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Abstract

Background

Moral distress is a far-reaching problem for nurses in different settings as it threatens their health.

Aim

This study examined which situations lead to moral distress in home-care nursing, how and with which consequences home-care nurses experience moral distress, and how they cope with morally stressful situations and the resulting moral distress.

Research design

A qualitative interview study with reflexive thematic analysis was used.

Participants and research context

We conducted semi-structured interviews with 20 home-care nurses in Germany.

Ethical considerations

The study was approved by the Data Protection Office and Ethics Committee of the German Federal Institute for Occupational Safety and Health.

Findings

Twenty (14 female and 6 male) home-care nurses were interviewed between April and August 2023 at their chosen location. The situations leading to moral distress were inadequate care of the person in need of care, not being able to protect one’s health, extended responsibility for the entire care arrangement, work–privacy conflicts, and conflicts between the understanding of care or professional ethics and the performance and billing system. The nurses experienced moral distress as they worked alone and provided care in the patient’s territory. Short- and long-term strains with destructive cognitions, negative emotions, physical symptoms, and health consequences were reported. They faced challenges in coping with moral distress on institutional and individual levels.

Conclusions

In cases of tension between the service and billing system and the understanding of these nurses’ care services, moral distress is unavoidable. Alternative forms of organization and billing modalities, such as payment by time and the expansion and refinancing of service, should be implemented. The latter relates to systematic case and ethics meetings. Further, a transfer of medical activities, such as the prescription of wound material to registered nurses, could prevent morally stressful situations and improve patients’ quality of care.

Keywords

Ethics morality moral stressors home-care nurses working conditions thematic analysis

Introduction

Moral distress threatens patient care quality, health professionals’ well-being, and the whole organization,¹ making it a significant problem for health care.² Owing to their position in decision-making hierarchies, nurses are particularly affected by moral distress.³ In 1984, Jameton defined moral distress as “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action.”⁴ This suggests institutional constraints as a necessary condition for moral distress. Other morally relevant events of suffering were overlooked or neglected. Therefore, the definition of moral distress was recently broadened.^5,6 Fourie⁶ recently proposed moral-uncertainty distress, which is when a nurse is unsure about the morally right action. Morley et al.⁷ introduced with empirical evidence a further segmentation in moral tension, uncertainty, constraint, conflict, and dilemmas.^7,8 We therefore apply the definition of moral distress as “psychological response to morally challenging situations.”⁵

The prevalence of moral distress depends on the care setting, instrument used to measure moral distress, and the country.^9,10 The relevant literature mainly focuses on nurses in clinical settings.^2,11,12 Although some studies show that home-care nurses also undergo and suffer from moral distress,¹³ analyses of home-care-specific situations that lead to moral distress apart from general ethical problems are lacking.¹⁴ Consequences like burnout and intention to leave one’s current position,¹³ and the worldwide growth of home-care nursing¹⁵ highlight the need for prevention of moral distress. Therefore, this study examined moral distress specifically in home-care settings.

Home-care (nursing) in Germany

In Germany, home-care services (HCS) support people in need of care and their relatives in all areas of daily living (e.g., nutrition, personal hygiene, exercise). The need for care affects not only older individuals, but also children with disabilities or adults with chronic illnesses.¹⁶ In the German home care system, certain medical-related tasks, such as administering medication or injections, are prescribed by the family doctor and financed by the statutory health insurance, while other services are covered by long-term care insurance. Those in need of care choose a HCS with which they conclude a care contract for the services to be provided. There are private, non-profit, and municipal HCS. Expert raters of the statutory health insurance assess the level of care dependency (low to severe). Depending on this level, a certain budget is available to the person in need of care; if the costs exceed the selected services, they must be paid for themselves. If family members take on care activities, they can receive care money from this budget.

Aim

This study examined (a) which situations lead to moral distress in home-care nursing, (b) how and with which consequences home-care nurses experience moral distress, and (c) how these nurses cope with morally stressful situations and the resulting moral distress.

Methods

Data collection

The first author collected data from April to August 2023. Following Kallio et al.¹⁷ the semi-structured interview process included a peer review of colleagues of the “Designing Service Work” unit of the German Federal Institute of Occupational Safety and Health, an expert review, and a pretest in the target group (Online_Supplement_1).

