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Narrative Inquiry in Bioethics, Volume 5, Number 1A, 2015, pp. 15A-25A (Article) 3XEOLVKHGE\-RKQV+RSNLQV8QLYHUVLW\3UHVV DOI: 10.1353/nib.2015.0000
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Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit Mary Catherine Beach1*, Lindsay Forbes1, Emily Branyon1, Hanan Aboumatar2, Joseph Carrese1, Jeremy Sugarman1, and Gail Geller1 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 Mary Catherine Beach, MD, MPH at General Internal Medicine, Johns Hopkins University, 2024 East Monument Street, Baltimore, MD 21287. E–mail: [email protected]
Acknowledgements. Funded by the Gordon and Betty Moore Foundation. In addition, Dr. Beach was supported by a grant from the Greenwall Foundation. The authors thank the patients and families who participated in this study. This work would not have been possible without assistance from the staff in the intensive care units in facilitating recruitment. Abstract. Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/ modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU. Key Words. Bioethics, Critical Care, Dignity, Interview, Family, Patient Experience, Qualitative Research, Respect
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espect and dignity are central to moral life, and have a particular importance in health care settings. Health professionals are taught respect for autonomy as a principle of contemporary bioethics and professionalism (Beauchamp & Childress, 2001; Gillon, 2003; Medical professionalism, 2002), and are frequently reminded to have respect for cultural differences (Gostin, 1995; Paasche–Orlow, 2004). Some professional codes advocate a broader respect for human life and dignity (American Medical Association, 2001) and consideration of respect as the recognition
of the unconditional value of patients as persons (Beach, Duggan, Cassel, & Geller, 2007). Another paper within this special issue of Narrative Inquiry in Bioethics, describes a conceptual model of respect and dignity that incorporates many of these differing notions (Henry, Rushton, Beach & Faden, 2015). Despite its broad appeal, there may be lack of clarity about what proper treatment with respect and attending to patients’ dignity specifically requires. There are limited data on how patients and families specifically perceive respect and dignity. Studies have shown that patients are generally
Narrative Inquiry in Bioethics Volume 5.1A (2015) 15A–25A © 2015 by Johns Hopkins University Press
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able to predict when their physicians do not have a high level of respect for them, even after adjusting for many measured variables indicating how the physician has communicated (Beach, Roter, Wang, Duggan, & Cooper, 2006). In addition, patients’ perception of whether or not they are always treated with respect and dignity is significantly associated with overall ratings of their experience across nearly all medical specialties, more so than any other measure of specific clinician behaviors (Quigley et al., 2014). This suggests that being treated with respect and dignity is a complex phenomenon that is not reducible to one particular behavior. It is of central importance to respect patients and attend to their dignity. Despite this, there are limited data on how to treat patients accordingly. Therefore, the objective of this study was to explore patient and family definitions and experiences of treatment with respect and dignity in intensive care units (ICUs).
Methods Design As part of a larger project regarding treatment with respect and dignity in the ICU (Sugarman, 2015), patients and/or their family members were interviewed to understand their unique perspectives on treatment with respect and dignity in the ICU. The patient participants were currently admitted to an ICU, surgical or medical, at the Johns Hopkins Hospital or the Johns Hopkins Bayview Medical Center, which are part of the same large academic health system. All interviews were conducted by one experienced investigator (G.G.).
adult patients with complex, multisystem illnesses. The average length of stay in the medical unit is three to five days; the typical staffing level is one nurse for every two patients.
Data Collection Patient and family interviews were conducted between March and November of 2013. Research coordinators (E.B. and L.F.) contacted the charge nurses from each unit to identify eligible patients and families based on whether the patient was well enough to participate himself or herself, or stable enough that the family member was not likely to be distracted. Although all patients and family members in each unit were considered eligible for participation, charge nurses specifically identified those who they deemed capable of understanding and responding to interview questions. A research coordinator (L.F.) or investigator (G.G.) would then directly approach the patient or family member to ask if they would be interested in being interviewed. If the potential participant agreed, the investigator obtained oral consent before beginning the interview. The interviews were semistructured with open–ended questions (interview guide included as an Appendix)1 that were aimed at eliciting patient and family perspectives on 1) respect and dignity in general and 2) respect and dignity in the care they had received thus far. Patients and/or family members were given $50 for their participation.
Data Analysis Interviews were audio recorded and transcribed. The transcripts were then verified and identifying information was redacted. Qualitative thematic
Setting The surgical ICU is a 10–bed unit that predominantly attends to critically ill trauma and general surgery patients after undergoing complicated operative procedures. Patients here are typically older than 16 years of age and the average length of stay is two days; the typical staffing level is one nurse for every one to two patients. The medical ICU is a 12–bed unit that predominantly attends to
1 As mentioned in the text, these interviews were conducted as part of a larger project described in Sugarman (2015). Part of that project involved developing a platform to enhance communication and coordinate care. In the latter part of the interviews, as seen in the Appendix, participants were asked to provide feedback on a proposed platform. The results of this part of the interview are not described in this paper.
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
analysis was used to identify and organize the findings. We used thematic content analysis to explore the data. Three study team members (L.F., E.B., and M.C.B.) independently reviewed transcripts, familiarized themselves with the data, and identified major themes. These study team members then met and collectively developed a preliminary codebook based on their independent initial reading of the transcripts. Subsequently, these study team members met multiple times to further refine the codebook, define the themes, and to settle any disagreements regarding themes and thematic classifications. After a final version of the codebook was agreed upon, two of the team members (E.B. and L.F.) coded all transcripts independently using NVivo 10 (QSR International Pty Ltd). A coding comparison was generated using NVivo to assess interrater agreement on text coded for each of the themes. Agreement on thematic analysis between E.B. and L.F. was high, between 80% and 100%. In any cases where agreement fell below 80%, E.B. and L.F. met with M.C.B. to discuss the discrepancy and came to an agreement on how the text should be coded. This study was approved by the Johns Hopkins Medicine Institutional Review Board.
Results Study Sample We conducted 15 interviews with 21 participants (patients and families); some interviews included more than one participant. Only one patient who was asked to participate declined to be interviewed. The study team decided to stop at 15 interviews owing to thematic saturation. Each interview related to a different patient’s ICU admission. Therefore, there were 15 patients who were the focus of discussion. Of those 15 patients, most were female (n = 9); most (n = 10) were White and the remainder (n = 5) were African American. Five interviews were conducted with the patient alone (no family member) and three were conducted with the patient and at least one family member. Seven interviews were conducted with only family members; in these cases, the patient was too sick to
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participate. Therefore, there were eight patient participants and 13 family members (six adult children, five spouses, one parent, and one unspecified).
