Ethical Issues faced by Home Care Physicians and Nurses in Japan and their Ethics Support Needs: a Nationwide Survey

Abstract

This study aimed to identify the ethical issues faced by home care physicians and nurses, and the support they require. It was conducted in collaboration with the Japanese Association for Home Care Medicine from November to December 2020. An e-mail was sent to 2785 physicians and 582 nurses who are members of the society, requesting their participation in a web-based survey targeting physicians and nurses with practical experience in home care; 152 physicians and 53 nurses responded. Home care physicians and nurses face ethical issues, some of which are that “the patient’s wishes cannot be reliably understood owing to their impaired decision-making capacity” and “there is disagreement between the patient and their family members over the necessary healthcare.” The respondents sought “experience with, and insight into, healthcare ethics” and “home care” from people with whom they would consult on ethical issues, but at the time of the actual consultation, those individuals were the main healthcare professionals involved with the patient. In addition, the respondents desired to have “multidisciplinary discussions in the community,” “participation of healthcare ethics experts at meetings,” and “meetings held by healthcare ethics experts” to discuss specific cases. Given these results and the history of healthcare ethics education in Japan—which has been implemented mostly for healthcare providers—we conclude that it is important for academic societies that offer healthcare ethics education to healthcare providers and regional core hospitals with ethics support resources to collaborate to provide ethics consultation services in the community.

Introduction

In Japan, those aged 65 and over accounted for more than a quarter of the total population in 2018, and the elderly population size is expected to grow in the future. Ministry of Health, Labour and Welfare of Japan (MHLW 2022a) is promoting the Community-based Integrated Care System so that the ever-increasing number of elderly people can maintain their dignity and continue to live in their own familiar communities for as long as possible (MHLW 2016). MHLW requires that the home care providers support discharge in cooperation with medical institutions where patients are hospitalized, support the lives of patients and their families through collaboration with other professionals, and provide palliative care and support for families caring for patients. Furthermore, home care providers are also expected to offer nursing home visits when sudden changes in the medical condition of home care patients occur, provide secure systems for hospitalization when necessary, and support patients to die where they wish, including their familiar homes and nursing facilities (MHLW 2022a). In line with MHLW policies, the role of home care in the community is expected to expand.

Healthcare ethics consultation is becoming increasingly popular in Japanese hospitals to help staff better address difficult ethical issues that arise daily in healthcare settings (Nagao et al. 2005; Takeshita et al. 2022). Home care relies heavily on clinics; according to statistics from 2017, only 2702 hospitals (defined in Japan as medical institutions with 20 or more beds) provide home care, while there are 20,167 home care clinics (which usually do not have beds) (MHLW 2022a). Thus, the situation of healthcare ethics support in hospitals is not directly applicable to home care.

Regarding the ethical issues faced by Japanese professionals providing home care, two representative studies shed light on current circumstances. One was conducted before the long-term care insurance system and the system of home care clinics were established (Iwamoto et al. 2002); another is a recent study involving nurses in a specific prefecture in Japan (Honke and Dohzono 2021). Both of these studies included nurses but not home care physicians. Unfortunately, as far as we were able to determine, no studies have investigated the mode of ethics support that home care physicians and nurses need.

In this context, some important questions emerge: who should provide ethical support in the community? Who is currently doing so? To the best of our knowledge, no previous studies have addressed these matters. The Japan Association for Clinical Ethics (JACE) has been training healthcare providers to conduct healthcare ethics consultations since 2016 (JACE 2022), but it is unknown to what extent JACE-certified ethics advisors are actually offering ethics support in their communities. While not an initiative focusing on ethics support, certified nurse specialists (CNSs) trained by the Japanese Nursing Association (JNA) have ethics coordination as part of their mission and may implement ethics support in the community (JNA 2022).

For this study, we conducted a nationwide survey involving physicians and nurses working in home care to identify the ethical issues they experience and to determine what kind of ethics support they need.

Methods

We conducted the study in cooperation with the Japanese Association for Home Care Medicine (JAHCM). On 24 November 2020, JAHCM sent an e-mail to its members, including 2785 physicians and 582 nurses, whose e-mail addresses are registered with it, requesting their cooperation in a web-based survey targeting physicians and nurses with practical experience in home care. The unmarked survey was administered from 24 November to 31 December 2020.

According to JAHCM, the exact number of physician and nurse members on the day the e-mails were sent is uncertain, but approximately 95% or more of the members had registered their e-mail addresses. JAHCM is the largest academic society of home care in Japan, including members who are primarily engaged in institutional care, research, or education, as well as physicians and nurses who directly provide home care. JAHCM does not have accurate statistics on the number of physicians and nurses with practical experience in home care among the members who received the e-mail.

