Barriers to End-of-Life Care in the Intensive Care Unit: Perceptions Vary by Level of Training,Discipline,and Institution

Abstract

Purpose:

Barriers to providing quality end-of-life (EOL) care in the intensive care unit (ICU) are common, but little is known about how these barriers vary by level of training or discipline.

Methods:

Medical residents and ICU fellows, attendings, and nurses at two teaching hospitals were surveyed about barriers to EOL care in the ICU. The survey consisted of questions about possible barriers in four domains: patient-family factors, clinician factors, institutional factors, and education-training factors.

Results:

There were significant differences in reported barriers to EOL care by level of training, discipline, and institution, particularly in the education-training domain. Insufficient resident training in EOL care was reported as a large or huge barrier by a smaller proportion of residents (20%) than attendings (62%), fellows (55%) or nurses (36%) (p=0.001). Nurses' perceptions of barriers to EOL care varied between institutions. Barriers that varied significantly between nurses included difficulty communicating due to language (p=0.008), and inadequate training in recognition of pain and anxiety (p=0.001).

Conclusions:

We found that perceived barriers to EOL care differed significantly by level of training, discipline and institution, suggesting the interventions to improve EOL care may need to be locally targeted and specific to level of training and discipline.

Introduction

Approximately 500,000 patients die in intensive care units (ICUs) in the United States each year.¹ Published surveys report family dissatisfaction with the care their loved ones received at the end of life (EOL) in the ICU. Concerns commonly identified include frequent pain and anxiety,^2–5 poor communication between ICU physicians and patients and their families,^6–8 and conflicting goals of care among clinicians and families.^9–11 Organizations including the Institute for Healthcare Improvement,¹² the Institute of Medicine,¹³ and the Robert Wood Johnson Foundation have identified EOL care as an area in need of improvement.¹⁴

In teaching hospitals, conversations regarding EOL care in the ICU are frequently conducted by residents.¹⁵ One study of family members of ICU patients reported no difference in satisfaction with communication provided by residents compared to more senior physicians, although overall satisfaction was poor.¹⁶ Studies have demonstrated that appropriate training in caring for patients at EOL is lacking.^17–21 A survey of physician and nurse ICU directors in the United States found that almost 40% of respondents reported inadequate clinician training in EOL communication was a “huge” or “large” barrier to providing high-quality EOL care.²² The survey did not address if the perceived deficit was specific to the level of training or discipline of the clinician. Nurses and residents commonly spend more time at the bedside of ICU patients, and therefore their perceptions of barriers to providing excellent EOL care may differ from one another and from supervising physicians. Understanding if there are important differences in perceived barriers to providing quality EOL care may be essential in designing interventions that will improve care for patients and their families. In order to identify training- and discipline-based barriers, we developed and administered a survey to ICU nurses, attendings, and physicians in training.

Materials and Methods

Instrument development

The Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in EOL Care Project developed and validated a survey instrument to explore barriers to optimal EOL care in the ICU.¹⁴ The survey has three domains: patient/family factors (nine items), institutional factors (twelve items), and clinician factors (eleven items), and was used in a prior study of barriers to EOL care in the ICU.²² This survey used a five-point Likert-like scale to assess the extent to which the factor was a barrier. Responses may range from one (not a barrier) to five (a huge barrier). This survey did not evaluate education and training factors as barriers to EOL care. Using this previously published survey as a construct, we added a fourth domain (nine items) to evaluate the perception of education and training factors as barriers to EOL care. To assess clarity and reproducibility of the responses to these survey questions, the survey was administered to attendings who were not respondents in the study. Suggestions to improve content and/or clarity of the questions were incorporated into the final survey.

Survey administration

The survey was administered at New York University School of Medicine–Bellevue Hospital Center (BHC) and The Warren Alpert Medical School of Brown University–Rhode Island Hospital (RIH). The survey was administered to residents in internal medicine who had rotated through the medical ICU, fellows in pulmonary and critical care medicine, medical ICU attendings, and medical ICU nurses. All responses were kept confidential and participation was voluntary.

Institutional Review Board (IRB) approval

This study was approved by the New York University School of Medicine IRB (approval for 08-581) and Lifespan IRB (approval for 0239-08).

