Article
Information-sharing ethical dilemmas and decision-making for public health nurses in Japan
Nursing Ethics 2015, Vol. 22(5) 533–547 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014549879 nej.sagepub.com
Chisato Suzuki and Katsumasa Ota Nagoya University Graduate School of Medicine, Japan
Masami Matsuda Tokyo Kasei-Gakuin University, Japan
Abstract Background: Information sharing is one of the most important means of public health nurses collaborating with other healthcare professionals and community members. There are complicated ethical issues in the process. Research objectives: To describe the ethical dilemmas associated with client information sharing that Japanese public health nurses experience in daily practice and to clarify their decision-making process to resolve these dilemmas. Research design: Data were collected using a three-phase consensus method consisting of semistructured interviews, self-administered questionnaires and a group interview. Participants and research context: We surveyed administrative public health nurses in Shizuoka Prefecture, Japan. The semi-structured interviews were carried out with 12 administrative public health nurses, and the self-administered questionnaires were sent to all 899 administrative public health nurses. The group interview was carried out with eight administrative public health nurses. Ethical considerations: Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University, Japan (8-158, 9-130). Findings: Information-sharing ethical dilemmas occurred most often when clients’ decisions did not coincide with the nurses’ own professional assessments, particularly when they faced clinical issues that were inherently ambiguous. In their decision-making processes, nurses prioritised ‘protection of health and life’. Discussion: These findings suggest that, above all, they sought to address urgent risks to clients’ lives while upholding the principle of client autonomy as much as possible. In such cases, the nurses made decisions regarding whether to share information about the client depending on the individual situation. Conclusion: Public health nurses should protect the client’s health while taking into consideration their relationship with the client. Keywords Decision-making process, ethical dilemma, information sharing, Japan, public health nurse
Corresponding author: Chisato Suzuki, School of Health Sciences, Nagoya University Graduate School of Medicine, 1-1-20 Daiko-minami, Higashi-ku, Nagoya 461-8673, Japan. Email: [email protected]
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Introduction Public health nursing aims to promote and protect the health of populations using knowledge obtained from nursing, social and public health sciences.1 Public health nurses (PHNs), in their capacity as both local government employees and nursing staff at public health centres, must work with limited resources to assist individuals in their communities’ healthy lives. To accomplish this, they must collaborate with public health specialists and nurses as well as the wider population. ‘Collaboration’ is one of the standards of public health nursing practice, requiring PHNs to collaborate with various disciplines and organisations.2 Information sharing is one of the important means for promoting such collaboration. PHNs must carefully handle personal information, sharing pertinent information with concerned parties as quickly and precisely as possible to ensure its effective use. However, complicated ethical issues are often involved in the information-sharing process. Thus, PHNs must be able to make appropriate ethical decisions regarding information sharing, balancing privacy protection with the effective use of information. In this study, we examined how PHNs make decision regarding the client information when confronted with such ethical dilemmas.
Information-sharing behaviour among healthcare workers Researchers and clinicians have long recognised the importance of information sharing when collaborating with other healthcare organisations and professionals.3 In the United Kingdom, despite policies that are continually improved and legislative measures that encourage inter-agency collaboration, researchers have found that failure to share information across public service organisations can have tragic consequences. However, even as steps are made to share information more readily, great care is taken to ensure that this information is not inappropriately shared.4 The extent to which information can be shared (including the types of information and with whom) is a core ethical issue in healthcare services. For example, emphasising the advantages of information sharing could lead to paternalism, while emphasising its disadvantages could prevent effective information use. Furthermore, Richardson and Astana4 stated that professional cultures influence information-sharing behaviours. A professional culture shaped by the patient-focused medical model is likely to place the need to protect individual patient confidentiality above the need to communicate important information. In contrast, in a professional culture shaped by the social work model, which is concerned not only with the individual client but also with their families, communities and wider society, staffs are receptive to the need for information sharing to be prioritised over confidentiality.4
Nursing practices and information-sharing behaviour by Japanese PHNs Following the Public Health Nurses, Midwives, and Nurses Act (1941), PHNs in Japan receive different licences to registered nurses and midwives, with PHN licensure requiring one or more years of additional education. As of 2013, there were approximately 47,000 PHNs in Japan, with approximately 70% working as civil servants in administrative organisations, such as community-based health centres.5 Historically, the public health priority has been assigned generally to preventing the spread of infectious diseases, which were much more common in previous generations.6 Client information was shared to protect both individual and population health, and such sharing was supported by both professional morality and Japanese law. Information confidentiality was decided on a case-by-case basis, and care providers and clients recognised their common goal as partners working together to improve clients’ health. As such, they often built relationships involving high levels of trust, allowing client information to be shared and used effectively.
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However, recent societal changes have influenced the relationships between clients and PHNs, making it much more difficult to form such close relationships. As society has become increasingly reliant upon computers, information-sharing methods have become more complicated and formal.7 Clients are also increasingly more conscious of their right to control their personal information in the wake of laws, such as those enacted in Japan in 2005 to regulate the protection of personal information. Thus, information sharing based on trusting, personal relationships among community members has decreased; health professionals today are much more conscious of the need to obtain their clients’ consent. It became harder for PHNs to collaborate with other professionals, groups and agencies through effective information sharing when obtaining consent for the information sharing was difficult.
Nursing ethics as the basis for PHN activities Many studies regarding nursing ethics have focused on client-centred care. In public health nursing, professionals consider care from two perspectives: care for individual clients (i.e. an individual perspective) and care for the community and the accompanying social context (i.e. a population perspective). Ethical decisions in public health nursing often derive from conflicts between what is beneficial for individuals and what is beneficial for communities. Such conflicts arise less frequently in hospitals or other nursing facilities because of client-centred care.8–11 Asahara et al.12 suggested a number of origins for these ethical issues in public health nursing, including conflicting thoughts regarding treatment or care between clients and their families, conflicting views about services to be provided between PHNs and administrators and conflicting views regarding caregiving between PHNs and other professionals. In a society in which individual freedom is respected, forcible interventions to improve health at either the individual or community level are generally discouraged. Policy-makers must instead maintain a delicate balance between respecting individual freedom and protecting health. To this end, researchers in the United Kingdom have created an ‘intervention ladder’ to be used in public health policy-making. This tool charts the extent to which an intervention limits personal freedom while providing more effective public healthcare, therefore providing an effective way to examine different public health policies.13 Kodama14 suggests a policy of ‘libertarian paternalism’, whereby environments are manipulated to encourage people to choose healthier lifestyles on their own. Similarly, Racher15 believes that community health can be improved by encouraging concerned parties to form relationships, engaging in dialogue through community participation and empowerment and strengthening the morale of the entire community. Both Kodama and Racher stress the need for interventions that work with both individuals and whole communities. When PHNs engage in such interventions, their ethical decision-making differs from that of nurses working in hospitals because PHNs are required to think about not only a client but also his or her family and community.2 Fry and Johnstone16 and Thompson and Thompson17 have conducted a number of studies regarding decision-making models that nurses should follow when making ethical decisions, and their findings have been used in Japan as a guide for ethical decision-making in nursing practice. However, many of these models are based on an autonomy-weighted approach, which is principle-based position involving traditional Western principle-based ethics.18–20 No report has yet investigated a practical model for effective decision-making in public health nursing that takes into account both the individual and population. In light of this information regarding the lack of such practical models, the present study has an immediate practical application. Difficulties in making such decisions can cause moral distress, which has been significantly correlated with burnout and frequently cited as a reason why PHNs leave their jobs.21 In some situations, PHNs can easily make decisions according to their own values. However, as situations become more complex, it becomes more difficult for PHNs to make conclusive decisions, increasing the likelihood that they will need to act counter to their own values when choosing a course of action.21 It is our hope that
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the findings of this study will provide suggestions to PHNs to help them clarify their priorities when making decisions in complex situations.