The survey consisted of two separate parts in addition to questions on respondents’ demographics and characteristics such as job title, experience with home care, and facilities where home care is provided. The first portion contained questions about ethical issues experienced in home care and ethical support required. The second part asked about experience with patients forgoing life-sustaining treatment and how this matter was addressed. This paper reports the results and analysis of the first part of the survey.

The survey included the following questions regarding ethical issues experienced in home care and ethics support required. The types of ethical issues addressed in the questionnaire and the options for ethics support were based on the textbook of healthcare ethics consultations (Dohzono and Takeshita 2020, 53–57).

Question 1: How often do you experience the following problems?

• The patient does not give consent to the healthcare plan I think is best.

• The patient’s financial situation prevents optimal healthcare.

• The absence of a caregiver among the patient’s family members inhibits best healthcare for the patient.

• Difficulty in determining what is optimal healthcare for the patient.

• The patient or their family members request healthcare that is not medically indicated.

• The patient’s wishes cannot be reliably understood owing to their impaired decision-making capacity.

• Difficulty in interpreting advance directives.

• The patient has neither the decision-making capacity nor family members who can presume the patient’s preferences.

• There is disagreement between patient and their family members over the necessary healthcare.

• There is disagreement among the patient’s family members over the necessary healthcare.

• The patient or their family members request healthcare that deviates from the law or guidelines.

• There is disagreement between myself and other healthcare professionals.

• There are concerns whether an action may lead to a break in confidentiality.

For the above items, respondents were asked to respond on a 5-point Likert scale of “never experienced,” “not often experienced,” “sometimes experienced,” “often experienced,” and “very often experienced.” The number of respondents who marked “sometimes experience,” “often experience,” or “very often experience” was defined as the number of respondents who have experienced the problem stated in each item.

Question 2: What do you think is especially important when choosing whom to consult about ethical issues in home care? Multiple responses are allowed.

• Experience with, and insight into, home care.

• Experience with, and insight into, healthcare ethics.

• Experience with, and insight into, legal issues.

• Experience with, and insight into, religious and/or spiritual issues.

• Certifications from academic or professional associations (e.g., clinical ethics advisor certified by JACE, CNS certified by JNS).

• Acquaintance or not.

• Ease of consultation.

Question 3: Who do you actually consult when you have difficulty with an ethical issue in home care? Multiple responses are allowed.

• Supervisors or co-workers not involved with the case.

• Physicians involved with the case.

• Nurses involved with the case.

• Pharmacists involved with the case.

• Social workers involved with the case.

• Care managers involved with the case.

• Care workers and helpers involved with the case.

• Staff with expertise in healthcare ethics, such as a clinical ethics advisor certified by JACE.

• CNS certified by the JNA.

• Lawyers and other legal professionals.

• The ethics committee of my institution.

Question 4: Which approach would you prefer when consulting about ethical issues in home care? Multiple responses are allowed.

• Discussions with staff from the same profession as myself in other facilities in the community.

• Multidisciplinary discussions in the community.

• Consultation services provided by the ethics committee of a regional core hospital.

• Participation of healthcare ethics experts in meetings.

• Consult about cases at meetings held by healthcare ethics experts.

• Not applicable.

Question 5: What organization would be the preferred one to provide ethics support in home care? Multiple responses are allowed.

• Medical association.

• Nursing association.

• Academic association related to home care.

• Academic association related to healthcare ethics.

• The ethics committee of a regional core hospital.

• Multidisciplinary organizations of physicians, nurses, and other healthcare providers involved in community home care.

• Bar association.

• The ethics committee of my institution.

• Not applicable.

We calculated descriptive statistics for each question for all respondents. The denominator for calculating the frequency and percentage of respondents for each question was the number of valid responses for each question. We used Fisher’s exact test to compare physicians and nurses, and we deemed P < 0.05 to be significant.

We received approval for the study from the Institutional Review Board for Clinical Research, Tokai University School of Medicine; we conducted the study in compliance with the Declaration of Helsinki and ethical guidelines for medical research involving human participants.

Results

Respondents’ Attributes

The web-based survey was completed by 205 respondents (152 physicians and 53 nurses). The response rate, using the number of e-mails sent as the denominator, was 5.5% for physicians and 9.1% for nurses. Of the physicians and nurses who responded, 125 (82.2%) and 39 (73.6%), respectively, had 5 + years of experience in home care (Table 1). Regarding the facilities primarily providing home care, 117 (77.0%) of the physicians worked in home care clinics that met MHLW requirements. Eighteen (11.8%) worked in home care hospitals that met MHLW requirements, and 17 (11.2%) provided home care outside of home care clinics and home care hospitals. The largest number of nurses, 25 (47.2%), worked at home visit nursing agencies, followed by 10 (18.9%) at home care clinics.

Table 1.

