Reflections on the ethical dilemmas involved in promoting self-management (2024)

Abstract

Due to their understanding of self-management, healthcare team members responsible for depressed older persons can experience an ethical dilemma. Each team member contributes important knowledge and experience pertaining to the management of depression, which should be reflected in the management plan. The aim of this study was to explore healthcare team members’ reflections on the ethical dilemmas involved in promoting self-management among depressed older persons. A qualitative design was used and data were collected by means of focus group interviews. The results revealed one main theme: ‘Lack of trust in the community health care system’s commitment to bringing about effectiveness and change, based on three themes; ‘Struggling to ensure the reliable transfer of information about depressed older persons to professionals and family members’, ‘Balancing autonomy, care and dignity’ and ‘Differences in the understanding of responsibility’. Lack of engagement on the part of and trust between the various professional categories who work in the community are extremely counterproductive and have serious implications for patient dignity as well as safety. In conclusion, ethical dilemmas occur when staff members are unable to act in accordance with their professional ethical stance and deliver an appropriate standard of care.

Keywords: Depression, ethical dilemmas, focus group interviews, healthcare team members, self-management

Introduction

Depression is a socially and physically disabling condition associated with poor self-care, adverse medical outcomes, increased mortality and risk of suicide.¹ It is an important cause of disability and was the fourth leading contributor to the global burden of disease in 2000.² The rate of depression has increased markedly over the past decade.³ Patten et al.⁴ estimated the rate of depression in a community sample to be nearly twice as high (19.7%) as the lifetime prevalence reported in cross-sectional studies during the same period.

The coordination reform in Norway included several initiatives aimed at making the transition from specialist to community healthcare more effective.⁵ It was found that the patients’ need for coordinated services was not sufficiently met. Thus, reorganisation is necessary to provide high-quality care. Interdisciplinary work is characterised by each discipline within the team working towards discipline-related goals.⁶ According to Choi and Pak,⁶ an interdisciplinary approach synthesises and harmonises links between disciplines, thus ensuring a coordinated and coherent whole. In view of the influence of depression on motivation, the interdisciplinary team aims to help older persons manage everyday life more effectively. Wiles and Robinson⁷ provided a broad definition of teamwork within primary care, without specifically referring to interdisciplinary aspects: Teamwork involves a group of people from primary care practice with common health goals and objectives. A vital element is that the team members share common values and beliefs in relation to the teamwork as well as actually being supported and aware of this fact.

An ethical dilemma can be experienced by the healthcare team members responsible for older depressed persons due to their understanding of self-management. Ability to manage one’s own life has been outlined in self-management literature and research.^8,9 Self-management has also been described as the training, skill acquisition and interventions through which depressed persons take care of themselves and manage their life and illness.¹⁰ However, it requires partnership and shared decision-making.¹¹ Redman¹² holds that self-management leads to an unreasonable shifting of responsibility to the depressed older person. Each member of the team contributes important knowledge and experience pertaining to the management of depression, which should be documented in the management plan.¹² It is essential to develop an ethical structure as well as goals and expectations for these complementary roles.¹² Wagner et al.¹¹ described such complementary roles in the chronic care model (CCM), which represents a shift away from the traditional medical model. Macdonald et al.¹³ stated that problems arise because the working methods identified in their study were most probably inadequate to support self-management. Koch et al.¹⁴ concluded that healthcare professionals need a new understanding of self-management that includes respect for the expertise that a person brings to the management of her or his condition. Sporrong et al.¹⁵ suggested that one way of supporting professionals to handle ethical dilemmas was education and training and added that organisational factors such as management involvement were crucial. When exploring self-management of chronic disease, Redman¹⁶ identified ethical issues as

insufficient patient/family access to preparation that will optimize their competence to self-management without harm to themselves, lack of acknowledgement that an ethos of patient empowerment can mask the transfer of responsibility beyond patient/family competency to handle that responsibility, prevailing assumptions that preparation for self-management cannot result in harm and that its main purpose is to deliver physician instructions, and lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning self-management. (p. 243)