Research objective The purpose of this study was to better understand the ethical dilemmas associated with information sharing commonly experienced by PHNs as well as the decision-making processes they use to cope with such dilemmas. Specifically, we aimed (a) to construct a conceptual framework for the ethical dilemmas in information sharing experienced by PHNs, (b) to clarify the structure of these ethical dilemmas in information sharing and (c) to clarify PHNs’ decision-making processes in coping with these dilemmas. For the purpose of this study, the term ‘information’ means personal information in the health and social context that comes into PHN’s knowledge during the course of work.3 Furthermore, the term ‘obtaining consent’ means individual agrees that PHNs share his or her information to collaborate with various disciplines and organisations.
Methods Research design To construct a conceptual framework and identify the ethical decision-making processes of as many PHNs as possible, we used a consensus method comprising three assessments: semi-structured interviews, a fourround mail survey and a group interview.
Semi-structured interviews (Phase 1) In 2009, we conducted semi-structured interviews with 12 PHNs who were members of public health units under the administration of various levels of local government, including prefectures, cities and towns. We consulted professional association for PHNs in Shizuoka, Japan, to commission this study. Their leader discussed this study with the chief PHNs within the various levels of the administration unit and with the supervising and controlling PHNs. The leader referred us to the three workplaces that agreed to participate in this study. After initial communication via telephone, we visited the workplaces, and the chiefs recommended a number of PHNs. The interviews were undertaken at participants’ workplaces. All participants provided written informed consent to be interviewed and audio-recorded. In the interviews, participants were asked about their experiences with ethical dilemmas in information sharing and the decisions they made to resolve these dilemmas. Participants responded to the following questions: (a) ‘what kind of ethical issues relating to information sharing do you experience during daily work?’ (b) ‘what is the essence of these ethical issues?’ (c) ‘how do you typically resolve these issues?’ and (d) ‘what principles or value systems do you typically apply to solve those ethical issues?’ Interviews lasted from 30 to 45 min. After each interview, audiotapes were transcribed verbatim; all identifying personal information was removed from the transcripts. Data were analysed using thematic analysis. First, each transcript was read and coded, and then the meaning of each code was identified and labelled. The newly labelled codes were sorted and combined and then re-sorted according to emerging patterns. Finally, each pattern of labels was categorised into three themes with each theme. During this analysis process, each interview was re-examined by one or two nursing researchers to ensure that all labels were included in the identified themes. Coding disagreements were resolved by referring to the relevant literature.
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Figure 1. Outline of the mail survey of self-administered questionnaires (Phase 2).
Mail survey using self-administered questionnaires (Phase 2) In order to clarify PHNs’ coping strategies and decision-making processes in handling ethical dilemmas regarding information sharing, we mailed self-administered questionnaires to another group of PHNs. These questionnaires used the four-round modified Delphi technique, perhaps the most well-known consensus method (outlined below). The questionnaire was based on a literature review and the results of the semistructured interviews (see Figure 1). The study period was mid-June 2009 to early January 2010. First, we sent recruitment letters to all PHNs (N ¼ 899) in the Shizuoka Prefecture, Japan, which is representative of an average prefecture and where the researcher had a relationship to the PHNs. These letters explained the aims, design and anticipated study duration. Potential participants were told that the study would comprise four rounds of questionnaires and that they had the right to withdraw from participation at any time without penalty. The original Delphi method uses a panel (referred to as ‘experts’) to reach consensus regarding specific and often complex problems or issues. Experts administered a series of two or more questionnaires (‘rounds’) by post. Generally, each round reports the consensus rate reached in the previous round, giving participants the opportunity to change their responses based on prior knowledge.22–24 In this study, we modified the original Delphi method to elicit opinions regarding ethical decisionmaking processes in the situation involving ethical dilemmas in information sharing. Each round employed the following methods to encourage consensus among the participants: (a) presentation of the concept, (b) summary of opinions and (c) reconstruction. The first-round questionnaire was designed to gather a wide range of data regarding ethical dilemmas in information sharing that PHNs encountered in their practice. This included clarifying the health issues for which PHNs were most likely to experience these dilemmas during routine work, extracting the elements
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that led to them and identifying how they resolved their dilemmas. From the extracted health-related situations, we created five case examples (hereafter referred to as ‘the five cases’), which we used in the secondround questionnaire to assess responses to common dilemmas. The items considered in solving the dilemma were organised into 18 items. In this process, we referred to the principle-based ethics so that item deflection did not occur. In the second-round questionnaire, we gathered the opinions for the five cases shown in the first round. We referred to the four-box approach demonstrated in Clinical Ethics by Jonsen based on casuistry as a method to analyse the situation that these five cases demonstrated. This shows the clinical concrete action guidance as being complementary to the principle-based approach, and guides a reasonable and concrete solution for practicing professionals. We showed the five cases and asked the following: whether the ethical dilemmas in information sharing occurred, the reason, potential solutions and the participants’ rankings of importance when making decisions regarding information sharing. However, because it would be difficult for participants to rank 18 items, we classified them into six categories, which participants then ranked. We labelled categories selected by more than 50% of the participants as ‘to be considered’, while categories under 50% were arranged in parallel because of the possibility of another ranking. In the third-round questionnaire, respondents were asked to evaluate the 18 items using a 4-point Likerttype scale (1 ¼ not appropriate to 4 ¼ very appropriate) regarding the appropriateness of each item for a given case, and how appropriate the ranking of those items were. In the final-round questionnaire, we confirmed the above findings for the 18 items and the order of the six categories.
Group interview (Phase 3) The final phase consisted of a group interview of eight veteran PHNs who had worked for public health centres in a city in Japan for more than 30 years. They are the chief PHNs with role of supervising and managing the PHNs. The interview took place in early January 2010 at their choice of workplace and lasted for approximately 60 min. All participants gave their written informed consent to be interviewed and audiorecorded. Participants were asked to confirm the validity of the 18 items produced during the previous two rounds as well as the validity of the ranking assigned to the six categories. After the interview, the audiotape was transcribed verbatim and identifying personal information was removed.
Ethical considerations Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University (8-158, 9-130).
Findings Phase 1: conceptual framework of ethical dilemmas (semi-structured interviews) We assumed that ethical dilemmas would arise from conflicts within participants’ value systems when making decisions about whether to share client information and that, in these instances, participants would use their expert judgement to arrive at a solution. We found that PHNs often experienced ethical dilemmas in information sharing in instances when there are conflicts between respecting client autonomy and these three concepts: beneficence, administrative regulations and the rights of the population (Figure 2).
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Figure 2. Conceptual framework of public health nurses’ (PHNs) ethical dilemmas and solutions.
While participants placed a high value on respecting the will of clients and their families, if nurses felt that a particular action might endanger the client, they tended to take preventive action, even if such action conflicted with the client’s autonomy. Dilemmas tended to be even more severe when not sharing information was perceived as a threat to the client’s life.
Phase 2: structure of the ethical decision-making process (four-round mail survey) Of the 899 PHNs initially approached for involvement in the four-round mail survey, 284 (31.6%) responded to the first-round questionnaire. There was considerable attrition in each round: the sample was reduced to 80 in the second round, 50 in the third round and 39 in the fourth round. Table 1 presents information regarding age, employment type and years of experience for participants in each questionnaire round.
Elements of ethical dilemmas (Round 1) Of the PHNs who responded, approximately 77.1% (n ¼ 284) had experienced conflicts in information sharing at some point in their daily practice. The issues most likely to cause conflicts included ‘suspected child abuse’ (77.1%), ‘abuse’ (75.4%), ‘mental health problems’ (68.0%) and ‘delay in a child’s growth and development’ (66.5%). Conflicts frequently arose predominantly in these three situations (Figure 3). Based on these findings, we constructed five cases that reflected common health-related issues (Figure 4). Most of the cases involved conflict between autonomy and beneficence, although in Cases 2 (mental health problem) and 4 (tuberculosis), the conflicts arose between autonomy and the right of the population. When PHNs faced conflicts about sharing information, participants replied that they consider whether sharing information would protect the client’s health and life, and whether sharing information would respect the client’s autonomy. These responses were classified into 18 items and grouped into six categories (Figure 5).