Sixteen of the 20 interviews were conducted face-to-face at a quiet location of the participant’s choosing such as the HCS or a café. Three interviews were held via videoconference, according to the participants’ wish or for organizational reasons. The interviews began with a reminder of the study aim and a brief definition of moral distress. The situations in which moral distress was experienced were understood as critical events. Based on these situations, accompanying feelings, thoughts, support options, and consequences were elicited to answer the research questions. In the last two interviews, the nurses did not raise new situations of moral distress or other issues, indicating data saturation.¹⁸

Participants and research context

Inclusion criteria for participation were (a) employment in a HCS with social insurance, (b) completion of professional nursing education training (3-years), (c) minimum age of 18 years, and (d) at least one year home-care work experience. Home-care nurses from HCS of different sponsors (non-profit/private/municipal) and different German federal states were interviewed to minimize selection bias due to the structural working conditions of the HCS. Hence, a list of randomly selected HCS per state was compiled, the managers of which were contacted by email for distributing the invitation to employees (Online_Supplement_2). Nurses received €50 in appreciation of their time.

Research design

This descriptive study with thematic analysis used the critical incident technique (CIT) to collect data.^19,20 This method originates from the field of air traffic control, making it particularly solutions-oriented. Home-care nurses were asked to describe a critical situation—a real-life experienced situation with a clear beginning and end that is particularly important to them.¹⁷ Participants described the circumstances, including the (a) situation that led to the incident, (b) actions or behaviors of the focal person in the incident, and (c) results or outcomes of the behavioral actions. CIT is particularly appropriate for discussing morally stressful situations in home-care nursing and the manners of coping with them because it is solutions- or option design-oriented²¹ and thus, could help in formulating recommendations for work improvement by reducing moral distress. To gain a deeper understanding of the situations, CIT was complemented by the reflective cycle according to Gibbs and Unit.²² Specifically, questions about emotions, cognitions, and the situation’s appraisal were designed to guide nurses to think more deeply about their experiences. This generated a more precise situation description and insightful information about the nurses’ experience and morally relevant features of the situation. CIT’s application in the health and nursing sciences has proven to be purposeful^21,23 and been applied for analyses regarding moral distress.²⁴

Data analysis

An external service provider contracted to comply with all aspects of data protection transcribed the audio recordings. The interviews were transcribed orthographically, with breaks, pauses, and accentuations noted. The first author, who worked in HC for several years, conducted the data analysis utilizing the steps of reflexive thematic analysis^25–27 and the program MAXQDA (version 2020). This method seems to fit CIT’s solutions-oriented approach whilst answering the research questions. Table 1 outlines this process.

Table 1.

Steps of data analysis.

Steps of thematic analysis	Realization in the study^a
Familiarize with the data	• Listening to the audio recordings
	• Reading the individual transcripts several times
	• Taking initial notes and first patterns concerning themes using the memo function of MAXQDA
Generating initial codes	• Creating an inductive coding system based on the text passages of the individual transcripts
	• Ongoing renaming of the codes
	• Rereading the text after coding all available transcripts
	• Comparing the initial codes with the final coding system
Searching and generating themes	• Shifting from the interpretation of individual data items within the dataset
	• Searching for aggregated meaning and meaningfulness across the dataset
	• Organizing the initial codes into sets of themes and sub-themes
	• Combining similar codes
Reviewing potential themes	• Reviewing the themes in relation to the dataset
Reviewing potential themes	• Analyzing the themes regarding internal homogeneity and external heterogeneity
Defining and naming themes	• Defining the themes and subthemes by describing the scope and content
Defining and naming themes	• Checking the themes’ names
Producing the report	• Conducting the final write-up of the analysis (analysis and writing were a recursive process)
Producing the report	• Deciding that the transcripts would not be returned to the participants

^aDue to the recursive and iterative type of analysis,²⁶ moving back and forth through the phases was required.

Rigor and trustworthiness

For a comprehensible analysis, we applied the quality criteria of confirmability, credibility, dependability, and transferability from Guba and Lincoln.²⁸ To reach confirmability, two authors discussed the coding and refining process constantly and validated the theme structure with all authors to gain consent.

Credibility was addressed by involving home-care nurses from 15 different HCS in eight federal states. The research process was planned systematically to enhance reliability. Several researchers of the project team also took part in the data analysis and interpretation. To ensure transferability, participant characteristics and the study design were explained in detail.

Ethical considerations

The Data Protection Office and the Ethics Committee of the German Federal Institute for Occupational Safety and Health approved the study design (BAuA: No. 062_2023). The team of authors first informed participants in detail about the study’s aims and procedures, and they voluntarily agreed to participate by signing a written informed consent sheet. According to the data protection concept, participant data were kept confidential such that the interview statements could not be traced to the participant. A psychologist was available for in-depth discussions.

Results

Overall, 14 female and six male home-care nurses between 33 and 55 years (mean: 43.2) were interviewed. One interview was conducted with two persons for organizational reasons; thus, the study involved 20 persons but 19 interviews (Table 2).

Table 2.

Participant characteristics.

