Surrogate decision makers’ perspectives on preventable breakdowns in care among critically ill patients: A qualitative study

Accepted Manuscript Title: Surrogate Decision Makers’ Perspectives on Preventable Breakdowns in Care among Critically Ill Patients: A Qualitative Study Author: Kimberly A. Fisher Sumera Ahmad Madeline Jackson Kathleen M. Mazor PII: DOI: Reference:

S0738-3991(16)30149-5 http://dx.doi.org/doi:10.1016/j.pec.2016.03.027 PEC 5318

To appear in:

Patient Education and Counseling

Received date: Revised date: Accepted date:

11-9-2015 7-3-2016 25-3-2016

Please cite this article as: Fisher Kimberly A, Ahmad Sumera, Jackson Madeline, Mazor Kathleen M.Surrogate Decision Makers’ Perspectives on Preventable Breakdowns in Care among Critically Ill Patients: A Qualitative Study.Patient Education and Counseling http://dx.doi.org/10.1016/j.pec.2016.03.027 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Surrogate Decision Makers’ Perspectives on Preventable Breakdowns in Care among Critically Ill Patients: A Qualitative Study Short Title: Preventable Breakdowns in Critically Ill Patients Kimberly A. Fisher, M.D. M.Sc.a, b Sumera Ahmad, M.D.a Madeline Jackson, B.A.b Kathleen M. Mazor, Ed.D.a,b

From the a Department

of Medicine

University of Massachusetts Medical School 55 Lake Avenue North Worcester, MA, 01655, USA b Meyers

Primary Care Institute

425 North Lake Avenue Worcester, MA 01605, USA

Address for reprints and corresponding author: Kimberly A. Fisher, M.D., M.Sc. Division of Pulmonary and Critical Care Medicine Department of Medicine University of Massachusetts Medical Center 55 Lake Avenue North Worcester, MA 01655 Email address: [email protected] Tel: (508) 856-1975 Fax: (774) 442-3999

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Highlights 

SDMs of critically ill patients frequently identify preventable breakdowns in care.



Types of breakdowns reported include problems with medical care and communication.



Breakdowns resulted in a variety of adverse consequences for patients and SDMs.



Healthcare providers often do not respond adequately to SDMs’ reports of breakdowns.

Abstract Objective: To describe surrogate decision makers’ (SDMs) perspectives on preventable breakdowns in care among critically ill patients. Methods: We screened 70 SDMs of critically ill patients for those who identified a preventable breakdown in care, defined as an event where the SDM believes something “went wrong”, that could have been prevented, and resulted in harm. In-depth interviews were conducted with SDMs who identified an eligible event. Results: 32 of 70 participants (46%) identified at least one preventable breakdown in care, with a total of 75 discrete events. Types of breakdowns involved medical care (n=52), communication (n=59), and both (n=40). Four additional breakdowns were related to problems with SDM bedside access to the patient. Adverse consequences of breakdowns included physical harm, need for additional medical care, emotional distress, pain, suffering, loss of trust, life disruption, impaired decision making, and financial expense. 28 of 32 SDMs raised their concerns with clinicians, yet only 25% were satisfactorily addressed. Conclusion: SDMs of critically ill patients frequently identify preventable breakdowns in care which result in harm. Practice Implications: An in-depth understanding of the types of events SDMs find problematic and the associated harms is an important step towards improving the safety and patient-centeredness of healthcare. Keywords: communication; medical errors; patient safety; adverse events; quality of healthcare

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1. Introduction

There is increasing recognition that patients and their family members have a unique perspective on healthcare which could enhance the detection and understanding of medical errors and adverse events [1-8].

Patient-perceived

breakdowns in care are events where something has “gone wrong” from the perspective of the patient or family member, that could have been prevented, and that resulted in harm [1].

Conceptually at the confluence of patient safety and patient experience,

patient-perceived breakdowns in care are heterogeneous and can include problems with diagnosis or treatment, adverse drug events, or communication breakdowns. Some meet the standard definition of a medical error, i.e., a failure in the planning or execution of medical care [9], while others may not. Common to all patient-perceived breakdowns in care is the negative impact of these events, including physical harm, psychological distress, and damage to the patient-physician relationship, making them important targets for improvement in healthcare delivery [1, 6-8, 10]. Critically ill patients are especially vulnerable to medical errors and breakdowns in care, owing to the complexity and severity of their illness [11-14]. Additionally, critical illness renders many patients unable to participate in their medical care, requiring a friend or family member to serve as surrogate decision maker (SDM), a role that is known to carry a heavy emotional burden with high rates of psychological morbidity [15, 16], stress [17], and conflict with intensive care unit (ICU) clinicians [18-23].

For these reasons, SDMs of critically ill patients may

have important insights about problems in care that could suggest opportunities to improve the safety and patient-centeredness of critical care. Although several studies have examined medical errors in the intensive care unit (ICU) from the perspective of clinicians [24, 25], none have examined SDMs’ perceptions of breakdowns in care. The objective of this study was to examine SDMs’ perspectives on preventable breakdowns in care among critically ill patients with acute respiratory failure. Specifically, we sought to characterize the nature of such events and their consequences, and to describe SDM communication with clinicians after these events.

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2. Methods 2.1. Study setting and population This study was conducted in 7 intensive care units (ICUs) of 2 tertiary care academic hospitals in Worcester, Massachusetts, between July, 2013 and June, 2014. The ICUs include 3 medical ICUs, 2 surgical ICUs, 1 neurologic ICU, and 1 cardiac ICU. Eligible patients were those with age older than 18 years, acute respiratory failure requiring mechanical ventilation for at least 48 hours, and lack of decisionmaking capacity with need for a SDM as determined by the attending physician. We excluded patients with chronic respiratory failure requiring mechanical ventilation via tracheostomy prior to current ICU admission, prisoners, patients without identified SDMs, and patients with a court appointed legal guardian. In order to avoid overlap with other ongoing studies at our institution, we excluded patients with moderate to severe traumatic brain injury (msTBI). SDMs were eligible for participation if they were identified by the attending physician as the medical decision maker for the patient, and spoke English well enough to not require an interpreter. We identified eligible patients and their SDM by screening all ICU patients regularly during the week.

