BACKGROUND AND OBJECTIVES

To longitudinally examine the nature of moral distress (MoD) experienced by clinicians caring for extremely low gestational age neonates.

METHODS

Neonatologists, medical trainees, and nurses were surveyed at regular intervals on their experience of MoD and their preferred level of care in relation to 99 neonates born <28 weeks’ gestational age managed from birth until discharge or death in 2 tertiary NICUs. Clinicians reporting significant distress (≥6 of 10 on Wocial’s Moral Distress Thermometer) were asked to provide open-ended responses on why they experienced MoD. Descriptive statistics were used to analyze frequency and intensity of MoD across different clinician characteristics. Open-ended responses were analyzed by using mixed methods.

RESULTS

Over 18 months, 4593 of 5332 surveys (86% response rate) were collected. MoD was reported on 687 (15%) survey occasions; 91% of neonates elicited MoD during their hospitalization. In their open-ended answers, clinicians invoked 5 main themes to explain their distress: (1) infant-centered reasons (83%), including illness severity, predicted outcomes, and disproportionate care; (2) management plans (26%); (3) family-centered reasons (19%); (4) parental decision-making (16%); and (5) provider-centered reasons (15%). MoD was strongly associated with the perception of “parents wanting too much.” Neonatologists experienced less distress and were more likely than nurses and trainees to align preferred levels of care with family wishes.

CONCLUSIONS

The majority of preterm infants will generate some MoD; however, it is rarely shared and of a sustained nature. The main constraint reported by clinicians was “parents wanting too much,” leading to disproportionate care.

What’s Known on This Subject:

Moral distress (MoD) is experienced when clinicians feel constrained to provide care they believe is not in a patient’s interests. No longitudinal studies on MoD in relation to predictions of death and disability exist.

What This Study Adds:

Most preterm infants generate a report of MoD during their NICU admission. However sustained, shared MoD is infrequent. Constraints reported were mainly “parents wanting too much,” leading to reports of disproportionate care.

The NICU is a challenging environment where advancing technology, critically ill patients, medical uncertainty, and differing values contribute to tension around patient care. Moral distress (MoD) most commonly results when clinicians feel constrained to provide (often burdensome) care they believe not to be in the patient’s interests, because of factors outside of their control.1,2  MoD is associated with burnout, poor job retention, and likely adverse patient outcomes.35  Yet, in most investigations, researchers have examined clinicians’ perspectives at a single point in time.68  These investigations do not optimally describe the changing nature of MoD in relation to the clinical trajectory of individual patients or the dynamics within a treating team. Indeed, MoD felt by clinicians caring for a critically ill patient may change from day to day. This evolution of MoD (in response to patient factors and clinician factors and with reference to the views of other clinicians and family members) has never before been mapped. Understanding the process is essential to facilitate development of timely, effective interventions. In this study, we therefore aim to describe the nature of MoD experienced by the cohort of NICU clinicians in response to the changing clinical course of preterm infants.

We aimed to follow the experiences of clinicians caring for 100 neonates born <28 weeks’ gestational age admitted consecutively to The Royal Women’s Hospital (RWH) NICU in Melbourne, Australia, from birth until death or discharge from tertiary-level care. The RWH is a 59-bed tertiary-care NICU accommodating >1600 admissions per year, including ∼90 infants born <28 weeks’ gestational age. Neonates requiring transfer for surgery or high frequency jet ventilation continued to be managed at The Royal Children’s Hospital (RCH), a 35-bed quaternary center. The RCH accepts >850 referrals per year, of which ∼40 are preterm infants born <28 weeks’ gestational age requiring specialist services for complications of prematurity.

On days 0, 1, 3, 5, 7, 10, 14, 21, and 28 and fortnightly thereafter (or weekly if still ventilated), neonatal diagnoses and interventions were collected. Neonatal intervention Scores9  were calculated to reflect illness severity. Deaths were classified according to physiologic stability at the time of demise in accordance with the definitions provided by Verhagen et al.10 

On each of the designated data-collection days, a neonatologist, fellow, resident, and nurse were asked to complete a confidential iPad-based survey (Supplemental Information) regarding a specific infant under their care. Clinicians were asked whether they experienced MoD (standard definition provided); if yes, they were asked to indicate its intensity using Wocial’s Moral Distress Thermometer11  (MDT) (range = 0–10). Those who indicated they had no MoD were assigned a 0 on the MDT scale. If MoD was of ≥6 of 10 intensity, 50% of participants (sampled at random by computer generation) were asked why they experienced MoD. They were invited to provide an open-ended response, in which multiple reasons could be provided. We elected to only survey a subset of clinicians to explain their reason for MoD to minimize participant fatigue. Before study commencement, a cutoff MDT score of 6 of 10 was chosen to capture the most morally distressing circumstances.