No.	Gender	Age, years	Work experience, years		Ownership	Federal state	Coding	Duration (min)	Face to face (F)/digital (D)
No.	Gender	Age, years	Home care	Other nursing settings	Ownership	Federal state	Coding	Duration (min)	Face to face (F)/digital (D)
1	Male	37	20	0	Private	Saxony-Anhalt	AP_Int.1_2	62	F
2	Female	35	10	5	Private	Saxony-Anhalt	AP_Int.1_2	62	F
3	Female	45	11	6	Private	Baden-Württemberg	AP_Int. 3	63	F
4	Male	58	35	5	Private	Baden-Württemberg	AP_Int. 4	100	F
5	Male	47	15	0	Non-profit	Berlin	AP_Int.5	81	F
6	Male	33	8	0	Non-profit	Berlin	AP_Int.6	40	F
7	Male	35	3	0	Non-profit	Berlin	AP_Int.7	50	F
8	Female	53	16	0	Non-profit	Berlin	AP_Int.8	69	F
9	Female	42	15	7	Private	Baden-Württemberg	AP_Int. 9	70	F
10	Female	52	28	4	Non-profit	Baden-Württemberg	AP_Int. 10	93	F
11	Female	42	12	13	Private	Bavaria	AP_Int. 11	75	F
12	Female	33	8	3	Non-profit	Bavaria	AP_Int. 12	65	F
13	Female	51	10	10	Non-profit	Bavaria	AP_Int. 13	50	F
14	Female	48	20	8	Non-profit	Saarland	AP_Int. 14	69	D
15	Female	44	12	16	Non-profit	Schleswig-Holsteins	AP_Int. 15	71	D
16	Male	28	2	5	Private	North Rhine-Westphalia	AP_Int. 16	47	D
17	Female	53	21	10	Non-profit	North Rhine-Westphalia	AP_Int. 17	48	F
18	Female	39	11	1	Non-profit	North Rhine-Westphalia	AP_Int. 18	57	F
19	Female	55	27	10	Non-profit	North Rhine-Westphalia	AP_Int. 19	77	F
20	Female	35	3	4	Non-profit	Rhineland-Palatinate	AP_Int. 20	55	F
Mean		43.2	14.3	5.3				65

Applying thematic analysis, we generated five themes with 17 sub-themes for research question a, three themes with eight sub-themes for research question b, and two themes with five sub-themes for research question c, illustrated in Tables 3–5.

Table 3.

Interpretive themes, sub-themes, and descriptive codes for research question a.

Research question a: Which situations lead to moral distress in home-care nursing?
Interpretive theme	Subthemes	Descriptive codes
Inadequate care of the person in need of care	Due to lack of financial resources of the person affected	Sufficient nursing services cannot be financed
	Due to other external stakeholders	Insufficient prescriptions, errors by doctors
		Missing/delayed aids from health insurances
		Insufficient care by live-ins
	Due to inadequate (or, in nurses’ opinion, poor) informal care	Unlawful use of care money
		Concealment of truths
		Conflicting ideas about what is good for care recipients
		Blatant disregard for the needs of care recipients (up to abuse)
	By refusing support from those in need of care	Neglect
	By refusing support from those in need of care	By refusal of help
	By mistakes of colleagues	Insufficient qualification
	By mistakes of colleagues	Conflicting understanding of care
	Due to limited decision-making power	Being dependent on prescriptions for aids
Inability to protect one’s health	Profitability of the care service at the expense of the nurses’ health	“Being burned out”
	Conflicts, challenging behavior, threats, and violence	Idiosyncrasies and mood swings
		Expectations and demands of care recipients and relatives
		Intercultural conflicts
		Psychological violence
		Physical violence
	Work organization of the HCS	Lack of occupational health and safety
		Break absenteeism
		Presenteeism out of a sense of responsibility
		Occupational accidents
Extended responsibility for the entire care arrangement		Crossing the boundary of proximity and distance
		Over engagement
		Having to take responsibility for problems and conflicts of household members
		Lack of support from nursing service and supervisor
Work–privacy conflict	Work organization of the HCS	Being called in during free time
Work–privacy conflict	Work organization of the HCS	Filling in (e.g., blackmail through “minus” hours)
Conflicts between the understanding of care or professional ethics and the performance and billing system	Performance care	Having to leave behind those in need of care
	Performance care	No time for holistic and individual care that one would want for oneself
	Takeover of unpaid services	Conflict with superiors
	Takeover of unpaid services	Conflicts with colleagues
	Emergency situations	Other people in need of care must wait
		Moral obligation to help
		Financing issues
	Rejection of planned measures	Payment for services not rendered
		Conflicts with superiors
		Conflicts with care recipients
		Conflicts with relatives
	Time pressure	Own mistakes
		Trade-off between providing “good care” and saving time
		Conflicts with patients due to “unpunctuality”
		Time “split” between care recipients
	Documentation vs. human attention	Digital documentation vs. human attention
		Paper-based vs. human attention
		Digital time recording as a tool for control and monitoring
	Joint responsibility for the financial situation of the HCS	Weighing up the profitability of the care service and the needs of people

Table 4.

