal relationships among the ACP support categories were examined and are illustrated in Figure 1.

To prevent arbitrary data interpretation, a continuous comparative analysis was conducted by examining the similarities with other data and contrasting opposing viewpoints. After one researcher classified the results, a second researcher verified the analyses to ensure reliability. The analysis process constantly returned raw data for re-evaluation and refinement of interpretations to ensure accuracy.

This study was approved by the Ethics Review Committee of Yamagata University Faculty of Medicine (application no. 2023-211). Participation in the study was voluntary, and only individuals who provided informed consent were included as research subjects. The consent form stated the following: 1) Data would be handled only by the researchers and stored in a locked storage facility. 2) Data would be anonymized for research presentations, and privacy would be strictly protected. Participants could withdraw from the study at any time without any disadvantages. Participants were also informed that they would sign a consent form once they understood the research objectives. Signed consent forms were obtained from all participants on survey day.

The study participants comprised one male and nine females, with an average of 13.6 years of experience in home-visit nursing. The locations of home-visit nursing agencies were as follows: Tohoku region, 70%; Kanto region, 20%; and Kansai region, 10%. By position, 90% were directors or deputy directors, and 10% were staff members. Half of the participants were qualified public health nurses, clinical nurse specialists in home care, certified nurses in palliative care, and care managers.

Table 1. Participants’ characteristics.

Categories are indicated by [], subcategories by <>, and representative raw data examples by “”.

The following perspectives of visiting nurses, forming the foundation of ACP support, were recognized: [The presence of ACP in daily home-visit nursing care], [Understanding the individual’s wishes is also important for family members], [Seamless implementation of ACP], and [Supporting the realization of wishes through person-centered ACP]. Furthermore, the ACP support provided by visiting nurses comprised [Deliberately creating opportunities for the individual to express their wishes], [Refining conversations to touch on personal values], [Accepting the individual’s current feelings], [Reflecting the individual’s values in daily care], [Believing in the strength of the individual and their family], [Providing appropriate information as nursing professionals], and [Supporting individuals and their families through multidisciplinary collaboration to fulfil the individual’s wishes].

3.2.1. The Perspective of Visiting Nurses as the Foundation for ACP Support (Table 2)

The perspective underpinning ACP support represents visiting nurses’ beliefs when practicing ACP, based on experience and ethical judgements cultivated through their previous home nursing practice.

[The presence of ACP in daily home-visit nursing care] is structured around three subcategories: , , and . This approach treats routine home-visit nursing care and ACP as part of a single continuum. It was stated that “home-visit nursing can accompany individuals as their feelings fluctuate, leveraging its strength as a service closely connected to medical care,” and “ACP is conducted within routine care, though it is often performed without being recognized as ACP.”

[Understanding the individual’s wishes is also important for family members] stems from , , and . Expressing an individual’s wishes leads to the realization of end-of-life care that respects their intentions. Comments included: “When we convey to the family what the person truly feels, they often say, ‘If that’s what they want, we’ll care for them at home until the end and see them through.’”

[Seamless ACP implementation] consists of: , , , and . This ensures that ACP support flows smoothly, enabling individuals to receive medical care and support that respects their wishes even as their care settings and conditions change. Participants shared insights such as: “Nursing collaboration is crucial for making ACP feasible; we continue ACP plans handed over by nurses upon discharge,” and “When ACP stalls due to lack of discussion between the patient and family, we communicate our willingness to cooperate to align with the patient’s wishes.”

[Supporting the realization of wishes through person-centered ACP] consists of three subcategories: , , and . It demonstrates a commitment to never lose sight of the essence of ACP, respect the person’s wishes, and provide care that honors those wishes until the end. It was stated, “(When the individual’s wish to die at home conflicts with family wishes) We tell everyone that the individual’s wishes are paramount over the family’s. We consider how to engage with anxious family members to alleviate their concerns regarding end-of-life care at home.”

Table 2. The perspective of visiting nurses as the foundation for ACP support.

