A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness

Abstract

Background:

Clinicians need to deliver prognostic information to surrogates of nondecisional, critically ill patients so that surrogates can make informed medical decisions that reflect the patient’s values. Our objective was to implement a new approach for communicating with surrogates of patients with chronic critical illness.

Methods:

Surrogate decision makers of patients who were difficult to liberate from mechanical ventilation were prospectively enrolled. Surrogates met with different members of the intensive care unit treatment team for sequential 15-minute appointments to receive patient-specific assessments and education on chronic critical illness. The feasibility and acceptability of this approach were determined. A 24-question comprehension instrument was developed to assess a participant’s understanding that a family member was displaying features of chronic critical illness. Each question was scored from 1 to 5, with larger scores indicating greater comprehension.

Results:

Over a 15-week period, educational sessions for 9 mechanically ventilated patients were conducted. On average, 2 surrogates per patient (range: 1-4) and 6 members of the interdisciplinary team (range: 4-6) were at each meeting. Surrogates and clinicians had very positive impressions of the communication intervention. The average preintervention comprehension score was 85 of 120 (standard deviation [SD]: 8, range: 71-101). The postintervention comprehension score was greater by 5 points on average (SD: 9, range: −11 to +20 points, P = .04).

Conclusions:

Surrogates of critically ill patients approved of this novel communication approach and had a greater understanding of the patient’s medical condition after the intervention.

Keywords

chronic critical illness prolonged mechanical ventilation shared decision-making

Introduction

Advancements in critical care medicine have led to a reduction in intensive care unit (ICU) mortality rates. Concurrently, the number of adults discharged from ICUs with chronic critical illness has increased.¹ Chronic critical illness can be viewed as a syndrome with characteristic features, which may include mechanical ventilator dependence, neuromuscular weakness, hormonal disorders, malnutrition, anasarca, skin breakdown, confusion, anxiety, depression, and other distressing symptoms.² Although many patients with chronic critical illness survive an ICU stay, these patients often reside in health-care facilities for many months after ICU discharge and their 1-year mortality rate is greater than 50%.^3,4

When patients require mechanical ventilatory support, their surrogates are often responsible for making their medical decisions. A face-to-face meeting has been recommended as a primary way for clinicians and the patient’s surrogates to engage in the shared decision-making process.^5
-7 One of the main goals of these meetings is for a clinician to communicate his or her expectations for the patient’s recovery if life-sustaining care is continued. However, evidence is scarce on how to best achieve this goal and information exchange is often inadequate.⁸ This may be one reason surrogates are typically more optimistic than physicians with regard to their expectations for patients’ chances of survival and quality of life during recovery.^9
-11 Consequently, many patients may receive aggressive life-sustaining care for prolonged periods of time despite there being only a small chance they will regain a good quality of life.

In this pilot study, we developed a communication approach to ensure that clinicians would deliver essential prognostic information to surrogates of patients who were being considered for tracheostomy placement for prolonged ventilator weaning. With our approach, we also sought to convey to surrogates that the patient was transitioning from an early to a chronic phase of critical illness by inviting the clinicians who typically care for patients recovering from critical illness to communicate directly with the patient’s surrogates.² In addition to determining whether this approach was feasible and acceptable to all participants, we sought to measure the surrogates’ understanding of the patient’s medical condition before and after the intervention.

Methods

Study Design and Participants

This study was conducted at Rush University Medical Center, Chicago, Illinois, a 664-bed, university-affiliated, urban teaching hospital. We prospectively enrolled surrogate decision makers of non-decisional, mechanically ventilated patients for whom the primary ICU team was considering tracheostomy placement. The institutional review board of Rush University Medical Center approved this study.

Designing the Communication and Educational Intervention

Sixteen clinicians and researchers from Rush University Medical Center formed an interprofessional, multidisciplinary chronic critical illness working group. After group discussion and literature review, multiple educational topics were identified that surrogate decision makers could view as important but that they may not always receive at the time a patient is being considered for tracheostomy.^11
-13 We categorized each educational topic as relating primarily to one of 7 clinical disciplines: critical care medicine, respiratory therapy, speech and language pathology, nutritional therapy, physical/occupational therapy, palliative care medicine, and social services. The intervention was designed to be a face-to-face educational session between clinicians from these disciplines and surrogate decision makers. The primary goals of the intervention were for the participating interdisciplinary clinicians to speak to the different domains of care and to describe the challenges similar patients face during recovery.