Data analysis

Statistical analyses were performed with Stata statistical software version 10.0 (StataCorp., College Station, TX). Response rates were compared among groups using a likelihood ratio chi-square or Fisher's exact test statistic where appropriate. Responses to questions using the five-point Likert scale were dichotomized to responses indicating the factor is a large or huge barrier and responses indicating the factor is a moderate barrier, small barrier, or not a barrier at all. The dichotomized responses are reported as a proportion. We considered p<0.05 to be significant in statistical analysis.

Results

Within the two institutions, the survey was given to a total of 125 residents, 20 fellows, 13 attendings, and 60 nurses. The medical ICUs in both hospitals are “closed” ICUs: when a patient is admitted or transferred to the ICU, the ICU team becomes the primary team for the patient. At the time of survey administration BHC was in the process of initiating a palliative care consultative service, and many of the physicians-in-training, nurses, and attendings were not yet aware of this. RIH had no palliative care consultation service available. Table 1 describes the survey response rates. The overall response rate was 76%. Tables 2 –5 report the data for all respondents from both institutions by level of training and discipline.

Table 1.

Survey Response Rate

	Rhode Island Hospital n (%)	Bellevue Hospital Center n (%)
Residents	20/49 (40)	62/86 (72)
Fellows	6/6 (100)	14/14 (100)
Attendings	6/6 (100)	7/7 (100)
Nurses	24/30 (80)	27/30 (90)

Table 2.

Patient and Family Factors: Percentage of All Respondents Reporting Factor as Large/Huge Barrier

	Residents % n=82	Fellows % n=20	Attendings % n=13	Nurses % n=51	p-value^*
Patient or family expectations about prognosis or effectiveness of ICU care are unrealistic	43	25	46	41	0.51
Patients cannot participate in EOL decisions	61	70	69	57	0.70
Patients lack advance directives	67	75	69	46	0.05
Family members disagree about goals of care	21	15	38	41	0.03
No surrogate decision maker	35	65	38	45	0.11
Disagreements between families/patients and ICU	22	20	23	44	0.04
Patients/families refuse to forgo life-sustaining treatments for religious reasons	5	5	8	20	0.04
Communication with patients/families due to language	19	40	0	59	0.004
Cultural beliefs about death and dying	10	30	23	25	0.04

Proportions were compared using chi-square.

EOL, end of life; ICU, Intensive care unit.

Table 3.

Institutional Factors: Percentage of All Respondents Reporting Factor as Large/Huge Barrier

	Residents % n=82	Fellows % n=20	Attendings % n=13	Nurses % n=51	p-value^*
Lack of space for meeting with families of ICU patients	3	5	7	11	0.25
There is no palliative care service to which a dying patient can be transferred	17	15	23	34	0.14
Patients admitted to the ICU are not predicted to survive a critical illness	3	5	9	2	0.42
There is a “technological imperative” in the ICU to add or continue life-sustaining therapies	14	10	8	22	0.55
There is insufficient recognition among staff or institutional leadership of the importance of optimal EOL care in the ICU	12	25	25	13	0.33
There is inadequate support for grieving families	15	20	17	22	0.71
Advance directives are difficult to locate	19	20	31	25	0.64
Availability of consultants with expertise in the management of symptoms distressing to ICU patients	8	10	8	20	0.17
Attending physician staffing patterns lead to insufficient continuity of care	10	5	8	24	0.08
Resident staffing patterns lead to insufficient continuity of care	6	15	31	29	0.001
Nursing staffing patterns lead to insufficient continuity of care	6	0	8	24	0.007
There is insufficient continuity of care when a patient is transferred to the ICU	6	20	15	16	0.1

Proportions were compared using chi-square.

EOL, end of life; ICU, intensive care unit

Table 4.