Overarching Definitions of Treatment with Respect and Dignity Seven related overarching themes emerged that focused on what it means to be treated (or not) with respect and/or dignity: treated as a person/ human being; the Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as an equal (Figure 1).
Treated as person/human being Many participants spoke about the importance of being treated, or treating someone else, as a “person” or “human being.” This was put in contrast with treatment as just a “patient,” a “number,” or a “chore.” One person specifically noted that health professionals should be “just treating ’em like they’re still there” [patient’s wife]. One family member noticed that even he began to pay more attention to the numbers on the devices used for monitoring than to his loved one: And they were amazed that he was even awake so instead of always looking at the numbers, which is important in ICU especially, but I’d say look at the person first and then look at the numbers and see how they correlate and not just look at the numbers and assume he’s unconscious because his pressures are so low. . . . .And after a while being in the ICU even as a family member, you sit there and stare at the monitor all day instead of looking at the person. [Patient’s son]
Golden Rule Another conception of what it means to be treated with respect and dignity is commonly referred to as the Golden Rule, that is, treating someone else the way you yourself would want to be treated. When discussing what respect and dignity means, participants said:
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Figure 1. Overarching definitions of treatment with respect and dignity in the ICU. I try not to hurt nobody’s feelings. But if I was to say something and hurt somebody feeling unaware, and when they come back to me I go back and ask them to forgive me, because I don’t like to hurt people feeling because I don’t want mine be hurt. [Patient’s mother]
I feel violated when they would come and I would tell them “This tube is pulling” and it would kind of be ignored. I felt respected when they would say “Okay” and stop everything and sort the tube out and go on from there. [Male patient]
I just think what I’ve seen here . . . people don’t just come over and pull up your blanket. They ask if this is okay now, and they tell you . . . I mean, they treat you like they’d like to be treated, and that’s very important. [Patient’s mother]
Although this broader category focused on the overall importance of being acknowledged and not dismissed, it was often paired with accounts of specific behaviors relating to not being listened to or not having concerns taken seriously. One participant said:
Acknowledgement Participants spoke about experiences where they appreciated being acknowledged or given attention. In some cases, this was focused on acknowledgement of a particular concern or symptom, but in some cases, their experiences were about being acknowledged as present or as a person. For example: He [nurse] realized what was important to her. And made sure that he addressed it. [Patient’s son]
They contrasted these descriptions with accounts of experiences where they did not feel acknowledged, which were described as being “dismissed” or “ignored”:
But they just sort of ignore me and he [the patient’s son] expects them to pay attention when he makes a comment. Me, I just don’t quite have the humphfa to go in and say, “Hey! Are you not listening to me? Would you please address this?” and at least give me a comment back. [Patient’s wife]
Treated as a family member or friend Participants expressed gratitude for clinicians who treated the patient as if they were the person’s own family member or friend. One participant said: I was just thinking that so often in a situation like this it would be possible to treat the patient as a lesser being because you’re helping and they’re not, and that’s certainly not been the
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
case here. I mean, goodness gracious, they’re wonderful and treat you like a friend. [Female family member]
Treated as individual Participants expressed appreciation of clinicians who showed a particular interest in the patient as an individual. They appreciated being known for who they were, and gave reasons why this might even be helpful to a patient’s medical treatment, as below: If they knew your personality it may make a difference. He’s an alpha male. He’s an engineer. Once they get acquainted out here at the desk the nurses say “Oh, that’s his personality.” So they knew when he wanted to know something they’d explain things to him because they knew him. [Patient’s wife]
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Specific Behaviors that Reflect Respect and Dignity Patients and family members described seven particular behaviors or actions that were considered demonstrations of respect and dignity: listening, honesty/giving information, attention to body/ modesty/appearance, caring/bedside manner, patient and family as an information source, attention to pain, and waiting (Figure 2).
Listening Participants spoke often about the importance of clinicians “listening” to the patient and family. One participant (a female patient) emphasized that it was important to “really put forth an effort to try to understand.”
Treated as important/valuable
Honesty/giving information
Participants described feeling like they were either treated (or not) as if their or their loved one’s life was valuable. Some participants described characteristics of their loved one that might have made them seem less valuable, such as being on a ventilator or being older. One participant described a series of interpersonal behaviors (poor “bedside manner”) that made him feel less valuable, as in the following:
Participants often described respect in terms of having things explained to them, and having doctors and nurses always be honest and forthright.
Yeah. Well, treating people like they’re shit. They don’t have to do that, and some of them do that, make them feel like shit and make them feel real low and gives them a mean, sarcastic look and a sarcastic remark. [Male patient]
Treated as an equal Many participants described the importance of being treated like an “equal” to clinicians themselves, or noticed unequal or discriminatory treatment in contrast to other patients based on some characteristic such as age, gender or ability to pay. One family member noted: I think Mom has voiced some concerns and she sometimes felt like because she’s a woman or whatever or older that she wasn’t heard as well as she should have been. [Patient’s son]
And then they had to keep reassuring me that sometimes alarms go off. It doesn’t mean anything’s wrong. And so I learned to calm down. But it helped after they explained it to me. [Patient’s wife] And I like how they were open with my husband. He wasn’t very coherent about what was going on. But they were honest with him. He just wanted to know when he could eat. But I liked their honesty. I appreciated that more than anything I think. [Patient’s wife]
Participants expressed confidence in clinicians who made an extra effort to explain procedures or side effects to patients with communication barriers. The following example is taken from an interview with the husband of an intubated patient. He [the doctor] was very patient and let her write and then read it and answer questions. And I mean, I really had reservations about the side effects, or the risks of the operation. And he explained everything in detail, and let us know there are some risks. And what will happen. So when he left, I couldn’t speak for her, but I said, you know, “There’s a guy that I want to do the job.” [Patient’s husband]
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Figure 2. Specific Behaviors Related to Treatment with Respect and Dignity in the ICU.