The survey then asked participants, “All things considered, do you believe this patient should receive (1) comfort care (definition provided) (2) life-sustaining interventions without escalation, or (3) life-sustaining interventions without restrictions (level of care would be increased if required)?” Clinicians’ perspectives of the family’s preferred level of care were similarly obtained.

Descriptive statistics were used to investigate the relationship between both frequency and intensity of MoD and clinician characteristics (including years of experience, satisfaction with ethical training, parenthood, and exposure to people with a disability) and infant factors (demographics, interventions, and diagnoses). Measures of mean intensity of MoD were only calculated from surveyed occasions in which MoD was reported.

Answers to open-ended questions were analyzed by using thematic analysis.12  Codes were developed simultaneously and independently by 2 investigators (T.M.P. and A.J.). By using a qualitative content analysis approach, themes, subthemes, and coding definitions were developed, agreed on, and rigorously defined by the investigators. Then, coding of each question was completed independently by 2 investigators (T.M.P. and L.G.). Discrepancies were resolved by involving a third researcher (A.J.), and consensus among the 3 investigators was achieved. By using mixed methods, the frequency of each theme was described.

Prospective written consent was obtained from participating clinicians before the start of the study. All parents of recruited preterm neonates were provided with written information and the opportunity to opt out before the collection and use of neonatal data. Ethics approval was granted at both participating centers.

One patient (corresponding to 3 clinician surveys) was excluded because of early demise before consent for neonatal data collection was obtained (see Fig 1). Of the 99 neonates included, the mean gestational age was 25 weeks and 6 days and mean birth weight was 823 g (Table 1). Thirteen neonates died: 6 were physiologically unstable10  and died either on a ventilator or after removal of the endotracheal tube, when death was considered imminent; 7 were physiologically stable and died after life-sustaining interventions were discontinued for quality-of-life reasons. Deaths occurred at a median age of 11 days (range 1–91 days). Sixteen neonates were transferred to the RCH for complications of prematurity.

FIGURE 1

Flow diagram of study participants.

FIGURE 1

Flow diagram of study participants.

Close modal
TABLE 1

Neonatal Demographics

N = 99
Gestation, wk, mean (SD) 25 + 6 (1.3) 
Birth wt, g, mean (SD) 823 (188) 
SNAP-II, mean (SD) 23.6 (13.8) 
SNAPPE-II, mean (SD) 44.7 (22.3) 
Neonatal Intervention Score d first 24 h, mean (SD) 14.8 (4.1) 
Sex: male, % 49 
Complete antenatal steroids ≥2 doses, % 68 
Apgar score at 1 min, mean (SD) 3.8 (2.3) 
Apgar score at 5 min, mean (SD) 6.3 (2.3) 
Apgar score at 10 min, mean (SD) 7.6 (1.8) 
N = 99
Gestation, wk, mean (SD) 25 + 6 (1.3) 
Birth wt, g, mean (SD) 823 (188) 
SNAP-II, mean (SD) 23.6 (13.8) 
SNAPPE-II, mean (SD) 44.7 (22.3) 
Neonatal Intervention Score d first 24 h, mean (SD) 14.8 (4.1) 
Sex: male, % 49 
Complete antenatal steroids ≥2 doses, % 68 
Apgar score at 1 min, mean (SD) 3.8 (2.3) 
Apgar score at 5 min, mean (SD) 6.3 (2.3) 
Apgar score at 10 min, mean (SD) 7.6 (1.8) 

SNAP-II, Score for Neonatal Acute Physiology – Version II; SNAPPE-II, Score for Neonatal Acute Physiology, Perinatal Extension - Version II.