Attending physician assent was obtained prior to

approaching potential participants. All participants (SDMs) provided informed consent for their own participation and on behalf of the patients. This study was approved by the institutional review board at the University of Massachusetts Medical School. SDMs who agreed to participate completed a structured interview at the time of enrollment, at which time demographic characteristics were collected. The patient’s medical record was abstracted for the following information: demographics, admitting diagnosis, severity of illness as measured by the APACHE IV score, need for invasive treatments (vasopressors, continuous sedation), ICU and hospital length of stay, and vital status at the time of ICU discharge. Study data were collected and managed using REDCap (Research Electronic Data Capture) electronic data capture tools hosted at the University of Massachusetts Medical School [26].

2.2. Assessment for eligible event(s)

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In order to capture the SDM’s perspective on the entire ICU stay, but avoid contacting SDMs during the sensitive time surrounding ICU discharge or death, participants were contacted via telephone approximately 6 weeks following the patient’s discharge from the ICU. At this time, SDMs were screened for those who identified an eligible event. Eligible events were defined as something that, from the perspective of the SDM, “went wrong” that could have been prevented and that caused harm. Consistent with prior work investigating patients’ views on harm resulting from medical errors, we did not restrict our inquiry to physical harm, but also included emotional harm such as distress, and damage to the provider-patient relationship [27, 28]. We included events meeting these criteria that occurred at any time during the patient’s hospitalization that included the ICU stay. Events meeting these criteria are hereafter referred to as breakdowns in care. Multiple discrete events identified by a single SDM were included individually only if they could be clearly distinguished and met all eligibility criteria.

2.3. Interview protocol and content Two trained interviewers (KF and SA) conducted in-depth telephone interviews with SDMs who identified a preventable breakdown in care.

SDMs were asked to

describe the preventable breakdown in care in detail, the impact of the event on the patient and themselves, and their actions and communications with healthcare providers in response to these events. Interviews lasted approximately one hour and were audio-taped, transcribed, and de-identified. Two SDMs declined to be recorded in which case detailed notes were taken at the time of the interview.

2.4. Data analysis Interview transcripts and notes were coded using directed content analysis [29, 30]. An initial coding framework was created using interview domains. Codes were added and refined through an iterative process of transcript review, coding, and discussion until consensus was reached. Because many events were quite complex, multiple codes within a given domain or across domains could be applied to a single event if indicated. For example, in the case of a SDM believing the patient

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was over-sedated despite repeatedly reporting this concern to healthcare providers, codes for ‘inappropriate use of pain/sedation medications’ and ‘SDM or patient report of problems, side effects, or symptoms ignored or discounted’ were applied.

Using the final coding framework, 2 investigators (KF and MJ)

independently coded all interviews.

Differences in coding were discussed and

resolved by consensus, with a third investigator with experience in qualitative coding (KMM) assisting in resolution if needed. Transcripts and codes were entered into the Statistical Package for the Social Sciences (version 22), in order to facilitate data management, manipulation, and reporting.

Results are summarized using

frequency counts, and descriptive statistics.

3. Results 3.1. Participant characteristics Of the 129 SDMs eligible and available for participation, 92 (71%) agreed to participate and enrolled. Complete follow up is available on 70 SDMs (Figure 1). Five SDMs consented to be interviewed, but not to include patient information; therefore, complete medical information is available on 65 patients.

The demographic

characteristics of the participating SDMs and patients are presented in Table 1. 3.2. Surrogate decision makers’ perceptions of preventable breakdowns in care Of 70 SDMs who completed follow up, 32 (46%) identified at least one breakdown in care that met eligibility requirements.

The majority of SDMs who

identified a breakdown (22 of 32; 69%) identified more than one eligible event (range 16 events, mean 2.5 events) for a total of 75 discrete eligible breakdowns in care. While most of these events (52 of 75 events; 69%) occurred while the patient was in the ICU, approximately one-third of the breakdowns occurred prior to admission to the ICU (n=7), or following discharge from the ICU (n=16). Based on SDMs detailed description of their perception of these events, we classified breakdowns as problems with medical care, problems with communication, or other. Medical care was defined to include technical aspects of healthcare (e.g. diagnosis, treatment, procedures) as well as provision of nursing care (e.g.,

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medication administration, dressing changes, assistance with toileting) and discharge timing and arrangements. In many cases, a single event involved a breakdown in both medical care and communication. Of the 75 events, 52 (69%) included a breakdown in medical care with 25 of 70 participants (36%) identifying at least one breakdown in medical care. There were 12 breakdowns that involved medical care only without a concomitant breakdown in communication. Types of medical breakdowns described by SDMs included problems with diagnosis (delayed, incorrect, or missed diagnosis), delayed or inadequate treatment, preventable complications, inappropriate use of pain or sedative medications, inadequate nursing care, and problems related to discharge (premature discharge or inadequate discharge arrangements). Examples of these breakdowns illustrated by representative quotes are included in Table 2. Breakdowns in communication which resulted in harm to the patient or SDM contributed to 59 of 75 events (79%), and were reported by 30 of 70 SDMs (43%). In 19 instances, breakdown in communication was the sole preventable breakdown in care.

Communication breakdowns included inadequate provision of information

(e.g., not providing an overall assessment of prognosis or long term plan, not providing information about the full extent of medical problems), insufficient time or lack of regular time to meet with healthcare providers, episodes of healthcare providers being rude, dismissive or uncaring to the patient or SDM, healthcare providers not listening to SDM or patient preferences or report of symptoms or problems, nurses or staff unresponsive to patient or SDM calls or immediate needs, conflicting information from different healthcare providers, lack of continuity between healthcare providers, healthcare providers preferring to provide less intensive life-sustaining care than the patient or SDM have requested, and healthcare providers not discussing alternatives to intensive life-sustaining care with SDMs.