Attention to body/modesty/appearance Participants described how difficult it was to be so vulnerable in the ICU and greatly appreciated efforts to keep their bodies covered and clean. The wife of a patient described the following: With dignity, just like—my husband’s major thing, especially when he was more aware of what was going on, was he didn’t have control of his bowels. And it’s very embarrassing for anybody; but I think a man maybe a little bit more. I have to say they would just kindly escort everybody out and calm his fears I guess, or whatever they were. [Patient’s wife]
In contrast, participants also described occasions when these needs were not attended to, as in the following: Pet peeve—I mean, what I saw repeatedly. I don’t want to see my father’s penis. Please don’t roll him over and change him in front of me. [Patient’s daughter]
You can respect someone’s dignity, if they don’t want to have their gown pulled up in front of a whole crowd of people, or make sure that the curtain’s pulled. To me, that’s what dignity is, or just basic human care habits that you don’t want the world to see. [Patient’s daughter]
Caring/bedside manner Participants frequently mentioned the importance of doctors and nurses “caring about” patients, having a good “bedside manner,” and making patients and families feel “welcome” and “wanted.” Respect . . . now a person respects you, they care about you. [Patient’s mother] And since that was his main concern (bruise on his arm), even though they were more concerned about his numbers, the one that gave him the respect to come in and look at what he was most
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
concerned about showed caring and compassion and concern. [Patient’s son] He [the doctor] made you feel like he wasn’t leaving until all your questions were answered. And mom says that, “Their actions make you feel they really care,” about her feelings. [Patient’s daughter]
In contrast: They get annoyed with you. They act like you want—like I [the patient] don’t want to be here. I didn’t ask to be here, just this happened to me. [Female patient]
Participants sometimes gave specific examples of communication behaviors that conveyed respect. They’re talking to him and calling his name and stuff like that. When they’re going to move him they tell him. He’s asleep, but they’re telling him that they’re going to move him over or they’re giving him this or they’re doing that for him. They tell him everything they’re doing to him, not that he knows, because he sleeps, but they do. [Patient’s wife]
Patient/family as information source When discussing respect and dignity, patients and families reported that they deeply appreciated when they were asked their opinion or given the opportunity to provide input to inform the medical plan, even though they recognized that they did not necessarily have medical expertise. I don’t know. I’m not a medical person so asking me about medical stuff I don’t know contributes a lot. But I think [redacted name, patient’s son] is right, asking me about how I feel, what I think is going on, all of that is very important. [Male patient]
Family members found it quite frustrating when their knowledge was ignored, as follows: I know my husband and he’s not talking right. And everything is showing to them that it’s not a stroke but he’s not speaking correctly and he’s my husband and I know him and he has gone through so much and never talked like that before. And I know him. [Patient’s wife]
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Attention to pain When discussing respect and dignity, participants discussed the importance of attending to patient comfort and reducing physical pain. In response to being asked what respect looks like, one participant said: Well, for me, I think it’s somebody would walk in and say, “Are you comfortable? What’s your pain level? Is there anything I can do? Do you need to be repositioned?” You need to just be focused on taking their pain away. [Patient’s husband]
Another family member equated disrespect with being dismissed: So again, maybe some people complain about their catheter all the time and there’s nothing they can do. But when my mom complained, it bothered me that it was dismissed. And then she was getting nauseous. [Patient’s daughter]
Another family member said: You know, she’s in pain from the—you know, she can’t hardly swallow because there’s a tube in there, and it was kind of jabbing her when she’d swallow. So let’s forget about the “Why’s?” and concentrate on, “How can we make her comfy?”[Patient’s husband]
Responsiveness Although some acknowledged understanding that ICUs are busy places, participants spoke about the physical and emotional distress incurred by having to wait for clinicians to respond to their needs. I was there for fluids for a bad stomach flu and didn’t get them for four hours because my line was kinked but no one came in to check. [Female patient] An example, if you ask for something, “All right, give me a minute,” it takes an hour before they even get back around to me. [Male patient]
Discussion Our study found that patients and families who had experienced the ICU identified many ways to
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conceptualize respect and dignity, and provided examples of behaviors that embodied, or did not embody, treatment with respect and dignity. With increased attention to improving patient experiences of care, treatment with respect and dignity is at the heart of having as positive an experience that the situation permits. Thus, understanding how respect and dignity are conceptualized from patients’ perspectives is essential to knowing how to improve the quality of care delivered to patients. These results have implications for health professionals in clinical practice, for those interested in measuring and improving health care quality, and for the field of bioethics itself. For health professionals, and those responsible for monitoring and improving health care quality, patients’ and their families’ perspectives on respect and dignity can be thought of as a blueprint for action. The rich and varied descriptions that they use to describe what respect and dignity mean to them—being acknowledged, being treated as a person, as an equal, as a family member or friend, and so on—can be used to convey the “spirit” of actions that are performed routinely in clinical practice. In some cases, they may be more useful than describing particular behaviors that should be encouraged, because the essence of treating a person with respect and dignity is more than the sum of any set of particular behaviors. On the other hand, the particular examples given by patients—being listened to and allowed to give one’s own opinion or input into the treatment plan, having a naked body covered, and being given medical information—are also important. Health care providers are very busy, and ICUs are often chaotic. Thus, it is important to note that many of the behaviors patients and their families cited as respectful and attend to dignity do not take much time and can be provided by anyone on the care team. Although the overall definitions of being treated with respect and dignity convey ways of approaching patients, the behaviors fill in some of the details. In terms of measuring and monitoring patients’ experiences, with the goal of identifying areas for improvement, these behaviors serve as a framework for a comprehensive measure. Further
work could take these behaviors and develop an inventory of what constitutes being treated with respect and dignity, which reflects patients’ and their families’ perspectives and opinions. In terms of informing the field of bioethics, it is notable that there is alignment of patients’ perspectives on treatment with respect and dignity with the bioethical principle of respect for autonomy (Beauchamp & Childress, 2001), insofar as patients describe respect as health professionals giving them information, being honest, and asking their opinion. In addition, there is alignment of patients’ perspectives with respect for persons as a type of valuing (Beach et al., 2007). It is also notable that patients and families describe a great deal more than that. Many behaviors, such as bathing or teeth brushing, thought of as trivial, might not seem relevant to the field of bioethics. Yet patients and families who have experienced the ICU highlight them as essential to what it means to be treated with respect and dignity. This difference provides an opportunity for philosophers to reconsider the general question of what a moral obligation to respect another person entails, or specifically what it means for a health professional to respect and attend to a patient’s dignity, and how these behaviors might fit together conceptually under the broader category of respect and dignity. Our study should be interpreted with several limitations in mind. First, we conducted the study at one point during the ICU admission, and yet a person’s perception of treatment with respect and dignity may vary as the clinical circumstances change. Moreover, an ICU stay is a particular type of experience that might provide meaningful insight into respect and dignity in health care, but the specific behaviors that demonstrate respect may be different during an outpatient clinical appointment. As such, our results are not necessarily applicable to other settings. Also, interviewees were not asked to discuss the behavior of physicians as compared with nurses as compared with other health care professionals separately and they often did not differentiate them in their comments. Further, we conducted this study in one city, in ICUs in one academic health system, and with only
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
African–American and White patients. Different themes may have emerged if we had interviewed patients from other racial and ethnic backgrounds and hospitals. Despite these limitations and the small number of interviews, we reached saturation, which strengthens our findings. Without understanding the perspectives of patients and their families, efforts to improve the degree of treatment with respect and dignity demonstrated in ICUs may not be responsive to what is most valued by those most affected. Patients and their families highlight a broad array of behaviors in this regard, which provide a framework for improving experiences in the ICU and revisiting the scope of the moral obligation of health care professionals to treat patients with respect and dignity.
