Dying Patient and Family Contributions to Nurse Distress in the ICU

Abstract

Rationale: Caring for patients at the end of life is emotionally taxing and may contribute to burnout. Nevertheless, little is known about the factors associated with emotional distress in intensive care unit (ICU) nurses.

Objectives: To identify patient and family factors associated with nurses’ emotional distress in caring for dying patients in the ICU.

Methods: One hundred nurses who cared for 200 deceased ICU patients at two large academic medical centers in the Northeast United States were interviewed about patients’ psychological and physical symptoms, their reactions to those patient experiences (e.g., emotional distress), and perceived factors contributing to their emotional distress. Logistic regression analyses modeled nurses’ emotional distress as a function of patient symptoms and care.

Results: Patients’ overall quality of death (odds ratio [OR], 3.08; 95% confidence interval [CI], 1.31–7.25), suffering (OR, 2.34; CI, 1.03–5.29), and loss of dignity (OR, 2.95; CI, 1.19–7.29) were significantly associated with nurse emotional distress. Some 40.5% (79 of 195) of nurses identified families’ fears of patient death, and 34.4% (67 of 195) identified families’ unrealistic expectations as contributing to their own emotional distress.

Conclusions: Patients’ emotional distress, physical distress, and perceived quality of death are associated with nurse emotional distress. Unrealistic family expectations for the patient may be a source of nurse emotional distress. Improving patients’ quality of death, including enhancing their dignity, reducing their suffering, and promoting acceptance of an impending death among family members may improve the emotional health of nurses.

Nurses working in the intensive care unit (ICU) care for patients who are critically ill, many of whom will not survive. Caring for patients on life support is physically and emotionally taxing (1–3). Literature exists evaluating the moral distress, post-traumatic stress disorder symptoms, and burnout associated with care for those who are critically ill or at the end of life (EoL) (4, 5), but little information exists about the emotional distress or negative emotional reactions, such as fear, anger and anxiety, that critical care nurses experience.

ICU-related emotional distress differs from moral distress and grief. Moral distress, or stress related to ethical dilemmas, may result from issues such as cost containment, pain management, and the provision of futile care at the EoL (6), when nurses are compelled to provide care that they deem to be unethical (3). Moral distress has been linked to poor interprofessional communication and burnout among nurses (7, 8). However, moral distress pertains to only a limited number of patients in the ICU. Emotional distress, on the other hand, does not require an ethical quandary and therefore may be more common. Few studies have reported on grief in critical care nurses (9, 10) who have cared for dying patients. Yet, nurses rarely experience the profound interpersonal attachment to their patients required for a genuine grief reaction (11). Emotional distress has also been identified as an early sign of burnout syndrome (12).

Of all providers, nurses spend the most time at the bedside of their patients and are often the first to notice and respond to patients’ needs. They attend to subjectively reported symptoms, such as pain or dyspnea, but also are responsible for directly observing and treating signs of distress when patients are unable to report them. They recognize and treat aspects of patients’ psychosocial experience (13), including symptoms of depression, anxiety, suffering, and loss of dignity. Nurses in the ICU are often approached by family members and patients about these symptoms and asked to respond to them and are frequently present at the time of death. Nevertheless, most nurses lack specific training in EoL care (13, 14). These circumstances highlight the extent to which critical care nurses, as part of their routine work day, are exposed to the emotionally charged and stressful situation of caring for patients who are dying.

The emotional distress experienced by critical care nurses who care for dying patients remains poorly understood. Current literature focuses primarily on post-traumatic stress disorder symptoms and moral distress (5, 15–21). Here we examine nurses’ self-reported emotional distress in caring for ICU patients in the patients’ last week of life. We hypothesized that nurse-perceived patient physical and emotional symptoms, as well as medical diagnoses and interventions provided in the last week of life, would be associated with nurse emotional distress. We also identified nurse-reported contributions to their own emotional distress.

Methods

Study Design

From September 2015 to March 2017, data were collected from nurses to assess the quality of life of 200 patients who died in the medical ICU or cardiac care unit of New York Presbyterian Hospital/Weill Cornell Medical Center (NYPH) in Manhattan or the surgical ICU at the Brigham and Women’s Hospital in Boston. Nurses were interviewed to assess their perceptions of the quality of life in the patient’s last week (i.e., their quality of death) and their own emotional reactions to their patients’ experiences and care, because of an interest in examining how the provision of care to dying patients in the ICU might prove to be emotionally upsetting for the nurses providing such care. Data from the patients’ medical charts were abstracted to confirm clinical information about the patient and care that patients received in their final week in the ICU. Five decedents were excluded from this analysis because of insufficient survey data on nurses’ emotional distress. Institutional review board (IRB) approval was obtained from all participating study sites.