Interpretive themes, sub-themes, and descriptive codes for research question b.

Research question b: How do home-care nurses experience moral distress?
Interpretive theme	Subthemes	Descriptive codes
Perceptions of moral distress specific to home care		Have to decide alone and immediately
		Intensive relationship with care recipients
		Caring in the territory of the patients
Short-term strain (experience in the situation)	Destructive cognitions	Bad conscience
	Destructive cognitions	Intention to leave the job or profession
	Negative emotions	Overload
		Helplessness
		Shock
		Insecurity
		Guilt
	Physical symptoms	Lump in one’s throat
	Physical symptoms	Gastrointestinal symptoms
	Critical (health) behaviors	Smoking
	Critical (health) behaviors	Leaving the situation (wanting or needing to leave)
Long-term strain (long-term consequences)	Destructive cognitions	Bad conscience
		Rumination (preoccupation with one’s thoughts)
		Intention to leave the job and/or profession
		Job dissatisfaction
	Negative emotions	Anger
		Sadness
		Regret
		Guilt
		Irritability
	Physical symptoms	Gastrointestinal symptoms
	Physical symptoms	Sleep problems
	Mental disorders and general health consequences	Depression
		Burnout
		Cool-out
		Absenteeism

Table 5.

Interpretive themes, sub-themes, and descriptive codes for research question c.

Research question c: How do nurses in home-care settings cope with morally stressful situations and the resulting moral distress?
Interpretive theme	Subthemes	Descriptive codes
Institutional support and communication	Functioning systems	Accessibility of medical support
	Functioning systems	Legal care
	Systematic social support	Handover
		Service and case discussions
		Supervision
		On-call duty
	Unsystematic social support	From colleagues (e.g., taking care of patients)
	Unsystematic social support	From superiors
Individual coping strategies	Search for solutions for morally distress-triggering situations	Bypassing rules
		Making gut-feeling decisions
	Acceptance of the “unsolvable” situation and individual handling of it	Talking with partners and friends
		Enduring, if necessary; accepting negative consequences for oneself
		Gaining distance
		Humor
		Adjusting one’s own standards
		Maintaining a positive mood
		Yoga

Situations leading to moral distress

Inadequate care of the person in need of care

Theme one, inadequate care of the person in need of care, had several subthemes which specify the causes of the inadequate supply (e.g., lacking financial resources, failure of external stakeholders or informal caregivers, refusion of care). The core issue is that the patient is not being cared for in the manner the nurse envisions, resulting in suffering.

Lack of financial resources

Participants discussed many situations of poor patient care as sources of moral distress, arising from the patients’ or their relatives’ service cost financing difficulties.

I see she is simply unwashed, but has booked only medication. Then you leave feeling nauseous and with a little abdominal pain and a bad feeling. Because many older patients cannot afford so much care. (AP_Int.12)¹

External stakeholders

Delayed or inappropriate treatment from external stakeholders (doctors, health insurance providers, or live-ins) also led to poor patient care, with missing prescriptions undermining the patient’s well-being and leaving nurses unable to determine how to improve the situation.

The doctor prescribes wound management, which is not suitable at all, where I know from the beginning that the wound will get worse. I find THAT violent, ne? (AP_Int.19)

Informal caregivers

Besides the participants, family members also supported the patients, which caused conflicts and moral distress when the participants disapproved of the care by family. Recognizing that care duties were not fulfilled although family members gained care money was also morally stressful for the participants. Furthermore, some participants reported informal caregivers’ neglect of those in need of care, up to and including physical abuse.

I said, “He is in a lot of pain.” […] “I CAN'T move your father in bed anymore without him crying out or making a face.” Say I: “That is a CLEAR sign to me, he is suffering. We can’t work like this anymore.” – “Yes, then you don’t need to come at all.” (.) And then I sat in the car and cried for a while. (AP_Int.12)

Often, the abuse or violence toward the person in need of care cannot be clearly proven, for example, because of dementia, making nurses feel overloaded and helpless.