References American Medical Association. Declaration of professional responsibility: Medicine’s social contract with humanity. Retrieved from http://www.ama–assn. org/ama/upload/mm/369/decofprofessional pdf. 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., Roter, D. L., Wang, N. Y., Duggan, P. S., & Cooper, L. A. (2006). Are physicians’ attitudes of respect accurately perceived by patients and associated with more positive communication behaviors? Patient Education and Counseling, 62(3), 347–354. Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. (5th ed.). New York: Oxford University Press. Gillon, R. (2003). Ethics needs principles—Four can encompass the rest—And respect for autonomy should be “first among equals”. Journal of Medical Ethics, 29(5), 307–312. Gostin, L. O. (1995). Informed consent, cultural sensitivity, and respect for persons. JAMA, 274 (10), 844–845. Henry, L. M., Ruston, 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. Medical professionalism in the new millennium: A physician charter (2002). Annals of Internal Medicine, 136(3), 243–246. Paasche–Orlow, M. (2004). The ethics of cultural competence. Academic Medicine, 79 (4), 347–350.
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Quigley, D. D., Elliott, M. N., Farley, D. O., Burkhart, Q., Skootsky, S. A., & Hays, R. D. (2014). Specialties differ in which aspects of doctor communication predict overall physician ratings. Journal of General Internal Medicine, 29 (3), 447–454. Sugarman, J. (2015). Toward treatment with respect and dignity in the intensive care unit. Narrative Inquiry in Bioethics, 5(1A), 1–4.
Appendix Interview Guide: Patients/Family Members I’d like to talk to you about some aspects of the care that you/your loved one received while in the ICU and how it might be improved. You will be asked to complete a “patient satisfaction” survey separately but this is an opportunity for us to talk in greater depth about your experience in the ICU.
Part 1. Patients’ and Families’ Thoughts About/Experience of Respect/Dignity 1. Can you tell me what brought you to the ICU and how long you’ve been here? 2. Tell me what you remember most about the care you received in the ICU.
Now I want to focus in on your ideas about treatment with respect and dignity. 3. When you think about what it means to treat patients with respect, what comes to mind? Are there particular feelings that you associate with being treated with respect? If so, can you describe them? 4. When you think about treating patients’ with dignity, what comes to mind? Are there any particular feelings that you associate with being treated with dignity? If so, can you describe those feelings? 5. Do you think there is a difference between being treated with respect and being treated with dignity? If so, how would you describe the difference? 6. Can you think of a specific time, while in the ICU, when you were treated particularly respectfully? What happened then? Was a particular person involved? What did that person do or say? What did s/he NOT do or say? Be as specific as possible.
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7. Now think of a time when you felt disrespected. What happened then? Was a particular person involved? What did that person do or say? What did s/he NOT do or say? Be as specific as possible. 8. Was there a specific time when you felt that your dignity was honored? What happened then? If a particular person was involved, what did that person do or say? What did s/he NOT do or say? Be as specific as possible. 9. Was there a specific time when you felt that your dignity was violated? What happened then? If a particular person was involved, what did that person do or say? What did s/he NOT do or say? Be as specific as possible. 10. How do you think care in the ICU can be improved? Probes: Particularly as it relates to treatment with respect/dignity? Particularly as it relates to communication? 11. If you were to advise the health care team in the ICU about treating patients with respect/ dignity, what would you tell them? What would you advise them about communicating with patients?
2.
3.
Part 2. Patients’ and Families’ Input/ Feedback on Platform Now I would like to talk about specific ways of improving care in the ICU. I’ll tell you some of our ideas and hear what you think of each of them, and I’ll also ask you about your ideas. 1. First, we know it’s really important for patients in the ICU to be viewed as a “whole person.” We’ve thought of a way for patients/ families to share personal information with the clinical team so they can get to know the patients better, for example, what they were like before the ICU admission and what is important to them. a. Show example of platform that has to do with “personalization” b. What do you think of this idea? Do you think patients and families would use this/ complete this information? What may get in the way of them using it or it being helpful? c. What other personal information would you want to provide? What about including who you would want to speak for you if you were unable to speak for yourself? Who is important in your life? Your preferences for how to
4.
5.
receive information and make decisions? Is there particular information you would NOT want to provide? We know that the ICU can be a very confusing and scary environment with lots of machines and weird noises. Do you remember having any kind of orientation to the ICU? What would have been helpful for you to know? For example, would it be helpful to you to learn more about all the equipment that is in your room so you know what to expect? a. Show example of platform that has to do with “orientation to the unit/room.” b. What do you think of this idea? Do you think patients and families would use this? What may get in the way of them using it or it being helpful? We also know that patients and families aren’t always aware of what support services are available to them and what each type of person does, for example, patient advocate, social worker, pastoral care. Would it be helpful to you to learn more about available support services? a. Show example of platform that has to do with “available support services.” b. What do you think of this idea? Do you think patients and families would use this information? What may get in the way of them using it or it being helpful? Communication between patients/families and their care team is sometimes difficult. When you first got to the ICU, did you understand what you could expect of your ICU team? Did you know if your ICU team had any expectations of you during your ICU stay? Did you know who to bring concerns to? Would it be helpful to know more about shared expectations? We thought of a way for patients/families and clinical team members to share their goals and concerns for the day. a. Show example of platform that has to do with “goals for the day.” b. Show example of platform that has to do with “Preparing questions/concerns and sharing those with clinician team prior to rounds.” c. What do you think of these ideas? Do you think patients and families would use this/ complete this information? What may get in the way of them using it or it being helpful? In ICUs, the members of the clinical team change all the time, as do schedules for the day. We thought it would be important for patients and families to
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
know who all of their clinicians are on any given day, and what the care plan is for that day. a. Show example of platform that has to do with “who sits on the care team, schedule/ care plan.” b. What do you think of these ideas? Do you think patients and families would use this information? What may get in the way of them using it or it being helpful? c. Is there any other information that you would like to see on here? What kind of information
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would you like to know about your care team, including doctors, nurses, therapists, social workers, etc.? 6. Before we finish, are there any other ideas/suggestions you have for improving the care you/ your loved one experienced in the ICU?
Thank you for taking the time to talk to me. Your feedback has been very helpful and will certainly be used to improve care in the ICU.