Characteristics of the respondents

	All respondents (n = 205)	Physicians (n = 152)	Nurses (n = 53)
Experience in home care
Less than 5 years	41 (20.0)	27 (17.8)	14 (26.4)
5 years or more	164 (80.0)	125 (82.2)	39 (73.6)
Main facilities that respondents provide home care in
Home care clinics that meet MHLW requirements	127 (62.0)	117 (77.0)	10 (18.9)
Clinic other than home care clinics	6 (2.9)	4 (2.6)	2 (3.8)
Home care hospitals that meet MHLW requirements	19 (9.3)	18 (11.8)	1 (1.9)
Hospitals other than home care hospitals	12 (5.39)	8 (5.3)	4 (7.5)
Home visit nursing agencies	25 (12.2)	0 (0.0)	25 (47.2)
Nursing homes	6 (2.9)	1 (0.7)	5 (9.4)
Home care support offices	3 (1.5)	0 (0.0)	3 (5.7)
Other facilities	7 (3.4)	4 (2.6)	3 (5.7)
			Number (%)

Ethical Issues Experienced by Home Care Physicians and Nurses

The most and second most common responses were shared by physicians and nurses. The most common response was “the patient’s wishes cannot be reliably understood owing to their impaired decision-making capacity” (96.1% and 92.5%, respectively) (Table 2). The next most common response was “there is disagreement between the patient and their family members over the necessary healthcare” (89.5% and 88.7%, respectively).

Table 2.

Ethical issues experienced by home care physicians and nurses

	Physicians (n=152)					Nurses (n=53)
	Never experienced	Not often experienced	Have experienced			Never experienced	Not often experienced	Have experienced
			Sometimes experienced	Often experienced	Very often experienced			Sometimes experienced		Often experienced	Very often experienced	P-value
The patient does not give consent to the healthcare plan that I think is best.	2	25	125 (82.2)			5	10	37 (69.8)				0.111
			100	18	7			32		4	1
The patient’s financial situation prevents optimal healthcare.	5	38	107 (70.4)			1	11	41 (77.4)				0.474
			86	17	4			29		9	3
The absence of a caregiver among the patient’s family members inhibits optimal healthcare for the patient.	3	26	123 (80.9)			1	16	36 (67.9)				0.058
			77	40	6			21		11	4
Difficulty in determining what is optimal healthcare for the patient.	1	53	98 (64.5)			1	18	34 (64.2)				> 0.999
			77	16	5			26		6	2
The patient or their family members request healthcare that is not medically indicated.	0	28	122 (80.3)			1	19	33 (62.9)				0.008
			95	21	6			25		8	0
The patient’s wishes cannot be reliably understood owing to their impaired decision-making capacity.	1	4	146 (96.1)			0	4	49 (92.5)				0.242
			60	56	30			26		19	4
Difficulty in interpreting advance directives.	13	91	47 (30.9)			7	30	16 (30.2)				>0.999
			39	7	1			14		2	0
The patient has neither the decision-making capacity nor family members who can presume the patient’s preferences.	2	37	112 (73.7)			1	19	33 (62.3)				0.114
			85	22	5			24		9	0
There is disagreement between the patient and their family members over the necessary healthcare.	0	15	136 (89.5)			0	6	47 (88.7)				0.795
			90	39	7			22		19	6
There is disagreement among the patient’s family members over the necessary healthcare.	1	24	125 (82.2)			0	7	46 (86.8)				0.664
			91	27	7			29		13	4
The patient or their family members request healthcare that deviates from the law or guidelines.	13	81	55 (36.2)			15	25	13 (24.5)				0.128
			48	6	1			12		0	1
There is disagreement between myself and other healthcare professionals.	3	79	68 (44.7)			2	23	28 (52.8)				0.424
			61	7	0			23		5	0
There are concerns whether an action may lead to a break in confidentiality.	15	97	38 (25.0)			11	23	19 (35.8)				0.157
			34	3	1			16		3	0
					Number (%)					Number (%)		Fisher's exact test*

*The percentage of physicians and nurses, respectively, who responded “have experienced” was statistically examined.

There was no statistically significant difference between physicians and nurses for the items other than “the patient or family members request healthcare that is not medically indicated”.

Among physicians, the third and fourth most common responses were “the patient does not give consent to the healthcare plan I think is best” and “there is disagreement among the patient’s family members over the necessary healthcare” (82.2%) (Table 2). Among nurses, the third most common response was “there is disagreement among the patient’s family members over the necessary healthcare” (86.8%), and the fourth most common response was “the patient’s financial situation prevents optimal healthcare” (77.4%). Significantly more physicians (80.3%) than nurses (62.9%) responded that “the patients or family members request healthcare that is not medically indicated.” We did not observe any significant differences between physicians and nurses for the other responses.

