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Narrative Inquiry in Bioethics, Volume 5, Number 1A, 2015, pp. 27A-42A (Article) 3XEOLVKHGE\-RKQV+RSNLQV8QLYHUVLW\3UHVV DOI: 10.1353/nib.2015.0001

For additional information about this article http://muse.jhu.edu/journals/nib/summary/v005/5.1A.geller.html

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Health Care Professionals’ Perceptions and Experiences of Respect and Dignity in the Intensive Care Unit Gail Geller1*, Emily Branyon1, Lindsay Forbes1, Cynda H. Rushton1, Mary Catherine Beach1, Joseph Carrese1, Hanan Aboumatar2, Jeremy Sugarman1 1) Johns Hopkins Berman Institute of Bioethics, Johns Hopkins University, 2) Armstrong Institute for Safety and Quality, Johns Hopkins Medicine *Correspondence concerning this article should be addressed to Gail Geller, ScD, MHS at Johns Hopkins University Berman Institute of Bioethics, Deering Hall, Room 202, 1809 Ashland Avenue, Baltimore, MD 21205. E–mail: [email protected]

Acknowledgements. This work was supported by a grant from the Gordon and Betty Moore Foundation. The authors are grateful to the staff in both intensive care units for facilitating recruitment and to the clinicians and other health care professionals who participated in the focus groups. We are also grateful to Dr. Ruth Faden, Dr. Nancy Kass, and Leslie Meltzer Henry, JD, MSc, who provided input and guidance throughout this work. We appreciate the input that other Berman Institute faculty provided at faculty meetings. Conflict of Interest. The authors report no conflicts of interest. Abstract. Little is known about health care professionals’ perceptions regarding what it means to treat patients and families with respect and dignity in the intensive care unit (ICU) setting. To address this gap, we conducted nine focus groups with different types of health care professionals (attending physicians, residents/fellows, nurses, social workers, pastoral care, etc.) working in either a medical or surgical ICU within the same academic health system. We identified three major thematic domains, namely, intrapersonal (attitudes and beliefs), interpersonal (behaviors), and system (contextual) factors that influence treatment with respect and dignity. Participants suggested strategies for improving treatment of patients and families in the ICU with respect and dignity, as well as the related need for enhancing respect among the multidisciplinary team of clinicians. Implementing these strategies will require innovative educational interventions and leadership. Future research should focus on the design and evaluation of such interventions on the quality of care. Key Words. Bioethics, Critical Care, Dignity, Family, Focus Group, Health Care Professional, Patient Experience, Qualitative Research, Respect

T

reatment with respect and dignity is fundamental to high–quality, ethical medical care and patient satisfaction. The role of respect and dignity in patient care is well–described in the conceptual literature (Beach, Duggan, Cassel & Geller, 2007; Henry, Rushton, Beach, & Faden, 2015; Rushton, 2007). Some studies have explored patients’ perceptions and experiences of treatment with respect and dignity in the outpatient setting

and in palliative care (Beach et al., 2015; Bishop, Perry, & Hine, 2014; Chochinov et al., 2008; Jenkinson, Coulter, & Bruster, 2002). However, little is known about health care professionals ’ perceptions regarding respect and dignity in the intensive care unit (ICU) setting. Inferences about treatment with respect and dignity in ICUs can be made from studies of critical care clinicians that were conducted for different

Narrative Inquiry in Bioethics Volume 5.1A (2015) 27A–42A © 2015 by Johns Hopkins University Press

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purposes (Bishop et al., 2014; Cioffi & Ferguson, 2009; Cowin & Eagar, 2013; Garon, Urden, & Stacy, 2009; Hansen, Goodell, DeHaven, & Smith, 2009; Happ et al., 2011; Khademi, Mohammadi, & Vanaki, 2012; Kirchoff et al., 2000; Llenore & Ogle, 1999; Soderberg, Gilje, & Norberg, 1997). For example, a study of resident physicians suggests that the scarcity of time, the drive for efficiency, and the focus on technology in ICUs interfere with the kinds of behaviors (e.g., listening) that characterize compassionate care (Bishop et al., 2014). Evidence from studies of nurse–patient interactions suggests that effective communication is particularly difficult in the ICU because many patients are intubated, actions are often time sensitive, and the environment is noisy (Llenore & Ogle, 1999). Communication challenges and barriers within nursing teams and a loss of respect and civility across the healthcare workplace have also been documented (Cowin & Eagar, 2013; Khademi et al., 2012; Soderberg et al., 1997), and nurses report a prevailing sense of lack of control within the ICU (Garon et al., 2009; Hansen et al., 2009; Kirchoff et al., 2000). Taken together, these studies suggest that hierarchy, power imbalance, perceived lack of autonomy, and technocratic management adversely affect communication between nurses and physicians. Such tension may contribute to mutual feelings of disrespect, moral distress, and ultimately disrespect toward patients and families. Despite these related studies, none were explicitly designed to explore the treatment of patients and their families with respect and dignity in the ICU. Moreover, none explored the perspectives and experiences of senior physicians, particularly attending physicians, and members of the health care team other than physicians and nurses. This study was intended to address those gaps, and to solicit feedback from multidisciplinary clinicians on factors that facilitate or impede treatment of patients and families with respect and dignity in the ICU.

Methods

with four different types of health care professionals: 1) attending physicians, 2) nurses, 3) residents/ fellows, and 4) other care providers, including social workers, physical therapists, occupational therapists, respiratory therapists, chaplains, patient care technicians, and sitters. All groups consisted of a convenience sample of health care professionals who were willing to provide their opinions. Participants were recruited from two ICUs, one surgical and one medical, one located at the Johns Hopkins East Baltimore Campus and the other at the Johns Hopkins Bayview Medical Campus. Our recruitment process involved two steps. First, we circulated a flyer that announced the focus group plans and requested that interested health care professionals contact our study team for further information. Second, a member of our study team joined regularly scheduled clinician meetings in each ICU to describe the focus groups and to invite those who were interested to contact the study team for further information. Two study team members (E.B. and L.F.) worked with unit leaders to organize the focus group logistics. One of each type of focus group (attending, resident/fellow, other) was conducted at each ICU. Three nurse focus groups were conducted, two of which were in one ICU.