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Table 1. Participants’ employment type, age and years of experience. Round 1 Local government type Prefecture Municipality Other Age (years) 20–29 30–39 40–49 50þ PHN work experience M (SD) years and range
Round 2
Round 3
Round 4
29 216 39
10.2 76.1 13.7
10 61 9
12.5 76.3 11.3
8 32 10
16.0 64.0 20.0
9 23 7
23.1 59.0 17.9
66 99 79 40
23.2 34.9 27.8 14.1
18 34 20 8
22.5 42.5 25.0 10.0
10 23 13 4
20.0 46.0 26.0 8.0
6 18 12 3
15.4 46.2 30.8 7.7
13.6 (9.5)
1–37
12.5 (9.2)
1–37
12.4 (9.0)
1–37
13.3 (8.5)
1–29
PHN: public health nurse; SD: standard deviation.
Figure 3. The relationships between the situations and the five cases. PHN: public health nurse.
Solving ethical dilemmas (Round 2) In each case, most PHNs stated that they would take the following items into consideration when deciding on whether to share information: ‘perceived trustworthiness of the partner with whom the information is being shared’, ‘organisational policy of workplace’, ‘related laws and guidelines’ and ‘family’s intentions’. Little consideration was given to items such as ‘population size’ and ‘cost and economic factors’; notable exceptions were in Case 2 (mental health problems) and Case 4 (tuberculosis), for which the ‘influence of the decision on the health of the community and other groups’ and ‘existence of stigma’ were also taken into consideration (Table 2). For all cases, PHNs prioritised the ‘protection of health and life’, with over 59.3% of PHNs selecting this category in each case when deciding whether or not to share information. However, the second and the following priority were different in each case. In Case 1, which dealt with suspected child abuse, more than half of PHNs’ (56.4%) second priority was ‘laws and guidelines’, participants responses varied and the third and the following category rankings could not be clearly shown. Therefore, the result means that participants judged the ranking according to the
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Figure 4. The five example cases used in the study. These cases were developed to emphasise elements that are likely to result in ethical dilemmas in information sharing for public health nurses (PHNs).
case’s situation. If family members were unaware of the abuse, consent to share information was not obtainable from the family, or PHNs prioritised by respecting the intentions of the family, the potentially abused child’s health or life could be in jeopardy. However, when PHNs were not sure whether the child was being abused, they often hesitated in making a judgement. When they suspected abuse – although they did not receive the family’s consent – PHNs responded that they decided to prioritise legal guidelines and shared information with the relevant parties. Thus, PHNs prioritised the sharing of information in order to protect the child from further harm. In Cases 2 and 4, ‘protection of health and life’ was the first priority because of the effect on others and the population (Case 2: 64.3%; Case 4: 82.5%); it was difficult to demonstrate the second and the following priority rankings. Participants reported that in this instance, they found it difficult to prioritise either ‘individual’s autonomy/intentions’ or ‘laws and guidelines’ on a case-by-case basis. In Case 3, ‘protection of health and life’ was the first priority (59.3%). The next priorities for PHNs were ‘individuals’ autonomy and intentions’ and ‘family situation’. Participants focused on the fact that family members were sometimes unable to accept delays in their child’s growth and development. In Case 5, ‘protection of health and life’ was the first priority similarly (80.3%). The second was ‘individuals’ autonomy and intentions’ (57.4%), and the third was ‘family situation’ (50.8%). It was possible that there was a little priority rankings in comparison with other cases. Based on these results, the decision-making process for resolving ethical dilemmas in information sharing were systematised (Figure 6).
Phase 3: validity of survey results (group interview) A group interview was conducted with eight PHNs, each of whom had more than 30 years of experience. The interview content yielded the following results regarding the validity of the above findings. First, the
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Figure 5. The 18 items that study participants might consider when solving information-sharing dilemmas, grouped into six categories.
group affirmed that the presented five cases included issues that PHNs are not only likely to encounter in daily practice, but which are likely to result in conflicts and ethical dilemmas in information sharing. Second, the group agreed with the elements of the PHNs’ decisions to share information depending on the five cases. The group also agreed that the items that were considered in solving dilemmas in information sharing showed the characteristic of the five cases. Finally, the group agreed that the highest priority in any decision is whether sharing information will protect clients’ or the community’s health and lives, particularly when urgent action is required.
Discussion Structure of ethical dilemmas in sharing information Ethical dilemmas in information sharing most often occurred when the privacy demands of clients, their families or the surrounding community conflicted with what the PHNs perceived as an urgent health
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Table 2. The ratio of items into consideration when deciding on whether to share information. Case 3: Case 1: Case 2: Case 5: delayed suspected mental older person Case 4: health growth and child problem development tuberculosis living alone abuse
Six categories/18 items Protection of health and life
1 2 3
Individuals’ autonomy/ intentions
4
5
6 7 Family situation
Community characteristics
Laws and guidelines
8 9 10 11 12 13 14 15 16
Workplace policy 17 and partners’ trustworthiness 18
Situation’s urgency Appropriate coping strategies Influence of decision on health of community and other groups Individuals’ ability to make reasonable judgements and cope effectively Individuals’ understanding and recognition of the situation Future goals Individual’s intention to share information Family’s presence Family’s intentions Benefit for the family Population size Community members’ relationships Existence of stigma Related laws and guidelines Cost and economic factors Benefit of the decision to the public Organisational policy of workplace Perceived trustworthiness of the partner with whom the information is shared
96.2% 80.8%
76.9% 76.9%
62.7% 88.2%
64.7% 64.7%
91.5% 89.4%
15.4%
74.4%
19.6%
97.1%
34.0%
84.6%
84.6%
62.7%
82.4%
93.6%
92.3%
71.8%
70.6%
94.1%
91.5%
23.1% 61.5%
53.8% 76.9%
37.3% 76.5%
50.0% 88.2%
80.9% 91.5%
69.2% 80.8% 42.3% 3.8% 57.7%
89.7% 87.2% 59.0% 12.8% 94.9%
60.8% 92.2% 66.7% 5.9% 51.0%
82.4% 79.4% 55.9% 26.5% 58.8%
95.7% 89.4% 68.1% 21.3% 97.9%
38.5% 84.6% 3.8% 3.8%
94.9% 87.2% 15.4% 30.8%
68.6% 74.5% 9.8% 9.8%
82.4% 94.1% 11.8% 47.1%
51.1% 76.6% 21.3% 27.7%
84.6%
76.9%
82.4%
85.3%
85.1%
92.3%
87.2%
88.2%
88.2%
91.5%
situation. This situation is not unique because a research has shown that moral dilemmas can occur in any situation that presents conflicting evidence about whether a certain action is morally right or wrong.21 While PHNs nearly always require consent from clients or their families to share information, one of the primary duties of PHNs is to maintain and promote the health of individuals and the community. If information can be effectively shared among clients, PHNs and/or third-party supports, the client is better supported overall, which allows PHNs to both prevent situations from worsening and maintain and promote the health of both clients and the community. When clients and communities accept their health issues, there is rarely disagreement about sharing client information. However, when they do not accept the health issues they might face, clients may not provide consent for further treatment or care. Although PHNs must respect client autonomy as much as possible, when consent is not given and the situation may be serious, they must reconsider whether they should refrain from sharing information.
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Figure 6. A graphical representation of how public health nurses (PHNs) decide what information to share and with whom.