She said that the son would SLAUGHTER her. The son came into the room, he […] said, “I didn’t SLAUGHTER you. That was a slap.” Then it went back and forth. The woman had severe dementia. Then you doubt yourself; is it true, is it NOT? […] Then we are obliged to involve the health department. […] He said: “Well, that’s what you get for that. The health department is coming to get you. You’re going straight to a home,” And then I’m standing there: (breathing in shock) I didn't want that either. I just wanted her to be well. And there one stands, really, one has totally bad conscience, I find, totally. EVERYTHING you do is wrong. (AP_Int.19)

Refusion of care by people in need of care

In some instances, the patient himself refuses certain care activities, necessitating expert advice.

You don’t want to leave him in the URINE. (.) On the other hand, he scolds us and gets angry with us and says: “You, always with your shit washing, I don’t want that shit.” So, and the family says, however, he must look good. (AP_Int.15)

By mistakes of colleagues

That their colleagues understood nursing differently or did not provide care according to professional standards (which could endanger the patient) caused a conflict of loyalties, as the interviewees did not want to blame their colleagues but simultaneously felt responsible and ethically committed to the patients’ well-being.

Due to limited decision-making power

In some situations, the participants were unable to provide patients with sufficient care due to their lack of decision-making authority in the healthcare system, for example, in relation to doctors or other stakeholders (e.g., prescribing medical aids).

Inability to protect one’s health

Theme two addressed situations in which the participants could not protect their health and thus experienced conflicts between the principles of self-care and welfare (e.g., Profitability of the care service at the expense of the nurses’ health, conflicts, challenging behavior, threats, and violence)

Profitability of the care service at the expense of the nurses’ health

They felt exploited by their employer, who prioritized economic goals over their health needs (e.g., condensation of tours). This feeling arose from work organization of the HCS such that nurses felt no breaks were possible because of the dense route planning or their supervisors’ inadequate reaction to accidents at work.

Conflicts, challenging behavior, threats, and violence

They also felt their health being threatened by psychological or physical violence. Further, because of patients’ or their family members’ excessive demands, the nurses’ needs were ignored, leading to moral distress.

That the bathtub lift should perhaps stand the other way around for bathing, because she gets back pain in this position […] And the son said that it wouldn’t matter to him if the colleague got back pain or not. He would pay for it. And then he, the son also said: “Mother, you don’t have to praise her. If you don’t scold or don’t complain, that’s praise enough.” (AP_Int.17)

Extended responsibility for the entire care arrangement

The third theme, without subthemes, centered around the responsibility, home-care nurses develop for their patients. The boundary between professional closeness and distance is sometimes difficult to maintain, especially when patients suffer from loneliness and make great demands on the nurses. Some participants often felt obliged to solve problems outside their nursing responsibilities in their free time, thereby causing moral pressure.

Regarding the excessive responsibility for the person in need of care, participants felt left alone by the nursing service and superiors, as they could not understand the situation, the need for action in the households, and the emotional pressure resulting from feeling responsible for the person in care, because they have not experienced it directly.

Work–privacy conflict

Theme four, work–privacy conflict with the subtheme work organization, consisted situations in which participants felt torn between family responsibilities and professional obligations.

Work organization

The major aspect in this theme is the work organization. Thus, work–privacy conflicts, which led to moral distress arose when participants were called in during their free time. The participants had to neglect either their family responsibilities, or their colleagues and patients.

“Okay, if I don’t step in now, there’s no one there.” So you always feel responsible in the situation, because you don’t want to let the team down; you don’t WANT to let the patients down. […] Yes, to sacrifice your free time or just to say, “Okay, Mama is now WORKING again,” is just difficult. (AP_Int.20)

Company-related minus hours also generated work–privacy conflicts. In some cases, participants were scheduled by roster writers for fewer hours than their contract specified, to allow flexibility. However, hours were often lost because of admittance of patients as inpatients or cancellation of assignments at short notice, thereby causing pressure to make up the hours.

Conflicts between the understanding of care and the performance and billing system

The last theme, conflicts between the understanding of care and the performance and billing system with the resulting sub-themes (e.g., Performance care, takeover of unpaid services, emergency situations, rejection of planned measures, time pressure, documentation vs. human attention, and joint responsibility for the financial situation of the HCS,) dealt with moral distress which occurred if participants did not feel that the existing system enabled them to provide the care, they believed in.

Performance care

Nursing tasks are prearranged by contract with hardly any freedom in the clocked touring plan to react to current needs; this contradicts the moral principles of nursing. They had the feeling that they didn't even have time and space for a banal greeting:

That is now with care, with excretion, time for excretion, a wound dressing, that everything is timed to minutes SO ULTRA tight; […] I don’t even have time, [for] this blanket [greeting], “Good MORNING, have you slept well?” I don't even listen. I am already thinking, “Where are the things? (AP_Int.14)

Emergency situations

Specifically, when emergencies occurred, the participants had to balance the needs of all patients in a tour. They felt the moral obligation to help despite knowing that the subsequent patients must wait.