Setting The surgical unit is a 10–bed unit primarily attending to critically ill trauma and general surgery patients complex operative procedures. Patients in this unit are typically older than 15 years of age and have conditions associated with, but not limited to, general surgery, transplantation, trauma, and vascular problems. The average length of stay in this unit is 2 days with a staffing ratio of one to two nurses per patient. The medical unit is a 12–bed unit primarily attending to adult and geriatric patients with complex, multisystem illnesses. The average length of stay in the medical unit is 3 to 5 days with a staffing ration of one nurse to every two patients.

Study Design As part of a larger, multimethod project focused on treatment with respect and dignity in the ICU (Sugarman, 2015), we conducted nine focus groups

Data Collection Focus groups were conducted between May and November of 2013. A semistructured focus group

Health Care Professionals’ Perceptions & Experiences of Respect & Dignity in the Intensive Care Unit

guide was used to encourage participants to recount experiences and discuss their opinions and interpretation of the concepts of respect and dignity, behaviors that may or may not be perceived as respectful or dignity preserving, and suggestions for improvement of treatment with regard to respect and dignity. Specific questions included: 1) In general, what does it mean to treat people with respect and dignity, how do these concepts relate to each other, and how do they differ? 2) What does treatment of patients with respect and dignity involve in the ICU setting? 3) What are system or unit factors that either help or pose barriers to treatment of patients with respect and dignity? 4) What clinician behaviors or actions would be perceived by patients/families as respectful or disrespectful? What unit/system factors contribute to successful and consistent demonstration of those behaviors? What factors pose barriers to demonstration of those behaviors? 5) How can ICU care be improved so that all patients are consistently treated in a respectful and dignity–promoting manner? All groups were facilitated by the same moderator (G.G.), who emphasized that the goal was to learn about the range of perspectives regarding respectful and dignity–promoting or dignity– preserving treatment in the ICU, not necessarily to gain consensus among participants. Oral consent was obtained from participants at the outset of each focus group. Focus group participants each received a $50 gift card as well as refreshments. All focus groups were audio recorded and then transcribed. Transcripts were redacted to remove personal identifiers. This study was approved by a Johns Hopkins Medicine Institutional Review Board.

Data Analysis Thematic content analysis was utilized to explore the data. After each focus group, the moderator and at least one additional researcher (E.B. and/or L.F.) who was present during the groups discussed any first impressions of the themes that surfaced. Afterward, these three study team members independently reviewed transcripts and identified major themes. These study team members then met and collectively developed a preliminary codebook.

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Subsequently, these study team members met multiple times to further refine the codebook, define the themes, and settle any disagreements regarding themes and thematic classifications. Additional input was provided throughout this process from J.S. and H.A., as well as from a team composed of members with various backgrounds affiliated with the Berman Institute of Bioethics (see Acknowledgements). After a final version of the codebook was developed, EB and LF coded all transcripts independently using NVivo 10 (QSR International Pty Ltd, Victoria, Australia). Agreement on thematic analysis between E.B. and L.F. was high. Where coding discrepancies existed, E.B. and L.F. met to discuss the discrepancies and reach an agreement on how the text should be coded.

Results A total of 63 people participated in the focus groups, as follows: attending physicians (n = 10; all men); nurses (n = 21; 18 women); residents/fellows (n = 10; 5 women); and other care providers (n = 22; 14 women; Table 1). We categorized themes that emerged from the data into three major domains: intrapersonal, interpersonal, and systems or contextual factors that influence treatment with respect and dignity. Each of these domains includes several subthemes as described herein (Figure 1).

Intrapersonal Influences on Respect and Dignity The intrapersonal domain captures health care professionals’ individual attitudes and beliefs that may influence treatment with respect and dignity in the ICU. The subthemes included are assumptions and judgments that health care professionals may or may not make about patients and colleagues, the way health care professionals regard others and their use of labels.

Making assumptions and judgments Some participants reflected on the importance of recognizing that patients are “human,” just like

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Table 1. Focus Group Participants Type of Focus Group

ICU 1 (n)

ICU 2 (n)

11

10

Group 1

5

—

Group 2

6

—

Attending

4

6

Resident/fellow

7

3

14

8

Nurses

“Other”

Figure 1. Graphic Depiction of Themes and Sub–Themes.

Health Care Professionals’ Perceptions & Experiences of Respect & Dignity in the Intensive Care Unit

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clinicians, and that being treated with respect means not judging patients negatively:

treatment, ultimately promotes treatment with respect and dignity.

I try to, before I judge a patient for not listening to what I’m telling them, try and remember okay I don’t always do all the things that I’m supposed to do as well. I’m human. They are human. And hopefully at some point things might change. (Physical Therapist)

By identifying somebody by who they are and not “Bed 7” or “That COPD patient.” You are according them respect. They are a human being; they are a person not an item, not an abstract concept. (Attending Physician)

Participants articulated concerns about presuming that all activities associated with patient care are acceptable to patients. When such assumptions are made, patients are likely to feel disrespected and even robbed of dignity: And you need to make sure that you’re just not assuming that everything that you do when you touch a patient is okay because it may not be okay to them and they’d be very offended and disrespected and feel a loss of dignity by some of the things that we do. (Respiratory Therapist)

Participants also warned against assuming that all patients have similar viewpoints and experiences. Operating on commonly held suppositions about different groups of people, and not getting to know them as individuals, was considered to be disrespectful: To me respect means approaching me as an individual and not assuming that I am coming with the same set of beliefs and standards and wishes and goals as most. (Social Worker)

Regard Participants reflected on the way in which patients are regarded by clinicians and other health care professionals, and the influence such regard has on perceptions and experiences of respect and dignity. One attending physician said: I don’t know her name but she’s one of the housekeepers who goes around to all the rooms and empties the trash and does a little bit of cleaning of the floor . . . she actually directly addresses almost every patient every morning as if this was a normal day for them which is great. I mean I think she engages [them] as if they were a person not a patient. (Attending physician)

Participants reported that recognizing patients as unique human beings, not just cases requiring

One resident pointed out the additional importance of regarding all patients as equally valuable regardless of their status in life: For me treating someone with dignity is remembering that they are a unique individual and a valuable person irrespective of their material contributions to society. Just by simply them being a unique human person. (Resident/ Fellow).