Oberle and Tenove25 surveyed ethical issues among PHNs in rural and urban Canada and found one notable characteristic of public health nursing to be respect for client autonomy – in other words, giving clients the freedom to choose whether or not to use PHN services. Consequently, PHNs are frequently challenged to find ways to establish and maintain trusting relationships with clients, while knowing that clients can end the relationship at any time. However, this drive to focus on building and maintaining trusting relationships could pose a problem if the nurse felt the need to take action to protect vulnerable people, particularly children. Thus, PHNs are challenged to identify the issues that they need to deal with, while trying not to damage their relationships with those who require support. PHNs can face two possible negative outcomes: fully honouring individuals’ intentions may result in negative health outcomes for the individual or community, while not respecting client autonomy and sharing information with third parties may result in paternalism. The PHNs in this study reported experiencing dilemmas when these opposing values intersected. Aroskar9 notes that such conflicts often arise when individual clients make choices that neither are clearly in their own best interests nor in accord with previously expressed health-related goals and values. Another source of ethical dilemmas in information sharing is the various organisations and persons who collaborate with a PHN. In other words, the activity of the PHN needs many collaborators, including community members who are not professionals unlike the healthcare providers, such as welfare experts or
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administrators. Participants in this study had to consider who would be receiving the information. For example, in the case of potential child abuse or the delayed growth and development of a child, PHNs would require support from a variety of sectors. If family members do not recognise or accept the problem, it is impossible to obtain accurate information from them, which may result in harm to the child. Therefore, PHNs attempt to support families by taking preventative actions and using their own values to help families accept the reality of the situation. In contrast, for professionals employed in welfare, preventive interventions are a new concept, and their primary goal is ensuring the autonomy of the family. Furthermore, welfare organisations often suffer from bureaucratic sectionalism and deal mainly with the documentation surrounding client situations rather than with the clients themselves, which poses a considerable problem for information sharing. Consent is typically confirmed through documents, and exchanging documents among professionals is often time-consuming; thus, it can be difficult for administrators to consult with each other in a timely fashion. Therefore, PHNs are faced with a dilemma when they are either unable to communicate the consent of relevant parties or receive support from these parties as they have not yet received the proper consent. Previous studies have indicated that this is a common phenomenon. Jameton26 found that moral distress can result from ‘the conflict between the nurse’s knowledge of the ethically appropriate action and institutional constraints that prevent or make that action difficult’. In addition, MacIntyre27,28 noted that if client autonomy is overstressed, this greatly undermines the health professional’s freedom to make judgements. In this study, we found that a number of aspects of information sharing undermined PHNs’ professional judgements. They reported the need to provide care within the framework of current laws and guidelines and to respect patient autonomy while also honouring the cultures and systems of their collaborating organisations. Given this tension, it is understandable that they frequently experience ethical dilemmas in information sharing.
Decision-making processes in information sharing Much of the literature pertaining to nursing ethics focuses on hospital-based nursing care for individual clients. However, PHNs have different responsibilities; they must consider how to care for individual clients in addition to how that care will affect the larger community, all while complying with current laws and healthcare systems. This is complicated by the complexity of information sharing. To quickly resolve ethical dilemmas in information sharing, PHNs need to have clear processes to guide them in making decisions. In this study, we clarified some of the PHNs’ decision-making processes related to ethical dilemmas in information sharing. Through eliciting PHNs’ feedback regarding example cases, we found that PHNs’ foremost priority was the ‘protection of health and life’. Depending on the situation, PHNs then considered ‘individuals’ autonomy and intentions’, ‘ family situation’, ‘laws and guidelines’, ‘ workplace policy and trustworthiness of partner’ and ‘community characteristics’. Only after considering these factors did PHNs decide how they would share the information (i.e. with whom and to what extent), always keeping in mind clients’ confidentiality. The PHNs surveyed in this study tended to prioritise protecting the client’s health over respecting their autonomy, especially in potentially life-threatening situations. In such situations, participants seemed to diverge from the more common autonomy-weighted approach; PHNs reported sharing information with related agencies and people, even if the client did not want this, when the PHNs felt it necessary to protect the client. The PHNs in this study felt that it was equally necessary to protect the health of groups and communities as well as the health of individuals. Thus, PHNs must balance client relationship-building with maintaining strong, trusting relationships with community members and related agencies in order to best serve both individual and community health. Racher15 stated that such collaborations among healthcare professionals,
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related organisations, communities and societies is necessary for the further development of moral and ethical theory and practice.
Conclusion To our knowledge, this study was the first to be conducted in Japan to explore PHNs’ ethical decisionmaking processes regarding information sharing. One main limitation of this study was the low response rate for the self-administered questionnaires. The initial response rate was 33%, but this fell to 6% of the initial sample by the final questionnaire round. One reason for this low and decreasing rate is that this style of survey was more time-consuming than standard mail-in questionnaires. This may have resulted in bias towards PHNs who were particularly concerned about ethical issues. Furthermore, the survey administration happened to coincide with an outbreak of a new strain of influenza in Japan in 2009; this may have adversely affected response rates as PHNs were likely busy during that time. However, the response rates for the questionnaires rose comparatively (based on the initial response rate), with response rates of 57.1%, 68.5% and 78.0% for the second, third and final rounds, respectively. Thus, we believe that the survey had good validity, as confirmed by the results of Phase 3. Nevertheless, we recommend that further research on this topic be conducted with another sample. Acknowledgements The authors would like to express their sincere thanks to all the public health nurses who participated in this study. We also wish to thank Professor Geoffrey Hunt, Professorial Research Fellow at St Mary’s University College, London, for his valuable comments during the infancy of this study. Conflict of interest The authors declare that there is no conflict of interest. Funding Part of this work was supported by the Grant-in-Aid for Scientific Research (B) from the Japan Society for the Promotion of Science (grant no. 18390571). References 1. American Public Health Association (APHA). The definition and role of public health nursing: a statement of the APHA public health nursing section. Washington, DC: APHA, 1996. 2. American Public Health Association (APHA). Public health nursing scope and standards of practice. 2nd ed. Washington, DC: American Nurses Publishing, 2013, pp. 9–15. 3. Van Eyk H and Baum F. Learning about interagency collaboration: trialling collaborative projects between hospitals and community health services. Health Soc Care Comm 2002; 10: 262–269. 4. Richardson S and Astana S. Inter-agency information sharing in health and social care services: the role of professional culture. Brit J Soc Work 2006; 36: 657–669. 5. Ministry of Health, Labour, and Welfare. Heisei 22 nen hoken eisei gyosei gyomu hokoku syugyo basyo ni mita syugyo hokensi suu [Report of public health administration and services], http://www.mhlw.go.jp/toukei/saikin/ hw/eisei/12/dl/h24_hojyokan.pdf (accessed 25 June 2014). 6. Tatara K. Nihon koshu eisei zasshi [Philosophical basis of modern public health]. Jpn J Public Health 2009; 56(1): 3–17. 7. Rowlands S. Sharing personal information: how to decide whether to or not. J Fam Plan Reprod H 2010; 36(3): 161–165.
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8. Baum NM, Gollust SE, Goold SD, et al. Ethical issues in public health practice in Michigan. Am J Public Health 2009; 99: 369–374. 9. Aroskar MA. Community health nurses: their most significant ethical decision-making problems. Nurs Clin N Am 1989; 24: 967–975. 10. Fry S. Ethics in community health nursing practice. In: Stanhope M and Lancaster J (eds) Community health nursing: process and practice for promoting health. 3rd ed. St Louis, MO: Mosby, 1992, pp. 69–89. 11. Duncan SM. Ethical challenges in community health nursing. J Adv Nurs 1992; 17: 1035–1041. 12. Asahara K, Kobayashi M, Ono W, et al. Ethical issues in practice: a survey of public health nurses in Japan. Public Health Nurs 2012; 29: 266–275. 13. Nuffield Council on Bioethics. Public health: ethical issue. London: Cambridge Publishers, 2007, pp. 41–42. 14. Kodama S. Kourisyugi nyumon-hajimete no rinrigaku chikuma shinsho [An introduction to utilitarianism – ethics for beginners]. Tokyo, Japan: Chikuma Shobo Publisher, 2012. 15. Racher FE. The evolution of ethics for community practice. J Community Health Nurs 2007; 24: 65–76. 16. Fry ST and Johnstone MJ. Ethics in nursing practice: a guide to ethical decision making (trans. N Katada and A Yamamoto). 3rd ed. Tokyo, Japan: Japanese Nursing Association Publishing Company, 2010 (in Japanese). 17. Thompson JE and Thompson HO. Bioethical decision-making for nurses (trans. IM Kishi and H Takeuchi). Tokyo, Japan: Japanese Nursing Association Publishing Company, 2004 (in Japanese). 18. Husted GL and Hustead JH. Ethical decision making in nursing (trans. R Fujimura and M Tarui). 2nd ed. Tokyo, Japan: Igaku-Shoin, 2009 (in Japanese). 19. Greipp ME. Greipp’s model of ethical decision making. J Adv Nurs 1992; 17: 734–738. 20. Lanik G and Webb A. Ethical decision making for community health nurses. J Community Health Nurs 1989; 6: 95–102. 21. Davis AJ, Tschudin V and Tew L. Essentials of teaching and learning in nursing ethics: perspective and methods. London: Churchill Livingstone, 2006, pp. 55–260. 22. Fink A, Kosecoff J, Chassin M, et al. Consensus methods: characteristics and guidelines for use. Am J Public Health 1984; 74: 979–983. 23. Hasson F, Keeney S and McKenna H. Research guideline for the Delphi survey technique. J Adv Nurs 2000; 32: 1008–1015. 24. Linestone HA and Turoff M. The Delphi method: technique and applications. London: Addison-Wesley Publishing Company, 1975. 25. Oberle K and Tenove S. Ethical issues in public health nursing. Nurs Ethics 2000; 7: 425–438. 26. Jameton A. Nursing practice: the ethical issues. Englewood Cliffs, NJ: Prentice Hall, 1984. 27. MacIntyre A. How virtues become vices: values, medicine and social context. In: Engelhardt HHT and Spicker S (eds) Evaluation and exploration in the biomedical sciences. Dordrecht: D. Reidel Publishing Company, 1975, pp. 97–111. 28. MacIntyre A. After virtue. London: Duckworth, 1985.