A total of 525 clinicians consented to participate across the 2 centers (24 neonatologists, 34 fellows, 82 residents, and 386 nurses). Two nurses declined to participate. All doctors consented (99.6% consent rate overall). A total 407 clinicians caring for the 99 infants at the designated data-collection time points were subsequently approached in accordance with the study protocol and completed 4593 of 5332 surveys (86% response rate) between May 2016 and December 2017 (Fig 1). Ninety-one percent of participants were female. Clinician demographics were similar across the 2 institutions (Table 2).

TABLE 2

Demographic Data for Consented Participants by Institution

RWHRCH
NeonatologistFellowResidentNurseNeonatologistFellowResidentNurseTotal
N 13 20 50 248 11 14 31 138 525 
Sex, n (%)          
 Male 8 (62) 2 (10) 14 (28) 2 (1) 6 (55) 3 (21) 10 (32) 4 (3) 46 (9) 
 Female 5 (38) 18 (90) 36 (72) 246 (99) 5 (45) 11 (79) 21 (68) 134 (97) 479 (91) 
Religion, n (%)          
 Atheist or agnostic 7 (54) 12 (60) 29 (58) 130 (54) 7 (64) 9 (64) 15 (52) 82 (59) 292 (56) 
 Christian or Catholic 5 (38) 7 (35) 11 (26) 98 (40) 4 (36) 3 (22) 11 (35) 54 (39) 196 (38) 
 Other 1 (8) 1 (5) 8 (16) 14 (6) 2 (14) 4 (12) 2 (2) 31 (5) 
Median education PhD or MD Bachelora Bachelora Bachelor PhD or MD Bachelora Bachelora Bachelor — 
Median neonatal experience, y 16–20 3–5 <1 6–10 11–15 3–5 1–2 6–10 — 
Work environment, n (%)          
 NICU only 60 (25) 62 (45) 122 (23) 
 SCN only 29 (12) 22 (16) 51 (10) 
 NICU and SCN 13 (100) 20 (100) 50 (100) 153 (63) 11 (100) 14 (100) 31 (100) 54 (39) 346 (67) 
 Identify as a parent 10 (77) 5 (25) 6 (12) 112 (46) 9 (82) 3 (21) 9 (29) 39 (28) 193 (37) 
 Personal exposure to disability 7 (54) 5 (25) 5 (10) 38 (16) 2 (18) 6 (43) 10 (32) 27 (20) 100 (19) 
 Satisfaction with ethics exposure during training 5 (38) 12 (60) 21 (42) 113 (47) 7 (64) 6 (43) 18 (58) 60 (43) 242 (47) 
RWHRCH
NeonatologistFellowResidentNurseNeonatologistFellowResidentNurseTotal
N 13 20 50 248 11 14 31 138 525 
Sex, n (%)          
 Male 8 (62) 2 (10) 14 (28) 2 (1) 6 (55) 3 (21) 10 (32) 4 (3) 46 (9) 
 Female 5 (38) 18 (90) 36 (72) 246 (99) 5 (45) 11 (79) 21 (68) 134 (97) 479 (91) 
Religion, n (%)          
 Atheist or agnostic 7 (54) 12 (60) 29 (58) 130 (54) 7 (64) 9 (64) 15 (52) 82 (59) 292 (56) 
 Christian or Catholic 5 (38) 7 (35) 11 (26) 98 (40) 4 (36) 3 (22) 11 (35) 54 (39) 196 (38) 
 Other 1 (8) 1 (5) 8 (16) 14 (6) 2 (14) 4 (12) 2 (2) 31 (5) 
Median education PhD or MD Bachelora Bachelora Bachelor PhD or MD Bachelora Bachelora Bachelor — 
Median neonatal experience, y 16–20 3–5 <1 6–10 11–15 3–5 1–2 6–10 — 
Work environment, n (%)          
 NICU only 60 (25) 62 (45) 122 (23) 
 SCN only 29 (12) 22 (16) 51 (10) 
 NICU and SCN 13 (100) 20 (100) 50 (100) 153 (63) 11 (100) 14 (100) 31 (100) 54 (39) 346 (67) 
 Identify as a parent 10 (77) 5 (25) 6 (12) 112 (46) 9 (82) 3 (21) 9 (29) 39 (28) 193 (37) 
 Personal exposure to disability 7 (54) 5 (25) 5 (10) 38 (16) 2 (18) 6 (43) 10 (32) 27 (20) 100 (19) 
 Satisfaction with ethics exposure during training 5 (38) 12 (60) 21 (42) 113 (47) 7 (64) 6 (43) 18 (58) 60 (43) 242 (47) 

SCN, special care nursery; —, not applicable.

a

Bachelor or medical degree.