One SDM identified a

breach of confidentiality resulting from information being provided inappropriately to bedside visitors. Quotes exemplifying these communication breakdowns are presented in Table 2. Forty events involved breakdowns in both medical care and communication. Twenty-two of these (55%) involved a perceived failure to listen to SDM reports of

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information, preferences, concerns, or symptoms that subsequently contributed to a medical breakdown such as delayed or missed diagnoses, or exacerbation of a medical complication. For example, one SDM reported the nursing staff did not heed their warning that the patient needed to be fed in a specific manner, with resultant aspiration pneumonia. In other cases (n = 16), inadequate communication between healthcare providers contributed to breakdowns (e.g., important details in medical care not shared between teams, or disagreement between teams resulting in delayed treatment). We identified four events that were not readily categorized as involving breakdowns in communication or medical care; all four related to problems with bedside access to the patient. In one case, the SDM was not allowed to remain at the patient’s bedside overnight even though she felt her presence was essential to provide information and assist with managing the patient’s anxiety.

In three cases, SDMs

expressed concern about unrestricted access of visitors they considered disruptive to the patient.

3.3. Perceived consequences of breakdowns in care SDMs described multiple adverse consequences as a result of these breakdowns.

Perceived consequences on patients included physical harm (e.g.,

preventable ulcers, airway damage resulting from traumatic intubation, aspiration pneumonia, pulmonary embolism), need for additional or more invasive treatments (e.g., skin graft, intubation, avoidable tracheostomy, more extensive surgical procedure than would otherwise have been required), readmission to the hospital, ICU or need for additional

emergency

department

(ED)

visit,

prolongation

of

hospital

or

rehabilitation stay, receipt of treatments patient did not fully understand or want, emotional distress, and pain or suffering.

In five cases, SDMs believed that the

breakdown contributed to or caused the patient’s death. The consequences of these events on SDMs included emotional distress, loss of trust in healthcare providers, life disruption, impaired decision making ability, insufficient information to relay to family members, incurrence of additional financial expenses, and avoidance of visiting the

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patient in the ICU.

Detailed examples of the consequences of these events on

patients and SDMs are presented in Table 3. SDMs described several instances in which communication breakdowns were particularly problematic due to their unique role as a SDM. SDMs identified inadequate information provision and receipt of conflicting information from different healthcare providers as especially troubling because of the added responsibility of making decisions for someone else, stating “when you’re in the decision making role for someone else you feel even more responsible and you want to make sure you’ve got all the information” (#40). In other cases, SDMs described heightened distress at not being listened to because they were speaking up on behalf of the patient with one SDM stating “it’s not like he can speak for himself. If we’re telling you something, we’re telling you to help you take care of [the patient]” (#374).

3.4. Perceived responsibility for breakdowns in care In 47 of 75 events (63%), SDMs felt physicians (including physician assistants and nurse practitioners) were responsible for the breakdown, while they considered nurses (including nurse assistants) to be responsible in 24 of 75 events (32%). In 5 events (7%), other healthcare providers such as social workers, case managers, or administrators were believed to be responsible. In 8 events, multiple types of provider (e.g., physicians and nurses) were thought to have contributed to the breakdown. SDMs expressed uncertainty regarding who was responsible in 7 events, including the 4 breakdowns related to access to the patient.

3.5. Communication with clinicians after the event Of the 32 SDMs who identified a breakdown, 28 (88%) reported at least one of their concerns to a healthcare provider.

However, of the 75 discrete breakdowns

identified, 16 SDMs did not notify healthcare providers of 24 (32%) events. The most common reason reported by SDMs for not speaking up at the time of the perceived breakdown was not recognizing the problem until it was too late or already resolved (n = 17 events). Other reasons included not wanting to burden healthcare providers with

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complaints (n = 3 events), not being able to identify or locate the appropriate individual to address (n = 2 events), thinking it would not help (n = 2 events), not knowing what questions to ask (n = 3 events), and feeling they had already raised their concern (n = 3 events). Two SDMs did not speak up out of concern it might adversely impact ongoing patient care. There were 25 SDMs who described the response of healthcare providers to their reports of concerns regarding 42 breakdowns in care. In the majority of these events (57%), SDMs received a limited response that did not fully address the problem. For example, one SDM describes the response to her repeated requests for more information, “One of the nurses actually went and found a doctor to come in and talk to me” but went on to say, “But it wasn’t sort of a person who knew completely about her care. It just happened to be maybe the resident who was on the unit at that time” (#40).

In approximately one-quarter of these events (9 of 42),

the SDM received no response or the immediate problem was not addressed. There were eight events (19%) where healthcare providers responded rudely to SDMs’ reports of concerns, as one SDM describes “When I questioned the doctor about it, he got kind of belligerent with me” (#298). SDMs felt the problem was fully and satisfactorily addressed in 10 events (24%).

In some cases, this could be as simple as a

clarifying explanation with one SDM describing the benefits of a thorough explanation for a perceived delay in treatment, “Now I understand. I get that. All you have to do is just let me know. Let me be on the same page” (#64). Seven SDMs received an apology from a healthcare provider for the breakdown, and cited the importance of this, with one SDM indicating “it definitely helped that she was apologetic” (#117).

3.6. Actions after the event At the time of the follow up interview, no SDMs had taken steps to formally report the breakdowns in care they experienced, although several indicated intent to eventually do so. Three were considering contacting a lawyer, one intended to write a letter to the hospital administration, and three had requested copies of patient’s records.

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A number of SDMs (n = 10) cited being too busy attending to ongoing patient needs to formally report breakdowns. Of the 32 SDMs who identified a breakdown in care, nine (28%) indicated they would advocate more strenuously for themselves or the patient in future health care encounters, including being more likely to ask for a second opinion. Six (19%) reported they would avoid a specific health care facility as a result of their experience with breakdowns in care. Three SDMs (4%) indicated they had avoided seeking medical care for themselves or the patient due to the breakdown in care they experienced.