By contrast, participants expressed concern about having negative regard for patients and families, which can lead to undesirable behaviors such as “labeling.”

Labeling In all focus groups, participants reported use of labels to characterize specific groups of patients. For example, the label “frequent flier” was used to describe noncompliant patients who have repeated admissions to the hospital. [With] our frequent flyer patients, we certainly don’t have the same level of respect as some older lady who came in her first admission, and she, unfortunately, got pneumonia out of no fault of her own versus this patient who just continuously chooses poor lifestyle, and comes in and disregards all the medical advice and treatment that we provide him. We’re not respectful of him, but I think for the most part, the staff try to, or we should, treat them in the same dignified manner. (Nurse)

Another common classification of patients was based on socioeconomic status. If I had one wish it would be . . . treating patients with respect and dignity regardless of socioeconomic status, regardless of what their family is like, regardless of where they came from. . . . I see it a lot. That a patient gets handed off to me and it’s, “Oh well, this patient is never going to come in for rehab anyway. So we don’t need

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[to] see them as much.” You create a label on patients. . . . From our management we’ll get told, “Well, we have a VIP so they actually need to get seen five times a week, or they’re a donor, or they come from this family we really need to get in there once a day, that’s a priority.” Which is taking away from the patients—it’s disrespectful. It’s that they’re not as important. (Speech Pathologist)

This reflects a power imbalance within the patient population whereby those with higher status are more likely to be treated with respect and dignity.

Interpersonal Influences on Respect and Dignity The interpersonal domain refers to specific behaviors that influence clinicians’ interactions with others and may facilitate or present challenges to treatment with respect and dignity. Sometimes these behaviors are nonverbal: When I feel really respected it’s that feeling that you’re on the same level as somebody else, whether you’re a patient or a clinician . . . and I think that there can be a lot of nonverbal associated with that. If somebody is sitting in a bed, pulling up a chair and kind of being at the same level as them as opposed to looking down and having that sense of condescension. (Social Worker)

In discussing interpersonal behaviors that reflect treatment with respect and dignity, participants distinguished between health care professionals’ interactions with patients and their families as well as interactions with each other. These are described in turn.

Interactions with patients and families In interactions with patients and families, interpersonal behaviors that influence treatment with respect and dignity include talking about sedated patients, making the effort to explain or educate, honoring physical/bodily concerns, giving choices or control, being sensitive to patient experience, and listening to patients.

Talking about sedated patients Most patients in the ICU are sedated at some point during their stay and are seemingly unaware of their surroundings. Many participants discussed the potential for inappropriate conversations to occur in the presence of these patients, and considered such conversations to be very disrespectful: The conversations that occur over the bed that are inappropriate. Things that are said. . . . I still believe even when people are intubated and sedated, that they can hear you. And I always think, “God, if this guy could hear—or if I was this patient, and I heard that, I wouldn’t want this nurse.” (Nurse)

At times, participants referred to blatant occurrences of disrespectful and dignity reducing behavior toward unconscious patients: I actually had an experience in medical school where I witnessed some providers that were making fun of a patient as he was intubated and sedated. I mean, he was completely out, but it was just very disrespectful, and that always— that’s stuck in my mind forever. (Resident/ Fellow)

Health care professionals suggested that treating sedated patients with respect and dignity is linked to viewing them as human beings: When the sedation was lifted [the patient] told everybody, “I heard all the mean things that you guys said about me.” So yeah, just watch your language. You know, remember people are people. (Nurse)

Although it was a commonly held view that caring for sedated patients poses unique challenges to treatment with respect and dignity, participants were mindful of ways to accommodate these challenges. Some participants stressed the importance of being respectful toward the families of sedated patients. [I]n our unit we do have a lot of patients who are sedated or even just out of it for whatever reason but they’ll have family members there and I think telling the family member, “This is what I’m going to do, this is why I’m doing it.” I think is really big to help to make sure they feel that you’re looking out for their family member and to know that I’m going to treat my patient

Health Care Professionals’ Perceptions & Experiences of Respect & Dignity in the Intensive Care Unit

and their loved one the same way I would treat my brother or my mom. (Nurse)

Making the effort to explain or educate Participants in all focus groups discussed the importance of taking time to explain things to patients and families, keep them up to date, and potentially calm any fears surrounding treatment. Taking the time to explain stuff that I know from my medical background is routine, but still is very angst–provoking [for patients and families]. . . . It’s stepping out of the box of what’s considered routine and trying to explain those things a little bit more . . . to the patient. (Attending Physician)

Others indicated that treating patients and families with respect and dignity requires health care professionals to provide explanations in a way that patients and families can understand without being patronizing. There’s respect also in the sense of . . . you don’t want to be talked to as if you’re dumb or at a lower level of education. You want to be talked to in way that you can understand what’s going on, particularly in these settings you’re scared. You’re probably not medically oriented and you just don’t have the same level of knowledge as the people taking care of you. It doesn’t mean that you’re not smart and not capable of understanding things. It’s just that it needs to be explained in a certain way. (Attending Physician)

Overall, participants agreed that efforts to educate patients and families should be individualized to ensure their understanding while avoiding condescension. Nurses frequently reported having additional responsibilities for providing explanations to patients and families in the ICU. It’s hard . . . they don’t understand medical lingo. So, everything you’re talking about in rounds, doesn’t correlate to what they understand in their minds as what’s going on. So . . . a lot of times after rounds, I’m going in and backtracking and explaining every detail about that in normal English [so] people can understand. And I feel like we’re constantly having to backtrack and explain everything to the patient. (Nurse)

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Honoring physical/bodily concerns Issues surrounding the physical body were discussed in detail across all groups. Participants mentioned that many invasive procedures as well as frequent interventions and observations in the ICU increased opportunities to overlook a patient’s dignity. Specifically, failures to address pain and increase comfort were mentioned as sources of disrespectful treatment to those who could voice their experience of pain. A lot of times we don’t treat anxiety and pain the way we should. And a lot of times . . . we’re getting direct orders; do not give this patient any more [pain medicine]. We need them to wake up. We need them to get out of bed. But to me . . . it seems disrespectful for some patients that they are able to communicate or point that they’re having pain, and why we are not . . . giving them that added amount of pain medicine? (Nurse)