Ethical dilemmas can be experienced by most professionals in an organisation. In healthcare, ethical dilemmas are often addressed by means of the principles of autonomy, non-maleficence, beneficence and justice.¹⁷ According to Sporrong,¹⁵ ethical dilemmas are concerned ‘not only with making the right decision in difficult situations but also with justifying these decisions’ (p. 223). Ethical dilemmas arise from conflicting values, norms and interests and can be understood as knowing ‘the right thing to do, but institutional or other constraints make it difficult to pursue the desired course of action’.^18,19 Thus, healthcare team members can be troubled by their awareness of irresolvable, competing or contradictory moral imperatives.²⁰ The Code of ethics for nurses²¹ comprises ethical standards that guide nurses in various ethically challenging situations in practice. Factors that contribute to ethically difficult decisions include conflicting values or feelings of frustration about actions that are insufficient or inconsistent with one’s conscience.^22–24 The psychological consequence of being aware of one’s responsibility but lacking the power and resources to act on this awareness (i.e. acting in a regrettable way) confuses the logic of right and wrong.²³ Even when healthcare team members are capable of good judgement and choices, the cultural norms of the workplace may induce conformity and passivity,²⁵ as their moral conviction puts them at risk of criticism from colleagues, the organisation and the community.²⁶

To the best of our knowledge, there is a lack of research on the ethical dilemmas experienced by healthcare team members who care for depressed older persons.

Aim

The aim of this study was to explore healthcare team members’ reflections on the ethical dilemmas involved in promoting self-management among depressed older persons. The research question was as follows: how can healthcare team members meet the needs of depressed older persons and at the same time focus on self-management?

Methods

A qualitative study was performed.²⁷

Findings

One main theme, ‘Lack of trust in the community healthcare system’s commitment to bringing about effectiveness and change’, three themes and two sub-themes emerged: The first theme ‘Struggling to ensure the reliable transfer of information about older depressed old persons to professionals and family members’ comprised one sub-theme ‘Having too much responsibility’. The second theme ‘Balancing autonomy, care and dignity’ comprised one sub-theme ‘Struggling to allow depressed older persons to experience dignity’, while the third theme was ‘Differences in the understanding of responsibility’.

Lack of trust in the community healthcare system’s commitment to bringing about effectiveness and change

Team A was concerned about the lack of trust in the community healthcare system’s commitment to bringing about effectiveness and change. The community has a department with authority to coordinate the care of all patient groups with physical healthcare needs. There was little communication between Team A and the above-mentioned department. The team members stated that the department does not pay much attention to the psychiatric needs of their patients. Thus, no coordination of the older persons’ care needs takes place before admission to in-patient psychiatric care. They reported that the worst aspect is the fact that the professionals in the care coordination department plan the discharge together with the geriatric department without contacting the team, which means that team members no longer have trust in or a sense of loyalty to this department. A member of Team A stated,

There are too many weak links in the organization of community primary health care that can break and sometimes do. I wish I could trust the community to show commitment to the development of a plan for specific patient groups such as depressed older persons. (A, 4)

The team members stated that the professionals in this department decide what the older persons need, obstruct their opportunities and mainly focus on physical needs. They added that primary care physicians do not pay much attention to the care of depressed older persons, who report receiving little information or assistance and feel quite lost. One of the members of Team A stated,

It’s about neglect of responsibility. (A, 1)

Balancing autonomy, care and dignity

The members of Teams A and B discussed how to balance autonomy, care and dignity when promoting older persons’ self-management. One of the team members mentioned ethical judgements such as autonomy versus charity as ethical dilemmas. She also understood this dilemma as trying to balance autonomy, self-management and participation. The members of Teams A and B agreed with her description. Another team member stated,

The patient cannot stay in bed, as it could lead to her/his death. One needs knowledge about how to handle depression or else we will fail in the care of the patient. (A, 3)

The team members agreed about the difficulties of balancing autonomy, care and self-management. They stated that in order to make the care less intrusive, it is necessary to become more aware of the meaning of self-management and participation when informing the patient about what will happen and why.