Narrative Inquiry in Bioethics, Volume 5, Number 1A, 2015, pp. 15A-25A (Article) 3XEOLVKHGE\-RKQV+RSNLQV8QLYHUVLW\3UHVV DOI: 10.1353/nib.2015.0000
For additional information about this article http://muse.jhu.edu/journals/nib/summary/v005/5.1A.beach.html
Access provided by Georgetown University Library (27 May 2015 02:08 GMT)
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit Mary Catherine Beach1*, Lindsay Forbes1, Emily Branyon1, Hanan Aboumatar2, Joseph Carrese1, Jeremy Sugarman1, and Gail Geller1 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 Mary Catherine Beach, MD, MPH at General Internal Medicine, Johns Hopkins University, 2024 East Monument Street, Baltimore, MD 21287. E–mail: [email protected]
Acknowledgements. Funded by the Gordon and Betty Moore Foundation. In addition, Dr. Beach was supported by a grant from the Greenwall Foundation. The authors thank the patients and families who participated in this study. This work would not have been possible without assistance from the staff in the intensive care units in facilitating recruitment. Abstract. Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/ modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU. Key Words. Bioethics, Critical Care, Dignity, Interview, Family, Patient Experience, Qualitative Research, Respect
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espect and dignity are central to moral life, and have a particular importance in health care settings. Health professionals are taught respect for autonomy as a principle of contemporary bioethics and professionalism (Beauchamp & Childress, 2001; Gillon, 2003; Medical professionalism, 2002), and are frequently reminded to have respect for cultural differences (Gostin, 1995; Paasche–Orlow, 2004). Some professional codes advocate a broader respect for human life and dignity (American Medical Association, 2001) and consideration of respect as the recognition
of the unconditional value of patients as persons (Beach, Duggan, Cassel, & Geller, 2007). Another paper within this special issue of Narrative Inquiry in Bioethics, describes a conceptual model of respect and dignity that incorporates many of these differing notions (Henry, Rushton, Beach & Faden, 2015). Despite its broad appeal, there may be lack of clarity about what proper treatment with respect and attending to patients’ dignity specifically requires. There are limited data on how patients and families specifically perceive respect and dignity. Studies have shown that patients are generally
Narrative Inquiry in Bioethics Volume 5.1A (2015) 15A–25A © 2015 by Johns Hopkins University Press
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able to predict when their physicians do not have a high level of respect for them, even after adjusting for many measured variables indicating how the physician has communicated (Beach, Roter, Wang, Duggan, & Cooper, 2006). In addition, patients’ perception of whether or not they are always treated with respect and dignity is significantly associated with overall ratings of their experience across nearly all medical specialties, more so than any other measure of specific clinician behaviors (Quigley et al., 2014). This suggests that being treated with respect and dignity is a complex phenomenon that is not reducible to one particular behavior. It is of central importance to respect patients and attend to their dignity. Despite this, there are limited data on how to treat patients accordingly. Therefore, the objective of this study was to explore patient and family definitions and experiences of treatment with respect and dignity in intensive care units (ICUs).
Methods Design As part of a larger project regarding treatment with respect and dignity in the ICU (Sugarman, 2015), patients and/or their family members were interviewed to understand their unique perspectives on treatment with respect and dignity in the ICU. The patient participants were currently admitted to an ICU, surgical or medical, at the Johns Hopkins Hospital or the Johns Hopkins Bayview Medical Center, which are part of the same large academic health system. All interviews were conducted by one experienced investigator (G.G.).
adult patients with complex, multisystem illnesses. The average length of stay in the medical unit is three to five days; the typical staffing level is one nurse for every two patients.
Data Collection Patient and family interviews were conducted between March and November of 2013. Research coordinators (E.B. and L.F.) contacted the charge nurses from each unit to identify eligible patients and families based on whether the patient was well enough to participate himself or herself, or stable enough that the family member was not likely to be distracted. Although all patients and family members in each unit were considered eligible for participation, charge nurses specifically identified those who they deemed capable of understanding and responding to interview questions. A research coordinator (L.F.) or investigator (G.G.) would then directly approach the patient or family member to ask if they would be interested in being interviewed. If the potential participant agreed, the investigator obtained oral consent before beginning the interview. The interviews were semistructured with open–ended questions (interview guide included as an Appendix)1 that were aimed at eliciting patient and family perspectives on 1) respect and dignity in general and 2) respect and dignity in the care they had received thus far. Patients and/or family members were given $50 for their participation.
Data Analysis Interviews were audio recorded and transcribed. The transcripts were then verified and identifying information was redacted. Qualitative thematic
Setting The surgical ICU is a 10–bed unit that predominantly attends to critically ill trauma and general surgery patients after undergoing complicated operative procedures. Patients here are typically older than 16 years of age and the average length of stay is two days; the typical staffing level is one nurse for every one to two patients. The medical ICU is a 12–bed unit that predominantly attends to
1 As mentioned in the text, these interviews were conducted as part of a larger project described in Sugarman (2015). Part of that project involved developing a platform to enhance communication and coordinate care. In the latter part of the interviews, as seen in the Appendix, participants were asked to provide feedback on a proposed platform. The results of this part of the interview are not described in this paper.
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
analysis was used to identify and organize the findings. We used thematic content analysis to explore the data. Three study team members (L.F., E.B., and M.C.B.) independently reviewed transcripts, familiarized themselves with the data, and identified major themes. These study team members then met and collectively developed a preliminary codebook based on their independent initial reading of the transcripts. Subsequently, these study team members met multiple times to further refine the codebook, define the themes, and to settle any disagreements regarding themes and thematic classifications. After a final version of the codebook was agreed upon, two of the team members (E.B. and L.F.) coded all transcripts independently using NVivo 10 (QSR International Pty Ltd). A coding comparison was generated using NVivo to assess interrater agreement on text coded for each of the themes. Agreement on thematic analysis between E.B. and L.F. was high, between 80% and 100%. In any cases where agreement fell below 80%, E.B. and L.F. met with M.C.B. to discuss the discrepancy and came to an agreement on how the text should be coded. This study was approved by the Johns Hopkins Medicine Institutional Review Board.
Results Study Sample We conducted 15 interviews with 21 participants (patients and families); some interviews included more than one participant. Only one patient who was asked to participate declined to be interviewed. The study team decided to stop at 15 interviews owing to thematic saturation. Each interview related to a different patient’s ICU admission. Therefore, there were 15 patients who were the focus of discussion. Of those 15 patients, most were female (n = 9); most (n = 10) were White and the remainder (n = 5) were African American. Five interviews were conducted with the patient alone (no family member) and three were conducted with the patient and at least one family member. Seven interviews were conducted with only family members; in these cases, the patient was too sick to
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participate. Therefore, there were eight patient participants and 13 family members (six adult children, five spouses, one parent, and one unspecified).