Another potential threat to patients’ sense of dignity specifically relates to privacy and modesty. They take your clothes. You have to wear gowns. You have no sense of privacy, right? All those things that would give you a sense of yourself and dignity and everything to some extent are taken away because you’re ill and you’re in the hospital and that’s not necessarily appropriate. (Attending Physician)

However, some participants thought that certain aspects of treatment in the ICU can be handled in a more sensitive way, thus according patients more dignity and respect. I think incontinence is probably one of the main ways . . . we could risk really violating our patients’ respect and dignity, how it’s handled from everything from body language to how it’s physically handled is really important, using proper draping in terms of maintaining dignity and respect. (Occupational Therapist) [I]f family is in the room and the patient wants to go to the restroom, out of respect for the patient I will ask them can they step out—[they say] “Oh no I see this at home all the time,” but I feel like the patient should still have a little bit of privacy so I think that you should step out so the patient can go to the bathroom and take care of business. (Patient Care Technician)

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Finally, many participants conveyed that, although certain aspects of treatment may infringe upon patients’ sense of dignity, they are done so in a respectful way to provide the best treatment possible. This notion often came up in the context of end–of–life scenarios, particularly when patients acutely decompensated and required resuscitation. [I]f you’re doing a significant resuscitation and at some point someone’s clothes have all come off and it doesn’t look like a pretty sight but we’re doing what we can to save the person’s life, it doesn’t look like a very dignity–promoting situation but we’re still very respectful. We’re trying to be very respectful and part of the respect is to give the person the best possible medical care and the kind of medical care you want your own family to get. (Attending Physician)

Giving choices or control The ICU is a highly controlled environment, which can interfere with patients’ autonomy. Participants concurred that giving patients little or no choice over what happens to them—which often occurs in the ICU—can undermine treatment with respect and dignity. You can think of dignity as like the physical acts and appearance of being human and everything that you’re able to control as your own person. I think just being in the hospital takes away some of that control because we tell you when you can eat and when you can sleep and how you need to dress and I mean there’s things you just can’t control. So even if you’re a perfectly healthy person and you’re just here for something little you lose that aspect of your dignity . . . by being in the hospital. (Nurse)

However, participants also agreed that there are opportunities to alter their practice to restore some sense of control to patients. [P]eople go out of their way to somehow empower the patient to be not a patient and actually be someone in a decision–making capacity to say, “You’re in control,” even if it’s something simple as, “You get to choose if it’s Jell–O versus a smoothie.” . . . It’s always some version of that where you can have a respectful interaction.(Attending Physician)

I think sometimes we lose the sense of what gives somebody . . . dignity . . . what we encounter a lot in the hospital is. . . . All of a sudden, you have a patient who is self–sufficient, independent, doing things on their own, where now you need three people to come in and help them go to the bathroom . . . We come in and we become kind of just immune to it almost. So I think when it comes to dignity . . . [try] to give the patient back as much of that independence as possible, not necessarily just going in and doing something for them when maybe they can do it for themselves. (Speech Pathologist)

Being sensitive to patients’ experiences Participants admitted that it is easy to overlook how patients might be experiencing the highly technologic, fast–paced environment of an ICU. They also acknowledged that, at times, they are insensitive to the needs of the patient and they indicated that overall unit culture fostered this behavior. I don’t feel like we have a systematic and a continuous way of understanding patient experience and family experience . . . We don’t routinely monitor [that], if we do it’s the blood, sweat and tears of staff who do it in their off hours. It’s not built into our structure. (Attending Physician)

Other clinicians discussed specific instances, such as admissions, when patients’ experiences are likely to be marginalized. [T]he thing that we do when a patient rolls in the door, and the nurse delivering the patient will be somebody that you maybe haven’t seen in a long time. And before you know it, he’s talking about the kids, he’s talking about, “Look at my vacation pictures.” The iPhone’s getting pulled . . . a lot of us have worked here a long time and know each other well, and can be very familiar. But this is somebody being admitted to the Intensive Care Unit. Probably scared to death, and we’re just lifting them over and moving them, and you know, it’s probably the worst indignity is that you’re not even respecting their experience of being admitted to this very intense environment. (Nurse)

Overall, participants conceded that they needed to be more aware of and sensitive to the patient and family experience to increase treatment with respect and dignity.

Health Care Professionals’ Perceptions & Experiences of Respect & Dignity in the Intensive Care Unit

Listening to patients Participants frequently mentioned that one of the ways patients may feel respected and as if their sense of dignity is being preserved occurs when clinicians “hear” them, that is, having their thoughts, concerns, and opinions taken seriously. Clinicians recognized that they tend to discount patients’ wishes, particularly when they believe they can do more in terms of aggressive and life–sustaining treatment. We very much guide and direct what we think is the best option for them [patients]. And when it comes to withdrawing care, we also don’t respect many people in that we say well there’s more we can do, there’s more we can do, when the person says, “Look it, I’ve had enough. I’ve lived a long enough life I just want to peacefully pass away.” And I’ve seen many times where people’s wishes are not upheld immediately, maybe over time they are but not immediately. (Resident/Fellow)

Participants thought it was ultimately disrespectful and dignity reducing to patients to insist on a treatment plan without weighing the patients’ wishes. Disregarding patients’ end–of–life wishes can be attributed to family members and clinicians, as reflected in the following. I don’t feel like we let the person die with dignity, because that person was able to say exactly what they wanted, they said it clearly multiple times to many people, was oriented, and she made her own decision, and then her family—like I feel like we kind of just let her family guide her care, because they weren’t ready for her to go yet. And then she—when she passed, she didn’t look like herself. She was moaning, she looked miserable. And that’s not fair. And I think that’s the most important choice anybody could make is how to die. (Nurse) The first scenario that jumps to mind when we talk about dignity is end–of–life care in the ICU. . . . It strikes me that dignity has something to do with kind of conforming to patient’s wishes . . . a patient who doesn’t want . . . to stay in treatment but yet we persist in doing it, I see as a violation of their dignity. (Attending Physician)

Interactions among clinicians Within the interpersonal domain, participants also articulated the importance of respect between and