Requirements for a Consultant on Ethical Issues

For both physicians and nurses, “experience with, and insight into, healthcare ethics” (79.6% and 88.0%, respectively) and “experience with, and insight into, home care” (79.6% and 77.4%, respectively) were cited most frequently as especially important factors when choosing a person to consult regarding ethical issues in home care (Table 3). In contrast, very few respondents (4.6% and 9.4%, respectively) cited “certifications from academic or professional associations.” A small number of respondents (9.2% and 5.7%, respectively) expressed that it was important to them whether or not they knew the person they were consulting with. Significantly more nurses (45.3%) than physicians (28.3%) selected “experience with, and insight into, religious and/or spiritual issues.” There were no significant differences between physicians and nurses for the other options.

Table 3.

Requirements for a consultant on ethical issues

	Physicians (n = 152)	Nurses (n = 53)	P-value
Experience with, and insight into, home care	121 (79.6)	41 (77.4)	0.700
Experience with, and insight into, healthcare ethics	121 (79.6)	44 (88.0)	0.690
Experience with, and insight into, legal issues	79 (52.0)	26 (49.1)	0.751
Experience with, and insight into, religious and/or spiritual issues	43 (28.3)	24 (45.3)	0.028
Certifications from academic or professional associations (e.g., clinical ethics advisor certified by JACE, CNS certified by the JNA)	7 (4.6)	5 (9.4)	0.305
Acquaintance or not	14 (9.2)	3 (5.7)	0.568
Ease of consultation	65 (42.8)	21 (39.6)	0.748
		Number (%)	Fisher’s exact test

No items showed statistically significant differences between physicians and nurses other than “experience with, and insight into, religious and/or spiritual issues”.

People or Organizations Actually Consulted on Ethical Issues

The most common consultation source for both physicians and nurses was “nurses involved with the case” (78.9% and 77.4%, respectively) (Table 4). Next were “care managers involved with the case” (63.2% and 54.7%, respectively) and “physicians involved with the case” (49.3% and 64.2%, respectively). A small number of respondents selected “staff with expertise in healthcare ethics, such as a clinical ethics advisor certified by JACE” (4.6% and 11.3%, respectively), “CNS certified by the JNA” (2.0% and 7.5%, respectively), “lawyers and other legal professionals” (8.6% and 3.8%, respectively), and “the ethics committee of my institution” (8.6% and 3.8%, respectively).

Table 4.

People or organizations actually consulted on ethical issues

	Physicians (n = 152)	Nurses (n = 53)	P-value
Supervisors or co-workers not involved with the case	70 (46.1)	19 (35.8)	0.260
Physicians involved with the case	75 (49.3)	34 (64.2)	0.790
Nurses involved with the case	120 (78.9)	41 (77.4)	0.847
Pharmacists involved with the case	34 (22.4)	6 (11.3)	0.107
Social workers involved with the case	56 (36.8)	21 (39.6)	0.744
Care managers involved with the case	96 (63.2)	29 (54.7)	0.327
Care workers and helpers involved with the case	38 (25.0)	12 (22.6)	0.853
Staff with expertise in healthcare ethics, such as a clinical ethics advisor certified by JACE	7 (4.6)	6 (11.3)	0.103
CNS certified by the JNA	3 (2.0)	4 (7.5)	0.075
Lawyers and other legal professionals	13 (8.6)	2 (3.8)	0.363
The ethics committee of your institution	13 (8.6)	2 (3.8)	0.363
Not applicable	6 (3.9)	5 (9.4)	0.156
		Number (%)	Fisher’s exact test

No items showed statistically significant differences between physicians and nurses.

Preferred Approach to Consulting on Ethical Issues in Home Care

The approach that both physicians and nurses preferred to use most when consulting about ethical issues in home care was “multidisciplinary discussions in the community” (67.8% and 71.7%, respectively) (Table 5). This was followed by “participation of healthcare ethics experts in meetings” (50.0% and 52.8%, respectively) and “consult about cases at meetings held by healthcare ethics experts” (48.7% and 52.8%, respectively). Compared to them, fewer respondents mentioned “discussions with staff of the same profession as myself in other facilities in the community” (41.4% and 35.8%, respectively) and “consultation services provided by the ethics committee of a regional core hospital” (30.3% and 30.2%, respectively).

Table 5.

Preferred approach to consulting on ethical issues in home care

	Physicians (n = 152)	Nurses (n = 53)	P-value
Discussions with staff from the same profession as myself in other facilities in the community	63 (41.4)	19 (35.8)	0.518
Multidisciplinary discussions in the community	103 (67.8)	38 (71.7)	0.731
Consultation services provided by the ethics committee of a regional core hospital	46 (30.3)	16 (30.2)	1.000
Participation of healthcare ethics experts in meetings	76 (50.0)	28 (52.8)	0.752
Consultation about cases in meetings held by healthcare ethics experts	74 (48.7)	28 (52.8)	0.635
Not applicable	14 (9.2)	2 (3.8)	0.250
		Number (%)	Fisher’s exact test

No items showed statistically significant differences between physicians and nurses.

