Definitions

Design

This study used qualitative interviews with a CBPC team leading the implementation of ACP in community healthcare through the collaboration of multiple professionals across various facilities in a community of older adults.

Study participants and recruitment

The study participants were members of a CBPC team from Hospital C, District B, City A, which is developing a regional partnership infrastructure in northern Japan; its partner facilities were included. These CBPC team members are ACP implementation promoters leading ACP implementation for patients and their families within the regional coordination network of multiple professionals in the community of older adults in Region B.

This study identifies the barriers and facilitators for a multidisciplinary team implementing ACP in one region. The initial participants included 25 multidisciplinary professionals from the community palliative care team who attended the collaborative meetings between Hospital C and local healthcare facilities and expressed interest in palliative care. Of these, 22 agreed to participate in the study.

The recruitment process was as follows. First, the researcher (MT) explained the study to the contact person at Hospital C. Next, the contact person provided the study details to the palliative care team members at Hospital C and the multidisciplinary members of the community coordination network. Those who agreed to participate in the interviews were selected as potential research collaborators.

The 22 participants comprised three doctors (two from hospitals and one from a clinic), nine nurses (three from acute wards, two from convalescent beds, one from outpatient services, two from home nursing care, and one senior care facility manager), three medical social workers (MSWs), two home pharmacists, two hospital pharmacists, one speech therapist, one physiotherapist, and one occupational therapist. One interview was canceled owing to work commitments. The interview durations ranged from 28 to 79 minutes (average: 49 minutes). Participants’ professional experience spanned from three to over 30 years (Table 1).

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Table 1. Years of professional experience of participants.

https://doi.org/10.1371/journal.pone.0323976.t001

The primary ACP activities of the participants included conducting ACP discussions with patients and families, providing staff education in their departments (including ACP and end-of-life care education), and coordinating with multidisciplinary teams for ACP information sharing and facility coordination. Some participants took leadership roles in promoting ACP across departments, while others focused on sharing information with multidisciplinary teams (Table 2).

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Table 2. Participant characteristics.

https://doi.org/10.1371/journal.pone.0323976.t002

Study site

The characteristics of District B in City A and the background and policy for ACP implementation are shown in Fig 1.

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Fig 1. Characteristics of District B in City A and ACP implementation in practice.

https://doi.org/10.1371/journal.pone.0323976.g001

Characteristics of District B

In City A, 27.8% of the population were aged 65 and over as of 2023, with the older adult population growing at the fastest rate among Japan’s major cities. This rapid increase is attributed to District B, a residential area developed for the baby boomer generation, resulting in a rising number of older residents.

Background to ACP implementation

Hospital C, with approximately 100 beds across acute and long-term care wards, participated in a national project in 2011 (National Project on Centers of Collaboration for Home Medical Care FY2011 and FY2012) to establish a regional cooperation network. This network aimed to strengthen collaboration between multiple medical and nursing care facilities, as well as home medical and nursing care offices in District B, through quarterly joint meetings. Since then, Facility C has become a key facility for end-of-life care, increasing its referrals from neighboring hospitals. In 2014, Hospital C participated in another national project by the Ministry of Health, Labor and Welfare, the “National Project for Improving End-of-life Care” (FY2014-present), and took part in the Education for Implementing End-of-Life Discussion training [37].

ACP implementation in practice

• Establishment of a palliative care team: A multidisciplinary palliative care team was established within Hospital C, conducting monthly case study meetings attended by regional cooperation network members.
• ACP training: Organization and delivery of ACP training sessions.
• Research initiatives: Conducting research related to ACP.
• Public outreach: Development and distribution of ACP pamphlets for the public.

Survey method

Individual interviews were conducted by MT, who has extensive experience in qualitative research on end-of-life care and ACP. Individual interviews were chosen to avoid the influence of inter-professional conflicts and hierarchies on the participants’ statements and maximize eliciting their true perspectives.

Prior to the interviews, MT reviewed the facility’s report on its initiatives and the ACP leaflet prepared by the facility. Subsequently, MT was briefed by key members of the ACP promotion team regarding the facility’s initiatives and participated in a palliative care team conference to understand the team’s activities.