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among colleagues that may have repercussions for treating patients and families with respect and dignity. Nurses, allied health professionals, and residents alluded to the role that senior physicians play in setting the tone in the unit by modeling disrespectful or respectful behavior. I would say by and large my experience on our unit has been great. I feel respected at work especially amongst the nursing staff . . . the only instances that I’ve ever felt disrespected has usually been at the hands of a physician saying something to me and it’s usually a senior physician, not the residents. (Nurse) I was working with a patient and I gave him the whole diagnosis, what was happening and I said, but I’m just a speech pathologist and your team is going to talk you. And the team was rounding outside of the room and the attending at the time pulled me out and . . . she made a very strong point to say, “You’re not just a speech pathologist. This is your specialty and this is what you bring to the table that nobody else here can comment on.” And since that day I’ve never said, I’m just a speech pathologist because . . . it’s just so important to really recognize that what you bring to the table. (Speech Pathologist) [M]ost recently the attending really showed me respect and it made me want to sort of rise to the occasion of doing the work by him really acknowledging who I was individually. . . . And not just like taking that information in but . . . trying to incorporate that. So I felt very acknowledged as not only part of the team but as what I might bring to the table as part of the team. And it made me want to be more engaged and more present. (Resident/Fellow)

Participants indicated that failure to function well as a team, to establish rapport and to listen to each other can ultimately have adverse consequences for the treatment of patients and families. Teamwork Across the groups, participants identified inadequate teamwork as a potential source of disrespect. In particular, nurses indicated that they felt disrespected or dishonored when doctors would leave them on their own to convey information to patients and families.

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Some of them [doctors] are really good and they’ll come in with me, and sit down at the bedside with the patient and the family member, and like work with me. And then other times, they’re just like, “Can you just do it?” . . . I feel like . . . they put everything on the nurses. (Nurse)

Other members of the health care team suggested that respect and a sense of dignity could be cultivated through mutual recognition of roles and acknowledgement of the importance of different roles to the team as a whole. There are lots of people that trump me in terms of just what the patient needs. But I think recognizing that it’s an interdisciplinary team and that every single person in this room is part of that team and it serves a vital[ly] important role. And I just think that the role needs to be respected across the board, no matter what that role is. (Pastoral Care)

Participants frequently discussed the potential for disagreement or inconsistency among the team to result in disrespect of the patient. [W]e aren’t always on the same page with everything. . . . I think it is an issue of respect to the patients, because it gets very confusing when you have . . . the surgical team saying one thing, and the ICU team saying a different thing. Especially as regards to prognosis . . . or ultimate disposition of things that patients are very concerned about. (Resident/Fellow)

Rapport Participants emphasized the importance of cultivating a sense of camaraderie among the team, not only to enhance teamwork and interprofessional respect, but to influence the respectful treatment of patients and the quality of patient care. Participants indicated the need to bridge the gap between doctors and nurses to enhance teamwork, rapport, and ultimately patient care. I’ve started to kind of try to be more tuned into nursing and my hope is that I can connect with them and it would be better for patients overall. So I really try to make a concerted effort to learn every nurse’s name every time I go to a unit and to feel like we’re sort of more on the same page,

at least, open the lines of communication a little bit. (Resident/Fellow)

Listening to each other Participants often reported that a barrier to respectful and dignity–promoting interactions occurs when fellow health care professionals fail to take their input regarding patients seriously. This emerged most often in the focus groups of nurses and other health care professionals. Every morning we have to do rounds, we have to present our whole assessment on the patient. And . . . it takes me about 10 minutes to get through my whole ordeal—but then they’ll (physicians) either say things different than what I have just said, and I just came out of the room assessing the patient, or they’ll ask me questions that I’ve already said, or they just don’t listen to me at all. They’re standing there on their iPhone flipping away, or looking at each other. (Nurse) “Respect everyone’s job . . . don’t treat me like “she just a tech.” . . . Make me feel important . . . [so that] my input counts too. (Patient Care Tech)

System or Contextual Influences on Respect and Dignity In all groups, there was recognition that the ICU is a unique environment with structural and contextual idiosyncrasies that influence treatment with respect and dignity. Many participants talked about time, or lack thereof, and the urgency or severity associated with patients’ health status. [I]t’s really tough given . . . the physical structures of ICUs and the nature of individuals being admitted to the ICU. People come in sick. We have to use very direct questioning, sometimes, to get to the etiology of their illness and to advise the treatment plan in a timely manner. We don’t have a lot of time. So sometimes we have to use a lot of close–ended questions, which may not feel like the most respectful . . . you have such a broad team of people in and out of the room throughout the day and night. We don’t respect people’s time. We don’t come on their schedule. We come on our schedule. We don’t respect people’s sleep or rest. We wake them up at every hour of the day or night. We bathe

Health Care Professionals’ Perceptions & Experiences of Respect & Dignity in the Intensive Care Unit

people at 3 o’clock in the morning for some unearthly reason. . . . As far as I’m concerned, to keep the staff awake at night so we’re not falling asleep. We don’t respect people’s wishes, I think, to the extent that we could because we don’t have the time to discuss treatment options as thoroughly as we might in an outpatient setting. People are pressured somewhat because of the critical nature of their illness to make decisions in a very rapid or time sensitive nature. And so we don’t really respect people’s opinion either. (Resident/Fellow)

Participants identified other structural factors as well.

Hierarchies Many health care professionals indicated that the hierarchy inherent in the health care system in general serves to create or reinforce power differentials within the care team and between the care team and patients and families. [E]ven though our documentation says this is what we should follow and the patients are wanting this. There’s that conflict of well no, I’m the MD, you need to do this, this is how it’s going to go. And I think when there’s that lack of understanding and respect of what it is I do, you do, he does, she does, that defaulting to the hierarchy places the patient in a compromised situation where they’re not getting good continuity of care and they’re not getting the multidisciplinary recommendations that we’re trying to reinforce for our teams and for our patients and advocating for them. So I think that that hierarchy can get really dangerous when there’s an ignorance of what exactly we bring to the table. (Social Worker)

Of note, all groups recognized the impact of the hierarchy. Although attending physicians were aware of the hierarchies in the ICU, health care professionals lower in the hierarchy (i.e., residents, nurses, and other care providers) articulated feelings of helplessness and inability to achieve change. That is the culture . . . if the attending says something grossly disrespectful or inappropriate in front of the patient, or within earshot, we’re not really empowered to speak up and defend. You wouldn’t accept it from a stranger or a friend or a colleague, potentially, in another position, but