Overall, MoD occurred on 687 of 4589 (15%) of survey occasions. When clinicians reported MoD, the average intensity of distress was 5.0 on MDT (SD 2.2); 274 of 687 (39%) clinicians reported significant MoD (defined as ≥6 on MDT). One-half of these clinicians were randomly chosen to respond to an open-ended question about the cause of their MoD. The average intensity of MoD experienced across the cohort did not vary significantly throughout the days of admission (Supplemental Fig 3). However, in general, there was a decreasing proportion of reported MoD with days of admission. Days 1 and 7 each had ∼20% of surveys reporting MoD; day 98 had the lowest rate at 5.6%. Later data (particularly after day 140) were skewed by the relatively few infants (and hence surveys) after this time and the proportionately increased illness severity of those remaining patients relative to the rest of the patient cohort (data are presented in Supplemental Fig 4).

During the independent thematic analysis, initial intercoder agreement was 96%; all disagreements (4%) were then resolved. When describing why they experienced MoD (124 responses analyzed), clinicians invoked 5 main themes (percentages are expressed as percentages of responses; participants may have invoked >1 theme): (1) infant-centered reasons (83%, n = 103), including illness severity and poor predicted outcomes leading to estimations of disproportionate care; (2) management plans (26%, n = 32); (3) family-centered reasons (19%, n = 24); (4) parental decision-making (16%, n = 20); and (5) provider-centered reasons (15%, n = 18).

Infant-Centered Reasons

A concern for the clinical state of the infant was the theme most invoked (83%, n = 103), with a focus on disproportionate care or “doing too much.” Clinicians explained that the burden of intensive therapy outweighed the benefits of treatment, many invoking the best interests of the child. Approximately half, 44% (n = 55) referred to the acute illness severity of the child, believing that survival was unlikely, and 10% (n = 12) stated the infant would die. Poor predicted neurodevelopmental outcomes or quality of life (46%, n = 57) were of equal clinical concern. The term “extreme prematurity” or only a gestational age value was reported in 27% (n = 33) of responses, often in isolation without any further explanation (see Table 3 for example responses).

TABLE 3

Examples of Infant-Centered Reasons Accounting for MoD

Neonatologist: “I believe that the long-term outcome does not warrant the financial and emotional waste/trauma that ensuring survival for this baby will bring.” 
Fellow: “Medical intervention goes beyond the best interest of the baby. Very unlikely to survive without severe disabilities. Are we prolonging suffering?” 
Nurse: “This baby has had poor results on cranial ultrasound which I believe may lead to poor neurological outcomes in the future. I believe it is in her best interest to not escalate care when considering her quality of life.” 
Resident: “He is a very small baby, 23+ weeks.” 
Nurse: “Extreme prematurity.” 
Nurse: “23-weeker.” 
Neonatologist: “I believe that the long-term outcome does not warrant the financial and emotional waste/trauma that ensuring survival for this baby will bring.” 
Fellow: “Medical intervention goes beyond the best interest of the baby. Very unlikely to survive without severe disabilities. Are we prolonging suffering?” 
Nurse: “This baby has had poor results on cranial ultrasound which I believe may lead to poor neurological outcomes in the future. I believe it is in her best interest to not escalate care when considering her quality of life.” 
Resident: “He is a very small baby, 23+ weeks.” 
Nurse: “Extreme prematurity.” 
Nurse: “23-weeker.” 

Management Plans

Dissatisfaction with the treatment plan or the absence of a plan was reported in 26% (n = 32) of cases. Decisional regret was noted 7% (n = 8) of the time (Table 4).