Takeover of unpaid services

Patients requesting tasks or services that they did not pay for also caused conflict for the participants—between the requirements of the HCS, and the handling of colleagues and the patients’ needs.

Rejection of planned measures

Moreover, patients rejecting measures they previously ordered (e.g., taking a shower) are handled by HCS differently. Sometimes, patients must pay for the service anyway or nurses must convince the patients, and sometimes, the patient’s decision is accepted without requiring payment. Hence, the participants experienced contradictory demands from family members, who insisted on the paid service; supervisors, who feared that the visit would not be paid; and the patient, whose needs changed.

Time pressure

The resulting time pressure of the clocked tour plan can lead to mistakes, missed care, and the challenge to “split” the time between care recipients. Participants experienced moral distress in the decision to provide adequate care or save time for the next patient.

Documentation vs. human attention

Participants also described documentation requirements as high and conflicting with their conviction to spend more time with the patient. Paper-based and digital documentation diverted their focus away from the patient’s needs. They found the digital time recording that accompanied digital care documentation as a control and monitoring tool, which increased the time and justification pressure.

Joint responsibility for the financial situation of the HCS

Nurses’ joint responsibility for the HCS’s financial situation likewise resulted from the billing system. They were involved in their supervisor’s struggle to gain profitability for the HCS. Some nurses with additional leadership tasks had to weigh the HCS’s profitability against the patients’ needs, which they found morally stressful. Some participants even reached their limit and found that they no longer wanted to or could not make such decisions.

Exactly, so I then decided for myself that this is no longer good for me. And I didn’t want to have to make any more decisions against patients that simply didn’t pay off (AP_Int.12)

Experience of moral distress

Perceptions of moral distress specific to HC

The first theme regarding research question two dealt with how participants perceive moral distress in HC. They perceive morally stressful situations fundamentally different from inpatient settings because they work alone and thus, oftentimes have to decide spontaneously on the right thing to do. Moreover, because of their intensive relationship with the care recipients, they feel especially responsible and involved in the situation. In HC, the nurse enters the patient’s territory and must adapt to the living environment and the value system. This circumstance brings with it moral questions of a different nature, as demonstrated below.

We have to adapt to the PATIENTS. And then of course you try to ADVISE and recommend. But if you then, fall on deaf ears, you have to learn to accept, even […] it is WORSE for him. He has the right to DECIDE. [It] is for me PERSONALLY [it is] always a difficult situation. Because I think to myself, “Yes, you could actually do BETTER.” (AP_Int.20)

Short- and long-term strains

Participants experienced moral distress in HC immediately (short-term strain) and afterward (long-term strain). The leading symptom in both was negative cognitions in terms of bad conscience.

Many are lonely or isolated. Then COMES the bad conscience. (AP_Int.3)

Participants also reported negative emotions, physical symptoms, and critical health behavior in connection with morally stressful situations. They felt overloaded, shocked, helpless, and insecure about how to react. Sometimes, thoughts of no longer being able to do the job arose.

Even after work or sometimes weeks, month, or years later, the morally stressful situation still affected participants through mental occupation (rumination):

And, of course, I take it home with me from time to time. And then I think about the people and think, “Okay, now they are alone.” (.) There is often family, but sometimes NOT. And then I have this feeling that I would like to go back and look. (AP_Int.15)

Feelings of sadness, anger, or guilt accompanied this mental occupation, leading to sleeping problems and illness. Some participants reported depression or burnout as a consequence of morally stressful situations.

And when a patient died, who brought us about 1,000 euros a month through insulin, wounds and basic care, and so the first thought flared up: Oh shit, I now have to bring 1,000 euros back in, (.) and NOT, “Man, now a person has died”; it was [then] clear to me, this is no longer possible. (...) Because human beings' need for HELP ranked first with me ALWAYS. That was my greatest difficulty. And that’s what I yes, I actually got sick of.

Nurses’ coping mechanisms

Institutional support and communication

The first theme of research question three contained three subthemes (Functioning systems, systematic and unsystematic social support) and addressed ways of dealing with moral distress related to the HCS as an institution.

Functioning systems

Maintaining cooperation with other stakeholders in patient care was important for the participants, especially in critical care situations or emergencies. Sometimes, the problem in the care situation could be solved without stressing home-care nurses.

Systematic social support

If the morally stressful situation could not be solved in situ, systematic social support, such as meetings or supervision, was considered a helpful coping strategy.

Unsystematic social support

Social support outside the system, such as those from colleagues or supervisors, enabled the participants to talk about the morally stressful situation and accompanying feelings, thereby generating relief as they reflected upon the resulting pressure and strain.