3.2.2. ACP Support Provided by Home-Visit Nurses (Table 3)

The specific support provided by visiting nurses for ACP is outlined below.

[Deliberately creating opportunities for the individual to express their wishes] consists of and . This involves establishing opportunities for the daily care of elderly individuals who rarely express their wishes to do so. Discussions included: “During conversations, look for opportunities to initiate ACP between words,” and “For elderly users who tend to be left behind in decision-making, convey that ‘you have the right to choose, the right to express your wishes.’”

[Refining conversations to touch on personal values] outlines techniques for eliciting values through dialogue: , , . “We gather material in casual conversations—where they’d like to spend their final days, what they currently look forward to in life,” and “We drop little questions like a handkerchief. Even if they don’t answer immediately, they probably just don’t want to think about it. They’ll likely consider it after we (visiting nurses) leave. That’s what matters.”

[Accepting the individual’s current feelings] consists of and . This indicates accepting their current expression of will with a flexible attitude and working together to consider the future. It was stated that “even if there is a gap between how the user and the healthcare provider perceive ACP, and even if it doesn’t align with reality, we listen attentively to the

Table 3. ACP support provided by home-visit nurses.

person’s story,” and “even if proposals for the future are not accepted, we think together about what they themselves want and what would allow them to live with peace of mind.”

[Reflecting the individual’s values in daily care] means . This involves “asking about things the individual wanted to do, things they wanted to try, and things they can no longer do but wish to do again,” and “as we listen to ensure we can provide care that satisfies the user, they may sometimes express their wishes for their final place of care.”

[Believing in the strength of the individual and their family] is a form of care that focuses on the family’s self-care abilities, such as and . Comments included: “While we sometimes think our assistance could make things easier, some individuals don’t want it, so we can only wait until the individual or family chooses to accept it.”

[Providing Appropriate Information as a Nursing Professional] involves: and . Examples include: “Even if IV fluids are initially desired, the individual’s feelings at each moment are crucial. Therefore, we should refine our discussion of the benefits and risks to ensure that their wishes (regarding how they wish to spend their final days) are respected as much as possible.”

[Supporting individuals and their families through multidisciplinary collaboration to fulfill the individual’s wishes] involves dedicated efforts towards end-of-life care alongside multidisciplinary teams. This includes and . Discussions included points such as “Many families feel burdened, believing they must shoulder everything alone, so it’s important to clearly communicate what specific home care services they can rely on.”

3.2.3. Steps in ACP Support by Home-Visit Nurses (Figure 1)

The ACP support provided by home-visit nurses involves four sequential phases in the decision-making support process: decision formation, decision expression, decision-making, and decision implementation. Decision formation is the stage at which an individual’s values are clarified. Decision expression is the stage of verbally communicating one’s wishes through dialogue with the family and healthcare providers. Repeated discussions deepen understanding. Decision-making is the stage of choosing future medical and care options based on an individual’s values and wishes. Implementation is the stage in which the chosen options are reflected in actual care. Underpinning this process were the visiting nurses’ beliefs regarding ACP: [The presence of ACP in daily home-visit nursing care], [Understanding the individual’s wishes is also important for family], [Seamless implementation of ACP], and [Supporting the realization of wishes through person-centered ACP].

Figure 1. Steps in ACP support by home-visit nurses.

This study clarified the ACP support provided by Japanese visiting nurses to elderly individuals requiring home care. The results revealed that the ACP support provided by visiting nurses to these elderly individuals was grounded in the following perspectives: [The presence of ACP in daily home-visit nursing care], [Understanding the individual’s wishes is also important for family members], [Seamless ACP implementation], and [Supporting the realization of wishes through person-centered ACP].

The nurses participating in this study were experienced managers certified in palliative care or specialized in home care nursing. They possessed extensive knowledge of home care conditions in their service areas and extensive experience with end-of-life care practices. They were also recommended by their supervisors or fellow visiting nurses as individuals capable of discussing ACP cases they had managed personally. Consequently, all participants held unwavering convictions regarding ACP support as visiting nurses.