TABLE 4

Examples of Management Plan Reasons for MoD

Fellow: “Very labile blood pressure and concerned re-escalation to 4 inotropes with no plan regarding when we would limit intervention.” 
Resident: “Ongoing deteriorations. No antenatal steroids. No resus at birth post antenatal counselling and no fetal HR at 5 min, sudden change of plan at 5 min of life…” 
Fellow: “Very labile blood pressure and concerned re-escalation to 4 inotropes with no plan regarding when we would limit intervention.” 
Resident: “Ongoing deteriorations. No antenatal steroids. No resus at birth post antenatal counselling and no fetal HR at 5 min, sudden change of plan at 5 min of life…” 

HR, heart rate; resus, resuscitation.

Family-Centered Reasons

Family circumstances, including social difficulties or tragic circumstances, were identified in 19% (n = 24) of responses. These circumstances may have impacted the family’s ability to participate in end-of-life decision-making (Table 5). Tragic circumstances were also perceived to impact the long-term wellbeing of the child.

TABLE 5

Examples of Family-Centered Reasons Accounting for MoD

Nurse: “Due to the context of the delivery, and that the mother is in ICU herself, unaware that her baby is so critically unwell with no ability to make decisions.” 
Nurse: “Very young parents and receiving supports from their own grandmother themselves. The future development of this baby depends on how much input given by the parents as well.” 
Nurse: “Due to the context of the delivery, and that the mother is in ICU herself, unaware that her baby is so critically unwell with no ability to make decisions.” 
Nurse: “Very young parents and receiving supports from their own grandmother themselves. The future development of this baby depends on how much input given by the parents as well.” 

Parental Decision-making

The family was referenced as a constraint in 16% (n = 20) of surveys, either directly “through wanting too much” (10%, n = 12) and refusing recommendations to limit life-sustaining interventions, or more passively, through a lack of engagement (3%, n = 4) or capacity (5%, n = 6) (Table 6).

TABLE 6

Examples of Parental Decision-making Contributing to MoD

Fellow: “Difference between parents’ wishes and parents impression and ideas of outcome of baby and actual best interest of baby, multiple underlying comorbidities, difficult to establish plan for direction of care because parents always re-escalate their wishes of direction of care again after de-escalation.” 
Nurse: “Very unwell baby. Parents do not want to redirect care, but baby is dying.” 
Fellow: “I feel that the infant has a very poor prognosis, but it has been a shock to the parents and they are currently considering comfort care. I believe that they will redirect to comfort care given time.” 
Resident: “[I] feel the developmental outcomes likely to be poor and parents do not appear engaged with care. I wonder whether the parents know the full implications of the long-term outcomes.” 
Fellow: “Difference between parents’ wishes and parents impression and ideas of outcome of baby and actual best interest of baby, multiple underlying comorbidities, difficult to establish plan for direction of care because parents always re-escalate their wishes of direction of care again after de-escalation.” 
Nurse: “Very unwell baby. Parents do not want to redirect care, but baby is dying.” 
Fellow: “I feel that the infant has a very poor prognosis, but it has been a shock to the parents and they are currently considering comfort care. I believe that they will redirect to comfort care given time.” 
Resident: “[I] feel the developmental outcomes likely to be poor and parents do not appear engaged with care. I wonder whether the parents know the full implications of the long-term outcomes.” 

Provider Focused

Internal reflections or personal struggles were identified in 15% (n = 18) of responses, including the discomfort or dealing with uncertainty and complexity. Almost all (17 of 18) of these responses were by medical trainees (Table 7).

TABLE 7

Provider-Focused MoD

Fellow: “I struggle[d] with the decision to offer this baby intensive care from the outset. However, her relatively stable course makes me question this decision and wonder what I’ll do when next faced with this decision.” 
Fellow: “I struggle[d] with the decision to offer this baby intensive care from the outset. However, her relatively stable course makes me question this decision and wonder what I’ll do when next faced with this decision.” 

Neonatologists reported fewer morally distressing experiences (6.4%) than fellows (19.6%), residents (17.5%), and nurses (16.9%). However, a greater proportion of individual neonatologists were affected by MoD at some point during the study period (78%) compared with nurses (36%). Experience of MoD was variably experienced across years of employment in the NICU (Table 8). Those in their first year of employment in the NICU and those who had worked for >15 years appeared to experience reduced frequency and intensity of MoD. Clinicians without children were also more likely to experience MoD in terms of frequency (17%) and intensity (mean 5.1, SD 2.2) than those with children (11%, mean 4.8, SD 2.2). However, personally knowing someone with a disability or satisfaction with ethics training had no influence on MoD.

