Humanizing The ICU Patient A Qualitative.26
Humanizing The ICU Patient A Qualitative.26
D
Care Medicine. This is an open-access
ehumanization is viewing or treating another human being as less article distributed under the terms of
than human (1). When people are dehumanized, others view them the Creative Commons Attribution-
or treat them as if they do not possess the same mental capabilities or Non Commercial-No Derivatives
agency that other human beings have (2). Dehumanization is often associated License 4.0 (CCBY-NC-ND), where it
with disrespect—or a failure to honor another person’s dignity or worth (3). is permissible to download and share
Dehumanization can be strikingly overt (e.g., slavery or human rights viola- the work provided it is properly cited.
The work cannot be changed in any
tions) or it can be more subtle (e.g., bias, discrimination, indifference, or lack way or used commercially without
of empathy) (1). On the other hand, humanization refers to honoring the full permission from the journal.
identity, community, and dignity of another human being. When people are
DOI: 10.1097/CCE.0000000000000463
humanized, others view or treat them as if they have as those groups or individuals who are employed in an
the same mental richness and capabilities that other ICU setting or who have been admitted to an ICU. This
humans have (4, 5). Importantly, dehumanizing/ includes members of ICU teams (physicians, nurses,
humanizing behaviors may not be intentional and may nurse practitioners, physical therapists, chaplains,
be the unintended consequences of cultural norms and and social workers), ICU patients, and their family
workplace structures. members.
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N.H). Focus group participants were asked to describe Feinstein Institutes for Medical Research (Institutional
ICU-based situations in which they experienced or Review Board Number 17-0945).
observed patients or family members being treated in
both humanized ways (e.g., with kindness, or in ways RESULTS
that accommodated individuals’ unique needs and
wishes) or dehumanized ways (e.g., treated in a rough We evaluated the experiences of 71 ICU stakeholders
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manner, referred by only their room number), and the (28 patient survivors, eight family members of ICU
causes and consequences of these behaviors as it related survivors, four family members of patients who died
wCX1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC1y0abggQZXdgGj2MwlZLeI= on 04/07/2023
to patient care and outcomes. All focus group sessions in the ICU, eight physicians/nurse practitioners, three
were audio recorded. Focus group audio recordings nurses, 11 therapists, and 10 chaplains (Supplemental
were de-identified and transcribed verbatim. Part 2 Table 2, http://links.lww.com/CCX/A691). These par-
consisted of administration of an open-ended survey ticipants worked at, or received patient care at, 48 ICUs
using an asynchronous social media platform. The sur- in the United States and Canada. Overall, 73% of par-
veys were posted to the public patient/family Facebook ticipants were women. Among the 71 participants, 45
page of the ARDS Foundation, and included two participated in the focus groups and 26 participated in
open-ended questions regarding dehumanizing and the message boards (Table 1).
humanizing ICU experiences (Supplemental Table 1,
http://links.lww.com/CCX/A691). Surveys were open Dehumanizing and Humanizing Behaviors
2 for weeks for participants to respond. Participants identified several behaviors of the medical
team which they perceived to be either dehumanizing
Data Analysis or humanizing (Supplemental Fig. 1, http://links.lww.
Focus group transcriptions and written responses from com/CCX/A692 and Supplemental Table 3, http://
the Facebook postings were read by three members of links.lww.com/CCX/A691).
the study team. Analysis included a deductive approach Communication. Patients were dehumanized when
using a priori codes based on our specific focus group medical teams talked over them, rather than to them—
and online survey questions related to humanizing and often when the patients were assumed to be sedated or
dehumanizing experiences in the ICU. We also applied unaware. In comparison, team members at other times
an inductive approach. This allowed us to develop new would always introduce themselves to the patient and
codes based on the unique experiences of our par- explain what was happening, even when the patient
ticipants as they emerged during our readings of the was assumed to be sedated or unaware. It was also per-
transcripts and survey responses. The study team met ceived to be dehumanizing when team members did
weekly both in person or by phone, to discuss findings not learn about the patient as a person or did not refer
and develop our qualitative codebook. All transcripts to the patient as a person (e.g., referred to the patient
and open-ended survey responses were uploaded by a room number or diagnosis). This was in compar-
to NVivo 12 (QSR International, Doncaster, VIC, ison to medical teams who learned personal informa-
Australia) and coded using this codebook. Initially, tion about the patient and often included photographs
the first four out of eight transcripts were coded inde- of the patient’s pre-hospital life. Dehumanization
pendently by two investigators (M.J.B., M.E.W.), after occurred when medical teams said distressing, dismis-
which we tested inter-rater reliability between the two sive, or offensive remarks, including mocking patients
coders. The percent agreement was 99%, with a kappa or blaming them for their own illness or for soiling
statistic of 0.72, indicating substantial inter-rater relia- themselves. Patients reported that they could overhear
bility (24), allowing the remaining four transcripts and the chatter in their ICU rooms where clinicians would
Facebook posts to be coded by one coder. say distressing remarks when the clinicians assumed
the patients could not hear. Patients were humanized
when team members said encouraging and empathic
Institutional Review Board Statement
comments in the patient’s presence. Participants also
Approval for this study was granted by Northwell reported dehumanization when they were not ade-
Health’s Human Research Protection Office in The quately prepared for ICU or post-ICU events such as
TABLE 1.