Clinician Factors: Percentage of All Respondents Reporting Factor as Large/Huge Barrier

	Residents % n=82	Fellows % n=20	Attendings % n=13	Nurses % n=51	p-value ^*
There are competing demands for your time	27	25	31	44	0.20
Communication between the ICU team and patients/families regarding appropriate goals of care is inadequate	19	20	31	29	0.44
There is fear of legal liability for forgoing or withdrawing life-sustaining treatment	12	20	8	30	0.06
Clinicians on ICU team have unrealistic expectations about patient prognosis or effectiveness of ICU care	4	10	8	18	0.04
Consulting physicians have unrealistic expectations about patient prognosis or effectiveness of ICU care	9	15	15	22	0.15
Communication between ICU team and other clinicians about appropriate goals of care is inadequate	9	10	8	30	0.02
Clinicians are reluctant to use opiates or sedative because of concerns about side effects	4	5	8	12	0.25
Providing care to dying patients is psychologically and emotionally stressful	11	10	15	26	0.13
There is fear of legal liability for administering opiates or sedatives to dying patients	4	5	8	16	0.08
There is insufficient attention to differences in cultural norms and customs with respect to dying, death, and grief	7	20	23	14	0.13
There is inadequate communication within the ICU team regarding appropriate goals of care	5	20	15	20	0.02

Proportions were compared using chi-square.

ICU, intensive care unit.

Table 5.

Education/Training Factors: Percentage of All Respondents Reporting Factor as Large/Huge Barrier

	Residents % n=82	Fellows % n=20	Attendings % n=13	Nurses % n=51	p-value^*
There is inadequate training for resident physicians in communication skills in EOL care	20	55	62	36	0.001
There is inadequate training for nurses in communication skills in EOL care	18	37	31	30	0.19
You have not received sufficient education in communication skills in EOL care	12	20	17	22	0.47
There is inadequate emphasis placed upon communication skills in the ICU curriculum	13	45	23	34	0.004
Attendings do too little “role modeling” of EOL care discussions with patients/families	9	25	27	22	0.04
There is inadequate training for physicians in recognition of pain, anxiety or distress in patients dying in the ICU	12	15	23	32	0.05
There is inadequate training for nurses in recognition of pain, anxiety or distress in patients dying in the ICU	6	21	33	20	0.01
You have not received sufficient education in recognition of pain and discomfort in the dying patient	7	20	16	18	0.15
You have not received sufficient education in techniques for withdrawing or forgoing life-sustaining treatments without patient suffering	16	25	0	18	0.28

Proportions were compared using chi-square.

EOL, end of life; ICU, intensive care unit.

Table 2 describes data for factors that may be barriers to providing optimal EOL care in the patient and family domain. More than a quarter of all the respondents described four of the nine factors in this category to be large/huge barriers to EOL care. Two factors in particular, “patients cannot participate in EOL discussions” and “patients lack advance directives” were reported as large/huge barriers by greater than 60% of residents, fellows, and attendings. Barriers that varied significantly by level of training/discipline were “patients lack advance directives” (p=0.05) and those related to religion, language, and culture (p=0.04, p=0.004, p=0.04 respectively).

The data for factors in the institutional and clinician domains are reported in Tables 3 and 4. Overall, the proportion of respondents reporting these factors as large/huge barriers to EOL care was lower than the patient/family factors and education/training factors, with almost all responses being less than 30%. However there was some variation in the reporting of these barriers as large/huge by level of training or discipline. Almost one-third of nurses reported that “communication between the ICU team and other clinicians about appropriate goals of care is inadequate” was a large/huge barrier, compared to only 9% of residents, 10% of fellows, and 8% of attendings (p=0.02). Inadequate communication within the ICU team was reported as a large/huge barrier by 20% of fellows and nurses, 15% of attendings, but only 5% of residents (p=0.02). Other factors that varied significantly by level of training/discipline were those involving continuity of care and unrealistic clinician expectations.

Table 5 summarizes the results of the education/training domain, of which five of the nine factors varied significantly by level of training/discipline. The factor that varied the most in responses was “inadequate training for resident physicians in communication skills in EOL care.” Only 20% of residents reported this as a large/huge barrier, compared to 62% of attendings, 55% of fellows, and 36% of nurses (p=0.001). Almost 50% of fellows reported “inadequate emphasis placed on communication skills in the ICU curriculum” as a large/huge barrier compared to only 13% of residents, 23% of attendings, and 34% of nurses (p=0.004). Adequacy of training of physicians and nurses in recognition of pain, anxiety, and distress in dying patients were also factors in which responses varied significantly by level of training/discipline. Although only 9% of residents reported that “attendings do too little ‘role modeling’ of EOL care discussions with patients/families” as a large/huge barrier, 27% of attendings perceived it as one (p=0.04).