Differences in the understanding of responsibility

One of the members of Team A mentioned a term that had not been in focus, namely, moral responsibility, and stated,

Having moral responsibility is fine in my view. I also believe that the family has a moral, if not legal, responsibility. I often think about the terms. Have I taken over responsibility and not let the person decide her/himself? It’s a matter of sharing, cooperating with and assisting the old person. I have some expectations on the family in this respect. I perceive a professional as well as a legal responsibility. (A, 2)

The members of Team A stated that self-management can be related to autonomy. How much responsibility can she or he take in a given situation and what are her or his chances of becoming involved in the care? One member of Team A revealed that in her experience, the meaning of moral responsibility is the same as professional responsibility. She stated,

However, the doubt ‘have I done the right thing?’ is ever present and can perhaps be related to moral responsibility. You doubt whether the things you have done are sufficient. I often have to calm down and tell myself that I have done everything. But even so the doubts emerge, and I ask myself whether they are ethical or moral. I find this meaning the most plausible. (A, 4)

Another member of Team A agreed that the meaning can involve all ethical dimensions and the ethical responsibility that everyone has to help a person in need. One of the members of Team B revealed that, in her opinion, moral responsibility is something you do after you have completed the obligatory tasks and concerns doing something more, a little extra and looking beyond.

Discussion

The researchers are responsible for establishing the trustworthiness of the research process and the truthfulness of the thematic analysis. According to Polit and Beck,²⁷ criteria for establishing the trustworthiness of qualitative data are credibility, dependability, confirmability and transferability. Credibility refers to confidence in the truth of the data and their interpretation.²⁷ This implied ensuring that the perspectives of the participants were represented as clearly as possible and demanded an in-depth understanding of the participants’ situation. The researchers have included quotations from the text in order to help the reader to judge if they have succeeded in describing the participants’ perspectives. Both authors have checked the text several times and enhanced the credibility of the findings by putting critical questions to the text and searching for explanations. Confirmability refers to the objectivity or neutrality of the data²⁷ where the researchers interpreted the text from their own horizons as researchers and psychiatric nurses. Although they do not have a neutral position, they attempted to interpret the data as neutrally as possible as suggested by Polit and Beck.²⁷ The themes and sub-themes that emerged represented an attempt to explore the various stages in the process of interpreting the consequences of ethical dilemmas. The summaries of the focus group interviews were read several times before agreeing on the different themes and sub-themes. Lincoln and Guba³⁴ called this auditability, which is a criterion of the truth value in qualitative research. Dependability refers to the systematic, logical and documented inquiry process in addition to data stability over time and conditions.²⁷ Such stability was difficult to judge because the situation in the community and in the geriatric ward can change and influence the perceptions of the professionals.

Transferability of the findings depends on the similarity of the context in which the data were collected and that to which the findings are to be transferred.

The thematic analysis of healthcare team members’ reflections on ethical dilemmas revealed a main theme, ‘Lack of trust in the community healthcare system’s commitment to bringing about effectiveness and change’, based on three themes. The main theme contained reflections about how ethical dilemmas increased when the team members did not trust in the healthcare organisation’s commitment to bringing about effectiveness and change. Lack of engagement on the part of and trust between the different professionals who work in the community is extremely counterproductive with serious implications for patient dignity and safety. Studies have demonstrated how empowerment influences interactional justice, respect and trust as well as the understanding of the patient perspective.^35,36 There is evidence to suggest that changes in the healthcare organisation lead to greater demands on and stress for the professionals.²⁰ Wagner et al.¹¹ suggested using the CCM model to change the healthcare system, thereby improving quality of care. However, these authors did not mention trust, but instead outlined the value of collaboration, which implies that the CCM needs to be implemented by a well-functioning collaborative team that includes the patient, where each member contributes information and experience. Ethical dilemmas arise when team members do not understand why they cannot influence the process, which can cause mistrust. The reality seems more complex than the description of the CCM model, where community links to a well-functioning, proactive team are set out in detail. According to previous research, emotionally difficult ethical decisions involve conflicting values and feelings of frustration about inadequate or inconsistent actions relative to one’s conscience. Research has demonstrated the ethical consequences of being aware of one’s responsibility but lacking the power and resources to act on this awareness, which confuses the logic of right and wrong^22–25 and thereby of doing good.³⁷ The organisation can be damaged by suppressed feelings and mistrust that weakens the hope of genuine commitment. No trusting organisation can exist without a pervasive sense of justice, and fairness seems to be an essential part of trusting relationships, regardless of one’s position in the community.⁷