Specialty-specific educational material on chronic critical illness was prepared by our working group and reviewed by experts from each discipline. Multiple clinicians from each clinical discipline were recruited to participate in this communication intervention. Sessions were scheduled for 10 to 15 minutes with each participating interdisciplinary clinician, for a total anticipated meeting time of approximately 90 minutes. In order to standardize the information provided to surrogates, “discussion scripts” were developed for each discipline (Supplemental Data File 1).

Designing the Measurement Instrument

After review of the literature, our chronic critical illness working group determined that there was no commonly available tool to measure a subject’s understanding of a family member’s critical illness. Nelson et al. identified 18 topics that families viewed as important when making decisions for patients with chronic critical illness.¹¹ We used these topics and those in a validated printed brochure on chronic critical illness as the framework for developing a novel comprehension instrument.¹² Critical care clinicians (n = 10) and surrogates of patients residing at a long-term acute care hospital (n = 10) reviewed the tool for content, clarity, and accuracy to establish face validity. We used their suggestions to finalize a 24-question comprehension instrument with responses based on a 5-point Likert scale (Supplemental Data File 2). Responses were coded (or reverse coded) with higher scores reflecting greater understanding that the patient was displaying a specific feature of chronic critical illness. The questions were written at an eighth grade educational level.

Implementing the Communication Intervention

Patients in the adult medical ICU who received invasive mechanical ventilation via endotracheal tube were prospectively screened. At the time the ICU team was considering tracheostomy placement, we approached each available surrogate decision maker for informed consent if he or she met the following inclusion criteria: at least 18 years of age, identified him/herself as participating directly in health-care decision-making for the incapable patient under Illinois law and agreed to come to the hospital for a 2-hour educational and feedback session. We excluded surrogates from participation if the patient possessed decisional capacity at the time of enrollment, the patient would be receiving a tracheostomy for management of a progressive neuromuscular disorder, or the patient’s attending physician did not permit us to approach the patient’s surrogate. Surrogates were also excluded from consideration if they did not speak English or had a clinically important neurological disorder such as dementia. We excluded surrogates if informed consent was not obtained prior to the patient being successfully extubated, receiving a tracheostomy, or transitioning to comfort care.

Once the surrogate(s) committed to a 90-minute meeting date and time, we asked a team member from each clinical discipline to commit to meet with the surrogate(s) for a 15-minute time slot. Table 1 displays the organization and discussion topics of the 90-minute sessions. On the day of the meeting, each clinician was asked to review the patient’s medical record and gather patient-specific information from the primary ICU team. Clinicians were provided with a “discussion script” to guide their interaction with the surrogate(s) (Supplemental Data File 1). If a clinician from a specific discipline was not able to participate in the educational session, the discussion topics were communicated by the participating critical care medicine team member.

Table 1.