Table 6 reports the large/huge barriers described by nurses and residents across the two institutions. Comparing residents between institutions revealed little variation in reporting factors as large/huge barriers to EOL care. Approximately 20% of residents at both BHC and RIH reported “inadequate training for resident physicians in communication skills in EOL care” as a large or huge barrier (p=0.95). More residents at BHC reported “there is inadequate support for grieving families” than at RIH (20% versus 0%, p=0.03).

Table 6.

Institutional Differences in Perceived Barriers: Percentage of Residents or Nurses Reporting Factor as Large/Huge Barrier

	Residents			Nurses
	BHC n=20	RIH n=62	p-value ^*	BHC n=27	RIH n=24	p-value ^*
PATIENT/FAMILY FACTORS
Patient or family expectations about prognosis or effectiveness of ICU care are unrealistic	44	40	1.0	41	42	1.0
Patients cannot participate in EOL decisions	63	55	0.60	59	54	0.78
Patients lack advance directives	71	55	0.27	46	46	1.0
Family members disagree about goals of care	19	26	0.53	44	38	0.78
There is no surrogate decision maker for patients lacking decisional capacity	40	20	0.11	52	38	0.40
Disagreements between families/patients and ICU team about goals of care	24	15	0.54	42	46	1.0
Patients/families refused to forgo life-sustaining treatments for religious reasons	6	0	0.59	35	4	0.01
Communication with patients/families due to language	20	15	0.75	56	17	0.008
Cultural beliefs about death and dying	10	10	1.0	38	9	0.02
INSTITUTIONAL FACTORS
Lack of space for meeting with families of ICU patients	5	0	1.0	7	17	0.40
There is no palliative care service to which a dying patient can be transferred	10	40	0.004	27	42	0.37
Patients admitted to the ICU are not predicted to survive a critical illness	2	6	0.40	4	0	1.0
There is a “technological imperative” in the ICU to add or continue life-sustaining therapies	15	11	1.0	11	33	0.09
There is insufficient recognition among staff or institutional leadership of theimportance of optimal EOL care in the ICU	15	5	0.44	15	13	1.0
There is inadequate support for grieving families	20	0	0.03	38	4	0.005
Advance directives are difficult to locate	20	15	0.75	37	13	0.06
Availability of consultants with expertise in the management of symptoms distressing to ICU patients	7	10	0.64	30	9	0.15
Attending physician staffing patterns lead to insufficient continuity of care	6	20	0.09	19	29	0.51
Resident staffing patterns lead to insufficient continuity of care	6	5	1.0	41	17	0.07
Nursing staffing patterns lead to insufficient continuity of care	6	5	1.0	41	4	0.003
There is insufficient continuity of care when a patient is transferred to the ICU	8	0	0.33	30	0	0.005
CLINICIAN FACTORS
There are competing demands for your time	26	30	0.77	46	42	0.78
Communication between the ICU team and patients/families regarding appropriate goals of care is inadequate	20	15	0.75	42	14	0.05
There is fear of legal liability for forgoing or withdrawing life-sustaining treatment	13	10	1.0	38	21	0.22
Clinicians on the ICU team have unrealistic expectations about patient prognosis or effectiveness of ICU care	3	5	1.0	31	4	0.02
Consulting physicians have unrealistic expectations about patient prognosis or effectiveness of ICU care	10	5	1.0	23	21	1.0
Communication between the ICU team and other clinicians about appropriate goals of care is inadequate	10	5	1.0	42	13	0.02
Clinicians are reluctant to use opiates or sedative because of concerns about side Effects	5	0	1.0	15	8	0.67
Providing care to dying patients is psychologically and emotionally stressful	10	15	0.68	35	17	0.20
There is fear of legal liability for administering opiates or sedatives to dying patients	5	0	0.57	23	8	0.25
There is insufficient attention to differences in cultural norms and customs with respect to dying, death, and grief	6	10	0.63	23	4	0.10
There is inadequate communication within the ICU team regarding appropriate goals of care	5	5	1.0	38	0	0.001
EDUCATION/TRAINING FACTORS
There is inadequate training for resident physicians in communication skills in EOL care	19	20	0.95	46	25	0.15
There is inadequate training for nurses in communication skills in EOL care	21	10	0.50	50	8	0.002
You have not received sufficient education in communication skills in EOL care	13	10	1.0	35	8	0.04
There is inadequate emphasis placed upon communication skills in the ICU Curriculum	13	15	1.0	58	8	<0.001
Attending physicians do too little “role modeling” of EOL discussions with patients/families	11	0	0.19	38	4	0.006
There is inadequate training for physicians in recognition of pain, anxiety, or distress in patients dying in the ICU	13	11	1.0	50	13	0.006
There is inadequate training for nurses in recognition of pain, anxiety, or distress in patients dying in the ICU	7	5	1.0	38	0	0.001
You have not received sufficient education in recognition of pain and discomfort in the dying patient	6	10	0.63	35	0	0.002
You have not received sufficient education in techniques for withdrawing or forgoing life-sustaining treatments without patient suffering	19	5	0.17	35	0	0.002