Interviews were conducted over four days in September-October 2019. Each interview lasted approximately one hour, with one interview per person. Local clinics and other sites outside Facility C were visited, accompanied by the research coordinator of Facility C. The research participation request form, interview method, and content were distributed to study participants in advance.

MT, a former working member of the 2016 Project for the Development of the Final Stage of Life Healthcare System, had no prior visits to the facility or meetings with the study participants and has no conflicts of interest.

The interview guide was developed based on the results of interviews with five regional members from two multi-professional home-care clinics in northern and western Japan, who participated in the ACP facilitator training program, “National Project for Improving End-of-life Care,” in FY2015, which preceded this study [38]. The results of this preliminary survey indicated that implementing ACP in a region requires understanding the wishes of patients and their families, raising awareness of ACP among local residents and the various professions within and outside of facilities, and establishing a foundation for regional collaboration. To gain a more detailed understanding of ACP implementation by the various community healthcare professions, we created an interview guide focusing on the ACP practice of these professions involved in the community palliative care team, which is based on a community-based network. The guide included the following questions: 1) How do you identify the desires of older patients? 2) Which factors inhibit or promote older patients’ sharing of their desires within and outside your facility? 3) How do you evaluate and value ACP practice? No pilot testing of the interview guide was conducted prior to the survey.

MT encouraged participants to share their initiatives as much as possible and took field notes to confirm any uncertainties about the practice background or facility conditions mentioned during the interviews. Findings or observations were recorded. During the interviews, any uncertainties regarding the practical background were recorded in field notes and confirmed with the research participants during the interviews. After the interviews, any uncertainties about the facility’s overall structure and status were noted in the field notes and confirmed with the research contact person. This facilitated understanding the facility’s overall approach and state of practice. The interviews were audio recorded with the participants’ consent. The verbatim data were not returned to the study participants for correction or additional comments.

Data analysis

The interviews were transcribed verbatim and analyzed using content analysis, following these stages: Stage (1) Careful reading of all verbatim transcripts of research participants, Stage (2) Extraction and coding of statements related to barriers and facilitators of ACP practice for each participant, and Stage (3) Careful review and categorization of all extracted codes based on similar content.

MT and MN, both experienced in qualitative analysis and research writing, extracted and categorized the codes. NVIVO 12, a qualitative analysis software, was used for the analysis. MT and MN reviewed the original data to ensure the analytical findings’ validity.

MT used NVIVO to code the content of the verbatim transcripts for barriers and facilitators, categorizing them based on similarities. MN independently reviewed the verbatim transcripts and categorized them separately from MT. The results were compared, and any differences in categories, subcategories, or outliers were discussed. NVIVO’s coding stripes function was employed to verify the data by returning to the verbatim transcripts. Furthermore, NO, familiar with the practical context, provided feedback on the analysis results and discussed any concerns. Examples of the discussions included whether family support during the terminal stage of life was considered part of ACP practice and whether adjustments to prescription drugs reflecting the patient’s wishes were included. Family support was included in ACP practice as aligning with the patient’s wishes, while adjustments to prescription was excluded as a professional duty role. As this study used consensus-based analysis utilizing NVIVO functions, no formal inter-coder reliability measure was applied. This study adheres to the COnsolidated criteria for REporting Qualitative research (COREQ) guidelines for reporting qualitative research. A completed guidelines checklist has been uploaded as a supplemental file.

Ethical considerations

Approval for this study was obtained from the Ethics Committee on Human Subjects at the Tokyo University of Health Sciences (Kyou 31-18A). Additionally, research collaboration approval was obtained from the Ethics Committee of Institution C. Prior to the interviews, all research participants received a research request form and were briefed again at the beginning of the interview. Written consent to participate in the study was obtained from each participant.

Domain 1: Understanding patients’ intentions

This domain pertains to communication, where healthcare professionals aim to understand the patient’s wishes, values, and life goals regarding future medical care, and explore their intentions.