Organization and Discussion Topics of the Communication Intervention.^a

Meeting Number (Duration)	Clinician/Subject	Discussion Topics
Introduction (5 minutes)	Critical care medicine	Purpose of the research study
1 (10 minutes)	Critical care medicine	The likelihood that the patient will develop new medical issues over the next year
		The likelihood that the patient will return to the hospital with new health problems over the next year
		The likelihood that the patient will survive the current hospitalization
		The likelihood that the patient will be alive in 1 year
2 (10 minutes)	Respiratory therapy	Reasons it has been difficult to liberate the patient from the mechanical ventilator
		The likelihood that the patient will require a mechanical ventilator for at least the next week
		Reasons a tracheostomy may be recommended
		The likelihood that the patient will ever come off the breathing machine
3 (10 minutes)	Speech therapy	The likelihood that the patient will have difficulty speaking over the next month
3 (10 minutes)	Speech therapy	The likelihood that the patient will have difficulty eating over the next month
4 (10 minutes)	Nutrition therapy	Assessment of the patient’s current nutritional status
		Discussion of how nutrition will play a role in the patient’s recovery
		The likelihood that the patient will require a feeding tube
5 (10 minutes)	Physical and occupational therapy	The likelihood that the patient will have difficulty with mobility over the next year
5 (10 minutes)	Physical and occupational therapy	The likelihood that the patient will have difficulty with complex thinking over the next year
6 (10 minutes)	Case management	The likelihood that the patient will be discharged to a rehabilitation hospital including a long-term acute care hospital (LTACH)
6 (10 minutes)	Case management	The types of medical services that will likely be covered by the patient’s medical insurance
7 (15 minutes)	Palliative care	Assessment of whether the patient is having issues with pain or anxiety and how the team is addressing these issues
		The likelihood that the patient will have a good quality of life over the next year
		Discussion of the responsibilities of the physician and surrogates with respect to regular communication regarding goals of care
		The likelihood that the patient’s caregivers will have new physical and mental health issues over the next year (caregiver overload)

^a The order of the meetings was modified based on clinician availability.

Measurements and Statistical Analysis

Demographic and ICU variables were recorded for each patient. Each surrogate was also asked to provide his or her demographic information prior to the intervention. We determined the intervention’s feasibility by measuring the number of meetings that occurred relative to the number of surrogates who were approached for informed consent. We also noted the number of different clinicians who were able to be present at each meeting. Surrogate acceptability of the intervention was determined by post-intervention survey.

Our secondary outcome was a surrogate’s change in 24-question comprehension instrument score after the communication intervention (Supplemental Data File 2). Each question was scored from 1 to 5, with larger scores indicating greater comprehension. The total score, ranging from 24 to 120 points, represented a global understanding of the patient’s condition. A participant’s pre- and post-total scores were compared using a paired t test. We expected a point difference/standard deviation (SD) ratio of 2/3. Using a 2-sided type I error probability of .05 (significance level) and 80% power for the calculation, we enrolled 18 surrogate makers. Cohen d was computed to obtain a standardized estimate of effect size. In brief, Cohen d values of 0.2, 0.5, and 0.8 are considered small, medium, and large effects, respectively. Cronbach α was computed to determine the internal consistency reliability for the scale at pre- and postintervention.

Results

During a 15-week period from July 2017 to November 2017, there were 20 mechanically ventilated patients in the medical ICU whom we identified at the time that the primary medical team discussed the possibility of tracheostomy placement with the patient’s surrogate decision makers (Figure 1). Surrogates for 5 of these patients were not approached because 1 patient possessed decisional capacity, 2 patients received tracheostomies for the progression of chronic neuromuscular diseases, and the attending physician recommended that we did not approach the patient’s surrogate decision maker in 2 cases. All available surrogate decision makers for the remaining 15 patients were invited to participate in our study. We enrolled at least 1 surrogate decision maker for 9 (60%) patients. The surrogates for 2 (13%) of 15 patients canceled the meeting after it had been coordinated, and the meeting could not be rescheduled prior to a change in the patient’s clinical status (extubation, tracheostomy placement, or transition to comfort care). The surrogates for 3 (20%) of 15 patients never agreed to a meeting time prior to a change in the patient’s clinical status and thus were not included. In 1 case, all available surrogates declined to participate.

Table 2 displays the baseline characteristics of the 9 patients and 18 surrogates who participated in the study. Most patients were living at home prior to the hospitalization, had hypoxemic respiratory failure, and had at least 1 extubation attempt prior to tracheostomy consideration. The average number of days from intubation to tracheostomy consideration was 10 (SD = 3 days). The majority (14/18, 78%) of participating surrogate decision makers were female. Half of all participating surrogates reported that they were very involved in the patient’s care, and most (16/18, 89%) viewed the communication with the primary ICU team as either “good” or “very good.” After the communication intervention, 4 (44%) patients received tracheostomies, 3 (33%) patients were successfully extubated, and 2 (22%) patients transitioned to comfort care. The number of days from intervention to either tracheostomy or successful extubation was significantly less than the number of days from intervention to transition to comfort measures (2 vs 9 respectively, P = .003).