4. Discussion 4.1. Discussion To our knowledge, this is the first description of preventable breakdowns in care among critically ill patients from the perspective of SDMs. We found that nearly onehalf (46%) of SDMs identified at least one preventable breakdown in care which resulted in negative consequences for the patient and/or SDM. Although our study does not allow us to generalize about the prevalence of perceptions of preventable breakdowns in care in the general population of critically ill patients and SDMs, it nonetheless demonstrates the need to improve the safety and patient-centeredness of critical care and suggests several targets for doing so. Breakdowns in communication contributed to or comprised the main problem in nearly all of the preventable breakdowns in care we identified, demonstrating the urgent need to improve communication with SDMs of critically ill patients. Our finding that communication breakdowns were key factors in the majority of breakdowns in medical care highlights the important role of communication in patient safety.

Specifically, we found that healthcare

providers’ perceived failure to listen to SDMs, and inadequate communication between healthcare providers (e.g. team communication) were the most common communication breakdowns that led to breakdowns in medical care, identifying these as crucial areas in need of improvement. Further research is needed to better understand the underlying causes of these communication breakdowns,

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and how communication can be improved, especially in complex healthcare systems. Breakdowns

in

communication

not

only

contributed

to

medical

breakdowns, but were important in their own right, as evidence by SDMs’ descriptions of negative consequences that may not be fully appreciated by healthcare providers.

Inadequate provision of information and receipt of

conflicting information were particularly problematic communication breakdowns for SDMs.

First, not getting enough information adversely affected SDMs’

decision-making ability, which was especially difficult with regards to making end-of-life decisions and resulted in some patients receiving treatments not consistent with their end-of-life preferences. SDMs also described problems with more practical decisions such as whether other friends and family members should arrange to travel to visit the patient.

Second, SDMs experienced

emotional distress as a result of not being sufficiently informed which was compounded by the heightened sense of responsibility associated with making decisions on someone else’s behalf. Third, insufficient information resulted in life disruption for SDMs, such as having to take time off from work to get questions answered because phone calls were not returned. Our work is consistent with Iverson et al’s study demonstrating that inadequate communication can compound SDM stress [17].

It extends what is

known about gaps in communication with critically ill patients [31-33] by describing in detail the harm these events have on patients and their families. Our description of communication breakdowns offers several insights into what is required to improve the communication with SDMs of critically ill patients by detailing the types of communication breakdowns (e.g. insufficient information provision and conflicting information) such interventions should target. SDMs’ stories could be central to such interventions, as there is evidence that incorporating verbatim narratives in communication interventions may promote emotional components of communication, such as empathy [34, 35], which is associated with higher family satisfaction with communication in the ICU setting [36].

Finally, these

findings strengthen arguments for an expanded definition of medical errors to include

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major communication breakdowns, especially with regards to discussing advanced care planning [37, 38]. Viewing communication breakdowns through “the patient safety lens” and treating such breakdowns as adverse events could lead to a better understanding of the root causes of such events and thereby promote systemlearning and system-level solutions [38]. The nature of events identified by SDMs differs from those identified through other approaches to identify patient safety events, such as direct observation or traditional medical error reporting mechanisms. SDMs described a broader range of types of breakdowns, including delays in diagnosis and treatment, preventable complications, inadequate nursing care, problems with discharge, and breakdowns in communication. By comparison, studies employing direct observation or healthcare provider report identify a more limited set of breakdowns such as medication errors, accidental removal of tubes or central lines, or equipment failure [12-14, 24] which may be less troubling to patients and their families than the events reported in our study. This finding is consistent with other studies demonstrating that patients and their family members offer an important and unique perspective on breakdowns in care and patient safety [2-5]. Additionally, as was previously found by Mazor et al [1], very few SDMs took steps to formally report the breakdowns in care they observed. Therefore, our work suggests that SDMs have important information about preventable breakdowns in care that are unlikely to be detected by other reporting mechanisms.

This work lends support to recent calls to develop

systems that overcome patient (or SDM)-level barriers to reporting preventable breakdowns in care, allowing this important perspective to be captured and used to improve healthcare [39]. Although few SDMs formally reported the breakdowns in care they experienced, nearly all of the SDMs in our study brought at least one observed breakdown in care to the attention of clinicians.

Unfortunately, only one-quarter of these reports led to

satisfactory resolution of the problem, with most events being inadequately addressed or not addressed at all, and some SDMs reporting that clinicians responded rudely to their concerns. Our finding that SDMs are more likely to report their concerns to frontline clinicians than via formal reporting mechanisms illustrates the need for

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adequate training and resources to ensure that healthcare providers respond effectively to concerns raised by patients’ families. In addition, we reinforce what is known about what SDMs consider an effective response including the importance of apology [40] and the benefit of correcting misperceptions at the time they occur. This study has a number of strengths, including being the first to examine the perspective of SDMs on preventable breakdowns in care among critically ill patients. By defining breakdowns in care as events that were preventable and had negative consequences for SDMs, we have selected for events that are important targets for improvement. We provide an in-depth description of these events allowing for better understanding of the SDMs’ perspective. By interviewing SDMs post-discharge, we were able to characterize the full spectrum of breakdowns that occur during the continuum of care experienced by critically ill patients and their families, including the high risk time surrounding hospital discharge. Our study has several limitations. Because our sample was predominantly white and drawn from 2 tertiary care academic hospitals, it is unknown whether these findings are generalizable to critically ill patients in different settings or of different backgrounds. We acknowledge that the described events could be categorized according to different approaches than we have taken.

However, we have

attempted to describe these events fully to allow the reader to gain a complete understanding of the SDMs’ perspectives and experiences.