TABLE 8

Frequency and Intensity of MoD According to Demographic

Demographic and GroupNo. Completed SurveysProportion of Surveys in Which MoD Was Experienced, %Intensity of MoD When MoD Was Experienced, Mean (SD)
Profession    
 Nurse 1167 16.9 5.4 (2.1) 
 Resident 1122 17.5 4.8 (2.2) 
 Fellow 1118 19.6 5.2 (2.2) 
 Neonatologist 1182 6.3 4.0 (1.9) 
Years of experience in NICU    
 <1 1189 16.4 4.3 (2) 
 1–2 321 23.4 4.8 (1.9) 
 3–5 1018 21 5.7 (2.2) 
 6–10 903 10.6 5.1 (2.1) 
 11–15 156 19.2 5.4 (2.4) 
 16–20 541 5.7 5.1 (2) 
 >20 404 9.4 4.6 (2.4) 
Has children    
 Yes 1677 11 4.8 (2.2) 
 No 2861 17.3 5.1 (2.19) 
Personal experience with disability    
 Yes 900 15 4.8 (2.2) 
 No 3638 15.4 5.1 (2.2) 
Satisfaction with ethics training    
 Yes 2078 14.9 5.4 (2.2) 
 No 2459 15.1 4.7 (2.1) 
Demographic and GroupNo. Completed SurveysProportion of Surveys in Which MoD Was Experienced, %Intensity of MoD When MoD Was Experienced, Mean (SD)
Profession    
 Nurse 1167 16.9 5.4 (2.1) 
 Resident 1122 17.5 4.8 (2.2) 
 Fellow 1118 19.6 5.2 (2.2) 
 Neonatologist 1182 6.3 4.0 (1.9) 
Years of experience in NICU    
 <1 1189 16.4 4.3 (2) 
 1–2 321 23.4 4.8 (1.9) 
 3–5 1018 21 5.7 (2.2) 
 6–10 903 10.6 5.1 (2.1) 
 11–15 156 19.2 5.4 (2.4) 
 16–20 541 5.7 5.1 (2) 
 >20 404 9.4 4.6 (2.4) 
Has children    
 Yes 1677 11 4.8 (2.2) 
 No 2861 17.3 5.1 (2.19) 
Personal experience with disability    
 Yes 900 15 4.8 (2.2) 
 No 3638 15.4 5.1 (2.2) 
Satisfaction with ethics training    
 Yes 2078 14.9 5.4 (2.2) 
 No 2459 15.1 4.7 (2.1) 

Most infants (92%) generated at least 1 report of MoD; 75% generated ≥2 reports of MoD, and 69% generated ≥3 reports. One infant generated 59 reports of MoD (Fig 2). On all but 3 survey days, this infant remained above the 75th percentile for Neonatal Intervention Scores for the intensity of interventions and burden of care. This infant, despite many predictions of death by clinicians who experienced MoD, ultimately survived to discharge. Clinicians were not homogeneous in their experiences of MoD. There were only 13 survey days (for 5 infants) during which all 4 clinicians caring for an infant expressed MoD on the same day and were concordant in their experiences of MoD. These infants generated a slightly greater intensity of MoD (mean 6.0, SD 1.2) when MoD was reported compared with the rest of the population (mean 5.0, SD 2.1). Each of these infants had a different clinical trajectory and elicited unique patterns of MoD. Thus, a clear evolution of MoD with respect to patient illness severity and time could not be described because of the heterogeneity of the data and the day-to-day variation in the clinicians surveyed.

FIGURE 2

Proportion of infants associated with reports of MoD (total N = 99).

FIGURE 2

Proportion of infants associated with reports of MoD (total N = 99).

Close modal

In 42% (289 of 687) of surveys reporting MoD, survival was perceived not to be in the patient’s best interests. In 47% (322 or 687) of surveys reporting MoD, clinicians judged that the infant should receive either comfort care (18%, 125 of 687) or intensive care with some limitations (29%, 197 of 687). However, in most (89%, 612 of 687) cases of MoD, neonates were receiving ongoing intensive care without limitations in alignment with parental wishes.