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from attendings, what they say goes. (Resident/ Fellow)

Limitations on clinicians’ availability Participants also articulated workforce challenges, including rapid turnover within the care team, as barriers to treatment with respect and dignity. I’ve had the same attending for 2 weeks. And I’ve had attendings who were there 1 day, you know, come in 1 day, one weekend, and the next day is another attending. And I mean obviously it’s easier to treat someone as human when you’ve known them for more than 5 minutes and you have a relationship. (Resident/Fellow)

Particularly, the unintended consequences of duty– hour restrictions (limitations on the amount of time that physicians in training can work) came up often as not only a barrier to treatment with respect and dignity, but as a barrier to teamwork. I used to feel more of a bond with my team when we didn’t quite have these issues of duty hours and whatnot versus now it’s just like it’s, “Hi, how are you? My name is so–and–so, what’s yours? Okay good. We’re going to be working together next couple of days.” It becomes very frustrating. I get less of a sense of team than I’m used to. (Attending)

Documentation requirements and technologic interface Frequently, participants pointed to increasing documentation requirements and over–reliance on technology as added barriers to treatment with respect and dignity in that these take time and effort away from building relationships with patients. I think just the fact that we’re so into having to put all this documentation in that’s on the computer that you lose that connection with the patient because you can’t have as much eye contact. . . . It’s more like that sometimes caregivers can be talking to the computer versus that connection you try to build, that partnership with the patient. You lose that. (Respiratory Therapist) [T]hat aspect of the lack of time to provide respectful care is the excessive documentation

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that we have to go through . . . to get a patient admitted to the ICU, you know, I spent 15 minutes on average interviewing and examining a patient. And I spend 1 hour and 45 minutes writing the note and putting in orders for the patient. What if that was reversed? . . . That would be a huge, huge transformation. (Resident/Fellow) I think it [technology] also impedes with . . . respect at the staff or physician–physician level. I’ve seen it where a house staff will be sitting in front of a computer in the physician’s room. A nurse will come up to the room and say, “Hey, Mr. Jones is acting whatever.” And then the house staff says without looking, “Okay, I’ll order some,” . . . whatever Haldol, x–ray,” and then the nurse you can see on his or her face that they’re just sitting there saying this was not a meaningful interaction. Either you could come talk to me or you could come look at the patient . . . it creates this tremendous barrier between those levels of care. (Attending Physician)

Teaching and learning environment Some participants indicated that the ICU in a major teaching hospital poses unique barriers to treatment with respect and dignity. We’re a teaching hospital. We’ve got 18,000 people that want to come into the room to stare at a patient doing some such thing. . . . We have family meetings all of the time and we talk about very delicate subject matter often including withdrawing care, dying patients, and I know that we’re a teaching hospital and I’m proud to be a part of a teaching hospital, but do I think it’s appropriate to have ten doctors in a family meeting with three family members? No . . . we’re taking the family’s dignity away by inviting everybody and their mother to come to the meeting. (Social Worker)

Others discussed that teaching itself needs to be done in a respectful way which would inherently promote individual sense of dignity as well. I think we all spoke about how we’re not often treated with respect from the physicians, but I have also witnessed nurses not being respectful to the physicians. Just maybe out of the sheer fact that, “I’m experienced, so I know what’s going on, I know how to handle these cases probably better than you, because you’re new, you’re just out of school, it’s your first year intern.”

So I’ve seen it, you know, both ways . . . we are a teaching institution, and I think that’s great. [But] teaching can be done in a respectful way. And I’ve witnessed it from both sides. (Nurse)

Suggestions for Improving Treatment with Respect and Dignity in the ICU Finally, all groups provided suggestions for improving treatment with respect and dignity. Some participants focused on specific opportunities to enhance respectful interactions with patients. Activities of daily living, bathing and dressing . . . that is a great opportunity to disrespect someone . . . tremendously. And so you attempt to use all the things we talked about: treat them like a human being, use a lot of draping, make sure they’re comfortable, gain permission. Every step of the way you should be gaining permission. You should never assume [ask], “Can I take a look at your feet? I’m going to lift up your covers. Okay now I’m going to take [a look] at your arm. Can I touch you?” I think I try and do that sort of asking permission each step of the way. (Occupational Therapist)

In addition to always seeking permission, and being particularly mindful during circumstances in which the potential for violating dignity is inherent, participants talked about the value of strategies for personalizing patients such as displaying photographs. [F]or me, when I go in the room and I don’t just see an ET tube and a drape, but I see . . . what this person looked like when they were at a Super Bowl party 3 weeks ago walking, talking drinking a beer, just a totally different person. For me that helps me remember that they’re a person and that they’re not just a pathophysiology. So I think anything we do that helps make the hospital feel a little bit more like home for the patients and their family and reminds us of that patient’s humanity and personhood makes it a lot harder to treat them like an object. (Resident/Fellow)

Others highlighted strategies for improving respectful treatment of family members. Other units and areas, they may integrate the family into rounds. . . . From our end, we’re always worrying about how that’s going to come across because we’re using the lingo that we’re

Health Care Professionals’ Perceptions & Experiences of Respect & Dignity in the Intensive Care Unit

using but to some extent it may be good because it may help in terms of humanizing things and according that respect. (Attending Physician)

Still others underscored the importance of valuing characteristics associated with respectful and dignity–promoting treatment in the selection, education, and training of health care professionals. [A] large part of being a good physician, or being a good listener, or being respectful begins far, far in the past. Including selection of individuals that are interested in care of people, and not necessarily people that have the best board exams, but the people that have a track record of being respectful. (Resident/Fellow) I think you have to teach it [communication skills] young . . . as far as the higher ups the attendings, and even some fellows, they’ve been doing what they’ve been doing for so long that you really can’t do anything [to change it], but teaching the med students and making sure they . . . keep in mind the respect and dignity aspect and teaching the residents and having it be an important part of what they’re doing. (Nurse)