That’s when you need a bit of support from the team, when the team says, “Man, you did everything right. You can’t help it; he could have fallen the day after tomorrow. (AP_Int.18)

Individual coping strategies

The second theme addressed individual coping strategies whereas the subthemes: Searching for solutions and Acceptance of the “unsolvable” situation and individual management of it are specified in more detail.

Searching for solutions

Oftentimes, participants decided out of a gut feeling or bypassed rules that evoked a morally stressful situation by organizing prescriptions or drugs in their free time and making less effort for therapies that they could not support, or found extraordinary solutions to help the patient without official medical aid.

The neighbors had called me, that the woman is very unkempt and that the man is always drunk. And then I actually just wanted to (.) make a house call to see. (.) And then the woman had FALLEN one night before and had a laceration on the head; it was also all full of blood. […] And the man was drunk. So I just took the woman in the car and brought her to our short-term care. (.) This was a huge STRESS. (Laughter) I took her with me. (.) Uh, it went very quickly with a court order. [It] could have gone wrong, right? But it went well. (AP_Int.19)

Acceptance of the “unsolvable” situation

Regarding missing options for action, the participants tried to cope with morally stressful situations privately by talking with family members about the strain, distancing themselves through free time, or trying to adjust their own standard to reality, especially the duty to endure such situations.

And these are also such situations, which you then simply endure somehow, that it is now going badly, but that it is their decision, (.) that they now WANT it that way. (AP_Int.6)

Discussion

Situations leading to moral distress

This study revealed that the home-care situations that evoked nurses’ moral distress were firstly connected with the patient’s well-being, for example, inadequate care due to a lack of financial possibilities to gain adequate nursing service or refusal of support by patients. Owing to their ethos of caring, which is defined in the Code of Ethics,²⁹ the nurses felt responsible for the human rights of the patients and their relatives, and for social issues. However, in practice, the HCS is the only stakeholder in the home-care arrangement besides the family members, physicians, and insurance companies. The ethical obligations to which home-care nurses are subject therefore go far beyond the specific tasks assigned and paid for by society and the HCS. This contradiction led to morally stressful situations that caused moral distress to the participants when the situation could not be solved. Büscher³⁰ also articulated that the tension between formal and informal care and the blurred line between social and nursing services cause conflicts in nurses despite not having management responsibilities. Meanwhile, moral stressors in the clinical setting somehow differ. Clinical nurses have reported the provision of futile care for end-of-life patients, team constraints such as professional hierarchy, and organizational constraints such as conflict within hospital policy as causes of moral distress.³¹

The findings show the conditions of the German nursing system as possibly a root cause of morally distressing situations for home-care nurses. Instead of providing holistic and individual care that is congruent with the nurses’ ethical principles, the system requires nurses to fulfill single tasks according to the nursing service–patient contract. The participants faced economic pressure because of the demand to stick to the prescribed time slots. The resulting time pressure led to mistakes that made them feel guilt and the need to decide who needs more attention. The situation is similar in clinics when there is a shortage of staff and a lack of time resources.^32,33 Furthermore, home-care nurses with leadership duties must constantly balance the nursing service’s profitability and the patients’ needs, which is in line with Büscher and Krebs.³⁰ This situation also leads to moral distress.

Moreover, home-care nurses are caught between the care for the patient, the expectations of the HCS, and their own needs and family obligations. The latter finding confirms quantitative results, where work–privacy conflicts were identified as predictors for moral distress in HC.¹³ Home-care nurses regularly endanger their own health by disregarding their own needs. However, the nurses’ self-care is a prerequisite for the patient’s care, and their neglect is a relevant source of moral distress.⁶

In summary, nurses reported situations in which they felt unable to act because of external rules (e.g., non-observance of the patient’s current needs because of contractual regulations) and those in which they did not know how they should act (rejection of nursing activities that are necessary from a professional viewpoint). This supports the distinction between the concepts of moral-constraint distress and moral-uncertainty distress introduced by Fourie.⁶

Experience of moral distress

The experience of moral distress in HC is seemingly unique because of the intensive relationship between nurses and patients or the whole family. As they work alone, they are under pressure to make morally distressing decisions, for example, how to react in emergency cases. At several levels, moral distress appears in the situation in situ and in the long run. This is in line with Jameton.⁴ This study’s participants described moral distress with destructive cognition (e.g., the intention to leave the job or even profession), negative emotions (helplessness, shock, anger at the situation, and sadness as long-term consequences), physical symptoms (stomach pain), and health consequences (rumination, absenteeism, burnout, and depression). The bad conscience was specifically emphasized, together with guilt and regret, which was a source of rumination. This long-lasting mental and emotional occupation of the experienced situations that bother the conscience indicates violation of the nurse’s moral integrity, which strikes at the heart of a person’s core values.³⁴ The lingering portion of moral distress, also referred to as moral residue, not only affects an individual at a personal but also at a professional level.³⁵ Emotional and psychosocial consequences such as grief were also reported by nurses working in care homes,⁹ including symptoms such as helplessness, sadness, and sleeping problems.³⁶

Nurses’ coping mechanisms

At an institutional level, the participants tried to use existing offers such as team meetings to cope with their moral distress. Team cooperation was also found useful for chief nurses.³⁷ However, colleagues were the first access point to talk about moral distress. This is in line with the findings of Morley et al.⁷ but seems only moderately helpful in solving the problem.