We focused on

SDMs’ perspective on breakdowns in care; as such, we did not obtain consent from patients or verify SDMs’ accounts with the patients. Additionally, we did not independently validate the perceptions of SDMs through medical chart review or elicit clinicians’ perspectives of the reported breakdowns. It is possible that SDMs’ reports of breakdowns are not an accurate representation of these events.

However, their

perception of breakdowns is nonetheless significant with resultant loss of trust, emotional distress, disruption of relationships with healthcare providers, and potential to compound the already high burden of surrogate decision making, thus demonstrating the need to identify and correct both misperceptions of care and true breakdowns in care.

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4.2. Conclusion In summary, we have found that many SDMs of critically ill patients interviewed six weeks after hospitalization recall in detail episodes of care they found problematic which they believed could have been avoided and resulted in negative consequences for the patient or themselves.

Breakdowns in

communication contributed to or entirely comprised the majority of these events, highlighting the importance of improving communication with patients and SDMs as a means of increasing patient safety and patient-centeredness. Healthcare providers caring for patients with impaired decision-making capacity should consider that SDMs have greater informational needs than patients owing to their heightened sense of responsibility in making decisions for someone else.

Healthcare

systems are likely to be unaware of many of the preventable breakdowns in care experienced by SDMs of critically ill patients as these events are not captured by traditional adverse event reporting mechanisms and SDMs do not formally report these events. clinicians.

However, SDMs do bring these events to the attention of

As a result, interventions are needed to promote healthcare provider

recognition of and appropriate response to patient- and SDM-perceived breakdowns in care.

4.3. Practice Implications The types of breakdowns identified by SDMs of critically ill patients differ from traditionally defined medical errors, and therefore may not be recognized or prioritized by healthcare providers.

However, owing to the negative consequences of these

events, it is important for health care providers to be aware of SDMs’ perspectives of breakdowns in care, and to understand the negative consequences of such events. Encouraging patients and/or SDMs to speak up about concerns, and responding appropriately to SDMs’ reports of breakdowns in care could prevent or mitigate many of the events described by SDMs, thereby promoting the delivery of safer, more patientcentered care.

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5. Patient details We confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

Conflicts of interest None.

Funding This project was funded by a Faculty Scholar Award through the Office of Faculty of Affairs at the University of Massachusetts Medical School. The sponsor had no involvement in study design, in the collection, analysis and interpretation of data, in the writing of the report, or in the decision to submit the article for publication.

Acknowledgments We thank the nursing and medical staff of participating ICUs and the staff at Meyers Primary Care Institute for their support and assistance with this work.

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[19] K. H. Abbott, J. G. Sago, C. M. Breen, A. P. Abernethy, J. A. Tulsky, Families looking back: One year after discussion of withdrawal or withholding of life-sustaining support, Crit Care Med. 29 (2001) 197-201. [20] E. Azoulay, J. F. Timsit, C. L. Sprung, M. Soares, K. Rusinova, A. Lafabrie, R. Abizanda, M. Svantesson, F. Rubulotta, B. Ricou, D. Benoit, D. Heyland, G. Joynt, A. Francais, P. AzeivedoMaia, R. Owczuk, J. Benbenishty, M. de Vita, A. Valentin, A. Ksomos, S. Cohen, L. Kompan, K. Ho, F. Abroug, A. Kaarlola, H. Gerlach, T. Kyprianou, A. Michalsen, S. Chevret, B. Schlemmer, Prevalence and factors of intensive care unit conflicts: The conflicus study, Am J Respir Crit Care Med. 180 (2009) 853-860. [21] D. M. Studdert, M. M. Mello, J. P. Burns, A. L. Puopolo, B. Z. Galper, R. D. Truog, T. A. Brennan, Conflict in the care of patients with prolonged stay in the icu: Types, sources, and predictors, Intensive Care Med. 29 (2003) 1489-1497. [22] C. M. Breen, A. P. Abernethy, K. H. Abbott, J. A. Tulsky, Conflict associated with decisions to limit life-sustaining treatment in intensive care units, J Gen Intern Med. 16 (2001) 283-289. [23] N. Danjoux Meth, B. Lawless, L. Hawryluck, Conflicts in the icu: Perspectives of administrators and clinicians, Intensive Care Med. 35 (2009) 2068-2077. [24] S. Osmon, C. B. Harris, W. C. Dunagan, D. Prentice, V. J. Fraser, M. H. Kollef, Reporting of medical errors: An intensive care unit experience, Crit Care Med. 32 (2004) 727-733. [25] Y. Donchin, D. Gopher, M. Olin, Y. Badihi, M. Biesky, C. L. Sprung, R. Pizov, S. Cotev, A look into the nature and causes of human errors in the intensive care unit, Crit Care Med. 23 (1995) 294-300. [26] P. A. Harris, R. Taylor, R. Thielke, J. Payne, N. Gonzalez, J. G. Conde, Research electronic data capture (redcap)--a metadata-driven methodology and workflow process for providing translational research informatics support, J Biomed Inform. 42 (2009) 377-381. [27] K. M. Mazor, S. L. Goff, K. S. Dodd, S. J. Velten, K. E. Walsh, Parents' perceptions of medical errors, J Patient Saf. 6 (2010) 102-107. [28] K. M. Mazor, Goff S.L., Dodd, K., Alper E.J., Understanding patients' perceptions of medical errors, Journal of Communication in Healthcare. 2 (2009) 34-46.