Despite variability in MoD experience, clinicians generally agreed on preferred levels of care. In only 8.5% (252 of 2956) of occasions, neonatologists recommended full intensive care, whereas other clinicians wished for intensive care with limitations. In a further 2% (50 of 2956) of occasions, neonatologists preferred full intensive care, whereas others preferred comfort care. However, these occasions were associated with MoD in 117 of 252 (46%) and 38 of 50 (76%) of occasions, respectively.

Perceived disagreements with family about the appropriate level of care for patients were infrequent (6%) but strongly correlated with (24%, or 166 of 687) reports of MoD. The strongest level of disagreement, in which clinicians preferred comfort care and believed that family wanted life-sustaining interventions without any limitations, occurred in only 2% of the surveys, but these occasions resulted in almost universal (78 of 83, 94%) MoD among clinicians. Intensity of MoD was also higher (mean 4.0, SD 3.2) in these situations (parents perceived to “want too much”) compared with consensus (mean 0.4, SD 1.4). On only 8 survey occasions, related to 3 patients, did all clinicians agree that parents “wanted too much.” (Two of these patients died; the third was discharged to level 2 care on day 164.) In contrast, the belief that parents “wanted too little” (ie, parents perceived to want comfort or palliative care for their child, whereas the clinicians recommended ongoing intensive care) was extremely rare, occurring in only 21 surveys (0.5%). Neonatologists’ preferred level of care aligned with the family’s wishes more often (76.4%) than did the rest of the clinical team (54.9%).

The results of this study may not be generalizable to other institutions, particularly where there are markedly different patient cohorts, cultural norms, and ethical climates. However, the 2 institutions chosen were different in their primary patient cohorts (one perinatal and one surgical) and have different leadership teams. The study did not demonstrate important differences in ethical climate and MoD between the institutions.

This is the first longitudinal study examining MoD of clinicians in response to the clinical trajectory of patients. Following 99 infants over an 18-month period (4593 time points) has enabled a more nuanced account of MoD that considers the influence of patient factors in real time, the consistency of expression of MoD across provider groups, and the evolution of MoD over time in relation to the changing clinical state of patients. This approach highlights the complex dynamics of MoD and provides considerations for the type and timing of interventions that will be most effective in reducing the negative consequences of MoD.

MoD is recognized to be prevalent in acute care settings,13,14  yet, over an 18-month period, MoD was experienced only 15% of the time in relation to the extremely preterm population. Although there is extensive literature reporting the ethical challenges around the care of preterm infants and the potential prejudices that exist,15  in practice, most preterm infants do not generate sustained or substantial MoD.

When MoD is experienced, the belief that clinicians are providing disproportionate care remains a central but not isolated cause. In this study, gestational age was often used alone to justify the experience of MoD without reference to the patient’s broader clinical context. Furthermore, assessments of a patient’s interests appeared not to be limited to the patient’s clinical status but also reflected the social circumstances or perceived parental level of engagement or capacity to care for the infant after hospital discharge.

Notably, MoD due to negative interactions with other clinicians (either perceived incompetence or discordance within the treating team) was absent from the open-ended recorded responses. This was despite neonatologists preferring a more intensive level of care than nurses and medical trainees on 11% of occasions. Given that the literature on MoD has historically been focused on the experience of the morally distressed trainee doctor or nurse in response to the physician’s management plan, this finding is significant. The shift in clinical decision-making to a shared or family-centered model appears to have altered the model of MoD whereby the families, rather than the neonatologists, may be viewed as the “constrainers” or source of conflict.16  This naturally raises ethical questions about who should decide when there is decision-making conflict between clinicians and families17  and how we can assist clinicians in determining if the provision of life-sustaining interventions remains within the zone of parental discretion18  (the zone in which parents have a right to exercise their decision-making authority). A willingness to accept the role of parents in decision-making and recognize the subjectivity and value judgments underlying assessments of patient interests may, in part, explain the reduced MoD reported in neonatologists; neonatologists reported more frequent concordance with family wishes, even when they personally did not believe that survival was in the patient’s best interests. This dynamic is, however, complex to untangle. The reduced levels of MoD in neonatologists may also be explained by (among other things) their greater level of involvement in the decisions being made and therefore their more complete understanding of the families’ wishes and goals. If bedside nurses have not been privy to the shared decisions, they may be concerned about the degree to which present suffering and future implications for the infant have been discussed and understood by the family.