Overarching Definitions of Treatment with Respect and Dignity Seven related overarching themes emerged that focused on what it means to be treated (or not) with respect and/or dignity: treated as a person/ human being; the Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as an equal (Figure 1).
Treated as person/human being Many participants spoke about the importance of being treated, or treating someone else, as a “person” or “human being.” This was put in contrast with treatment as just a “patient,” a “number,” or a “chore.” One person specifically noted that health professionals should be “just treating ’em like they’re still there” [patient’s wife]. One family member noticed that even he began to pay more attention to the numbers on the devices used for monitoring than to his loved one: And they were amazed that he was even awake so instead of always looking at the numbers, which is important in ICU especially, but I’d say look at the person first and then look at the numbers and see how they correlate and not just look at the numbers and assume he’s unconscious because his pressures are so low. . . . .And after a while being in the ICU even as a family member, you sit there and stare at the monitor all day instead of looking at the person. [Patient’s son]
Golden Rule Another conception of what it means to be treated with respect and dignity is commonly referred to as the Golden Rule, that is, treating someone else the way you yourself would want to be treated. When discussing what respect and dignity means, participants said:
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Figure 1. Overarching definitions of treatment with respect and dignity in the ICU. I try not to hurt nobody’s feelings. But if I was to say something and hurt somebody feeling unaware, and when they come back to me I go back and ask them to forgive me, because I don’t like to hurt people feeling because I don’t want mine be hurt. [Patient’s mother]
I feel violated when they would come and I would tell them “This tube is pulling” and it would kind of be ignored. I felt respected when they would say “Okay” and stop everything and sort the tube out and go on from there. [Male patient]
I just think what I’ve seen here . . . people don’t just come over and pull up your blanket. They ask if this is okay now, and they tell you . . . I mean, they treat you like they’d like to be treated, and that’s very important. [Patient’s mother]
Although this broader category focused on the overall importance of being acknowledged and not dismissed, it was often paired with accounts of specific behaviors relating to not being listened to or not having concerns taken seriously. One participant said:
Acknowledgement Participants spoke about experiences where they appreciated being acknowledged or given attention. In some cases, this was focused on acknowledgement of a particular concern or symptom, but in some cases, their experiences were about being acknowledged as present or as a person. For example: He [nurse] realized what was important to her. And made sure that he addressed it. [Patient’s son]
They contrasted these descriptions with accounts of experiences where they did not feel acknowledged, which were described as being “dismissed” or “ignored”:
But they just sort of ignore me and he [the patient’s son] expects them to pay attention when he makes a comment. Me, I just don’t quite have the humphfa to go in and say, “Hey! Are you not listening to me? Would you please address this?” and at least give me a comment back. [Patient’s wife]
Treated as a family member or friend Participants expressed gratitude for clinicians who treated the patient as if they were the person’s own family member or friend. One participant said: I was just thinking that so often in a situation like this it would be possible to treat the patient as a lesser being because you’re helping and they’re not, and that’s certainly not been the
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
case here. I mean, goodness gracious, they’re wonderful and treat you like a friend. [Female family member]
Treated as individual Participants expressed appreciation of clinicians who showed a particular interest in the patient as an individual. They appreciated being known for who they were, and gave reasons why this might even be helpful to a patient’s medical treatment, as below: If they knew your personality it may make a difference. He’s an alpha male. He’s an engineer. Once they get acquainted out here at the desk the nurses say “Oh, that’s his personality.” So they knew when he wanted to know something they’d explain things to him because they knew him. [Patient’s wife]
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Specific Behaviors that Reflect Respect and Dignity Patients and family members described seven particular behaviors or actions that were considered demonstrations of respect and dignity: listening, honesty/giving information, attention to body/ modesty/appearance, caring/bedside manner, patient and family as an information source, attention to pain, and waiting (Figure 2).
Listening Participants spoke often about the importance of clinicians “listening” to the patient and family. One participant (a female patient) emphasized that it was important to “really put forth an effort to try to understand.”
Treated as important/valuable
Honesty/giving information
Participants described feeling like they were either treated (or not) as if their or their loved one’s life was valuable. Some participants described characteristics of their loved one that might have made them seem less valuable, such as being on a ventilator or being older. One participant described a series of interpersonal behaviors (poor “bedside manner”) that made him feel less valuable, as in the following:
Participants often described respect in terms of having things explained to them, and having doctors and nurses always be honest and forthright.
Yeah. Well, treating people like they’re shit. They don’t have to do that, and some of them do that, make them feel like shit and make them feel real low and gives them a mean, sarcastic look and a sarcastic remark. [Male patient]
Treated as an equal Many participants described the importance of being treated like an “equal” to clinicians themselves, or noticed unequal or discriminatory treatment in contrast to other patients based on some characteristic such as age, gender or ability to pay. One family member noted: I think Mom has voiced some concerns and she sometimes felt like because she’s a woman or whatever or older that she wasn’t heard as well as she should have been. [Patient’s son]
And then they had to keep reassuring me that sometimes alarms go off. It doesn’t mean anything’s wrong. And so I learned to calm down. But it helped after they explained it to me. [Patient’s wife] And I like how they were open with my husband. He wasn’t very coherent about what was going on. But they were honest with him. He just wanted to know when he could eat. But I liked their honesty. I appreciated that more than anything I think. [Patient’s wife]
Participants expressed confidence in clinicians who made an extra effort to explain procedures or side effects to patients with communication barriers. The following example is taken from an interview with the husband of an intubated patient. He [the doctor] was very patient and let her write and then read it and answer questions. And I mean, I really had reservations about the side effects, or the risks of the operation. And he explained everything in detail, and let us know there are some risks. And what will happen. So when he left, I couldn’t speak for her, but I said, you know, “There’s a guy that I want to do the job.” [Patient’s husband]
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Figure 2. Specific Behaviors Related to Treatment with Respect and Dignity in the ICU.