Staff screened consecutive patients who died in the medical ICU and cardiac care unit at New York Presbyterian Hospital/Weill Cornell or in the surgical ICU at Brigham and Women’s Hospital. Each week trained research staff reviewed medical charts to identify patients who had died in the prior week and nurses who cared for them for at least one 12-hour shift. Seventy patients were excluded because they were in the ICU for less than 24 hours and did not have a nurse who took care of them for an entire shift. A total of 96% (100 of 104) of the nurses approached agreed to participate. After obtaining their informed consent, nurses were individually interviewed in person. Nurse participation occurring outside of work hours was compensated with a $20 gift card.

Data Collection and Measures

Trained research staff conducted the structured clinical interview with the nurse within 3 weeks of the patient’s death. Nurses were asked about the decedent’s quality of death by asking, for example, “In your opinion, in the patient’s last week of life, how would you rate his/her quality of death?” Similar questions were posed regarding emotional distress, physical distress, and overall suffering during the patient’s final week of life. Nurses also rated more specific patient signs and symptoms. For example, “In the patient’s last week of life, to what extent was he/she sad/anxious/not at peace?” Nurses graded their responses on a 1 to 10 scale, with high scores indicating greater distress. Responses 8, 9, and 10 were classified as severe. The assessment built on the previously validated questions on patient quality of life in the last week of life (i.e., “overall psychological distress,” “overall physical distress,” and “overall quality of death”) (22).

In addition, nurses were asked about their own emotional state and contributing factors to their emotional distress. Specifically, nurses were asked “During the patient’s last week of life, while you were taking care of the patient, to what extent did you experience emotional distress?” They were also asked to select the factors that they thought contributed to their emotional distress. Nurses rated their responses on a 1 to 10 scale, with high scores indicating greater distress. Responses 8, 9, and 10 were classified as severe (23). Medical charts were reviewed to obtain patient demographic information, diagnoses, and care received in the patient’s last week. Finally, clinical and demographic data were abstracted from the patients’ charts.

Statistical Analysis

Descriptive statistics (e.g., means standard deviation [SD], frequency) were calculated for the sample characteristics, the patients’ quality-of-death measures, the nurses’ emotional distress, and the nurse-identified contributing factors. Logistic regression was used to model the nurses’ emotional distress as a function of patient symptoms and care. We found no evidence that care or procedures received by the patient in the last week of life confounded the association between patients’ symptoms and nurse emotional distress; therefore, we present unadjusted (i.e., bivariate) models. Data were modeled in HLM7 (two-level model accounting for nesting of patients within nurses). Statistical analyses were also conducted using SAS statistical software, version 9.4 (Cary, NC) and based on two-sided tests, with P < 0.05 considered statistically significant.

Results

Sample Characteristics

A total of 60.5% (118 of 195) of the patient sample was male, and the mean age at death was 66.9 (SD, 15.2) years. Some 69.7% (122 of 175) of patients were white, 14.3% (25 of 175) African American, and 13.1% (23 of 175) Asian American; 14.3% (22 of 154) of patients were of Hispanic descent. Mean length of stay in the ICU was 9.7 days (SD, 10.5 d). A total of 37.9% (74 of 195) of patients had active solid or hematologic malignancy, 30.8% (60 of 195) were admitted to the ICU for respiratory failure, and 12.8% (25 of 195) were admitted for sepsis or septic shock. A total of 78.8% (149 of 189) of patients had “Do Not Resuscitate” orders at the time of death (Tables 1 and 2). Nurses spent, on average, 2.3 shifts (SD, 0.9) with each decedent. A total of 34.2% of nurses were present at the patient’s death. NYPH IRB prevented collection of additional background information on nurses to maintain nurse anonymity.

Table 1.