Proportions were compared using chi-square.

EOL, end of life; ICU, intensive care unit.

There were significant differences between BHC and RIH in the proportion of nurses that reported factors as large/huge barriers to EOL care. More than half of the nurses at BHC reported that “communication with patients/families due to language” was a large/huge barrier as opposed to only 17% of the nurses at RIH (p=0.008). At BHC, 38% of nurses felt that “cultural beliefs about death and dying” was a large/huge barrier versus only 9% of nurses at RIH. More than one-third of nurses at BHC reported that “inadequate communication within the ICU team regarding appropriate goals of care” was a large/huge barrier, but none of the nurses from RIH reported this as a large/huge barrier. The majority of the differences between BHC nurses and RIH nurses, however, were found in the education/training factors category. Half of the nurses at BHC felt that “inadequate training for nurses in communication skills in EOL care” was a large/huge barrier, compared to only 8% of nurses at RIH. Due to the small number of fellows and attendings in this study, we were unable to evaluate inter-institutional differences in their responses.

Discussion

To our knowledge, this is the first study aimed at identifying perceived barriers to optimal EOL care based on level of physician training or by discipline. We found that there were significant differences in perceived barriers based on one's level of training or discipline and major differences among nurses between institutions. As is reported in the literature, many respondents, regardless of level of training or discipline, identified the lack of patient involvement in EOL care decisions, their lack of advance directives, and the unrealistic expectations of patients or their families regarding prognosis or effectiveness of high-level care as major barriers.^22–23 There were significant differences in perceived barriers by level of training or discipline related to patients' and families' religion or language. None of the attendings (compared to the other training groups) reported that language was a major barrier. One potential explanation for this is that residents and nurses spend more time at the bedside than attendings and may have more opportunity to observe language as a barrier between the ICU team, the patient, and the family. These findings are of particular interest given recent literature suggesting families with language discordance may receive less information and emotional support from ICU physicians during family conferences.²⁴

In the clinician and institutional categories, nurses had a higher rate of reporting that “nursing staffing patterns lead to insufficient continuity of care,” and more nurses and attendings reported “resident staffing patterns lead to insufficient continuity of care” as major barriers than did residents or fellows. This suggests that increased attention to ICU staffing patterns might improve the quality of EOL care. Another area where there were significant differences among the disciplines or among clinicians with various levels of training was communication within the ICU team and with other clinicians. These aspects of communication were more commonly reported by nurses as major barriers than by any of the physician groups. Given the fast pace of the ICU environment, these results may arise from nurses' awareness of inconsistencies in implementation of the care plan established for patients.

The perception that educational and training factors are large or huge barriers to EOL care was the domain that varied the most by level of training and discipline. There was a common perception among attendings and fellows that resident training in EOL care communication is insufficient, which is in stark contrast to the low proportion of residents who reported this as a barrier. There are a variety of possibilities that may explain this dichotomy. It may be that residents fail to recognize their limitations in this area, or they feel they receive sufficient informal training about EOL care communication during their ICU months or other rotations. Conversely, it is feasible that attendings and fellows feel that resident training is insufficient simply because they are lower on the “training ladder.” In other words, more-senior physicians may feel that because residents are more junior, they have neither received enough training nor accumulated enough experience in communicating with patients and families at EOL. In a similar way, residents rarely reported that attendings “do too little role modeling in EOL care discussions,” whereas more attendings and fellows reported this as a large or huge barrier. This difference may reflect what attendings and fellows perceive to be their own shortcomings in training resident physicians.