Preferred Organizations for Support on Ethical Issues in Home Care

Regarding preferred organizations for support on ethical issues in home care, the most common responses of physicians and nurses were “academic societies related to home care” (66.4% and 62.3%, respectively), “academic societies related to healthcare ethics” (58.6% and 52.6%. respectively), and “multidisciplinary organizations of physicians, nurses, and other healthcare providers involved in community home care” (55.3% and 60.4%, respectively) (Table 6); 28.8% of nurses cited “nursing associations” significantly more than 11.8% of physicians.

Table 6.

Preferred organizations to support ethical issues in home care

	Physicians (n = 152)	Nurses (n = 53)	P-value
Medical association	46 (30.3)	9 (17.0)	0.072
Nursing association	18 (11.8)	15 (28.3)	0.008
Academic associations related to home care	101 (66.4)	33 (62.3)	0.617
Academic associations related to healthcare ethics	89 (58.6)	28 (52.8)	0.520
Ethics committees of regional core hospitals	36 (23.7)	10 (18.9)	0.568
Multidisciplinary organizations of physicians, nurses, and other healthcare providers involved in home care in the community	84 (55.3)	32 (60.4)	0.630
Bar association	22 (14.5)	3 (5.7)	0.141
Ethics committee of your institution	21 (13.8)	4 (7.5)	0.330
Not applicable	6 (3.9)	3 (5.7)	0.698
		Number (%)	Fisher’s exact test

There was no statistically significant difference between physicians and nurses for the items other than “nursing association”.

Discussion

Characteristics of the Respondents

MHLW (2022b) has set standards for home care clinics (“zaitaku ryoyo shien shinryojo” in Japanese) and hospitals (“zaitaku ryoyo shien byoin” in Japanese), which include (1) ensuring a system for receiving 24-h contact from patients and their family members, (2) a 24-h home visit system, (3) a 24-h home nursing system, (4) a system for hospitalization in case of emergency, (5) provision of information to cooperating medical institutions, and (6) reporting the number of end-of-life care patients once a year to MHLW. Furthermore, the criteria for home care hospitals include (1) the hospital must have 200 or fewer beds, or there must be no clinics within a 4-km radius of the hospital, and (2) the physician in charge of house calls must be different from the physician on duty at the hospital. Home visit nursing agencies are required to provide home visit nursing services and have at least the equivalent of 2.5 full-time nurses on duty (MHLW 2022c).

Of the 152 physicians who responded to this survey, 117 (77.0%) worked at home care clinics that met the MHLW’s criteria, and 18 (11.8%) worked at home care hospitals that met the MHLW’s criteria. Of the 53 nurses who responded to this survey, 10 (18.9%) worked at home care clinics that met the MHLW’s criteria, 1 (1.9%) at home care hospitals that met the MHLW’s criteria, and 25 (47.2%) at home visit nursing agencies. In addition, 125 (82.2%) physicians and 39 (73.6%) nurses had at least 5 years of home health care experience. These facts suggest that many of the participants in this survey participated in home care professionally.

Ethical Issues in Home Care

We found that physicians and nurses involved in home care are faced with ethical issues, mainly “ the patient’s wishes cannot be reliably understood owing to their impaired decision-making capacity” and “there is disagreement between patient and their family members over the necessary healthcare” (Table 2).

We recently conducted focus group interviews with home care providers (8 physicians, 13 nurses, and 11 care managers) and qualitatively analyzed the results (Takeshita et al. 2023). The fundamental values of home care providers were to “focus on the patient and their family” and to “build a consensus among the people involved.” In addition, the ethical issues they face can be categorized into issues related to “collaboration,” “the environment and system,” “home care providers,” “the patient and their family,” “the patient themselves,” and “the family and home care providers.” Furthermore, the findings imply that the ethics support physicians and nurses need includes free access to consultations in daily practice, a place for multidisciplinary discussions with the participation of third parties, ethics education for professionals, and experts in both home care and healthcare ethics. Although the focus group was small and qualitative in nature, the findings are consistent with the results of the present study.

The Japanese government estimates that the population of people aged 65 and older with dementia will increase from 4.62 million (15% of the population aged 65 and older) in 2012 to 7 million (20% of the population aged 65 and older) by 2025 (Cabinet Office of Japan 2017). The importance of ethical issues surrounding patients who have lost decision-making capacity will increase in the future.