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[29] C. Pope, S. Ziebland, N. Mays, Qualitative research in health care. Analysing qualitative data, BMJ. 320 (2000) 114-116. [30] E. H. Bradley, L. A. Curry, K. J. Devers, Qualitative data analysis for health services research: Developing taxonomy, themes, and theory, Health Serv Res. 42 (2007) 1758-1772. [31] E. Azoulay, S. Chevret, G. Leleu, F. Pochard, M. Barboteu, C. Adrie, P. Canoui, J. R. Le Gall, B. Schlemmer, Half the families of intensive care unit patients experience inadequate communication with physicians, Crit Care Med. 28 (2000) 3044-3049. [32] J. E. Nelson, A. F. Mercado, S. L. Camhi, N. Tandon, S. Wallenstein, G. I. August, R. S. Morrison, Communication about chronic critical illness, Arch Intern Med. 167 (2007) 25092515. [33] D. K. Heyland, D. Barwich, D. Pichora, P. Dodek, F. Lamontagne, J. J. You, C. Tayler, P. Porterfield, T. Sinuff, J. Simon, Failure to engage hospitalized elderly patients and their families in advance care planning, JAMA Intern Med. 173 (2013) 778-787. [34] V. Jha, H. Buckley, R. Gabe, M. Kanaan, R. Lawton, C. Melville, N. Quinton, J. Symons, Z. Thompson, I. Watt, J. Wright, Patients as teachers: A randomised controlled trial on the use of personal stories of harm to raise awareness of patient safety for doctors in training, BMJ Qual Saf. 24 (2015) 21-30. [35] A. K. Kumagai, A conceptual framework for the use of illness narratives in medical education, Acad Med. 83 (2008) 653-658. [36] R. B. Selph, J. Shiang, R. Engelberg, J. R. Curtis, D. B. White, Empathy and life support decisions in intensive care units, J Gen Intern Med. 23 (2008) 1311-1317. [37] T. A. Allison, R. L. Sudore, Disregard of patients' preferences is a medical error: Comment on "failure to engage hospitalized elderly patients and their families in advance care planning", JAMA Intern Med. 173 (2013) 787. [38] T. H. Gallagher, K. M. Mazor, Taking complaints seriously: Using the patient safety lens, BMJ Qual Saf. 24 (2015) 352-355. [39] K. M. Mazor, K. M. Smith, K. A. Fisher, T. H. Gallagher, Speak up! Addressing the paradox plaguing patient-centered care, Ann Intern Med. (2016) 1-2.

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[40] K. M. Mazor, S. M. Greene, D. Roblin, C. A. Lemay, C. L. Firneno, J. Calvi, C. D. Prouty, K. Horner, T. H. Gallagher, More than words: Patients' views on apology and disclosure when things go wrong in cancer care, Patient Educ Couns. 90 (2013) 341-346.

22

Figure 1. Study flow diagram. Patients/SDMs screened for eligibility (n = 413)

SDM never contacted, unavailable (n = 165) Patient deceased (n = 33) Patient extubated (n = 30) Patient discharged (n = 102)

Patient not eligible (n = 36) Chronic respiratory failure (n = 9) Prisoner (n = 6) msTBI (n = 14) No SDM identified (n = 7)

SDM not eligible (n = 18) Non-English speaking (n = 14) Court appointed legal guardian (n = 4)

SDM contacted, but undecided and unavailable prior to enrollment (n = 50) Patient deceased (n = 10) Patient extubated (n = 4) Patient discharged (n = 36)

Patient/SDM excluded at clinician request (n = 15)

SDMs contacted and made decision regarding participation (n = 129)

SDM declined to participate (n = 37)

SDMs enrolled (n = 92)

SDM withdrew prior to follow up (n = 7)

SDM unavailable for follow up (n = 15)

Complete follow up available (n = 70)

Eligible event identified (n = 32)

No eligible event identified (n = 38)

23

Table 1. Demographic characteristics of surrogate decision makers and patients* Characteristic Surrogate decision makers Age(years), mean (range)† Female Race/ethnicity White Hispanic African American Other Relationship to patient Spouse/partner Child Sibling Parent Level of education Post-graduate degree College graduate Some college or technical school Some high school 8th grade or less Employment status Full-time employment Part-time employment Unemployed Retired Other (includes student, disabled, self-employed, ‘on leave’) Patients Age (years), mean (range)‡ Female Race/ethnicity‡ White, non-Hispanic Hispanic Black, non-Hispanic Asian Not specified ICU type Medical Surgical Cardiovascular Neurologic ICU admission diagnosis‡ Cardiovascular failure (incl. sepsis)

n = 70 53.7 (21-78) 52 (74.3) 65 (92.9) 3 (4.3) 1 (1.4) 1 (1.4) 35 (50.0) 25 (35.7) 8 (11.4) 2 (2.9) 10 (14.3) 16 (22.9) 19 (27.1) 23 (32.8) 2 (2.9) 32 (45.7) 10 (14.3) 6 (8.6) 16 (22.9) 6 (8.6) n = 70 64.9 (23-90) 23 (32.9) 57 (87.7) 3 (4.6) 1 (1.5) 1 (1.5) 3 (4.6) 28 (40.0) 20 (28.6) 12 (17.1) 10 (14.3) 18 (27.7)

24

Neurologic failure 17 (26.2) Respiratory failure 14 (21.5) Trauma or surgical 13 (20.0) GI failure (incl. hepatic failure) 3 (4.6) Acute Physiology and Chronic Health Evaluation IV 82.7 (28.3) score, mean (SD)‡ Invasive treatments‡ Vasopressors 46 (70.8) Continuous sedation 61 (93.8) Alive at time of ICU discharge§ 53 (76.8) Patient status/location at time of follow up interview Home 25 (35.7) Hospitalized 3 (4.3) Long-term acute care facility 5 (7.1) Skilled nursing facility 7 (10) Nursing home 5 (7.1) Deceased 25 (35.7) ICU length of stay (days), mean (range) 17.7 (3-69) Hospital length of stay (days), mean (range)‡ 24.5 (4-99) * Values are reported as number (percentage), unless otherwise indicated. † Missing age on 1 SDM ‡ Missing data on 5 patients (SDM did not consent to inclusion of patient information) § Missing vital status at time of ICU discharge on 1 patient

25

Table 2. Selected examples of breakdowns in medical care and communication, as described by surrogate decision makers (SDMs)