Demographics of 33 Participants Who Attended the Focus Groups
Patient Survivor Caregivers (Patient ICU Health Team
Participant Characteristics (n = 8) Information) (n = 5) Member (n = 20)
Age, n (%)
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what the recovery process looked like and the possi- occurred when care team members took the time
bility of experiencing difficulties such as post-trau- to explain ICU events and the expected recovery to
matic stress disorder. In comparison, humanization patients and family members.
Family Involvement. It was perceived as dehuman- and not an actual person. In addition, when patients
izing when the patient’s family (their core support were dehumanized, they felt a loss of trust in the med-
system) was not allowed to be with them in their hos- ical team and a loss of patient/family motivation to
pital room, especially at night or at times of transition. participate in the recovery plan. When ICU events
In comparison, humanization occurred when family were not explained to patients, patients also reported
members were allowed and accommodated. experiencing confusion, disorientation, and delirium.
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Compassionate Care. Dehumanization occurred This, in turn, was associated with increased distress,
when the patient’s suffering was not assessed, recog- fear, panic, and anxiety. When patients are dehuman-
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nized, acknowledged, or attended to. This was in com- ized, there may be a lower likelihood that clinicians
parison to instances where the team not only attended will advocate for certain treatments resulting in po-
to routine suffering, but also identified and pro- tentially suboptimal medical treatment and neglect.
vided highly personalized ways of improving patient Family members also reported experiencing guilt, de-
well-being (such as honoring dying wishes). In addition, pression, and anxiety when they felt the patient was
patients felt dehumanized when care team members being dehumanized.
touched them without explanation or in a rough man- On the other hand, humanizing behaviors were
ner (e.g., using very cold water to bathe or moving their associated with improved physical recovery in-
bodies without notification, warning, or explanation). cluding faster strength recovery, earlier extubation,
Appropriate touch such as holding a patient’s hand and improved speech (Supplemental Fig. 1, http://
was felt to be very humanizing. Also, dehumanization links.lww.com/CCX/A692 and Supplemental Table 3,
occurred when the patient’s appearance (e.g., eyeglasses, http://links.lww.com/CCX/A691). Patients also had
hair) or basic hygiene (e.g., oral care) was neglected. In increased emotional and mental well-being and less
comparison, humanization occurred when oral care, distress. They had a better comprehension of reality,
hair care, and other hygiene practices (shaving legs, less delusions, and less delirium. There was increased
etc.) were performed. Participants reported dehuman- trust in the medical team, improved patient/physician
ization when the patient’s privacy, modesty, or sleeping relationship, and increased engagement and sense of
schedules were not respected—often when the medical purpose. In addition to patient outcomes, human-
team’s schedule or agenda took priority. In compar- ization was associated with several medical team
ison, humanization occurred when care team members outcomes such as increased empathy, increased mo-
respected modesty, privacy, and sleeping schedules. tivation to help the patient, spending more time with
Finally, dehumanization occurred when the patients the patient, valuing the patient as a person, developing
felt like they were not allowed to exercise control—even personalized care plans, and better understanding of
over simple items such as the timing of medication ad- goals of care. In addition, clinicians reported that when
ministration or when their personal cares occurred. patients where humanized, the clinicians also felt more
In comparison, many patients reported that one of the humanized themselves and found more joy in partici-
most humanizing aspects of critical care occurred when pating inpatient care.
the medical team allowed them to participate and exer-
cise some control over these simple activities. Potential Causes of Dehumanizing Behaviors
The causes of dehumanization as reported by ICU
Consequences of Dehumanizing and
Humanizing Behaviors healthcare team members, patients and families were
grouped into three types (Supplemental Fig. 1. http://
Patient participants reported feeling devalued and feel- links.lww.com/CCX/A692 and Supplemental Table 4,
ing as though they were a bother to the medical team http://links.lww.com/CCX/A691).