Limitations

Owing to the voluntary participation in the study, it is possible that only home-care nurses who are interested in the research topic responded. One interview was conducted with two persons because of the nurses’ wishes. It is possible that topics were presented in a different way than they would have been in a single interview. Three interviews were conducted via videoconferencing for organizational reasons. This method offers opportunities and risks for qualitative social research.³⁸ Some home-care nurses had additional leadership tasks. Further research is needed to map out the perspective of chief nurses in HCS regarding the experience of moral distress.

Conclusions

The results of this study show that moral distress is a major problem for home-care nurses, threatens their health, and therefore poses a risk for the whole outpatient care situation.

The findings indicate that the service and billing system of HC in Germany, in which every care task is based on minutes, is incompatible with the nurses’ understanding of care and thus, leads to numerous ambiguities and causes moral distress. Nurses find themselves in a quandary between the economic demands of the HCS, bureaucratic requirements of health insurance companies, hierarchical structures of doctors, the demands of relatives, and the human needs of those in need of care. Alternative forms of home-care organization promise positive effects on nurses³⁹ and should be evaluated in Germany. One possibility is time-based remuneration, which would allow providing situational and individualized care to people with care needs independent of contractually agreed services. Sufficient funding must be provided for the time units for registered nurses, so that deprofessionalization through the increased use of less qualified staff is prevented. A transfer of medical activities, such as prescription of wound material to registered nurses, could prevent some of the morally stressful situations and improve patient care quality.

Home-care nurses often have little support in dealing with morally stressful situations and therefore have to deal with it on their own. According to Tomura³² this “leaving issues unresolved coping style,” which the interviewees often reported, amplifies the frequency and intensity of moral distress. Thus, organizational ethical structures that are sensitive to possible morally stressful situations and home-care nurses’ moral distress need to be developed and strengthened as a whole to gain moral relief.⁴⁰ Targeted support and interventions that take effect directly in or in the aftermath of the morally stressful situation are therefore a priority.⁴¹ Managerial support is important.² Up to now, the interviewees have used primarily informal exchange opportunities with colleagues to process their experience of moral distress. The time resources for service and case discussions were—also in view of the COVID-19 pandemic—strongly reduced by HCS. Given the significance of social support, this trend should be reversed quickly. The expansion of these discussion formats to include ethical topics (e.g., introduction of ethics consultations or ethics cafés with corresponding refinancing by health insurers) is necessary. Further research should evaluate interventions to reduce moral distress, considering the conditions in HC. The specific group that experiences moral distress and the practice setting play important roles for the development and implementation of interventions necessary to prevent the harmful consequences of moral distress.⁵

Supplemental Material

Supplemental Material - Understanding moral distress in home-care nursing: An interview study

Supplemental Material for Understanding moral distress in home-care nursing: An interview study by Julia Petersen, Ulrike Rösler, Gabriele Meyer, Christiane Luderer in Nursing Ethics

Supplemental Material

Supplemental Material - Understanding moral distress in home-care nursing: An interview study

Supplemental Material for Understanding moral distress in home-care nursing: An interview study by Julia Petersen, Ulrike Rösler, Gabriele Meyer, Christiane Luderer in Nursing Ethics

Supplemental Material

Supplemental Material - Understanding moral distress in home-care nursing: An interview study

Supplemental Material for Understanding moral distress in home-care nursing: An interview study by Julia Petersen, Ulrike Rösler, Gabriele Meyer, Christiane Luderer in Nursing Ethics

Footnotes

Acknowledgements

We are grateful to the 20 home-care nurses who spoke openly about their experiences with moral distress and the participants of the International Graduate Academy of the Institute of Health and Nursing Science at the Martin Luther University Halle-Wittenberg for the collegial support and the exchange of experiences regarding aspects of the research topic and the methodological approach.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by The German Federal Institute of Occupational Safety and Health funded the data collection process and ensured the authors’ employment during the study (research project F2521).

ORCID iD

Julia Petersen

Supplemental Material

Supplemental material for this article is available online.

Note

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