Event type n Illustrative quotes Medical care breakdowns Preventable complication

Delayed, incorrect, or missed diagnosis

Delayed or inadequate treatment

Inadequate nursing care

Inappropriate use of pain and/or sedative medications

16 events 13 SDMs

They actually had his left wrist tied up to like a, an IV pole for keeping it at a 90 degree angle and he actually developed a quite considerable pressure wound, and now has probably lost 33 percent of the tissue around his wrist and had to go through a skin graft, and that was all because of positioning, which is completely preventable. [#64]

14 events 11 SDMs

I kept saying, "He's not right. He's not right. He's not right." He had swelling, he was very confused, he had the chills. I made the doctor come down three times. "We don't find nothing. We don't find nothing." So they released him on Monday and on Tuesday he was returned back with bacteremia. He had swelling, he had chills and he had been spiking fevers. They couldn't figure that out?! [#64]

13 events 9 SDMs

Well first they told us the surgeon was on vacation, he wouldn't be back until Monday. Then they told us he can't operate 24/7. I said, "I don't expect him to, but I'm sure there's other neurosurgeons in this hospital and I want to see one." […] They just gave a bunch of excuses, but the bottom line was, it was over the holidays and we had to wait for the guy to come back from vacation. [#374]

14 events 12 SDMs

I could see all this white saliva, mucus and stuff collecting in the mask. And so I said to her nurse, "Could you suction her," because I can see the CPAP was going to force that stuff down her throat. And the nurse said, "Yeah, yeah, yeah, we'll get to her, we'll clean her up in a minute." And I turned around and she had vomited and the CPAP mask was full of vomit. And it was forcing the vomit into her lungs. [#166]

4 events 4 SDMs

We told them to stop the sedation. I did not want him continuing because he was not getting an opportunity to wake. All right? I mean he was like constantly out and he, it took six days before he even showed any signs, or five days, before he showed any signs of […] Prior to that we got nothing because he was so sedated. They'd say, "Oh, we're not getting any response out of him. He's this, he's that, he's whatever." And I'm saying to them, "Well damn it, he can't respond to you if he's totally out of it, if he's sedated all the time." [#178]

Premature discharge or 10 events inadequate 10 SDMs discharge arrangements

Because it just seemed like they wanted her on a revolving door. Okay, boom, boom, boom, we did this, we're going here, we're going there, and then back- and then she went to rehab and it was just right back to the hospital again. And this happened like four or five times. So why are they putting her in rehab when she's not even ready? In fact, the last time they released her from the hospital they sent her to rehab because they wanted to give her a chance to rehab, and really she died that night. [#248]

26 Communication breakdowns

Inadequate information provision

Insufficient time or no regular time to meet with providers

Providers rude, dismissive, or uncaring to the patient or SDM

23 events 17 SDMs

The one thing that I was the most concerned with is I didn't have a really clear idea of who to go to for information […] nobody really sort of came in and said, "I'm the person in charge of her care, this is how you reach us. If you have questions, we'll call you and give you updates. You can expect to hear from us X amount of time." I just felt like I was constantly chasing someone down for information. […] And I never felt like I could give people good answers because I couldn't get good answers from anybody.[#40]

8 events 8 SDMs

Now the attendings very rarely even crossed the threshold into her room. So the only time, as a matter of fact, one of them, the only time I can ever remember the attending going into my mother's room was to chase after me to try to get me to sign to have a tracheotomy put in, which I was declining. [#209]

18 events 14 SDMs

And all my mother said was, "Oh, the surgeon said the bed has to be flat and you have to log roll him," and she turned right around and said to my mother, "Don't tell me how to do my job. I've been doing this for 14 years." Another nurse said the same thing, and she said, "I've been doing this for 20 years." [#374] He [the physician] put us off and he was very curt and so, finally, my mother got upset and I went out and said something to the nurse manager. I said, "This is ridiculous." He'd ask me a question. He'd say, "Well I already know that. I don't want to hear about that." I mean he'd cut you off when you start to say something to him. [#374]

Providers not listening to SDM/patient preferences or report of symptoms or problems

28 events 18 SDMs

I raised them [concerns]. The staff from the group home raised them. We raised them pre-op, but you can only say so much to people before they say, "Yes, we've been told." And maybe I just should've put my, in retrospect, put my foot down and say, "Take the tray out of the room and call speech therapy, and make sure that she's swallowing okay before you put food in front of her, especially liquids." [#191]

Nurses or staff unresponsive to patient or SDM calls or immediate needs

12 events 10 SDMs

I don't know if they're overworked, but in some of the cases she would call because she had to go to the bathroom and she couldn't go by herself, she needed some assistance, and they just would not come. And she would end up soiling herself. [#248]

13 events 11 SDMs

One of the residents, called me and said, "You know, you really should put your mother, do not resuscitate." So I'm like, after I'd seen what she'd gone through I said, "Well, yeah, I guess so, okay, put her on do not resuscitate." But the next day when I get in there, the attending said, "Oh, no, we're going to take her off do not resuscitate because she's going to be fine." [#166]

Conflicting information from different providers

27

Lack of continuity between providers

16 events 12 SDMs

Too many physicians and nobody taking any ultimate responsibility. In 7 days we had 3 different teams and nobody would be accountable for any other thing except for maybe the day they had to encounter him. [#320]

Providers prefer to provide less intensive lifesustaining care than the patient or SDM have requested

5 events 5 SDMs

I wanted them to do everything they could do to deal with the problem, everything they had. They told me all the stuff they could do, and I said, "Well I want you to do what you said you could do." They didn't do it. Oh, they got mad and they didn't want to do it. They wanted me to just put him a nursing home somewhere and just let him die […] And I wasn't doing that because I wanted the procedures to make sure we doing everything we can do to deal with his sickness. And they had tried to force me to cut it short, and don't do this and forget about it all. […] he's [the physician] trying to pump it up to make it so I can go along with what they want to do. He pumped it up. I know he was pumping it up. [#169]