(Supplemental Fig. 1, http://links.lww.com/CCX/A692 Patient/Family Causes. Participants suggested that
and Supplemental Table 2, http://links.lww.com/CCX/ potential causes of dehumanizing behaviors included
A691) because of dehumanizing behaviors. One family patients appearing ill or medicalized (i.e., with “lines
member described that she felt that, to the medical and tubes” attached to them) patients having impaired
team, her husband was “just a body taking up a bed” cognition (often due to sedation or illness), language
barriers, being perceived to be difficult or having ex- the patient what was happening, or do things to the
ceptional needs, being perceived to be the cause of their patient, such as examining them, turning them, or
own illness (e.g., drug overdose or repeated missed di- changing their ventilator settings, without telling them
alysis sessions), and when there was no family advo- what they were doing. From the patient’s perspec-
cate present at the bedside. tive, when an unknown person walked into the room
ICU Healthcare Team Causes. ICU healthcare team and started touching them or doing things to them
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potential causes suggested by participants included without any explanation, this was often distressing—
situations in which the medical team used dehumani- especially when the patient had no ability to commu-
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zation or detachment as a coping mechanism for their nicate their distress to the person in the room. One
own distress, focused on task completion, lacked situ- patient summed this up when she said, “All I could
ational awareness of the patient’s suffering or situation, do was scream inside and cry since I couldn’t talk.”
had significant other time constraints, received no Preliminary investigation of interventions to commu-
training or modeling of humanization behaviors, and nicate to ICU patients about what is happening have
had no personal experiences of being an ICU patient been associated with improved outcomes such as less
or family member. sedation utilization, shorter duration of mechanical
Healthcare System Causes. Healthcare system- ventilation, and less delirium (25, 26).
related factors that might cause dehumanizing behav- Family presence was viewed widely to be a source of
iors included a culture of dehumanization, wherein humanization for patients. Families served as a source
certain aspects of dehumanized care are normalized of advocacy for patients when they could not advo-
such as referring to a patient by their room number cate for themselves, were a link to the patient’s life and
instead of their name; fragmented care, wherein shift personality outside of the hospital, and were an irre-
changes prevent meaningful engagement with patients placeable support system for the patients. Family pres-
over time; protocols that do not account for humaniz- ence was crucial at times of transition such as during
ing behaviors, such as cardiopulmonary resuscitation nighttime or during arrival to a new unit with a new
protocols; and hospital schedules that often do not care team and environment. Unfortunately, only a mi-
fit individual patient needs or are disruptive such as nority of ICUs in the United States have unrestricted
body-washing in the middle of the night. family visitation policies (27). This is despite a growing
body evidence that open visitation and family pres-
ence is associated with improvements in anxiety, agi-
DISCUSSION tation, length of ICU stay, satisfaction, and end-of-life
Our work has captured a range of experiences of care (28–31). On the contrary, when families (or even
dehumanizing/humanizing behaviors as described by patients themselves) were considered to be exception-
patient survivors, family members of survivors and ally needy or overbearing—this led certain medical
nonsurvivors, nurses, and multidisciplinary ICU staff. staff to distance themselves and potentially dehu-
The dehumanizing behaviors identified by the stake- manize patients.
holder participants were often perceived to be unin- Among many other potential factors, the subop-
tentional (i.e., without purposeful malice). Medical timal well-being of ICU team members was felt to
team members were also perceived to be unaware play a causative role in dehumanizing behaviors. Thus,
that their behavior or practices were dehumanizing to efforts to reduce dehumanization of ICU patients
patients and their families. One of the most referenced will not be successful without consideration of the
examples of this in our study, among the dehuman- well-being, distress, and burnout of the multidiscipli-
izing behaviors (Table 2), was when clinicians entered nary ICU team members. Burnout, one component
the patient’s ICU room and incorrectly assumed that of which is depersonalization, affects many ICU phy-
because the patient’s eyes were closed or because they sicians and nurses (32). High workload, high patient
could not communicate back that the patient was to staff ratios, and perceived moral distress may all
also unaware of what was happening. Often, in this contribute to ICU team members treating patients as
setting clinicians would fail to introduce themselves “objects” rather than human beings in need of compas-
when they walked in the room, failed to explain to sionate care (22).