Patients’ sample characteristics

	N	Measure
Continuous variables		Mean (SD)
Age, yr	195	66.9 (15.2)
Length of ICU stay, d	195	9.7 (10.6)
Categorical variables		n (%)
Sex, male	195	118 (60.5)
Race	175
White		122 (69.7)
African American		25 (14.3)
Asian American		23 (13.1)
More than one		5 (2.9)
Ethnicity, Latino	154	22 (14.3)
ICU	195
SICU		29 (14.9)
CCU		24 (12.3)
MICU		142 (72.8)
DNR completion	189	149 (78.8)
Advance directive completion	160	96 (60.0)

Definition of abbreviations: CCU = cardiac care unit; DNR = do not resuscitate; ICU = intensive care unit; MICU = medical intensive care unit; SD = standard deviation; SICU = surgical intensive care unit.

Reprinted by permission from Reference 41.

Table 2.

Patients’ conditions at intensive care unit intake (N = 195)

	n (%)
Admission diagnosis
Respiratory failure	60 (30.8)
Cardiac arrest	23 (11.8)
Other primary cardiac diagnosis	17 (8.7)
Sepsis/septic shock	25 (12.8)
Trauma	9 (4.6)
Cancer/malignancy	8 (4.1)
Hemorrhage	20 (10.3)
Neurological disorder	11 (5.6)
Other	22 (11.3)
Medical conditions
Active malignancy	74 (37.9)
Hematologic malignancy	39 (20.0)
COPD	16 (8.2)
Kidney disease	42 (21.5)
Liver disease	22 (11.3)

Definition of abbreviation: COPD = chronic obstructive pulmonary disease.

Associations between Patients’ Symptoms and Nurse Emotional Distress

Patient mental status

Most patients (136 of 192, 70.1%) had severe difficulty communicating: 63.2% (117 of 185) were asleep, 58.3% (74 of 127) were unconscious, 44.4% (52 of 117) were confused, and 32.4% (33 of 102) were delirious. None of these factors were significantly associated with nurses’ emotional distress (Table 3).

Table 3.

Nurse-reported patient signs and symptoms associated with nurses’ emotional distress

	n/N (%)	Nurses’ Emotional Distress
		OR	95% CI	P Value
Mental status (patient appears…)
Asleep	117/185 (63.2)	1.00	0.43–2.33	0.994
Unconscious	74/127 (58.3)	1.10	0.41–2.97	0.854
Confused	52/117 (44.4)	1.53	0.51–4.64	0.444
Delirious	33/102 (32.4)	1.59	0.50–5.12	0.426
Quality of death
Emotional distress	50/132 (37.9)	4.46	1.54–12.95	0.007
Physical distress	80/177 (45.2)	2.92	1.17–7.31	0.022
Overall quality of death	65/183 (35.5)	3.08	1.31–7.25	0.011
Suffering	78/186 (41.9)	2.34	1.03–5.29	0.042
Loss of dignity	58/163 (35.6)	2.95	1.19–7.29	0.020
Emotional distress (patient appears…)
Not at peace	41/166 (24.7)	2.82	1.16–6.87	0.023
To experience angst	25/136 (18.4)	3.70	1.21–11.30	0.022
Ashamed	15/116 (12.9)	1.81	0.43–7.65	0.416
To feel like a burden	23/117 (19.7)	1.23	0.35–4.31	0.746
Not accepting of death	32/108 (29.6)	1.05	0.33–3.32	0.938
Anxious	41/133 (30.8)	1.76	0.62–5.02	0.286
Nervous	36/99 (36.4)	2.90	0.80–10.46	0.102
Depressed	23/97 (23.7)	2.37	0.60–9.43	0.215
Sad	27/90 (30.0)	2.86	0.72–11.38	0.133
Scared of dying	17/71 (23.9)	3.35	0.77–14.60	0.105
To look forward to the end of suffering	32/73 (43.8)	0.27	0.05–1.58	0.142

Definition of abbreviations: CI = confidence interval; OR = odds ratio.

Indicators of severe symptoms (i.e., rated 8, 9, or 10 on a 10-point scale). N varies because of incomplete data.

Patient quality of death

A total of 35.5% (65 of 183) of patients were perceived by the nurses who cared for them to have a very poor quality of death. Poor perceived quality of death was associated with nurse emotional distress (odds ratio [OR], 3.08; 95% confidence interval [CI], 1.31–7.25). Some 45.2% (80 of 177) patients were perceived to have severe physical distress, and 37.9% (50 of 132) were perceived to have severe emotional distress (Table 3).