Attention to body/modesty/appearance Participants described how difficult it was to be so vulnerable in the ICU and greatly appreciated efforts to keep their bodies covered and clean. The wife of a patient described the following: With dignity, just like—my husband’s major thing, especially when he was more aware of what was going on, was he didn’t have control of his bowels. And it’s very embarrassing for anybody; but I think a man maybe a little bit more. I have to say they would just kindly escort everybody out and calm his fears I guess, or whatever they were. [Patient’s wife]
In contrast, participants also described occasions when these needs were not attended to, as in the following: Pet peeve—I mean, what I saw repeatedly. I don’t want to see my father’s penis. Please don’t roll him over and change him in front of me. [Patient’s daughter]
You can respect someone’s dignity, if they don’t want to have their gown pulled up in front of a whole crowd of people, or make sure that the curtain’s pulled. To me, that’s what dignity is, or just basic human care habits that you don’t want the world to see. [Patient’s daughter]
Caring/bedside manner Participants frequently mentioned the importance of doctors and nurses “caring about” patients, having a good “bedside manner,” and making patients and families feel “welcome” and “wanted.” Respect . . . now a person respects you, they care about you. [Patient’s mother] And since that was his main concern (bruise on his arm), even though they were more concerned about his numbers, the one that gave him the respect to come in and look at what he was most
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
concerned about showed caring and compassion and concern. [Patient’s son] He [the doctor] made you feel like he wasn’t leaving until all your questions were answered. And mom says that, “Their actions make you feel they really care,” about her feelings. [Patient’s daughter]
In contrast: They get annoyed with you. They act like you want—like I [the patient] don’t want to be here. I didn’t ask to be here, just this happened to me. [Female patient]
Participants sometimes gave specific examples of communication behaviors that conveyed respect. They’re talking to him and calling his name and stuff like that. When they’re going to move him they tell him. He’s asleep, but they’re telling him that they’re going to move him over or they’re giving him this or they’re doing that for him. They tell him everything they’re doing to him, not that he knows, because he sleeps, but they do. [Patient’s wife]
Patient/family as information source When discussing respect and dignity, patients and families reported that they deeply appreciated when they were asked their opinion or given the opportunity to provide input to inform the medical plan, even though they recognized that they did not necessarily have medical expertise. I don’t know. I’m not a medical person so asking me about medical stuff I don’t know contributes a lot. But I think [redacted name, patient’s son] is right, asking me about how I feel, what I think is going on, all of that is very important. [Male patient]
Family members found it quite frustrating when their knowledge was ignored, as follows: I know my husband and he’s not talking right. And everything is showing to them that it’s not a stroke but he’s not speaking correctly and he’s my husband and I know him and he has gone through so much and never talked like that before. And I know him. [Patient’s wife]
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Attention to pain When discussing respect and dignity, participants discussed the importance of attending to patient comfort and reducing physical pain. In response to being asked what respect looks like, one participant said: Well, for me, I think it’s somebody would walk in and say, “Are you comfortable? What’s your pain level? Is there anything I can do? Do you need to be repositioned?” You need to just be focused on taking their pain away. [Patient’s husband]
Another family member equated disrespect with being dismissed: So again, maybe some people complain about their catheter all the time and there’s nothing they can do. But when my mom complained, it bothered me that it was dismissed. And then she was getting nauseous. [Patient’s daughter]
Another family member said: You know, she’s in pain from the—you know, she can’t hardly swallow because there’s a tube in there, and it was kind of jabbing her when she’d swallow. So let’s forget about the “Why’s?” and concentrate on, “How can we make her comfy?”[Patient’s husband]
Responsiveness Although some acknowledged understanding that ICUs are busy places, participants spoke about the physical and emotional distress incurred by having to wait for clinicians to respond to their needs. I was there for fluids for a bad stomach flu and didn’t get them for four hours because my line was kinked but no one came in to check. [Female patient] An example, if you ask for something, “All right, give me a minute,” it takes an hour before they even get back around to me. [Male patient]
Discussion Our study found that patients and families who had experienced the ICU identified many ways to
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conceptualize respect and dignity, and provided examples of behaviors that embodied, or did not embody, treatment with respect and dignity. With increased attention to improving patient experiences of care, treatment with respect and dignity is at the heart of having as positive an experience that the situation permits. Thus, understanding how respect and dignity are conceptualized from patients’ perspectives is essential to knowing how to improve the quality of care delivered to patients. These results have implications for health professionals in clinical practice, for those interested in measuring and improving health care quality, and for the field of bioethics itself. For health professionals, and those responsible for monitoring and improving health care quality, patients’ and their families’ perspectives on respect and dignity can be thought of as a blueprint for action. The rich and varied descriptions that they use to describe what respect and dignity mean to them—being acknowledged, being treated as a person, as an equal, as a family member or friend, and so on—can be used to convey the “spirit” of actions that are performed routinely in clinical practice. In some cases, they may be more useful than describing particular behaviors that should be encouraged, because the essence of treating a person with respect and dignity is more than the sum of any set of particular behaviors. On the other hand, the particular examples given by patients—being listened to and allowed to give one’s own opinion or input into the treatment plan, having a naked body covered, and being given medical information—are also important. Health care providers are very busy, and ICUs are often chaotic. Thus, it is important to note that many of the behaviors patients and their families cited as respectful and attend to dignity do not take much time and can be provided by anyone on the care team. Although the overall definitions of being treated with respect and dignity convey ways of approaching patients, the behaviors fill in some of the details. In terms of measuring and monitoring patients’ experiences, with the goal of identifying areas for improvement, these behaviors serve as a framework for a comprehensive measure. Further
work could take these behaviors and develop an inventory of what constitutes being treated with respect and dignity, which reflects patients’ and their families’ perspectives and opinions. In terms of informing the field of bioethics, it is notable that there is alignment of patients’ perspectives on treatment with respect and dignity with the bioethical principle of respect for autonomy (Beauchamp & Childress, 2001), insofar as patients describe respect as health professionals giving them information, being honest, and asking their opinion. In addition, there is alignment of patients’ perspectives with respect for persons as a type of valuing (Beach et al., 2007). It is also notable that patients and families describe a great deal more than that. Many behaviors, such as bathing or teeth brushing, thought of as trivial, might not seem relevant to the field of bioethics. Yet patients and families who have experienced the ICU highlight them as essential to what it means to be treated with respect and dignity. This difference provides an opportunity for philosophers to reconsider the general question of what a moral obligation to respect another person entails, or specifically what it means for a health professional to respect and attend to a patient’s dignity, and how these behaviors might fit together conceptually under the broader category of respect and dignity. Our study should be interpreted with several limitations in mind. First, we conducted the study at one point during the ICU admission, and yet a person’s perception of treatment with respect and dignity may vary as the clinical circumstances change. Moreover, an ICU stay is a particular type of experience that might provide meaningful insight into respect and dignity in health care, but the specific behaviors that demonstrate respect may be different during an outpatient clinical appointment. As such, our results are not necessarily applicable to other settings. Also, interviewees were not asked to discuss the behavior of physicians as compared with nurses as compared with other health care professionals separately and they often did not differentiate them in their comments. Further, we conducted this study in one city, in ICUs in one academic health system, and with only
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
African–American and White patients. Different themes may have emerged if we had interviewed patients from other racial and ethnic backgrounds and hospitals. Despite these limitations and the small number of interviews, we reached saturation, which strengthens our findings. Without understanding the perspectives of patients and their families, efforts to improve the degree of treatment with respect and dignity demonstrated in ICUs may not be responsive to what is most valued by those most affected. Patients and their families highlight a broad array of behaviors in this regard, which provide a framework for improving experiences in the ICU and revisiting the scope of the moral obligation of health care professionals to treat patients with respect and dignity.