Because there are many disorders besides dementia in which a patient’s decision-making capacity is impaired, the ethical issues associated with impaired decision-making capacity are not necessarily specific to home care; they often arise in the hospital setting as well. Takeshita (2018) compiled a summary of 15 cases of ethics consultations experienced at a university hospital in central Tokyo; in 11 of the 15 cases, patients lacked decision-making capacity. Kaneda (2020) reported on 74 cases of ethics consultations at a university hospital in Osaka; only 17 patients did not have impaired decision-making capacity.

Unsurprisingly, home care providers may find it difficult to reach a consensus when trying to obtain not only the patient’s consent, but also that of the family. Family members may inhibit patients’ autonomous decision-making; Asai et al. (2022) found that healthcare professionals must be aware of the possible adverse effects of psychocultural-social tendencies in Japan, including “surmise,” “self-restraint,” “air,” “peer pressure,” and “community,” on the implementation of shared decision-making, and must promote autonomous decision-making among patients so that they can make choices that sufficiently reflect their individual and personal views of life, experiences, goals, preferences, and values.

In cases where the patient’s and family’s wishes do not coincide, it is fundamental that the patient’s wishes be prioritized from the standpoint of respecting patient autonomy. However, in home care, it is important to consider the family’s wishes and convenience as well because the patient’s healthcare plan directly affects the lives of their family members, especially those living with the patient. Hence, a lack of agreement between the patient and the family is more likely to be a problem in home care than in hospital care. This may be more characteristic of home care than hospital care.

What Characteristics do Home Care Physicians and Nurses look for in an Ethics Consultant?

The largest number of respondents, both physicians and nurses, cited “experience with, and insight into, home care” and “experience with, and insight into, healthcare ethics” as critical when choosing whom to consult with on ethical issues (Table 3). It is possible to interpret this response as indicating that personnel with expertise in both home care and healthcare ethics are in demand, or that both experts in home care and healthcare ethics are in demand. For the former, this could be the case for home care providers who have been educated in healthcare ethics and for healthcare ethics experts who have been trained in home care. It was not possible for us to determine which of these two kinds of individuals would be specifically expected to be consulted on ethical issues. We also found that certifications from academic or professional associations, such as JACE and the JNA, were not considered very important by physicians and nurses involved in home care (Table 3).

A picture emerged in which the multidisciplinary professionals involved in the case consulted with each other to address the ethical issues related to it. As for who they actually consulted with, many respondents cited the physicians, nurses, and social workers involved with the patient. In other words, when they have to address ethical concerns, they consult with personnel who have “experience with, and insight into, home care.” In Japan, even on the hospital ethics committees of large institutions, such as university hospitals, more than half lack ethics experts or external members (Takeshita et al. 2022). Since many home clinics and home visit nursing agencies are much smaller than university hospitals, it is not surprising that they do not have ethics specialists or are unable to seek outside assistance. Given this situation, efforts to help professionals currently involved in home care to gain “experience with, and insight into, healthcare ethics” will be necessary to expand ethics support in home care.

Such efforts have already been made in Japan. The Center for Biomedical Ethics and Law (CBEL) was established at the University of Tokyo in 2003 and offered educational opportunities for healthcare providers to act as “consultants in biomedical ethics,” including clinical ethicists, from 2004 to 2015 (Akabayashi 2019). CBEL first established a 6-month course with lectures given once a week. Later, a program of 3-day intensive lectures was also launched. CBEL graduates participate in healthcare ethics consultations at most hospitals registered by JACE as model hospitals for healthcare ethics consultations (JACE 2021). In other words, the fairly short training program offered by CBEL may have been the driving force behind the rapid spread of healthcare ethics consultation in Japan.

Kyoto University is another good example of such initiatives by universities to provide educational opportunities outside the framework of formal degree-seeking programs. Kyoto University has been offering a 2-day educational course since 2015, mainly for healthcare providers, with the goal of equipping them with basic ethical and legal knowledge about clinical ethics and the ability to formulate practical responses to ethical issues that arise in actual clinical practice (Kyoto University 2022).

As an example of an academic society, the efforts of JACE, which is an academic society focusing on clinical ethics, established in 2012 (JACE 2013) are noteworthy. Dr. Kunio Nitta, the founding president of JACE, is the chairman of the National Liaison Association of Home Care Clinics. Two of the three vice-chairpersons are physicians and one is a lawyer. The society has been committed to promoting and improving the quality of healthcare ethics consultation in Japan. Takeshita (2019) analyzes the 28 cases discussed during mock clinical ethics consultations at the annual conferences from 2013 to 2018 as representative examples of ethical issues experienced in Japanese healthcare facilities. Moreover, JACE has been running an education program since 2016 to train personnel who will be responsible for clinical ethics consultations and to certify them as clinical ethics advisors (JACE 2022). The JACE program consists of a 3-day lecture and simulated ethics consultation, followed by the submission of a report on case studies, to be certified by JACE as a clinical ethics advisor. Although there is no publicly available information on the participants’ occupations, our experience as instructors in the clinical ethics advisor education course indicates that most of the participants are healthcare providers in medical facilities such as physicians, nurses, and social workers.