Table 2.

Baseline Characteristics of Patients and Their Surrogate Decision Makers.

		Patients	Surrogate Decision Makers
		n = 9	n = 18
Year of age, mean (SD)		67 (14)	55 (12)
Gender, n (%)	Male	4 (44)	4 (22)
Gender, n (%)	Female	5 (56)	14 (78)
Race/ethnicity, n (%)	White (not Hispanic)	3 (33)	6 (33)
	Black (not Hispanic)	4 (44)	8 (44)
	Hispanic	2 (22)	4 (22)
Relationship to patient, n (%)	Spouse	–	4 (22)
	Child	–	9 (50)
	Other	–	5 (28)
Very religiously observant, n (%)		–	9 (50)
Involvement in patient’s care, n (%)	Not very involved	–	2 (11)
	Somewhat involved	–	7 (39)
	Very involved	–	9 (50)
View of communication with ICU team, n (%)	Very good	–	12 (67)
	Good	–	4 (22)
	Poor	–	2 (11)
Number of participating surrogates per patient, n (%)	1	3 (33)	–
	2	4 (44)	–
	>2	2 (22)	–
Living at home prior to hospitalization		8 (89)	–
Reason for intubation	Hypoxemic (noncardiogenic)	7 (78)	–
Reason for intubation	Neurologic	2 (22)	–
ProVent 14 score, mean (SD)		3 (1)	–
At least 1 extubation attempt prior to tracheostomy consideration, n (%)		5 (56)	–
Days from intubation to tracheostomy consideration, mean (SD)		10 (3)

Abbreviations: ICU, intensive care unit; SD, standard deviation; Pro Vent, Prognosis for Prolonged Ventilation.

The mean time from tracheostomy consideration by the primary ICU team to the patients’ surrogates agreeing to a date and time for the communication intervention was 3 days (SD: 4 days, range: 0-11 days; Table 3). The mean time from the surrogate agreeing on meeting date to the meeting occurring was 1 day (SD: 1 day, range: 0-2 days). The meeting required rescheduling based on surrogate requests in 2 (22%) of 9 cases. No meetings were rescheduled based on clinician requests. There was an average of 6 different interdisciplinary clinicians who participated in each meeting (range: 4-6, SD = 1). During the 15-week enrollment period, there were no speech and language pathologists available to participate. The information relating to speech and language pathology was communicated by the critical care physician at all meetings.

Table 3.

Characteristics and Outcomes of the Communication Intervention.

		Patient (N = 9)
Clinician representation, n (%)	Critical care medicine	9 (100)
	Respiratory therapy	8 (89)
	Speech therapy^a	0 (0)
	Nutritional therapy	8 (89)
	Physical/occupational therapy	9 (100)
	Palliative care medicine	7 (78)
	Case management	9 (100)
Days from tracheostomy consideration to surrogate agreeing on a meeting time for communication intervention, mean (SD)		3 (4); range: 0-11
Days from agreeing on a meeting time for communication intervention to meeting, mean (SD)		1 (1); range: 0-2
Days from intervention to tracheostomy (n = 4), mean (SD)		1 (1); range: 0-2
Days from intervention to successful extubation (n = 3), mean (SD)		3 (2); range: 2-6
Days from intervention to terminal extubation (n = 2), mean (SD)		9 (1); range: 8-9

Abbreviation: SD, standard deviation.

^a The information relating to speech therapy was communicated by the critical care physician at all meetings.

Participants had a very positive view of the communication intervention (Figure 2). Specifically, they reported that the intervention helped them understand the patient’s medical issues better, that they did not find the approach overwhelming, and that they would have liked to continue to have similar meetings throughout the patient’s hospitalization. Likewise, participating clinicians provided feedback that they appreciated the opportunity to communicate directly with surrogates and that the intervention was a good use of their time.