Barriers included difficulties such as “Inability to understand the patient’s intentions” and “Not listening to the patient’s intentions.” Inability to understand the patient’s intentions highlights challenges faced by older adults without relatives or with severe pre-ACP ethical issues, such as neglect. Not listening to the patient’s intentions indicates biases that patients with dementia cannot express their wishes, as well as instances where facility conditions and family intentions take precedence over patient intentions.

Facilitators included “Skills to better understand the true meaning of the patient’s intentions” and “Skills to understand patients’ intentions. Skills to better understand the true meaning of the patient’s intentions involve actively engaging with the patient to discern their wishes at the appropriate time and continuously capturing their intentions once understood. Skills to better understand the patient’s intentions involve actively listening to the patient, observing their behavior, gathering information from their surroundings, documenting progress notes, and capturing the essence of their intentions [S1 Appendix].

Domain 2: Family support

This domain focuses on consensus-building between the patient and family and the family members making decisions on the patient’s behalf when the patient has limited decision-making capacity.

Barriers included “Physical and psychological distance between patient and family,” “Family’s lack of understanding and disagreement with the patient,” “Reduced family decision-making capacity,” and “Insufficient care resources to support the family.”

Physical and psychological distance between patient and family indicates that the family is often unaware of the patient’s condition because the older patient’s children live far away or have an estranged relationship. Lack of family understanding and disagreement with the patient refers to the patient’s transition to the terminal stage, unbalanced power relations among family members, the patient’s reluctance to communicate with the family, and the resulting lack of consensus, as well as confusion among family members who did not anticipate the patient’s condition becoming more serious. Reduced family decision-making capacity indicates that family members who support the patient are also older adults and may lack decision-making ability owing to cognitive decline. Insufficient care resources to support the family refers to the lack of care resources available to support the family in providing end-of-life care at home.

Facilitators included, “Early relationship building and discussions between professionals and family members,” “Presuming the patient’s intentions and assisting the family in making decisions on the patient’s behalf,” and “Respecting the wishes of family members near the end of the patient’s life.”

Early relationship building and discussions between professionals and family members involve establishing early connections with the family and engaging in repeated discussions among the patient, family members, and professionals. Assisting the family in making decisions on the patient’s behalf indicates that the family supports the assumed intentions of the patient when making treatment and care decisions. Respecting the wishes of family members near the end of the patient’s life involves supporting the family to prevent regrets as the patient’s death approaches [S2 Appendix].

Domain 3: Information sharing using tools

This domain involves sharing patient information across multiple facilities, different departments, and various professions using communication tools such as medical records, Information and Communications Technology (ICT) tools, telephone, and fax.

Barriers included “Differing information needs and sharing methods at each facility,” “Lack of recording skills,” and “Reluctance to widely share personal information.”

Differing information needs and sharing methods at each facility indicate the challenges in confirming and exchanging information with other facilities, as each has its information requirements. Lack of recording skills reflects a lack of knowledge on how to write records and difficulties in understanding record content. Reluctance to widely share personal information indicates professionals’ concerns about the broad dissemination of personal information beyond the organization owing to privacy protection considerations.

Facilitators included, “Realization of improved daily care through information sharing,” “Compatibility of daily tasks and ACP by utilizing tools,” “Selecting the right tools suitable for individual cases and local conditions,” and “Evaluating and enhancing tools to improve the quality of ACP practice.”

Realization of improved daily care through information sharing involves sharing patient information across multiple facilities, enabling timely end-of-life care, and reducing concerns about the isolation of care. Compatibility of daily tasks and ACP by utilizing tools indicates balancing ACP by integrating ACP records into daily medical records and documenting them on a routine basis. Selecting the right tools suitable for individual cases and local conditions refers to adopting tools suited to individual cases and regional circumstances, considering cost-effectiveness. Evaluating and enhancing tools to improve the quality of ACP practice involve evaluating and improving the clarity and usability of the information provided by the tools to improve care quality [S3 Appendix].

Domain 4: Collaboration among multiple professions

This domain focuses on sharing and discussing the direction of care in a multidisciplinary setting.