Clinical ethicists practicing in the USA have been expected to meet two criteria (Kodish et al. 2013; Fins et al. 2016). The first criterion is a degree, that is, they are anticipated to have at least a master’s degree in a relevant discipline. The second criterion is clinical experience; some graduate schools provide clinical training as part of their programs. More recently, the American Society for Bioethics and Humanities (ASBH) defined competencies for ethics consultants who provide healthcare ethics consultations, and there is a certification program for ethics consultants (ASBH 2022). Thus, it appears that institutions of higher education and academic societies are working together to train healthcare ethics professionals.

Although it is unknown to what extent the North American model of training clinical ethicists through graduate education is in demand and whether it is appropriate for training clinical ethicists in Japan, there is a Japanese graduate school that trains healthcare ethics specialists in connection to the acquisition of a degree. For example, Miyazaki University offers the Bioethics Coordinator Course in its master’s program (Miyazaki University Graduate School of Medicine and Veterinary Medicine 2022). There is also a precedent in Japan for collaboration between graduate schools and professional education in the healthcare field; the training program for CNS is implemented in cooperation with the JNA and the Japan Council of Nursing Program Universities (JNA 2022). To become a CNS, a registered nurse has to complete a master’s degree in nursing and earn the required credits from the Japan Council of Nursing Programs, and have at least 5 years of practical training, at least three of which must be in the field of professional nursing. Healthcare ethics and ethical coordination are important components of CNS educational programs. As of 2022, CNS programs have been accredited in 14 areas, including cancer nursing, psychiatric mental health nursing, and community health nursing. However, according to data, as of the end of December 2021, only 30 of Japan’s 2944 CNS are certified in the area of community health nursing, whose activities are focused on community healthcare (JNA 2022). It is necessary to increase the number of CNS in community health nursing for the future. In addition, we hope that a CNS program will be established in the realm of healthcare ethics.

While it is important for home care physicians and nurses to receive a certain amount of education in healthcare ethics and to offer ethics support in the community, it is also desirable for ethicists to learn about healthcare and to enter clinical practice. Even though unlicensed ethicists in the medical profession can participate in the Kyoto University and JACE programs, there are not enough efforts to bring ethics scholars into the healthcare field. It would be ideal to establish an educational system that enables ethicists to participate in community ethics support. The abovementioned issues ultimately relate to how to build the profession of clinical ethicists in Japan.

What Organization should Support Home Care Physicians and Nurses to address Ethical Issues in the Community?

The approach that both physicians and nurses most commonly preferred to use when consulting on ethical issues in healthcare was “multidisciplinary discussions in the community.” Since the questionnaire did not clearly define whether the concept of “community (chi-i-ki in Japanese)” includes patients, their families, or local residents other than local healthcare providers, it is not clear whether respondents intended to have the discussion among only healthcare providers or, instead, among a broader group of stakeholders. The next most common responses were “participation of healthcare ethics experts at meetings” and “consult about cases at meetings held by healthcare ethics experts.”

Taken together, these responses suggest that there is either an initiative to have healthcare ethics experts participate in meetings of multidisciplinary professionals involved in home care in the community, or that there is a demand for healthcare ethics experts to hold multidisciplinary meetings in the community.

As for organizations to support home care physicians and nurses to address ethical issues in the community, more respondents expressed expectations for academic societies related to home care or healthcare ethics, as well as organizations of home care physicians and nurses in the community compared to medical and nursing associations (Table 6). Although these responses are consistent with the two types of expertise in home care and healthcare ethics that are sought in terms of consulting with third parties about ethical issues (Table 2), it is unclear why the expectations for academic societies were greater than those for medical and nursing associations. In Japan, membership in medical and nursing associations is not mandatory for physicians or nurses; therefore, respondents may have included both members and non-members. Since we conducted this study with members of JAHCM, this may have led to a bias toward seeking academic associations as a main source of ethics support.

Only 23.7% of physicians and 18.9% of nurses preferred the “ethics committee of a regional core hospital” as a source of support for clinical ethics in the community, which was not a large number. However, although efforts may still be insufficient, many hospitals in Japan have established ethics committees and provide ethics consultation, and we believe it would be a shame not to take advantage of hospital resources.