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Information-sharing ethical dilemmas and decision-making for public health nurses in Japan
Nursing Ethics 2015, Vol. 22(5) 533–547 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014549879 nej.sagepub.com
Chisato Suzuki and Katsumasa Ota Nagoya University Graduate School of Medicine, Japan
Masami Matsuda Tokyo Kasei-Gakuin University, Japan
Abstract Background: Information sharing is one of the most important means of public health nurses collaborating with other healthcare professionals and community members. There are complicated ethical issues in the process. Research objectives: To describe the ethical dilemmas associated with client information sharing that Japanese public health nurses experience in daily practice and to clarify their decision-making process to resolve these dilemmas. Research design: Data were collected using a three-phase consensus method consisting of semistructured interviews, self-administered questionnaires and a group interview. Participants and research context: We surveyed administrative public health nurses in Shizuoka Prefecture, Japan. The semi-structured interviews were carried out with 12 administrative public health nurses, and the self-administered questionnaires were sent to all 899 administrative public health nurses. The group interview was carried out with eight administrative public health nurses. Ethical considerations: Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University, Japan (8-158, 9-130). Findings: Information-sharing ethical dilemmas occurred most often when clients’ decisions did not coincide with the nurses’ own professional assessments, particularly when they faced clinical issues that were inherently ambiguous. In their decision-making processes, nurses prioritised ‘protection of health and life’. Discussion: These findings suggest that, above all, they sought to address urgent risks to clients’ lives while upholding the principle of client autonomy as much as possible. In such cases, the nurses made decisions regarding whether to share information about the client depending on the individual situation. Conclusion: Public health nurses should protect the client’s health while taking into consideration their relationship with the client. Keywords Decision-making process, ethical dilemma, information sharing, Japan, public health nurse
Corresponding author: Chisato Suzuki, School of Health Sciences, Nagoya University Graduate School of Medicine, 1-1-20 Daiko-minami, Higashi-ku, Nagoya 461-8673, Japan. Email: [email protected]
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Introduction Public health nursing aims to promote and protect the health of populations using knowledge obtained from nursing, social and public health sciences.1 Public health nurses (PHNs), in their capacity as both local government employees and nursing staff at public health centres, must work with limited resources to assist individuals in their communities’ healthy lives. To accomplish this, they must collaborate with public health specialists and nurses as well as the wider population. ‘Collaboration’ is one of the standards of public health nursing practice, requiring PHNs to collaborate with various disciplines and organisations.2 Information sharing is one of the important means for promoting such collaboration. PHNs must carefully handle personal information, sharing pertinent information with concerned parties as quickly and precisely as possible to ensure its effective use. However, complicated ethical issues are often involved in the information-sharing process. Thus, PHNs must be able to make appropriate ethical decisions regarding information sharing, balancing privacy protection with the effective use of information. In this study, we examined how PHNs make decision regarding the client information when confronted with such ethical dilemmas.
Information-sharing behaviour among healthcare workers Researchers and clinicians have long recognised the importance of information sharing when collaborating with other healthcare organisations and professionals.3 In the United Kingdom, despite policies that are continually improved and legislative measures that encourage inter-agency collaboration, researchers have found that failure to share information across public service organisations can have tragic consequences. However, even as steps are made to share information more readily, great care is taken to ensure that this information is not inappropriately shared.4 The extent to which information can be shared (including the types of information and with whom) is a core ethical issue in healthcare services. For example, emphasising the advantages of information sharing could lead to paternalism, while emphasising its disadvantages could prevent effective information use. Furthermore, Richardson and Astana4 stated that professional cultures influence information-sharing behaviours. A professional culture shaped by the patient-focused medical model is likely to place the need to protect individual patient confidentiality above the need to communicate important information. In contrast, in a professional culture shaped by the social work model, which is concerned not only with the individual client but also with their families, communities and wider society, staffs are receptive to the need for information sharing to be prioritised over confidentiality.4
Nursing practices and information-sharing behaviour by Japanese PHNs Following the Public Health Nurses, Midwives, and Nurses Act (1941), PHNs in Japan receive different licences to registered nurses and midwives, with PHN licensure requiring one or more years of additional education. As of 2013, there were approximately 47,000 PHNs in Japan, with approximately 70% working as civil servants in administrative organisations, such as community-based health centres.5 Historically, the public health priority has been assigned generally to preventing the spread of infectious diseases, which were much more common in previous generations.6 Client information was shared to protect both individual and population health, and such sharing was supported by both professional morality and Japanese law. Information confidentiality was decided on a case-by-case basis, and care providers and clients recognised their common goal as partners working together to improve clients’ health. As such, they often built relationships involving high levels of trust, allowing client information to be shared and used effectively.
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However, recent societal changes have influenced the relationships between clients and PHNs, making it much more difficult to form such close relationships. As society has become increasingly reliant upon computers, information-sharing methods have become more complicated and formal.7 Clients are also increasingly more conscious of their right to control their personal information in the wake of laws, such as those enacted in Japan in 2005 to regulate the protection of personal information. Thus, information sharing based on trusting, personal relationships among community members has decreased; health professionals today are much more conscious of the need to obtain their clients’ consent. It became harder for PHNs to collaborate with other professionals, groups and agencies through effective information sharing when obtaining consent for the information sharing was difficult.