Barriers included: “Diverse behaviors and interpretations of patients/families depending on the profession” and “Lack of understanding and indifference among other professionals toward ACP.”

Diverse behaviors and interpretations of patients/families depending on the profession indicate different patient and family intentions based on professional roles, and varying perceptions of these intentions depending on the professional roles. Lack of understanding and indifference among other professionals to ACP reflects other professionals’ indifference to ACP, delineation of duties, and the underutilization of ACP information by different professions.

Facilitators included: “Discussions grounded in solidarity among multidisciplinary colleagues” and “Clarification of the role of each professional in practice.”

Discussions grounded in a sense of multidisciplinary solidarity emphasize the ease of communication based on established relationships and familiarity among multidisciplinary colleagues. Clarification of the role of each professional in practice indicates that once a patient’s intentions are clarified through ACP, the direction of care becomes clearer, enabling better collaboration. Furthermore, communicating one’s ACP practice expertise to other professionals enhances mutual awareness and understanding [S4 Appendix].

Domain 5: Cross-facility and cross-departmental cooperation

This domain focuses on collaboration across different facilities and departments with varying structures, sharing ACP content, and coordinating patient support.

Barriers included, “Differences in required information and procedures under the medical and long-term care systems,” “Limitations on patient acceptance criteria set by the facility,” and “Lack of information on ACP practices at other facilities.”

Differences in required information and procedures under the medical and long-term care systems, stemming from Japan’s distinct medical insurance and long-term care insurance systems, result in longer procedures and varying information requirements. Limitations on patient acceptance criteria set by the facility indicate that some facilities have restrictions on accepting patients who require medical treatment, preventing patients from living in the facility as they wish. The lack of information on ACP practices at other facilities highlights the lack of clarity regarding ACP practices in other facilities and departments, which makes communication challenging.

Facilitators included, “Human connections between professionals in multiple facilities and departments” and “Communication skills to convey the patient’s wishes to multiple facilities.”

Human connections between professionals in multiple facilities and departments indicate the presence of coordinators who link various departments and the ability to understand each other through face-to-face meetings among professionals from different facilities. Communication skills to convey the patient’s wishes to multiple facilities include skills that consider the ethical aspects of communication, such as accurately conveying the patient’s wishes based on their words rather than personal interpretations, always obtaining the family’s consent, consistently conveying the patient’s intentions regardless of the ACP status of the other facility and addressing individual case requests through direct meetings and discussions [S5 Appendix].

Domain 6: Raising community awareness

This domain focuses on enhancing the community’s understanding and participation in ACP, as well as the professional’s engagement with the population.

Barriers included: “Lack of end-of-life awareness among residents” and “Absence of a local culture to discuss death.”

Lack of end-of-life awareness among residents indicates that residents often lack a concrete understanding of end-of-life options, and medical professionals do not actively provide information about the end-of-life process. The absence of a local culture to discuss death indicates residents generally lack knowledge of ACP, tend to leave the matter to their doctor if they become ill, and the community lacks an atmosphere conducive to discussing death.

Facilitators included: “Raising awareness among residents and local professionals through daily work” and “Expression of willingness to engage in ACP from patients and families.”

Raising awareness among residents and local professionals through daily work involves promoting ACP through routine activities, such as informing staff at facilities about ACP, and advocating for ACP to all citizens from the standpoint of community facilities and professionals. Expressing willingness to engage in ACP from patients and families indicates that when ACP is suggested to patients’ families, they increasingly start discussions without resistance, and inquiries about ACP from patients and families are also increasing [S6 Appendix].

Domain 7: Efforts by implementation promoters and their departments

This domain focuses on the efforts of ACP implementation facilitators, including initiatives within their departments.

Barriers included: “A sense of burden and indifference among department staff,” “Lack of ACP knowledge and skills among department staff, and care insecurity,” and “A sense of uncertainty about how to resolve ACP-related issues.”