Wagner et al.¹¹ used the term ‘decision support’ to describe interventions directed at improving professionals’ information and skills. There seems to be a struggle to ensure the reliable transfer of information about depresssed old persons to professionals and family members. Transfer of information can mean different things in a community healthcare organisation, and it is impossible to develop loyalty and trust when nobody is responsible for ethical decision-making. The demand for ethical decision-making in healthcare organisations is increasing.^9–11 It must be acknowledged that team members need to employ their own judgement to gain access to knowledge, information and how to make use of them.^38,39 However, community healthcare seems to lack commitment to ethics as well as ethical support groups for various professional categories in order to ensure trusting relationships. Hsu et al.⁴⁰ revealed that by stimulating staff commitment, healthcare providers were able to pursue organisational goals and deliver high-quality patient service. To enhance organisational commitment, healthcare managers need to create interpersonal interaction platforms. Lack of reflection on and discussions of ethical dilemmas have also been reported in the literature as leading to moral distress.⁴¹

The sense of being alone in one’s work situation and carrying too much responsibility can be exhausting and lead to a feeling of not handling it properly. It can also give rise to shame and mistrust when one believes there is something wrong with one’s own work capacity. Studies have revealed that team members are not fully prepared to handle the numerous ethical challenges they face in research and daily practice.^42,43

‘Balancing autonomy, care and dignity’ highlighted the difficulty of focusing equally on these aspects when attempting to promote self-management in the care of older persons. Greater awareness of the meaning of participation and self-management is necessary in community healthcare in order to avoid violating depressed older persons. The current problem in healthcare seems to be partly on the organisational system level that appears to ascribe too much responsibility to both team members and patients.¹² Threats to dignity can result from the perception of being incapable of self-management and of imbalance instead of balance. Community leadership and management do not appear to understand the value of commitment and trust for increased cooperation between specialist and community care when caring for different patient groups with chronic conditions.¹⁸ The lack of commitment can be related to negative attitudes about ageing and older people, for example their inability to be in charge of their life. Sometimes depressive ill-health can imply a lack of self-management, a sense of estrangement and a loss of togetherness⁹ as well as a state where the older depressed person has no strength to fight for her or his rights. Ethical dilemmas associated with dignity seem important for team members in view of increasing demands for efficiency and change in the healthcare organisation.⁴⁴ The team members described an ethical dilemma as not knowing how best to help depressed older persons to take responsibility for self-management. Team members have a responsibility to respect and enhance patients’ autonomy and to maintain a high level of judgement and skill so that patients are safe with self-management. Redman¹² outlined the responsibility of obtaining patient agreement on the planned goals. Such an approach rests on the notion that old persons are moral agents who understand the meaning of skills related to their own values.