Providers do not discuss alternatives to intensive lifesustaining care

4 events 4 SDMs

I would rather have taken her home and put her on hospice care, but nobody raised that hospice issue to me. They just said, "Oh, we're going to send her to rehab." [#248]

[…] transcript shortened [text inserted] word(s) inserted by authors for clarification

28

Table 3. Consequences of care breakdowns on patients and surrogate decision makers (SDMs) Consequence Patient

N

Illustrative quote

Physical harm or death*

25 events 16 SDMs

He could be log rolled to change bedding underneath him and that was it. He couldn't lay on his side and he couldn't sit up any more than 30 degrees. So you know those hospital mattresses, it was only a matter of time. I was waiting for the skin to break and, eventually, it did. So it broke. The skin actually broke on the Saturday before we went to the OR. He made it all of that time with no skin break. So if they would've allowed us to have another surgeon or operate on my brother. […]. And we asked why couldn't they operate over the weekend and they said, "[Patient's Name] is not an emergency." Really? Flat on his back for 18 days, he can't eat or drink. Really? What is an emergency around here, then? [#374]

Resulted in need for additional, or more invasive treatments

12 events 11 SDMs

Well yeah, he had to have a whole skin graft there and everything. So it's a very deep, he had lost the tissue right down to the bone. [#64]

Readmission to hospital, ICU, or additional ED visit

12 events 11 SDMs

On Sunday, his blood pressure plummeted way, way down, which is why they rushed him back to the hospital. It turned out that perhaps some of the medications were a little high. And they might have discovered that if they'd kept him one more day to see if in fact his blood pressure would be stable when he was standing and walking. [#148]

Prolonged hospital or rehabilitation stay

10 events 9 SDMs

And he's now got residual, he's got neuropathy. He's got problems now because of the [hematoma], but that's what's holding him back at [Rehabilitation Hospital]. [#197]

4 events 4 SDMs

And she didn't understand clearly what they were asking her because the night she actually died I had to explain it to her because they said, "[…] do you want us to start your heart if it stops?" And she said, "Oh, yes, absolutely." And, "Do you want us to put a tube down your throat if you can't breathe?" "Yes," she said. And I'm like, "Mom, do you understand what they're saying to you? […] you don't want to live on a tube, right?" She said, "No, no, not if I have to stay on that for the rest of my life, no, I don't want that." So then she kind of understood it if it was a long-term thing, but she didn't quite understand that she was at the long-term thing. But they kept intubating her and then pulling the tube out, but every time she'd have an issue, they'd put the tube back down her. [#248]

Patient received treatments they did not fully understand or want

29

Emotional distress

Pain or suffering

12 events 10 SDMs

At one point, [Patient’s Name] even said, “Do you know how humiliating it is to sit here like this [soiled with feces] and then know that someone you don’t really know is going to come and clean you up after you begged them to clean you up?” [#251]

14 events 11 SDMs

We said, "We can let her go, it seems futile, she's - it doesn't seem like she's going to get better. Her lungs have been full. You say she's got pneumonia. She's just in total agony. We can see she's chewing on the tube. She's just writhing in the bed when they back off her sedation. And she's just miserable." But, "No, let me keep treating." [#166]

Surrogate decision-maker

Emotional distress

42 events 28 SDMs

I'm now second-guessing myself, going, this is what my dad wants, but this is what this lady's telling me. Now what do I do? Do I do what my dad wants or do I do what this lady wants me to do? Am I really that much of a jerk of a kid trying to keep his parent alive? Had me really freaked out. […] I was freaking, my veins were popping out of my head, I was pissed. [#57]

Loss of trust in healthcare providers

16 events 13 SDMs

But it just made me concerned about what else could go wrong and stuff like this, that people do things right. I was concerned, that made me concerned. […] I just don't feel safe there no more. I mean, the stuff I went through, I don't feel safe with them, or trust them. [#169]

14 events 11 SDMs

I had to take a lot of time off of work. I had to take out time just to sit there and wait for someone to walk into the room that I could ask questions to, because I left multiple messages and no one called me back, in terms of doctors. I mean, like I said, I would always get a nurse, but they would say, "But we can't really tell you anything about the test results." And then the doctors don't call me back. [#40]

9 events 8 SDMs

They really don't know, they don't know how they look to the patient's family. And it's not just that we're family, this is I'm responsible for his medical decisions when he's in that situation. I need to have all this information. I need to know the facts. I need to not have conflicting statements constantly. And that's what it was. One day it would be this, the next day it would be conflicting information. You don't know what to do. You know? [#126]

6 events 5 SDMs

It cost us $2,000 for a room next door, because the nurses in the ICU thought it was fit for my 67-year-old mother to sleep in a chair 24 hours, night after night. […] But when we went out to the floor, [Patient's Name] went in a private room and those nurses went and got a stretcher. […] But in the ICU, they were like, "No, you can't have stretchers in here."[…] I said, "You know, we need the stretcher in the room. We're doing-this is 22 days, here." I mean I was about to fall over of exhaustion. So was my mother. And so we had the stretcher in there. And then, over the weekend, one of the nasty nurses came in and she said, "Oh, no, no. This stretcher's getting out of here." She took the stretcher away from us. [#374]

Life disruption

Impaired decisionmaking ability

Incurred avoidable expenses

30

Insufficient information to relay to family

3 events 3 SDMs

And I have to answer to his five boys and his sisters and his parents and they're asking me what's going on. And I'm like, "I don't know. I'm waiting for the doctor, […]." And then to tell them, "Oh, the doctor left. He's already gone," now that I sat there for four and something hours sitting there waiting. [#64]

Avoided visiting the patient in the ICU

3 events 3 SDMs

I did avoid going to the ICU. I didn't want to go there and see that lady, because I didn't know what my demeanor would've been. [#57]

* Included death in 5 instances. […] transcript shortened [text inserted] word(s) inserted by authors for clarification