Overseas specialized research also indicates that champion nurses who are passionate about ACP are expected to drive their implementation [17]. The participants in this study were similar to the champion nurses who were enthusiastic about ACP. They actively pursued ACP during their daily home visits, led multidisciplinary collaboration within their own facilities and communities, and demonstrated strong leadership. Furthermore, reports within Japan also indicate visiting nurses serving as ACP facilitators [8][18].

Particularly for the elderly, ACP was not limited to end-of-life stages. ACP was present in daily visiting nursing care as the care elderly individuals in the final stages of life should receive, enabling seamless ACP implementation. These two categories reflect the Japanese Geriatrics Society’s 2019 statement advocating ACP promotion [19], which proposed “regarding ongoing care planning and ACP as a continuous process to seamlessly realize the best possible medical care and support for the individual.”

Furthermore, the categories cited as the foundation for ACP from the perspective of visiting nurses included important phrases such as “the individual’s wishes” and “individual-centered”. It was confirmed that ACP support also involved assisting with the formation and expression of an individual’s wishes, aligned with the decision-making support steps. On the other hand, [Supporting the realization of wishes through person-centered ACP] consists of three subcategories: , , and . This approach enables visiting nurses to move beyond traditional family-centered decision-making. It represents a shift away from this model, allowing home-visit nurses to maintain a neutral stance in their relationships with the individual, family, and other home-care staff. Their actions aim to foster consensus from an ethical perspective. In other words, this approach reflects visiting nurses’ conviction regarding ACP: while acknowledging the cultural characteristics of decision-making in Japan, the ethical principle of patient-centeredness remains non-negotiable. This suggests that visiting nurses, as key actors in end-of-life care, play a primary role in facilitating person-centered ACP.

This study classified visiting nurses’ ACP support into four stages: decision formation, decision expression, decision making, and implementation of will.

Decision formation is the stage of identifying what matters most for living authentically, and requires ongoing dialogue. A cultural tendency to avoid discussing death as “unlucky” persists in Japan. Therefore, in the areas of [Deliberately creating opportunities for the individual to express their wishes] and [Refining conversations to touch on personal values], nurses employed dialogue strategies tailored to each elderly person’s situation. This was evident in “to avoid evoking images of death or causing distress to the individual, we explore their values through everyday communication exploring values through everyday communication (exemplar codes).” Furthermore, for elderly individuals with declining cognitive function who find it difficult to express their wishes, care practices, such as routinely creating opportunities for choice, were implemented to respect their preferences.

Decision expressions involve clearly communicating their values and desires to others. Support was provided to help them repeatedly articulate their wishes, deepen their understanding, and make it easier for them to reflect on their future medical and care choices. This approach involves building trust with the elderly while eliciting their values, such as [Accepting the individual’s current feelings] and [Reflecting the individual’s values in daily care], and then incorporating these values into daily home-visit nursing care. Furthermore, given that this is a crucial period requiring repeated, careful dialogue, similar to the formation of intentions, home-visit nurses, who handle both medical and nursing care and are more frequently encountered by the elderly and their families than physicians, are considered well-suited to serve as ACP facilitators. Internationally, patients report perceiving nurse-led ACP approaches as compassionate and feeling that nurses encourage a deeper consideration of what matters most to them [17]. In Japan, clear evaluations of ACP by visiting nurses of patients or their families have not yet been documented, making the accumulation of research on patient and family assessments a challenge.