Nursing ethics as the basis for PHN activities Many studies regarding nursing ethics have focused on client-centred care. In public health nursing, professionals consider care from two perspectives: care for individual clients (i.e. an individual perspective) and care for the community and the accompanying social context (i.e. a population perspective). Ethical decisions in public health nursing often derive from conflicts between what is beneficial for individuals and what is beneficial for communities. Such conflicts arise less frequently in hospitals or other nursing facilities because of client-centred care.8–11 Asahara et al.12 suggested a number of origins for these ethical issues in public health nursing, including conflicting thoughts regarding treatment or care between clients and their families, conflicting views about services to be provided between PHNs and administrators and conflicting views regarding caregiving between PHNs and other professionals. In a society in which individual freedom is respected, forcible interventions to improve health at either the individual or community level are generally discouraged. Policy-makers must instead maintain a delicate balance between respecting individual freedom and protecting health. To this end, researchers in the United Kingdom have created an ‘intervention ladder’ to be used in public health policy-making. This tool charts the extent to which an intervention limits personal freedom while providing more effective public healthcare, therefore providing an effective way to examine different public health policies.13 Kodama14 suggests a policy of ‘libertarian paternalism’, whereby environments are manipulated to encourage people to choose healthier lifestyles on their own. Similarly, Racher15 believes that community health can be improved by encouraging concerned parties to form relationships, engaging in dialogue through community participation and empowerment and strengthening the morale of the entire community. Both Kodama and Racher stress the need for interventions that work with both individuals and whole communities. When PHNs engage in such interventions, their ethical decision-making differs from that of nurses working in hospitals because PHNs are required to think about not only a client but also his or her family and community.2 Fry and Johnstone16 and Thompson and Thompson17 have conducted a number of studies regarding decision-making models that nurses should follow when making ethical decisions, and their findings have been used in Japan as a guide for ethical decision-making in nursing practice. However, many of these models are based on an autonomy-weighted approach, which is principle-based position involving traditional Western principle-based ethics.18–20 No report has yet investigated a practical model for effective decision-making in public health nursing that takes into account both the individual and population. In light of this information regarding the lack of such practical models, the present study has an immediate practical application. Difficulties in making such decisions can cause moral distress, which has been significantly correlated with burnout and frequently cited as a reason why PHNs leave their jobs.21 In some situations, PHNs can easily make decisions according to their own values. However, as situations become more complex, it becomes more difficult for PHNs to make conclusive decisions, increasing the likelihood that they will need to act counter to their own values when choosing a course of action.21 It is our hope that
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the findings of this study will provide suggestions to PHNs to help them clarify their priorities when making decisions in complex situations.
Research objective The purpose of this study was to better understand the ethical dilemmas associated with information sharing commonly experienced by PHNs as well as the decision-making processes they use to cope with such dilemmas. Specifically, we aimed (a) to construct a conceptual framework for the ethical dilemmas in information sharing experienced by PHNs, (b) to clarify the structure of these ethical dilemmas in information sharing and (c) to clarify PHNs’ decision-making processes in coping with these dilemmas. For the purpose of this study, the term ‘information’ means personal information in the health and social context that comes into PHN’s knowledge during the course of work.3 Furthermore, the term ‘obtaining consent’ means individual agrees that PHNs share his or her information to collaborate with various disciplines and organisations.
Methods Research design To construct a conceptual framework and identify the ethical decision-making processes of as many PHNs as possible, we used a consensus method comprising three assessments: semi-structured interviews, a fourround mail survey and a group interview.
Semi-structured interviews (Phase 1) In 2009, we conducted semi-structured interviews with 12 PHNs who were members of public health units under the administration of various levels of local government, including prefectures, cities and towns. We consulted professional association for PHNs in Shizuoka, Japan, to commission this study. Their leader discussed this study with the chief PHNs within the various levels of the administration unit and with the supervising and controlling PHNs. The leader referred us to the three workplaces that agreed to participate in this study. After initial communication via telephone, we visited the workplaces, and the chiefs recommended a number of PHNs. The interviews were undertaken at participants’ workplaces. All participants provided written informed consent to be interviewed and audio-recorded. In the interviews, participants were asked about their experiences with ethical dilemmas in information sharing and the decisions they made to resolve these dilemmas. Participants responded to the following questions: (a) ‘what kind of ethical issues relating to information sharing do you experience during daily work?’ (b) ‘what is the essence of these ethical issues?’ (c) ‘how do you typically resolve these issues?’ and (d) ‘what principles or value systems do you typically apply to solve those ethical issues?’ Interviews lasted from 30 to 45 min. After each interview, audiotapes were transcribed verbatim; all identifying personal information was removed from the transcripts. Data were analysed using thematic analysis. First, each transcript was read and coded, and then the meaning of each code was identified and labelled. The newly labelled codes were sorted and combined and then re-sorted according to emerging patterns. Finally, each pattern of labels was categorised into three themes with each theme. During this analysis process, each interview was re-examined by one or two nursing researchers to ensure that all labels were included in the identified themes. Coding disagreements were resolved by referring to the relevant literature.
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Figure 1. Outline of the mail survey of self-administered questionnaires (Phase 2).
Mail survey using self-administered questionnaires (Phase 2) In order to clarify PHNs’ coping strategies and decision-making processes in handling ethical dilemmas regarding information sharing, we mailed self-administered questionnaires to another group of PHNs. These questionnaires used the four-round modified Delphi technique, perhaps the most well-known consensus method (outlined below). The questionnaire was based on a literature review and the results of the semistructured interviews (see Figure 1). The study period was mid-June 2009 to early January 2010. First, we sent recruitment letters to all PHNs (N ¼ 899) in the Shizuoka Prefecture, Japan, which is representative of an average prefecture and where the researcher had a relationship to the PHNs. These letters explained the aims, design and anticipated study duration. Potential participants were told that the study would comprise four rounds of questionnaires and that they had the right to withdraw from participation at any time without penalty. The original Delphi method uses a panel (referred to as ‘experts’) to reach consensus regarding specific and often complex problems or issues. Experts administered a series of two or more questionnaires (‘rounds’) by post. Generally, each round reports the consensus rate reached in the previous round, giving participants the opportunity to change their responses based on prior knowledge.22–24 In this study, we modified the original Delphi method to elicit opinions regarding ethical decisionmaking processes in the situation involving ethical dilemmas in information sharing. Each round employed the following methods to encourage consensus among the participants: (a) presentation of the concept, (b) summary of opinions and (c) reconstruction. The first-round questionnaire was designed to gather a wide range of data regarding ethical dilemmas in information sharing that PHNs encountered in their practice. This included clarifying the health issues for which PHNs were most likely to experience these dilemmas during routine work, extracting the elements
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that led to them and identifying how they resolved their dilemmas. From the extracted health-related situations, we created five case examples (hereafter referred to as ‘the five cases’), which we used in the secondround questionnaire to assess responses to common dilemmas. The items considered in solving the dilemma were organised into 18 items. In this process, we referred to the principle-based ethics so that item deflection did not occur. In the second-round questionnaire, we gathered the opinions for the five cases shown in the first round. We referred to the four-box approach demonstrated in Clinical Ethics by Jonsen based on casuistry as a method to analyse the situation that these five cases demonstrated. This shows the clinical concrete action guidance as being complementary to the principle-based approach, and guides a reasonable and concrete solution for practicing professionals. We showed the five cases and asked the following: whether the ethical dilemmas in information sharing occurred, the reason, potential solutions and the participants’ rankings of importance when making decisions regarding information sharing. However, because it would be difficult for participants to rank 18 items, we classified them into six categories, which participants then ranked. We labelled categories selected by more than 50% of the participants as ‘to be considered’, while categories under 50% were arranged in parallel because of the possibility of another ranking. In the third-round questionnaire, respondents were asked to evaluate the 18 items using a 4-point Likerttype scale (1 ¼ not appropriate to 4 ¼ very appropriate) regarding the appropriateness of each item for a given case, and how appropriate the ranking of those items were. In the final-round questionnaire, we confirmed the above findings for the 18 items and the order of the six categories.
Group interview (Phase 3) The final phase consisted of a group interview of eight veteran PHNs who had worked for public health centres in a city in Japan for more than 30 years. They are the chief PHNs with role of supervising and managing the PHNs. The interview took place in early January 2010 at their choice of workplace and lasted for approximately 60 min. All participants gave their written informed consent to be interviewed and audiorecorded. Participants were asked to confirm the validity of the 18 items produced during the previous two rounds as well as the validity of the ranking assigned to the six categories. After the interview, the audiotape was transcribed verbatim and identifying personal information was removed.
Ethical considerations Ethical approval was granted by the ethics committee of the School of Health Sciences, Nagoya University (8-158, 9-130).
Findings Phase 1: conceptual framework of ethical dilemmas (semi-structured interviews) We assumed that ethical dilemmas would arise from conflicts within participants’ value systems when making decisions about whether to share client information and that, in these instances, participants would use their expert judgement to arrive at a solution. We found that PHNs often experienced ethical dilemmas in information sharing in instances when there are conflicts between respecting client autonomy and these three concepts: beneficence, administrative regulations and the rights of the population (Figure 2).