JACE launched a registration system for organizations providing clinical ethics consultations in 2019. As of November 2022, eight organizations have been registered to provide healthcare ethics consultations in the community (JACE 2021). Of these eight organizations, seven are led by several core regional hospitals (e.g., university hospitals) that provide ethics consultation services, except for one that is run by a home visit nursing agency. In other words, regional core hospitals are beginning to offer healthcare ethics support in the community, including in home care. Moreover, a system in which such hospitals provide healthcare ethics consultations with the support of academic societies, as JACE is attempting to do, could be an efficient model for community-based ethics support. To this end, it will be necessary to clarify how the currently registered organizations in JACE are providing effective support to home care providers to address local ethical issues. However, considering the results of the previous study showing that home care providers feel that hospital workers’ lack of understanding of home care inhibits cooperation between home care providers and hospital workers (Takeshita et al. 2023), it is important to deepen hospital workers’ understanding of home care.

Further studies are needed to determine the extent to which medical associations can provide ethics support in the future, but it should be noted that there are areas of medicine where medical associations do in fact play a public role in ethics education. In Japan, abortion is illegal under the Penal Code, but it is permitted in exceptional cases when the conditions set forth in the Maternal Protection Law are met. Article 14 of the Maternal Protection Law stipulates that, in addition to the consent of the pregnant woman and her spouse (there is a strong argument that spousal consent should not be required), there are other conditions that must be met by the pregnant woman and the physician who performs the abortion. The two conditions for a pregnant woman are that the continuation of pregnancy or delivery is likely to cause serious physical or financial harm to their health, and that the pregnancy was the result of an act of adultery committed by assault or threat or while the woman was unable to resist or reject the act. The condition on the part of the physician is that they must be designated by a prefectural medical association. In order to be designated by a medical association as a physician authorized to perform abortions, in addition to technical criteria such as being a specialist in the Japanese Society of Obstetrics and Gynecology and having a certain level of experience in abortion procedures, prefectural medical associations require designated physicians to attend lectures on bioethics that the medical association holds (Japan Medical Association 2013). In light of this track record, it may be possible for local medical associations to assume responsibility for ethics education for a wide range of physicians, including those in home care.

Difference between Physicians and Nurses

In this survey, a comparison was made between the responses of physicians and nurses on each of the items, and no statistically significant differences were found between the two groups except for three items. In “ethical issues experienced by home care physicians and nurses” (Table 2), significantly more physicians than nurses selected “patient or family members request healthcare that is not medically indicated.” The reason for this may be that physicians are the main professionals that make decisions on medical indications. In “requirements for a consultant on ethical issues,” significantly more nurses than physicians selected “experience with, and insight into, religious and/or spiritual issues” (Table 3), but the reason for this is unclear. In addition, significantly more nurses than physicians selected “nursing association” for “preferred organizations to support ethical issues in home care” (Table 6). In contrast, more physicians than nurses selected “medical association,” but this difference was not statistically significant. It is assumed that neither physicians nor nurses are familiar with professional associations of other professions, but since many of nurses who participated in the present survey are working in medical institutions, where a physician is requested by Japanese law to be an administrator (Table 1), there may have been a certain affinity for medical associations among such nurse participants.

Limitations

Because the participants were physicians and nurses who were members of the JAHCM, the sample might not be representative of all home care physicians and nurses in Japan. In addition, the accurate response rate is not known because the number of JAHCM members who actually engage in home care is unknown among those who received the e-mail requesting participation in the survey.

Furthermore, because the web-based questionnaire was structured according to our previous research (Takeshita et al. 2023), it was not able to ascertain other responses. Our future mission needs to include a more comprehensive survey of ethical issues arising in healthcare settings, as well as to propose a system to assist in addressing ethical issues.

Conclusion

We found that Japanese home care physicians and nurses face a number of ethical issues, including the exploration of the wishes of patients without decision-making capacity and the formation of a consensus between patients and their families. To support them to address ethical concerns, it is expected that academic societies, universities, and professional associations will continue to educate healthcare providers in healthcare ethics, and that regional core hospitals will play a role in providing ethics support to the community. Although the feasibility in Japan is unclear, it may be useful for ethicists to participate in clinical practice.

Author Contribution

Kei Takeshita contributed to the study conception and design. Material preparation, data collection, and analysis were performed by all authors. The first draft of the manuscript was written by Kei Takeshita and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding

This work was supported by the Japan Society for the Promotion of Science Grant-in-Aid for Scientific Research (JSPS KAKENHI Grant), #19K10543.

Data Availability

The data of this study are available from the corresponding author upon reasonable request. All data are in Japanese.

Declarations

Ethical Approval

We obtained ethical approval from the Institutional Review Board for Clinical Research of the Tokai University School of Medicine (20R240) on 16 November 2020.

Consent to Participate and Consent for Publication

In the cover letter to the questionnaire, we explained that participation was voluntary and that by responding, the participants were providing their consent to take part in the study, and that the data obtained would be published in academic communities.

Conflict of Interest

The authors declare no competing interests.