The complexity of the dynamics of MoD is also highlighted by the significant heterogeneity in the expression of MoD among clinicians in relation to the same patient. That 91 of 99 infants generated at least 1 report of MoD should prompt us to pause and reflect on when and how we should respond to MoD and highlights the subjectivity of the value judgments underlying assessments of patients’ interests. It was also rare for all those caring for the same infant to experience MoD at the same time. It may be tempting to consider that MoD is of greater moral significance when it is “shared” among multiple clinicians; that is, that the more prevalent the MoD, the greater the likelihood that the moral judgment underlying the distress is “correct.” However, the experience of MoD is dependent on moral sensitivity rather than indicating “rightness” of moral judgment. Whether a clinician’s views are shared by others or experienced in isolation should not impact their ability to voice their concerns and know that they will be heard. We should not assume that judgments about “disproportionate care” are correct simply because of the number of clinicians that experience MoD; we need due process of encouraging critical and reflective practice. It is important to recognize that a high proportion of patients (74 of 91) only had 1 or 2 reports of MoD and that the moral concerns were quickly resolved.

It may be suggested that the low number of reports indicating conflicts within team members in this cohort likely reflects good team communication during periods of medical uncertainty. Although disagreements among clinicians with respect to the treatment plan were recorded, the survey did not explore the content of conversations or whether or how disagreements were managed. It is possible that some clinicians suffered in silence, whereas others engaged in more overt “conflict scenarios.” That some participants appreciated completing surveys and sought out opportunities to complete surveys as a way of expressing their concern or disagreement raises the possibility that not all clinicians felt empowered to raise their concerns directly during clinical care or feel heard if they did. This survey may also have been an intervention that decreased MoD in itself.

This longitudinal account has highlighted the heterogeneity and complexity of the concept of MoD. Interventions to address MoD should therefore be multifaceted. An ethics framework is necessary to assist clinicians in assessing whether the provision of life-sustaining interventions falls within the zone of parental discretion, irrespective of their own personal views. However, it is important to note that satisfaction with ethics education during training did not protect against MoD. This supports current research suggesting education may increase moral awareness and sensitivity and thereby increase MoD.19  Residents may be particularly at risk from increased moral awareness because they may have not yet developed the clinical experience to appreciate the fallibility of their judgments or personally witnessed the value and meaning that patients with significant disabilities can bring to their families and society. Teaching reflective practice would enable clinicians to consider the subjectivity of their own judgments. A supportive ethical climate is essential. Clinicians should be supported in raising and exploring their concerns in a safe environment. However, clinicians must remember that having their opinion heard will not necessarily result in an alteration in management. Supporting clinicians in reflective practice is especially important within the first couple of years of practice as they shift from trusting the views of their superiors to gaining their own experience and formulating their own views. Residents, in particular, shared their uncertainty around decision-making, particularly if patients displayed a clinical trajectory that differed from their earlier predictions. Shared decision-making is often incredibly complex, and universal agreement about what the best path forward is will not always be clear and may change with time. Building resilience may assist in reducing the negative effects of MoD when various team members must agree to disagree.20 

MoD is an infrequent but important form of clinician distress. The belief that infants are receiving overly burdensome treatments remains a central cause of MoD. However, a shift in the decision-making paradigm has resulted in the fact that parents are now viewed as a form of constraint. The experience of MoD in teams is also complex and heterogeneous. Future research into MoD interventions should explore ensuring clinicians feel heard and supported to critically reflect on the subjectivity of perceived interests and the permissibility of parental decision-making.

Dr Prentice conceptualized and designed the study, designed the data-collection instruments, collected the data, and drafted the initial manuscript; Drs Davis, Gillam and Janvier all contributed to the conceptualization and design of the study, reviewed and revised the manuscript, and provided supervision to the primary author; Dr Donath contributed to statistical analysis and review of the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Deidentified individual participant data will not be made available.

FUNDING: Dr Prentice has received a National Health and Medical Research Council postgraduate scholarship (1150839) to support this research.

COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2021-051029.

     
  • MDT

    Moral Distress Thermometer (Wocial’s)

  •  
  • MoD

    moral distress

  •  
  • RCH

    The Royal Children’s Hospital

  •  
  • RWH

    The Royal Women’s Hospital

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

Supplementary data