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Figure 2. Conceptual framework of public health nurses’ (PHNs) ethical dilemmas and solutions.
While participants placed a high value on respecting the will of clients and their families, if nurses felt that a particular action might endanger the client, they tended to take preventive action, even if such action conflicted with the client’s autonomy. Dilemmas tended to be even more severe when not sharing information was perceived as a threat to the client’s life.
Phase 2: structure of the ethical decision-making process (four-round mail survey) Of the 899 PHNs initially approached for involvement in the four-round mail survey, 284 (31.6%) responded to the first-round questionnaire. There was considerable attrition in each round: the sample was reduced to 80 in the second round, 50 in the third round and 39 in the fourth round. Table 1 presents information regarding age, employment type and years of experience for participants in each questionnaire round.
Elements of ethical dilemmas (Round 1) Of the PHNs who responded, approximately 77.1% (n ¼ 284) had experienced conflicts in information sharing at some point in their daily practice. The issues most likely to cause conflicts included ‘suspected child abuse’ (77.1%), ‘abuse’ (75.4%), ‘mental health problems’ (68.0%) and ‘delay in a child’s growth and development’ (66.5%). Conflicts frequently arose predominantly in these three situations (Figure 3). Based on these findings, we constructed five cases that reflected common health-related issues (Figure 4). Most of the cases involved conflict between autonomy and beneficence, although in Cases 2 (mental health problem) and 4 (tuberculosis), the conflicts arose between autonomy and the right of the population. When PHNs faced conflicts about sharing information, participants replied that they consider whether sharing information would protect the client’s health and life, and whether sharing information would respect the client’s autonomy. These responses were classified into 18 items and grouped into six categories (Figure 5).
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Table 1. Participants’ employment type, age and years of experience. Round 1 Local government type Prefecture Municipality Other Age (years) 20–29 30–39 40–49 50þ PHN work experience M (SD) years and range
Round 2
Round 3
Round 4
29 216 39
10.2 76.1 13.7
10 61 9
12.5 76.3 11.3
8 32 10
16.0 64.0 20.0
9 23 7
23.1 59.0 17.9
66 99 79 40
23.2 34.9 27.8 14.1
18 34 20 8
22.5 42.5 25.0 10.0
10 23 13 4
20.0 46.0 26.0 8.0
6 18 12 3
15.4 46.2 30.8 7.7
13.6 (9.5)
1–37
12.5 (9.2)
1–37
12.4 (9.0)
1–37
13.3 (8.5)
1–29
PHN: public health nurse; SD: standard deviation.
Figure 3. The relationships between the situations and the five cases. PHN: public health nurse.
Solving ethical dilemmas (Round 2) In each case, most PHNs stated that they would take the following items into consideration when deciding on whether to share information: ‘perceived trustworthiness of the partner with whom the information is being shared’, ‘organisational policy of workplace’, ‘related laws and guidelines’ and ‘family’s intentions’. Little consideration was given to items such as ‘population size’ and ‘cost and economic factors’; notable exceptions were in Case 2 (mental health problems) and Case 4 (tuberculosis), for which the ‘influence of the decision on the health of the community and other groups’ and ‘existence of stigma’ were also taken into consideration (Table 2). For all cases, PHNs prioritised the ‘protection of health and life’, with over 59.3% of PHNs selecting this category in each case when deciding whether or not to share information. However, the second and the following priority were different in each case. In Case 1, which dealt with suspected child abuse, more than half of PHNs’ (56.4%) second priority was ‘laws and guidelines’, participants responses varied and the third and the following category rankings could not be clearly shown. Therefore, the result means that participants judged the ranking according to the
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Figure 4. The five example cases used in the study. These cases were developed to emphasise elements that are likely to result in ethical dilemmas in information sharing for public health nurses (PHNs).
case’s situation. If family members were unaware of the abuse, consent to share information was not obtainable from the family, or PHNs prioritised by respecting the intentions of the family, the potentially abused child’s health or life could be in jeopardy. However, when PHNs were not sure whether the child was being abused, they often hesitated in making a judgement. When they suspected abuse – although they did not receive the family’s consent – PHNs responded that they decided to prioritise legal guidelines and shared information with the relevant parties. Thus, PHNs prioritised the sharing of information in order to protect the child from further harm. In Cases 2 and 4, ‘protection of health and life’ was the first priority because of the effect on others and the population (Case 2: 64.3%; Case 4: 82.5%); it was difficult to demonstrate the second and the following priority rankings. Participants reported that in this instance, they found it difficult to prioritise either ‘individual’s autonomy/intentions’ or ‘laws and guidelines’ on a case-by-case basis. In Case 3, ‘protection of health and life’ was the first priority (59.3%). The next priorities for PHNs were ‘individuals’ autonomy and intentions’ and ‘family situation’. Participants focused on the fact that family members were sometimes unable to accept delays in their child’s growth and development. In Case 5, ‘protection of health and life’ was the first priority similarly (80.3%). The second was ‘individuals’ autonomy and intentions’ (57.4%), and the third was ‘family situation’ (50.8%). It was possible that there was a little priority rankings in comparison with other cases. Based on these results, the decision-making process for resolving ethical dilemmas in information sharing were systematised (Figure 6).
Phase 3: validity of survey results (group interview) A group interview was conducted with eight PHNs, each of whom had more than 30 years of experience. The interview content yielded the following results regarding the validity of the above findings. First, the
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Figure 5. The 18 items that study participants might consider when solving information-sharing dilemmas, grouped into six categories.
group affirmed that the presented five cases included issues that PHNs are not only likely to encounter in daily practice, but which are likely to result in conflicts and ethical dilemmas in information sharing. Second, the group agreed with the elements of the PHNs’ decisions to share information depending on the five cases. The group also agreed that the items that were considered in solving dilemmas in information sharing showed the characteristic of the five cases. Finally, the group agreed that the highest priority in any decision is whether sharing information will protect clients’ or the community’s health and lives, particularly when urgent action is required.
Discussion Structure of ethical dilemmas in sharing information Ethical dilemmas in information sharing most often occurred when the privacy demands of clients, their families or the surrounding community conflicted with what the PHNs perceived as an urgent health
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Table 2. The ratio of items into consideration when deciding on whether to share information. Case 3: Case 1: Case 2: Case 5: delayed suspected mental older person Case 4: health growth and child problem development tuberculosis living alone abuse
Six categories/18 items Protection of health and life
1 2 3
Individuals’ autonomy/ intentions
4
5
6 7 Family situation
Community characteristics
Laws and guidelines
8 9 10 11 12 13 14 15 16
Workplace policy 17 and partners’ trustworthiness 18
Situation’s urgency Appropriate coping strategies Influence of decision on health of community and other groups Individuals’ ability to make reasonable judgements and cope effectively Individuals’ understanding and recognition of the situation Future goals Individual’s intention to share information Family’s presence Family’s intentions Benefit for the family Population size Community members’ relationships Existence of stigma Related laws and guidelines Cost and economic factors Benefit of the decision to the public Organisational policy of workplace Perceived trustworthiness of the partner with whom the information is shared
96.2% 80.8%
76.9% 76.9%
62.7% 88.2%
64.7% 64.7%
91.5% 89.4%
15.4%
74.4%
19.6%
97.1%
34.0%
84.6%
84.6%
62.7%
82.4%
93.6%
92.3%
71.8%
70.6%
94.1%
91.5%
23.1% 61.5%
53.8% 76.9%
37.3% 76.5%
50.0% 88.2%
80.9% 91.5%
69.2% 80.8% 42.3% 3.8% 57.7%
89.7% 87.2% 59.0% 12.8% 94.9%
60.8% 92.2% 66.7% 5.9% 51.0%
82.4% 79.4% 55.9% 26.5% 58.8%
95.7% 89.4% 68.1% 21.3% 97.9%
38.5% 84.6% 3.8% 3.8%
94.9% 87.2% 15.4% 30.8%
68.6% 74.5% 9.8% 9.8%
82.4% 94.1% 11.8% 47.1%
51.1% 76.6% 21.3% 27.7%
84.6%
76.9%
82.4%
85.3%
85.1%
92.3%
87.2%
88.2%
88.2%
91.5%
situation. This situation is not unique because a research has shown that moral dilemmas can occur in any situation that presents conflicting evidence about whether a certain action is morally right or wrong.21 While PHNs nearly always require consent from clients or their families to share information, one of the primary duties of PHNs is to maintain and promote the health of individuals and the community. If information can be effectively shared among clients, PHNs and/or third-party supports, the client is better supported overall, which allows PHNs to both prevent situations from worsening and maintain and promote the health of both clients and the community. When clients and communities accept their health issues, there is rarely disagreement about sharing client information. However, when they do not accept the health issues they might face, clients may not provide consent for further treatment or care. Although PHNs must respect client autonomy as much as possible, when consent is not given and the situation may be serious, they must reconsider whether they should refrain from sharing information.