TABLE 2.
Consequences of Dehumanizing Behaviors
Consequences of
Dehumanizing
Behaviors Example Quotes
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Patient/family felt “I got the ‘You can move yourself’ comments, and I already was so scared to bother [the medical
devalued by (or a staff] that I never asked for help unless I really needed it. So I stopped asking for help moving
bother to) the ICU team until I had slid so far down [the bed] that my knees were bent up my waist.” (Patient)
wCX1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC1y0abggQZXdgGj2MwlZLeI= on 04/07/2023
Patient/family lost trust “All I wanted to do at that point was to leave the hospital, and I did. I left the hospital.
in the ICU team I came home. I did not go to—they wanted me to go to a rehab, but I wouldn’t go there.
Patient/family lost I just wanted to come home and take care of myself.” (Patient)
motivation to participate
in recovery plan
Patient became “The [doctor’s] conversation was just so casual around, ‘Well, she’s gotta go to rehab,’…I’m
disoriented sure it sounded perfectly normal to [the doctors], but to [the patient]…she went to sleep
(misinterpreted reality) one day and woke up a month later and didn’t know exactly what was going on. Her mind
is reorienting, and she thought that she had had some sort of a drug overdose…and that
she was going in drug rehab. That’s an example of the kind of language that led to this
misunderstanding of her situation. It was extremely anxiety-producing.” (Family member)
Patient experienced “I was 31 weeks pregnant when I woke up [from my coma] and being tied up not knowing
distress (fear, panic, what’s going on, I became paranoid thinking that the hospital was trying to take my baby, like
anxiety) I was kidnapped…[My medical team] automatically assumed that I knew what was going on,
why I was there and everything that happened. And I honestly didn’t know anything. All I
knew was that I opened my eyes and now I’m in a hospital bed tied down, staples across
my pregnant belly from the emergency surgery of a ruptured appendix. I remember being so
terrified…It’s still a battle, physically and mentally.” (Patient)
Loss of encouragement “I’m haunted by the fact that we were told repeatedly and dismissively that my mom couldn’t
and support hear us when she was in a coma. It wasn’t till I joined this [support] group that I realized
many people knew what was going on around them while they were on the vent
[or in a coma]. I think about what we said in her presence that might have been terrifying
to her. I think about what I would have said to her had I known she possibly could have
heard me…My mom died after 19 days with ARDS, so I’ll never know.” (Family member)
Loss of patient advocacy “I had a patient that was…very delirious, hadn’t been gotten up in days. Nursing didn’t even
Suboptimal medical really know his name. He had some bleeding going on that no one had noticed…
treatment (neglect) [He was] not getting as much attention as should be given, because he wasn’t really
talking for himself.” (Therapist)
Family guilt, depression, One family member recalled when she was trying to help her sister who was agitated on the
or anxiety ventilator,…“One of the doctors had come in and looked at me and looked at how agitated
[my sister] was and said to me, ‘She’s really sick, and you’re really agitating her. You need
to step out.’ I went outside and cried.” (Family member)
Our work has several implications. First, ICU clini- there is a tension between the clinicians need to detach
cians and team members should be aware that patients themselves enough to be able to perform invasive pro-
and families (and other stakeholders) can feel dehu- cedures, and the recognition of the patient as a human
manized. The medical team may often be unaware with sensitivity to pain. Third, further investigation
that dehumanizing behaviors are occurring, and these should be given to measure the impact of dehuman-
specific examples may increase awareness and change izing behaviors on patient, family, and ICU team out-
behaviors. Second, solutions to reduce dehumanization comes. This too will be challenging as there will need
and increase humanization should be explored—with to be an objective measure of dehumanizing behaviors.
specific attention given to addressing the root causes of Efforts to increase humanizing behaviors must be bal-
dehumanizing behaviors including clinician well-being anced to provide compassionate patient care while sup-
a culture promoting empathy. This will be difficult as porting clinician psychologic well-being.
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