Autonomy involves self-determination, independence and self-care, concepts that are difficult to achieve in mental healthcare. However, this study revealed that at times one has to take responsibility for the depressed older person’s care. This is a balancing act and ethical dilemmas arise in community and specialist mental health practice because of the vulnerability of the patients. The vulnerability is associated with violation in childhood, adolescent years or in a partnership that was experienced as intrusive and has consequences for the older person’s experience of dignity. The general concept of dignity is characterised as a position on a value scale and it is further specified through its relations to the notions of right, respect and self-respect.⁴⁴ Ethical dilemmas seem to arise when the team has to apply force. Such experiences can dominate ethical decision-making. Depressed older persons are sometimes restricted by their mental state and unable to take responsibility for their actions.⁴⁵ One of the most important objectives of mental healthcare is the development of a person’s ability to shape and take control of her or his life.⁴⁶ Care without dignity can lead to moral distress for team members when an ethical dilemma arises, due to the experience of threats to dignity in the conflict between the ideal and the reality.⁴⁷ Thus, one needs to reflect on whether the older persons experience intrusion rather than dignity. As the team members in this study stated, dignity can be a concept they prefer not to use because it is difficult to know if the patient really feels worthy. Treating someone with dignity means asking whether the person experiences a sense of worthiness or not, and the only one who can answer this question is the older person herself or himself. Dignity is a core concept in nursing care, and care without dignity would negatively influence a person’s recovery.⁴⁸

The meaning of self-management can vary as it forms part of each person’s personal values throughout life. When ethical dilemmas arise, it can be possible to increase a depressed older person’s strength by enhancing her or his self-determination and dignity.⁹ Team members need to reflect on the depressed older person’s vulnerability and longing to be confirmed, trusted and listened to, which has been proposed as a tool for improving awareness of one’s role in the dialogue.⁴⁹ Self-determination has been highlighted as the most significant human right.⁵⁰ The core of self-management seems to be an existential dimension related to dignity associated with the health process as a ‘journeying task of making sense of life itself’ (p. 332).⁵⁰ Research revealed that in order to achieve self-management, the focus must shift to empowerment and support. This approach is relatively new and underdeveloped in primary care settings.^8,11

Moral responsibility was interpreted by Lindh et al.⁵¹ as a relational way of being, which involved guidance by one’s inner compass comprising ideals, values and knowledge that translate into a striving to do good. Ethical challenges arise when one experiences being unable to act in a good enough way. According to Aristotle,³⁷ one wants to do good for its own sake and what is good can be recognised through experience. Striving is part of the concept of eudaimonia, meaning the achievement of a good life that implies the use of one’s ability in a beneficial way.³⁶ Good teamwork cannot be restricted to correct actions, but requires reflection on ethical dilemmas, knowledge and relational actions.⁵¹ Ethical dilemmas can be associated with a sense of failure to assume moral responsibility.⁵¹ The healthcare team members were burdened by moral responsibility when their actions on the patient’s behalf were unclear.^52–54 Redman¹² outlined the responsibility to obtain patient agreement on planned goals, which is based on the notion that depressed older persons are moral agents with their own values. Thus, team members should be engaged in a discourse about the use of different self-management strategies. The intention behind self-management is for patients to gain an in-depth understanding of their illness. The collaborative approach of a healthcare team is important for empowering older persons by means of self-development and self-management.

Conclusion

Ethical dilemmas cannot be considered an individual issue, as ethical decision-making is complex and research has revealed that healthcare team members are not fully prepared to meet these demands.^14,15,42,43

The community healthcare system and organisation need to build commitment and trust. One way to achieve this is to increase the level of ethical discussions and reflections in the community when caring for depressed older patients. Ethical discussions can help different groups of healthcare providers to cope with ethical dilemmas. It is essential to build ethical commitment and trust between the team, the depressed older person and the community healthcare system. The depressed older person can experience dignity by being an active member of the team. Dignity concerns being met with respect, protection of privacy as well as emotional support.

Depressed older persons are at risk of losing their dignity in the healthcare system due to lack of a coherent strategy that could contribute to improved care. Furthermore, ethical dilemmas seem to arise when one is unable to maintain one’s professional ethical stance and standard of care. The fact that the healthcare organisation is not committed to a plan setting out the standards required for the health and care of depressed older persons can exert a negative influence on patient safety.

Acknowledgements

The authors wish to thank the healthcare team members for participating in the focus group discussions as well as Gullvi Nilsson and Monique Federsel for reviewing the English language.

Footnotes

References