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Figure 6. A graphical representation of how public health nurses (PHNs) decide what information to share and with whom.
Oberle and Tenove25 surveyed ethical issues among PHNs in rural and urban Canada and found one notable characteristic of public health nursing to be respect for client autonomy – in other words, giving clients the freedom to choose whether or not to use PHN services. Consequently, PHNs are frequently challenged to find ways to establish and maintain trusting relationships with clients, while knowing that clients can end the relationship at any time. However, this drive to focus on building and maintaining trusting relationships could pose a problem if the nurse felt the need to take action to protect vulnerable people, particularly children. Thus, PHNs are challenged to identify the issues that they need to deal with, while trying not to damage their relationships with those who require support. PHNs can face two possible negative outcomes: fully honouring individuals’ intentions may result in negative health outcomes for the individual or community, while not respecting client autonomy and sharing information with third parties may result in paternalism. The PHNs in this study reported experiencing dilemmas when these opposing values intersected. Aroskar9 notes that such conflicts often arise when individual clients make choices that neither are clearly in their own best interests nor in accord with previously expressed health-related goals and values. Another source of ethical dilemmas in information sharing is the various organisations and persons who collaborate with a PHN. In other words, the activity of the PHN needs many collaborators, including community members who are not professionals unlike the healthcare providers, such as welfare experts or
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administrators. Participants in this study had to consider who would be receiving the information. For example, in the case of potential child abuse or the delayed growth and development of a child, PHNs would require support from a variety of sectors. If family members do not recognise or accept the problem, it is impossible to obtain accurate information from them, which may result in harm to the child. Therefore, PHNs attempt to support families by taking preventative actions and using their own values to help families accept the reality of the situation. In contrast, for professionals employed in welfare, preventive interventions are a new concept, and their primary goal is ensuring the autonomy of the family. Furthermore, welfare organisations often suffer from bureaucratic sectionalism and deal mainly with the documentation surrounding client situations rather than with the clients themselves, which poses a considerable problem for information sharing. Consent is typically confirmed through documents, and exchanging documents among professionals is often time-consuming; thus, it can be difficult for administrators to consult with each other in a timely fashion. Therefore, PHNs are faced with a dilemma when they are either unable to communicate the consent of relevant parties or receive support from these parties as they have not yet received the proper consent. Previous studies have indicated that this is a common phenomenon. Jameton26 found that moral distress can result from ‘the conflict between the nurse’s knowledge of the ethically appropriate action and institutional constraints that prevent or make that action difficult’. In addition, MacIntyre27,28 noted that if client autonomy is overstressed, this greatly undermines the health professional’s freedom to make judgements. In this study, we found that a number of aspects of information sharing undermined PHNs’ professional judgements. They reported the need to provide care within the framework of current laws and guidelines and to respect patient autonomy while also honouring the cultures and systems of their collaborating organisations. Given this tension, it is understandable that they frequently experience ethical dilemmas in information sharing.
Decision-making processes in information sharing Much of the literature pertaining to nursing ethics focuses on hospital-based nursing care for individual clients. However, PHNs have different responsibilities; they must consider how to care for individual clients in addition to how that care will affect the larger community, all while complying with current laws and healthcare systems. This is complicated by the complexity of information sharing. To quickly resolve ethical dilemmas in information sharing, PHNs need to have clear processes to guide them in making decisions. In this study, we clarified some of the PHNs’ decision-making processes related to ethical dilemmas in information sharing. Through eliciting PHNs’ feedback regarding example cases, we found that PHNs’ foremost priority was the ‘protection of health and life’. Depending on the situation, PHNs then considered ‘individuals’ autonomy and intentions’, ‘ family situation’, ‘laws and guidelines’, ‘ workplace policy and trustworthiness of partner’ and ‘community characteristics’. Only after considering these factors did PHNs decide how they would share the information (i.e. with whom and to what extent), always keeping in mind clients’ confidentiality. The PHNs surveyed in this study tended to prioritise protecting the client’s health over respecting their autonomy, especially in potentially life-threatening situations. In such situations, participants seemed to diverge from the more common autonomy-weighted approach; PHNs reported sharing information with related agencies and people, even if the client did not want this, when the PHNs felt it necessary to protect the client. The PHNs in this study felt that it was equally necessary to protect the health of groups and communities as well as the health of individuals. Thus, PHNs must balance client relationship-building with maintaining strong, trusting relationships with community members and related agencies in order to best serve both individual and community health. Racher15 stated that such collaborations among healthcare professionals,
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related organisations, communities and societies is necessary for the further development of moral and ethical theory and practice.
Conclusion To our knowledge, this study was the first to be conducted in Japan to explore PHNs’ ethical decisionmaking processes regarding information sharing. One main limitation of this study was the low response rate for the self-administered questionnaires. The initial response rate was 33%, but this fell to 6% of the initial sample by the final questionnaire round. One reason for this low and decreasing rate is that this style of survey was more time-consuming than standard mail-in questionnaires. This may have resulted in bias towards PHNs who were particularly concerned about ethical issues. Furthermore, the survey administration happened to coincide with an outbreak of a new strain of influenza in Japan in 2009; this may have adversely affected response rates as PHNs were likely busy during that time. However, the response rates for the questionnaires rose comparatively (based on the initial response rate), with response rates of 57.1%, 68.5% and 78.0% for the second, third and final rounds, respectively. Thus, we believe that the survey had good validity, as confirmed by the results of Phase 3. Nevertheless, we recommend that further research on this topic be conducted with another sample. Acknowledgements The authors would like to express their sincere thanks to all the public health nurses who participated in this study. We also wish to thank Professor Geoffrey Hunt, Professorial Research Fellow at St Mary’s University College, London, for his valuable comments during the infancy of this study. Conflict of interest The authors declare that there is no conflict of interest. Funding Part of this work was supported by the Grant-in-Aid for Scientific Research (B) from the Japan Society for the Promotion of Science (grant no. 18390571). References 1. American Public Health Association (APHA). The definition and role of public health nursing: a statement of the APHA public health nursing section. Washington, DC: APHA, 1996. 2. American Public Health Association (APHA). Public health nursing scope and standards of practice. 2nd ed. Washington, DC: American Nurses Publishing, 2013, pp. 9–15. 3. Van Eyk H and Baum F. Learning about interagency collaboration: trialling collaborative projects between hospitals and community health services. Health Soc Care Comm 2002; 10: 262–269. 4. Richardson S and Astana S. Inter-agency information sharing in health and social care services: the role of professional culture. Brit J Soc Work 2006; 36: 657–669. 5. Ministry of Health, Labour, and Welfare. Heisei 22 nen hoken eisei gyosei gyomu hokoku syugyo basyo ni mita syugyo hokensi suu [Report of public health administration and services], http://www.mhlw.go.jp/toukei/saikin/ hw/eisei/12/dl/h24_hojyokan.pdf (accessed 25 June 2014). 6. Tatara K. Nihon koshu eisei zasshi [Philosophical basis of modern public health]. Jpn J Public Health 2009; 56(1): 3–17. 7. Rowlands S. Sharing personal information: how to decide whether to or not. J Fam Plan Reprod H 2010; 36(3): 161–165.
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