References American Medical Association. Declaration of professional responsibility: Medicine’s social contract with humanity. Retrieved from http://www.ama–assn. org/ama/upload/mm/369/decofprofessional pdf. 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., Roter, D. L., Wang, N. Y., Duggan, P. S., & Cooper, L. A. (2006). Are physicians’ attitudes of respect accurately perceived by patients and associated with more positive communication behaviors? Patient Education and Counseling, 62(3), 347–354. Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. (5th ed.). New York: Oxford University Press. Gillon, R. (2003). Ethics needs principles—Four can encompass the rest—And respect for autonomy should be “first among equals”. Journal of Medical Ethics, 29(5), 307–312. Gostin, L. O. (1995). Informed consent, cultural sensitivity, and respect for persons. JAMA, 274 (10), 844–845. Henry, L. M., Ruston, 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. Medical professionalism in the new millennium: A physician charter (2002). Annals of Internal Medicine, 136(3), 243–246. Paasche–Orlow, M. (2004). The ethics of cultural competence. Academic Medicine, 79 (4), 347–350.
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Quigley, D. D., Elliott, M. N., Farley, D. O., Burkhart, Q., Skootsky, S. A., & Hays, R. D. (2014). Specialties differ in which aspects of doctor communication predict overall physician ratings. Journal of General Internal Medicine, 29 (3), 447–454. Sugarman, J. (2015). Toward treatment with respect and dignity in the intensive care unit. Narrative Inquiry in Bioethics, 5(1A), 1–4.
Appendix Interview Guide: Patients/Family Members I’d like to talk to you about some aspects of the care that you/your loved one received while in the ICU and how it might be improved. You will be asked to complete a “patient satisfaction” survey separately but this is an opportunity for us to talk in greater depth about your experience in the ICU.
Part 1. Patients’ and Families’ Thoughts About/Experience of Respect/Dignity 1. Can you tell me what brought you to the ICU and how long you’ve been here? 2. Tell me what you remember most about the care you received in the ICU.
Now I want to focus in on your ideas about treatment with respect and dignity. 3. When you think about what it means to treat patients with respect, what comes to mind? Are there particular feelings that you associate with being treated with respect? If so, can you describe them? 4. When you think about treating patients’ with dignity, what comes to mind? Are there any particular feelings that you associate with being treated with dignity? If so, can you describe those feelings? 5. Do you think there is a difference between being treated with respect and being treated with dignity? If so, how would you describe the difference? 6. Can you think of a specific time, while in the ICU, when you were treated particularly respectfully? What happened then? Was a particular person involved? What did that person do or say? What did s/he NOT do or say? Be as specific as possible.
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7. Now think of a time when you felt disrespected. What happened then? Was a particular person involved? What did that person do or say? What did s/he NOT do or say? Be as specific as possible. 8. Was there a specific time when you felt that your dignity was honored? What happened then? If a particular person was involved, what did that person do or say? What did s/he NOT do or say? Be as specific as possible. 9. Was there a specific time when you felt that your dignity was violated? What happened then? If a particular person was involved, what did that person do or say? What did s/he NOT do or say? Be as specific as possible. 10. How do you think care in the ICU can be improved? Probes: Particularly as it relates to treatment with respect/dignity? Particularly as it relates to communication? 11. If you were to advise the health care team in the ICU about treating patients with respect/ dignity, what would you tell them? What would you advise them about communicating with patients?
2.
3.
Part 2. Patients’ and Families’ Input/ Feedback on Platform Now I would like to talk about specific ways of improving care in the ICU. I’ll tell you some of our ideas and hear what you think of each of them, and I’ll also ask you about your ideas. 1. First, we know it’s really important for patients in the ICU to be viewed as a “whole person.” We’ve thought of a way for patients/ families to share personal information with the clinical team so they can get to know the patients better, for example, what they were like before the ICU admission and what is important to them. a. Show example of platform that has to do with “personalization” b. What do you think of this idea? Do you think patients and families would use this/ complete this information? What may get in the way of them using it or it being helpful? c. What other personal information would you want to provide? What about including who you would want to speak for you if you were unable to speak for yourself? Who is important in your life? Your preferences for how to
4.
5.
receive information and make decisions? Is there particular information you would NOT want to provide? We know that the ICU can be a very confusing and scary environment with lots of machines and weird noises. Do you remember having any kind of orientation to the ICU? What would have been helpful for you to know? For example, would it be helpful to you to learn more about all the equipment that is in your room so you know what to expect? a. Show example of platform that has to do with “orientation to the unit/room.” b. What do you think of this idea? Do you think patients and families would use this? What may get in the way of them using it or it being helpful? We also know that patients and families aren’t always aware of what support services are available to them and what each type of person does, for example, patient advocate, social worker, pastoral care. Would it be helpful to you to learn more about available support services? a. Show example of platform that has to do with “available support services.” b. What do you think of this idea? Do you think patients and families would use this information? What may get in the way of them using it or it being helpful? Communication between patients/families and their care team is sometimes difficult. When you first got to the ICU, did you understand what you could expect of your ICU team? Did you know if your ICU team had any expectations of you during your ICU stay? Did you know who to bring concerns to? Would it be helpful to know more about shared expectations? We thought of a way for patients/families and clinical team members to share their goals and concerns for the day. a. Show example of platform that has to do with “goals for the day.” b. Show example of platform that has to do with “Preparing questions/concerns and sharing those with clinician team prior to rounds.” c. What do you think of these ideas? Do you think patients and families would use this/ complete this information? What may get in the way of them using it or it being helpful? In ICUs, the members of the clinical team change all the time, as do schedules for the day. We thought it would be important for patients and families to
Patient and Family Perspectives on Respect and Dignity in the Intensive Care Unit
know who all of their clinicians are on any given day, and what the care plan is for that day. a. Show example of platform that has to do with “who sits on the care team, schedule/ care plan.” b. What do you think of these ideas? Do you think patients and families would use this information? What may get in the way of them using it or it being helpful? c. Is there any other information that you would like to see on here? What kind of information
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would you like to know about your care team, including doctors, nurses, therapists, social workers, etc.? 6. Before we finish, are there any other ideas/suggestions you have for improving the care you/ your loved one experienced in the ICU?
Thank you for taking the time to talk to me. Your feedback has been very helpful and will certainly be used to improve care in the ICU.