The average preintervention comprehension instrument score was 85 of a possible 120 points (SD: 8, range: 71-101; Figure 3). On average, each surrogate’s postintervention score was significantly greater than his or her preintervention score by 5 points (SD: 9, range: −11 to +20 points, P = .04). Cohen d test was 0.72, indicating the increase in score was of moderate effect size. Pre- and postintervention comprehension instrument scores, grouping questions by clinical discipline, are shown in Supplemental Figure 1. As a test of sensitivity, a repeated measures analysis of variance was conducted that controlled for grouping of multiple decision makers for the same patient. Increases in comprehension remained significant after controlling for grouping.

Cronbach α values were .72 and .62 for the pre- and postintervention survey scores, respectively. The 3 questions with the lowest Cronbach α scores were excluded due to their lower internal consistency reliability; these questions were designed to assess the surrogate’s knowledge of the need for mechanical ventilation and medical costs (Supplemental Data File 2). Results were comparable when the data were reanalyzed with this more concise and internally consistent 21-question scale; Cronbach α values were .72 and .70 for the pre- and postintervention survey scores, respectively.

Discussion

In this study, we developed and implemented a novel method to ensure that clinicians describe the challenges that come with recovering from critical illness. The clinicians and surrogates found the rationale for the project worthwhile as was evident by their willingness to participate in a study that involved substantial time commitments. There was unanimous satisfaction among both clinicians and surrogates following completion of the intervention. We found that, on average, this intervention led to an increase in a participant’s questionnaire score, which we designed to assess the degree to which the surrogate understood the patient’s medical condition.

Family members of critically ill patients are at high risk for post-traumatic stress disorder, depression, and complicated grief.¹⁴ Team-based approaches to communication may be best suited for addressing the emotional health of family members during a patient’s ICU stay.^15
-17 In some cases, a surrogate’s anxiety and depression related to having a critically ill family member may inhibit him or her from gaining a complete understanding of the patient’s medical condition.¹⁸ Nevertheless, surrogates readily agreed to participate in our communication intervention, suggesting that they were interested in having a better understanding the patient’s medical condition. While most of the educational topics of our communication intervention related to the patient, the palliative care clinicians in our intervention discussed the issue of surrogate mental health. When surveyed at the end of the intervention, surrogates stated that they did not find the approach overwhelming and would have wanted to continue to have similar meetings throughout the patient’s hospital stay. Determining the best ways to emotionally support the patient’s surrogates so that they can internalize the prognostic information provided by the clinician and make well-informed decisions requires further study.

In addition to acknowledging the increased levels of stress the surrogate may be experiencing, a primary goal of our intervention was to improve a participant’s understanding of the patient’s medical issues. To our knowledge, no previous study has examined a surrogate’s understanding of the chronic critical illness syndrome before and after a meeting, and thus, there are no previously validated instruments to measure this outcome. Our research group designed an instrument based on the current understanding of the features that define chronic critical illness and the types of information surrogates have reported as influencing the medical decisions they make.^2,11
-13

On average, each surrogate’s postintervention score was significantly greater than his or her preintervention score by 5 points. We suspect that this seemingly small increase is due to surrogates being able to make only incremental adjustments to their expectations after a single meeting. Although surrogates reported that they did not feel overwhelmed by the process, they may not have been able to internalize all of the communicated information at once. To allow surrogates to continue to learn about the patient’s condition after the meeting, we provided them with a summary packet and the contact information of the participating clinicians. Notably, the large increase in scores of some surrogates was offset by decreases in scores for others following the intervention. For surrogates whose total scores decreased, we suspect that they interpreted the questions differently after the intervention, not that they had a decreased understanding of chronic critical illness. Unfortunately, there are few tools to help clinicians prognosticate outcomes based on a patient’s individual characteristics.^19,20 As such, our clinicians’ expectations were typically based on population averages.³ At the conclusion of the intervention, many surrogates may have believed that the patient’s unique characteristics would allow him or her to have an above average recovery.^21,22 In all, our findings may reveal that surrogates may need to observe a patient’s progress and receive education at multiple points in time in order to develop a more complete understanding of a patient’s medical condition.