One particular suggestion to reinforce respect between prospective doctors and nurses was to cultivate more opportunities for interprofessional education. [W]e did a simulation day with fourth–year medical students . . . a mock patient, family, doctor, nurse scenario. And that was great because I think establishing the trust and the communication amongst doctors and nurses earlier on builds those pathways for the future. . . . When we did it, a lot of the medical students were blown away like what we knew. They just kind of assumed that we didn’t know anything. We were just . . . the sheep that kind of follow the orders and it . . . really surprised them and I think that was a great eye–opening experience that . . . needs to be stressed more. (Nurse)

Discussion We observed that health care professionals in the ICU have complex and nuanced views about respect and dignity in the care of patients and families. Participants in our study believe that respect requires us to treat others as human beings, regardless of

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health status, socioeconomic status, or professional status. They identified specific attitudes (intrapersonal), behaviors (interpersonal), and system factors that can enhance or impede treatment with respect and dignity in the ICU. Of particular concern in the ICU setting are judgments about patients who have frequent admissions for the same problem and are perceived to be noncompliant or otherwise responsible for their “recidivism.” Participants highlighted the importance of treating such patients with basic dignity that all human beings deserve, but simultaneously discussed their lack of respect for such patients and sometimes used derogatory labels to refer to them. Although derogatory labels are never intended for patients or families to hear, sometimes they are uttered within earshot of patients. Such evaluative claims that convey a judgment of “goodness” or “badness” may go unnoticed in the everyday care of patients and families in the ICU. Whether they are heard or unheard, these comments were identified as inherently disrespectful. Further, they set a negative tone among the health care team and reflect poor role modeling for more junior staff. Another behavioral impediment to respectful treatment occurs when health care professionals talk over or about patients who are intubated or sedated as if they are not there. Obstacles and challenges to communicating with such patients have been reported elsewhere (Llenore & Ogle, 1999). Our results also highlight respectful behaviors— making the effort to educate patients, honoring bodily concerns, giving patients choices, being sensitive to patients’ experiences and listening to patients. These behaviors are consistent with the “ABCDs” (attitudes, behaviors, compassion, and dialogue) of “dignity–conserving care” which have been identified in the context of death and dying (Cook & Rocker, 2014). Such behaviors are relevant and desirable for patients in any context, but they may be less evident, or overshadowed, in the ICU. Our participants explain this by pointing to specific characteristics of ICUs—patients are critically ill, technology is dominant, and time is scarce—that make it very difficult to manifest respectful and dignity–promoting behaviors. Technology and time

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are explanatory variables in other ICU studies as well (Bishop et al., 2014). Not surprisingly, many of the same attitudes, beliefs, and behaviors influence the extent to which interactions between and among members of the health care team are respectful. How health care professionals treat each other may also influence how they treat patients and families. Communication barriers between nurses and physicians can have adverse consequences for patient care. As documented elsewhere (Kirchoff et al., 2000), nurses in our study expressed resentment toward physicians who expect the nurses to explain complicated matters to patients and families. Nurses feel that they have to step in when clinicians from various specialties provide patients or families with different or even contradictory information, or when medical jargon is used. Although nurses in our study and in other studies (Garon et al., 2009) want autonomy and independence, and feel more respected when their input is valued, they do not want to carry the responsibility of being the main communicator of information to patients. As is documented in the literature (Hansen et al., 2009), our nurse–participants experience physician behaviors such as being unavailable, or conveying unrealistic expectations to patients, as disrespectful. In addition to adversely affecting patient care, communication challenges between doctors and nurses can lead to intercollegial disrespect and distrust. Our findings support previous evidence that critical care nurses may feel disrespected by physicians, usually stemming from a prevailing sense of lack of control and concerns about the rigid hierarchies within the ICU (Cowin & Eager, 2013; Khademi et al., 2012; Soderberg et al., 1997). However, our study also points to a bidirectional phenomenon in which nurses may be disrespectful toward interns and residents. These observations suggest that violations of respect are more likely to occur where there are power differentials, be they among clinicians in different roles, or between clinicians and patients. Participants in our study acknowledged the difficulty in redressing power imbalances given

the hierarchical nature of medical care in general, and intensive care in particular. Nevertheless, they mentioned the value of interprofessional education (Barr, Koppel, Reeves, Hammick, & Freeth, 2005; Dufrene, 2012; Paradis et al., 2013) in cultivating mutual respect between clinicians in different roles, and highlighted the critical role that attending physicians can play in modeling respectful and dignity enhancing behavior toward all members of the health care team. In addition to focusing on the training and modeling that clinicians receive, participants made several more practical recommendations for enhancing treatment with respect and dignity for patients and families in the ICU. They endorsed strategies for personalizing patients, such as displaying photographs that depict the patients when healthy and active. As a means of educating families and respecting their role in decision making, it was suggested, albeit ambivalently, that family members be included in daily rounds. Of particular significance for critical care is the need to pay special attention to patients’ experiences during highly stressful circumstances such as ICU admissions

Limitations Despite the importance of our findings, they should be interpreted with several limitations in mind. First, participants may not be representative of all health care professionals in their respective disciplines or roles. Those who participated did so because they were interested in the study and/or available at the time that was convenient for most. Moreover, the study took place at two hospitals within one academic health system. Health care professionals from other health systems may have different opinions or encounter different experiences regarding treatment of patients and families with respect and dignity in the ICU. Although our findings may not be applicable to all health care professionals in the critical care setting, qualitative research is not intended to obtain generalizable data, but to understand complex phenomena and generate hypotheses for future research. Second, most participants knew each other. Although this lack of anonymity could

Health Care Professionals’ Perceptions & Experiences of Respect & Dignity in the Intensive Care Unit

affect some of the responses, participants seemed to be comfortable with one another and provided direct and detailed answers to the questions. Third, the qualitative nature of these focus group data did not allow us to determine which concerns about respect and dignity were viewed as most important, or to conduct meaningful comparisons between groups. Despite these fundamental methodologic drawbacks, we chose this approach because it enables the emergence of topics and themes that may not otherwise be revealed. That similar themes emerged in all nine focus groups provides strong support for our findings.