In response to the discordant findings among physicians, and because residents reported their lack of education in recognition and treatment of symptoms was a large barrier to EOL care, one possible intervention would be to initiate an ICU EOL care curriculum. One way of providing this is to incorporate the Education for Physicians on End-of-Life Care (EPEC) modules within residency and fellowship training programs. This curriculum was developed in 1999, is supported by the American Medical Association, and has become readily available online or by attending the biannual conference. EPEC provides both education in palliative care skills and in “training the trainers,” so that attendees can become educators of these important skills.

Perhaps one of the most striking findings in this study, however, was the institutional differences in perceived barriers by nursing staff. Overall, nurses at BHC perceived more factors to be large or huge factors compared to RIH nurses. It is important to elucidate the etiology of these differences in order to reduce the barriers to providing high-quality EOL care. One difference that likely has a major impact on nursing perceptions involves the ICU culture. The medical ICU at RIH has received a citation for the Circle of Life Award from the American Hospital Association, given for excellence and innovation in EOL care, and has achieved an organizational culture that actively involves all caregivers, including nurses, pharmacists, nutritionists, physicians, and patients and their families in the care planning process. Part of this organizational culture includes unrestricted visiting hours, a policy that a family meeting must occur within 24 hours of ICU admission, an understanding that rounds will not begin without the patient's bedside nurse, frequent interdisciplinary meetings regarding EOL issues, and staffing patterns that lead to continuity of nursing care when a patient is near EOL. The existence of this type of ICU organizational culture may result in fewer perceived barriers to optimal EOL care. At the time of the survey, BHC nurses had not received formal EOL care training as part of their ongoing curriculum. Some of the large or huge barriers reported by BHC nurses were those involving communication and recognition of pain, anxiety, and distress at EOL. Interventions to reduce these kinds of barriers are feasible, because there are numerous resources that provide education regarding communication and symptom recognition, such as the End-of-Life Nursing Education Consortium (ELNEC) curriculum.²⁵ Other areas that were described as large or huge barriers by BHC nurses relate to patients' or families' language, religion, and culture. This likely reflects the extreme diversity in patient populations served at BHC, and this may be a more difficult barrier to overcome.^26–30 Institutions that serve diverse patient populations may need to increase the availability of in-person interpreters and provide crosscultural training to overcome these barriers.

Although this study reports important information regarding perceived barriers to providing quality EOL care, those who did not respond to the survey may have differing perceptions, which may bias the results. This was also a small study involving two institutions in the northeastern United States, and it is possible that institutions in other regions would find different barriers than what we found. We believe that, despite the limitations, our results point out the large disparity in the perception of barriers to providing high-quality EOL care based on ICU discipline and level of training. Furthermore, the study supports the suggestion that organizational culture in the ICU may have an impact on caregivers in regard to barriers in providing EOL care.

One way to further evaluate the effect of the ICU organizational culture on perceived barriers to EOL care would be to conduct further surveys regarding perceived barriers at institutions where ICU rounds are interdisciplinary and compare the results to those institutions where rounds are made only by the ICU physicians. This type of study would expand upon the results of our data and make it applicable to more ICUs.

Importantly, neither of the hospitals in this study had active palliative care consultative services available at the time of the study. Given that families report dissatisfaction with the care their loved ones receive in the ICU at EOL and our data showing that many of those involved in providing that care feel they lack the skills to recognize and treat symptoms at EOL, the impact of a palliative care consult service may be profound. The palliative care service at BHC is now multifaceted and includes a psychologist, social worker, art therapist, child life specialists, and chaplains, and has become so busy it will need to expand to keep up with the demand. We hope to reevaluate the perceived barriers to EOL care now that this service has become such an integral part of the care for the ICU patients at BHC.

In conclusion, we have identified important perceived barriers to providing optimal EOL care in the ICU, which varied significantly by clinician level of training, discipline, and institution. Further studies are needed to better describe provider perceptions and attitudes in order to improve the quality of EOL care.

Footnotes

Acknowledgments

We would like to acknowledge Joe Phillips, MD, for his help with data acquisition and Elizabeth Ross, MD, for her help with manuscript preparation.

Author Disclosure Statement

None of the authors have any conflicts of interest to disclose. No competing financial interests exist.

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