In decision-making, visiting nurses practiced [Believing in the strength of the individual and their family] and [Providing appropriate information as nursing professionals] as ACP support. Japan has a traditional family-centered approach to decision-making [4][5], and the continuation of home care has historically been entrusted to family decision-making. Therefore, visiting nurses consider words of consideration and appreciation for family caregivers as essential to family care [20]. Furthermore, Japan’s traditional culture, which respects the elderly and values longevity, often does not wish for elderly patients to die without therapeutic intervention during the terminal phase [21]. Japanese research reports that a contributing factor to an ideal end-of-life experience, defined as a “good death”, is living without conscious awareness of approaching death [22]. In decision-making, visiting nurses provide support that respects both the individual and their family, embodying an approach of accompanying them. This is seen in instances where “as we work through the difficulties together with the individual and their family, they will come to their own conclusions (exemplar codes).” Therefore, believing in the strength of the patient and their family, and providing appropriate information as nursing professionals can be seen as a form of decision support that reflects Japanese cultural characteristics.

Regarding the implementation of wishes, [Supporting individuals and their families through multidisciplinary collaboration to fulfill the individual’s wishes] was implemented. In a survey on ACP practice among visiting nurses, the reasons cited by numerous nurses for perceiving ACP as beneficial included being able to listen to the patient and the family’s feelings, providing care aligned with their wishes, and enabling the elderly to spend their final days with their family [23]. This suggests that visiting nurses themselves possess a strong desire to fulfill their wishes and a strong commitment to providing care that allows them to spend their final moments at home, surrounded by family. Visiting nurses viewed the family as equally important care recipients alongside the individual, engaged in repeated dialogue with them, and approached ACP support from a neutral standpoint. Additionally, there was consideration of the family, aiming to provide end-of-life care that would prevent regret among bereaved family members after the death of an elderly person [24]. To fulfill the patient’s wishes, they collaborated with a multidisciplinary team to provide support that considered the family’s feelings and helped sustain the family’s caregiving. “We focus on the concerns and worries of family members to honor the wishes of patients who desire to spend their final days at home”; “we manage symptoms and strike a balance to ensure family caregivers do not feel overwhelmed (exemplar codes).” As seen in these points, visiting nurses collaborated with a multidisciplinary team to provide support that both fulfilled the individual’s wishes and assisted the family in their caregiving while also considering the family’s emotional state. Visiting nurses can be said to be the linchpin of this team during this time.

In Japan, only within the last several years have elderly individuals requiring care for non-cancerous conditions been recognized as candidates for ACP support. Consequently, even among professionals engaged in home care, understanding ACP and communication skills regarding it still vary significantly by region and individual. Japanese health care providers are reluctant to practice ACP [25]. Furthermore, surveys targeting physicians in primary care clinics indicate low awareness of ACP and persistently low rates of ACP training participation [26]. Reports also note regional staffing shortages and a tendency among healthcare and care workers to harbor negative feelings about discussing death [26][27]. Therefore, communication skills that facilitate collaboration and smooth coordination among multiple professionals, such as physicians and care managers, are crucial.

In Japan, based on the Ministry of Health, Labour and Welfare’s Life Conference initiative, prefectures and municipalities are creating their own ACP tools to promote and establish ACP [28]. Utilizing such tools is expected to help reduce the psychological burden that healthcare and care workers experience regarding ACP, which requires sensitivity, empathy, and strong communication skills. Therefore, the development of ACP knowledge and communication skills is essential in nursing education. Furthermore, Japan lacks a research foundation for evaluating visiting nurses’ ACP practices. Therefore, surveys are needed regarding evaluations from patients themselves, their families, and other multidisciplinary professionals. Furthermore, to enhance nurses’ ACP practice capabilities, it is necessary to develop self-assessment tools for nurses’ own ACP practice that incorporate evaluations from patients, families, and other healthcare professionals. Researchers have promoted ACP through training workshops [29]. Based on the findings of this study, we will refine the content into a training and support program suitable for practical use in clinical settings in collaboration with leading nurses actively involved in ACP. We will also establish a forum where practitioners can consult on effective intervention cases and challenging situations.

This study investigated visiting nurses’ practices in many regions of Japan. However, participants were predominantly visiting nurses employed by visiting nursing agencies in the Tohoku region. Nevertheless, we were able to hear rich narratives from the participants regarding ACP practice. This confirms that support aligned with the essence of ACP is being provided, and we believe this is reflected in the results of this study.