Conclusion and Future Directions To achieve and sustain significant improvements in the degree to which patients, families, and clinicians are treated with respect and dignity in the ICU, intrapersonal changes in attitudes and beliefs, interpersonal patterns of communication, and system–wide cultural shifts are necessary. Participants in our focus groups suggested a number of specific behavioral strategies for improving respectful treatment of patients in the ICU, such as getting to know patients and families as individuals, including family members on rounds, and paying particular attention to communication during ICU admissions. Moreover, the degree to which members of the health care team respect one another is observed by patients and families, and can affect patient care. Therefore, efforts should be made to promote intercollegial respect in the ICU for the sake of both patient care and clinician well–being (Rushton, 2006; Varcoe, Pauly, Webster, & Storch, 2012). Real culture change in the ICU will likely require leadership to implement robust interprofessional clinician education, reflection, and coaching/mentoring, which are designed to promote dialogue about potential power imbalances and status inequities. Hierarchy in the ICU is less likely to be an impediment to respect when invisible norms that privilege certain types of knowledge and skills over others are made transparent and open for examination. The ideal ICU culture would

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empower all stakeholders—including patients and families—to discuss violations of respect and dignity for their own well–being (Carse, 2013). It would also acknowledge and honor the roles and perspectives of each team member, including their distinctive core goals, unique knowledge, context and ethical values. Finally, it would support patients and families to engage in communication and decision making that is aligned with their preferences, capacities and values (Institute of Medicine, 2013). Future research should support the development and evaluation of such interventions on patients’, families’ and clinicians’ perceptions of treatment with respect and dignity in the ICU, and on the clinical outcomes for ICU patients.

References Barr, H., Koppel, I., Reeves, S., Hammick, M., & Freeth, D. S. (2005). Effective interprofessional education: Argument, assumption, and evidence. Oxford, UK: Wiley–Blackwell Publishing. Beach M. C., Duggan, P. S., Cassel, C. K., & Geller, G. (2007). What does ‘respect’ mean? Exploring the moral obligation of health professionals to respect patients. Journal of General Internal Medicine, 22 (5), 692–695. Beach, M. C., Forbes, L., Branyon, E., Aboumatar, H., Carrese, J., Sugarman, J., & Geller, G. (2015). Patient and family perspectives on respect and dignity in the intensive care unit. Narrative Inquiry in Bioethics, 5(1A), 15–25. Bishop, J. P., Perry, J. E., & Hine, A. (2014). Efficient, compassionate, and fractured: Contemporary care in the ICU. Hastings Center Report, 44, 35–43. Carse, A. (2013). Moral distress and moral disempowerment. Narrative Inquiry in Bioethics, 3, 147–151. Chochinov, H. M., Hassard, T., McClement, S., Hack, T., Kristjanson, L. J., Harlos, M., . . . Murray, A. (2008). The patient dignity inventory: A novel way of measuring dignity–related distress in palliative care. Journal of Pain Symptom Management, 36 (6), 559–571. Cioffi, J., & Ferguson, L. (2009). Team nursing in acute care settings: Nurses experiences. Contemporary Nursing, 33 (1), 2–12. Cook, D., & Rocker, G. (2013). Dying with dignity in the intensive care unit. New England Journal of Medicine, 370, 2506–2514. Cowin, L. S., & Eager, S. C. (2013). Collegial relationship breakdown: A qualitative exploration of nurses in acute care settings. Collegian, 20 (2), 115–121.

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Dufrene, C. (2012). Health care partnerships: A literature review of interdisciplinary education. Journal of Nursing Education, 51, 212–216. Garon, M., Urden, L., & Stacy, K. M. (2009). Staff nurses’ experiences of a change in the care delivery model: A qualitative analysis. Dimensions of Critical Care Nursing, 28 (1), 30–38. Hansen, L., Goodell, T. T., DeHaven, J., & Smith, M. D. (2009). Nurses’ perceptions of end of life care after multiple interventions for improvement. American Journal of Critical Care, 18 (3), 263–271. Happ, M. B., Garrett, K., Thomas, D. D., Tate, J., George, E., Houze, M., . . . Sereika, S. (2011). Nurse–patient communication interactions in the intensive care unit. American Journal of Critical Care, 20 (2), e28–e40. Henry, L. M., Rushton, C., Beach, M. C., & Faden, R. (2015). Respect and dignity: A conceptual model for patients in the Intensive Care Unit. Narrative Inquiry in Bioethics, 5(1A), 5–14. Institute of Medicine. (2013). Inter–professional education for collaboration: Learning how to improve health from inter–professional models across the continuum of education to practice: Workshop summary. Washington, DC: The National Academies Press. Jenkinson, C., Coulter, A., & Bruster, S. (2002). The Picker Patient Experience Questionnaire: Development and validation using data from in–patient surveys in five countries. International Journal for Quality in Health Care, 14 (5), 353–358.

Khademi, M., Mohammadi, E., & Vanaki, Z. (2012). Nurses’ experiences of violation of their dignity. Nursing Ethics, 19 (3), 328–340. Kirchoff, K. T., Spuhler, V., Walker, L., Hutton, A., Cole, B. V., & Clemmer, T. (2000). Intensive care nurses’ experiences with end of life care. American Journal of Critical Care, 9 (1), 36–42. Llenore, E., & Ogle, K. R. (1999). Nurse–patient communication in the intensive care unit: A review of the literature. Australian Critical Care, 12 (4), 142–145. Paradis, E., Leslie, M., Gropper, M. A., Aboumatar, H. J., Kitto, S., & Reeves, S. (2013). Interprofessional care in intensive care settings and the factors that impact it: Results from a scoping review of ethnographic studies. Journal of Critical Care, 28, 1062–1067. Rushton, C. H. (2007). Respect in critical care: A foundational ethical principle. AACN Advanced Critical Care, 18 (2), 149–156. Rushton, C. H. (2006). Defining and addressing moral distress: Tools for critical care nursing leaders. AACN Advanced Critical Care, 17(2), 161–168. Soderberg, A., Gilje, F., & Norberg, A. (1997). Dignity in situations of ethical difficulty in intensive care. Intensive and Critical Care Nursing, 13 (3), 135–144. Sugarman, J. (2015). Towards treatment with respect and dignity in the intensive care unit. Narrative Inquiry in Bioethics, 5(1A),1–4. Varcoe, C., Pauly, B., Webster, G., & Storch, J. (2012). Moral distress: Tensions as springboards for action. HEC Forum, 24 (1), 51–62.