Patient emotional and physical distress

Patients’ perceived emotional distress (OR, 4.46; 95% CI, 1.54–12.95), physical distress (OR, 2.92; 95% CI, 1.17–7.31), suffering (OR, 2.34; 95% CI, 1.03–5.29), and loss of dignity (OR, 2.95; 95% CI, 1.19–7.29) were associated with nurses’ emotional distress. Nurse emotional distress was significantly positively associated with patients who appeared not at peace and those who appeared to have severe angst. Several physical symptoms were identified by nurses, such as trouble breathing, physical pain, and edema, but none of these patient physical symptoms were significantly associated with nurses’ emotional distress (Table 3).

ICU care patients received in their final week

Of the 195 decedents assessed, 167 (85.6%) received vasopressors, 157 (80.5%) were on mechanical ventilation, and 64 (32.8%) had cardiac resuscitation in their last week of life. None of these interventions was associated with severe emotional distress in the nurses (Table 4). A total of 76.2% (138 of 181) of patients were visited by a chaplain, 60% (96 of 160) had an advance directives, and 29.8% (54 of 181) had a palliative care consult (96% of which occurred in the ICU in the final week). However, none of these supportive care measures was associated with nurse emotional distress. Being present at the moment of death similarly had no association with nurse emotional distress. Withdrawal of life-sustaining therapy in 26.9% (50 of 186) of patients trended toward an association with decreased nurse emotional distress (P = 0.063) (Table 4).

Table 4.

Medical and supportive care received in the last week of life

	n/N (%)	Nurses’ Emotional Distress
		OR	95% CI	P Value
Medical care
Chemotherapy	16/74 (21.6)	2.23	0.69–7.26	0.180
Vasopressors	167/195 (85.6)	0.90	0.30–2.67	0.850
Dialysis	65/195 (33.3)	1.91	0.79–4.64	0.148
Mechanical ventilation	157/195 (80.5)	1.02	0.36–2.89	0.965
Feeding tube	121/195 (62.1)	1.35	0.56–3.25	0.501
Cardiac resuscitation	64/195 (32.8)	0.90	0.39–2.09	0.808
Surgical procedure	24/195 (12.3)	0.81	0.21–3.12	0.760
Withdrawal of life-sustaining therapy	50/186 (26.9)	0.36	0.12–1.06	0.063
Morphine	59/145 (40.7)	1.54	0.61–3.88	0.353
Supportive care
Hospital chaplain visit	138/181 (76.2)	0.90	0.34–2.34	0.821
Palliative care team consult	54/181 (29.8)	0.90	0.37–2.21	0.820
Nurse present at patient’s death	54/158 (34.2)	0.46	0.16–1.27	0.132

Definition of abbreviations: CI = confidence interval; OR = odds ratio.

N varies because of incomplete data.

Emotional Distress in Caring for Dying Patients

Among the nurse assessments of 195 deceased patients for whom they cared, 40.5% (n = 79) indicated that the family’s fear of the patient dying was a contributor to their emotional distress. Patients’ suffering (37.9%, n = 74) and unrealistic expectations of the family (34.4%, n = 67) were also identified as among the top contributors to nurses’ emotional distress (Table 5).

Table 5.

Nurses’ emotional distress (N = 195)

	n (%)
Severe emotional distress	38 (19.5)
Factors contributing to emotional distress
Unrealistic expectations of family	67 (34.4)
Unrealistic expectations of patient	8 (4.1)
Anger of family	25 (12.8)
Anger of patient	4 (2.1)
Family’s fear of patient dying	79 (40.5)
Patient’s fear of dying	8 (4.1)
Patient suffering	74 (37.9)
Patient suffering due to nurse care	25 (12.8)
Other	40 (20.5)

Discussion

We examined nurses’ experience of emotional distress in caring for ICU patients at the EoL. We identified multiple associations with nurse emotional distress, including the patients’ symptoms and perceived quality of death. Nurse-perceived emotional distress among patients during their last week of life was related to nurse emotional distress. Unsurprisingly, nurses were three times more likely to report severe emotional distress when they perceived that the patient had a poor quality of death. These data support prior findings of the association between a patient’s “good death” and the psychological impact, if not psychological harm or trauma, on the attending nurse (9). Severe patient distress and loss of dignity endured by the dying patients were associated with nurses’ emotional distress, perhaps by exacerbating feelings of helplessness or frustration at the inability to prevent suffering. The provision of “care and comfort” allows nurses to affect a patient’s quality of life positively when death is inevitable (24), and severe symptoms may be seen as a failure to provide comfort.