This study has the following limitations. Our findings were based on a novel questionnaire designed by our team. Although we demonstrated face validity and internal consistency of the instrument, further study is needed to validate our instrument as a measure of a subject’s understanding of chronic critical illness. In addition, we do not know the minimum score that equates to a “good understanding” of a patient’s condition or the minimal change in score that is clinically significant. Second, we did not enroll enough subjects to determine the specific aspects of the communication approach that were most or least effective. We did not attempt to determine whether our results would have been similar if the educational material was presented to the surrogates by a single clinician or in written format. Our decision to use a team-based approach was based on the success of other investigators.^16,17 Third, the goal of our communication intervention was not to persuade the participants to make a particular medical decision after the meeting. Further study is required to determine whether implementing this multidisciplinary communication approach at different points over the course of the patient’s illness would affect patient-centered outcomes such as duration of mechanical ventilation or change in goals of care. Nevertheless, surrogates reported greater comfort making decisions after the intervention. Finally, this was a small pilot study where the primary objective was to demonstrate the feasibility and acceptability of a new communication approach in the ICU. The impact of this approach on patient and surrogate outcomes will require a future study where the sample size is larger.

In conclusion, in this study of patients who were being considered for tracheostomy, a communication approach that involved a semi-structured, face-to-face meeting between all available surrogates and multiple interdisciplinary clinicians was feasible and acceptable to all participants. Previously, investigators have determined the types of information that surrogates believe is important to make medical decisions for a patient with chronic critical illness. The best way to communicate this information remains unclear. The approach we describe not only ensured that this information was communicated, it also highlighted the fact that the patient was transitioning from an early phase to a chronic phase of critical illness. The results of this small pilot study suggest that this communication intervention led to surrogates having an improved understanding of the patient’s condition. Further study is needed to determine whether this approach, delivered at multiple time points during a patient’s recovery, affects patient and surrogate outcomes.

Supplemental Material

Supplemental Material, CCI_Team_Supplemental_Data_File_1_v_8_21_19_(1) - A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness

Supplemental Material, CCI_Team_Supplemental_Data_File_1_v_8_21_19_(1) for A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness by Jared A. Greenberg, James Gerhart, Jacqueline N. Horst, Elaine Chen, Rebecca L. Hunter, Sean O’Mahony, Mei-Ean Yeow, Laura Fosler, Lisa A. LaGorio, Edita Meksraityte, Tyler T. Weiss, Kristen Nowak, Jacqueline Geddes, Stacy S. Lambe, Kara Fenton and Raj C. Shah in American Journal of Hospice and Palliative Medicine®

Supplemental Material

Supplemental Material, CCI_Team_Supplemental_Data_File_2_v_6_1_19 - A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness

Supplemental Material, CCI_Team_Supplemental_Data_File_2_v_6_1_19 for A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness by Jared A. Greenberg, James Gerhart, Jacqueline N. Horst, Elaine Chen, Rebecca L. Hunter, Sean O’Mahony, Mei-Ean Yeow, Laura Fosler, Lisa A. LaGorio, Edita Meksraityte, Tyler T. Weiss, Kristen Nowak, Jacqueline Geddes, Stacy S. Lambe, Kara Fenton and Raj C. Shah in American Journal of Hospice and Palliative Medicine®

Supplemental Material

Supplemental Material, supp_figure - A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness

Supplemental Material, supp_figure for A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness by Jared A. Greenberg, James Gerhart, Jacqueline N. Horst, Elaine Chen, Rebecca L. Hunter, Sean O’Mahony, Mei-Ean Yeow, Laura Fosler, Lisa A. LaGorio, Edita Meksraityte, Tyler T. Weiss, Kristen Nowak, Jacqueline Geddes, Stacy S. Lambe, Kara Fenton and Raj C. Shah in American Journal of Hospice and Palliative Medicine®

Footnotes

Acknowledgments

Li C. Liu, assisted with the statistical methods. Brenda Green participated in all family meetings.

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 received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Jared A. Greenberg

Sean O’Mahony

Supplemental Material

Supplemental material for this article is available online.

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