A sense of burden and indifference among department staff indicates the perceived burden and lack of interest in ACP among department staff, especially in busy and demanding departments such as acute care wards. Lack of ACP knowledge and skills among department staff, and care insecurity indicates the lack of ACP knowledge and skills among department staff, coupled with anxiety about providing end-of-life care. A sense of uncertainty about how to resolve ACP-related issues highlights the uncertainty among implementation promoters about finding the best solutions to ACP practice challenges within their departments.

Facilitators included, “Engagement with ACP implementation,” “Recognition of the effects of ACP activities within the organizational structure,” “Staff education within the department with emphasis on respect for the individual” and “ACP initiatives driven by a sense of professional role within the organization.”

Engagement with ACP implementation reflects the state in which implementation promoters find value, learning, satisfaction, and a sense of growth through ACP practice. Recognition of the effects of ACP activities within the organizational structure signifies the recognition of ACP’s effectiveness when implemented in a structured and organized manner. Staff education within the department with emphasis on respect for the individual indicates that implementation promoters educate their department staff regarding ACP in a clear and respectful manner, considering each individual’s ideas and practices. ACP initiatives driven by a sense of professional role within the organization involve initiatives based on an awareness of one’s professional role within the organization or a multi-professional team, granting individuals professional discretion in ACP efforts [S7 Appendix].

Strengths, limitations, and future challenges

The strength of this study lies in its findings regarding the desired makeup of complex interventions when ACP is implemented in a community by multiple professionals working together as a CBPC.

Our use of convenience sampling from members of a CBPC team in a limited area means that the study may not have reached theoretical saturation. Specifically, we did not include professionals who coordinate long-term care in the community, such as community social workers and care managers. Additionally, the participants were biased toward those with a high interest in palliative care.

Consequently, some limitations exist. The study did not identify differences in the barriers and facilitators experienced by various professions involved in ACP implementation. Additionally, barriers and facilitators related to the economic challenges faced by older adults (e.g., poverty) and the impact of broader social structures, including a declining birthrate and aging population, were not extracted. The perspectives of professionals who provide long-term support focusing on the declining physical condition of older adults were also not included. Thus, we acknowledge the limitations in the comprehensiveness of ACP implementation content addressed by local multi-facility and multi-professional groups. Furthermore, the survey was limited to a single point in time, which limits its ability to capture the dynamic relationship between the barriers and facilitators in practice or the intervening factors. Additionally, this study did not clarify the background factors underlying each of the barriers and facilitators.

Despite the above limitations, this study suggests potential solutions for advancing ACP implementation in complex communities. First, the barriers and facilitators across the seven practice areas should inform the consideration and planning of ACP interventions, taking into account the current situation and the daily realities of community practice. This is particularly important when ACP is implemented in a community where multiple professionals collaborate as part of a CBPC team. Second, since previous studies have shown that a regional collaborative infrastructure improves the quality of palliative care in the community [58], this study’s results indicate that building a regional collaborative network system should be a priority, and CBPC have shown evidence of improved quality of care and reduced costs[32,59], CBPC teams should function at the top of the regional collaborative system. Third, barriers to and facilitators of “Understanding patients’ intentions,” which reflect the process of understanding others, include communication skills that account for the characteristics of older adults who become frail and experience cognitive decline as they approach the end of life. Additionally, the cultural values of the East Asian region which prioritize relationships, play a significant role in this process [56]. In a society where the number of elderly people will continue to increase, the communication skills of ACP professionals should be improved by considering relational autonomy. In addition, as a priority, the individual should be supported in selecting a trusted other as a proxy. This may be the best approach to achieve respect for personal autonomy based on trust and mutual understanding, which is acceptable to people’s sociocultural attitudes.

Future research should continue investigating ACP implementation and examine its implementation in various regions to validate this study’s results. In this study, the regional partnership infrastructure was a prerequisite; however, further research is necessary to explore the process of building regional partnership infrastructures for ACP implementation in other regions. Additionally, future research should examine the perspective of older adults and their families who utilize regional medical care, as well as professionals other than ACP promoters. This should extend to CBPC functions across different environments, such as hospitals and community healthcare facilities. This will provide the necessary data to determine the optimal ACP intervention methods across diverse regional situations.