To date, research has not identified medical interventions in the last week of life that relate to nurse emotional distress. Nurses’ emotional distress in our study was not related to any particular patient diagnosis or medical intervention. Furthermore, interventions, such as a palliative care consult, focused primarily on patient comfort, and advanced directives, including Do Not Resuscitate orders, explicitly stating the patients’ wishes for EoL care had no association with nurse emotional distress. Although not statistically significant, withdrawal of life-sustaining therapy trended toward an association with less emotional distress in nurses. In the dying patient, allowing a natural death may be viewed by the nurse as providing comfort or an end to suffering.

Nurses report that families’ fear of their loved one dying contributes most significantly to nurses’ emotional distress—more than patient suffering itself. Unrealistic expectations of the family were also reported by nurses as contributing significantly to their distress. The care of the patient at the EoL also involves caring for his or her family, and this complex relationship has been explored in a few qualitative studies (9, 24–26). In one study, nurses reported that a close relationship with the families of dying patients impacted their “grief response” to the patient’s death (9). Our data highlight the importance of the nurse’s relationship with the patient’s family. Ensuring that families have realistic expectations and promoting clear and compassionate communication between the medical team and the family may mitigate ICU nurses’ emotional distress. Additional education and training for ICU nurses on EoL care may help nurses navigate these difficult situations (13). However, education alone seems unlikely to sufficiently address these complex issues. We must foster an ICU culture wherein addressing patients’ and families’ suffering is given equal attention as providing state-of-the art, technology-based care (27), what Costa and Moss, in this journal, recently termed “high-touch and high-tech” care (2). Recent randomized studies have sought to reduce the stress on families in the ICU through mindfulness, communication facilitators, palliative care consults, and nursing interventions (28–31), with mixed results. Nevertheless, further investigation into specifically nursing-led interventions to reduce patient and family suffering may also improve the emotional wellbeing of critical care nurses and reduce the ethical stress they endure.

Finally, much attention in recent years has been placed on ICU nurse burnout and its consequences (4, 12, 32). Although burnout has been described as “an inability to cope with emotional stress at work” (33), few empirical data exist on the factors leading to emotional distress in ICU nurses. Caring for patients at the EoL has been independently associated with burnout (4), such that decreasing burnout has been identified as an important outcome for improving EoL care (34). Our data suggest that improving the quality of death for the patient and improving communication with family may also improve the emotional impact of patient deaths on ICU nurses.

Our study results must be considered in the context of study strengths and limitations. We interviewed nurses about their patients’ as well as their own symptoms. Because the majority of patients at the EoL are unconscious or otherwise unable to self-report (35, 36), we had to either rely on their nurses to assess patient symptoms or exclude the majority of patients dying in our ICUs. The American Nurses Association’s definition of nursing includes the “facilitation of healing; alleviation of suffering through the diagnosis and treatment of human response” (13, 37), and nurses have been shown to assess accurately patients’ symptoms at the EoL (38). Using family members as proxies to identify symptoms when patients are unable to self-report has been suggested as an alternative to nurse report in the literature (39). But in this retrospective study, asking bereaved family for their recollection of patient suffering was impractical and seemed likely to be distressing. Another limitation of this study is the absence of demographic and work-specific data on our nurses. Work-related factors, such as professional demands and emotional support, may be related to nurse emotional distress (40). Our IRB prohibited the collection of those data to preserve confidentiality. Given the cross-sectional nature of this study, we cannot say conclusively that emotional distress and loss of dignity in the dying patients led to emotional distress in the nurse caring for them. An alternative interpretation might be that nurses saddened by their patients’ deaths may project that emotional distress onto their patients. Further prospective analyses could help confirm these findings. Last, nurses were asked to recall a patient’s death that occurred in prior weeks, subjecting their assessment to recall bias. Assessing patient symptoms after the patient’s death may lead to either over- or underestimating symptoms but seems to us unlikely to skew nurses’ reflections of their own emotional distress, minimizing the likelihood of recall bias influencing our results.

Study strengths include the inclusion of diverse patients from both medical and surgical ICUs and a high participation rate—96% of nurses approached consented to participate.

In conclusion, nurse-perceived severe symptoms of emotional distress and poor patient quality of death in the ICU are associated with emotional distress in ICU nurses caring for patients in their last week of life. In addition to patient suffering, families’ unrealistic expectations and fear of a loved one’s death significantly contribute to their own distress. These findings suggest that improving patients’ quality of death, including enhancing their dignity, reducing their suffering, and promoting acceptance of an impending death among family members, may improve the emotional health of nurses.