Exploring Family Experiences of Nursing Aspects of End-Of-Life Care in The ICU: A Qualitative Study

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Intensive and Critical Care Nursing (2016) 33, 56—64

Available online at www.sciencedirect.com

ScienceDirect

journal homepage:www.elsevier.com/iccn

ORIGINAL ARTICLE

Exploring family experiences of


nursing aspects of end-of-life care in
the ICU: A qualitative study
a,b,∗ a,c
Marijke Noome , Boukje M. Dijkstra , Evert van
d a,d,e
Leeuwen , Lilian C.M. Vloet
a
Research Department of Emergency and Critical Care, HAN University of Applied Sciences,
Nijmegen, The Netherlands
b
Bachelor of Nursing, The Hague University of Applied Sciences, The Hague, The Netherlands
c
Intensive Care Unit, Radboud University Medical Centre Nijmegen, Nijmegen, The Netherlands
d
Scientific Institute for Quality of Healthcare, Radboud University Medical Centre Nijmegen,
Nijmegen, The Netherlands
e
Canisius-Wilhelmina Hospital, Nijmegen, The Netherlands

Received 26 January 2015; received in revised form 9 December 2015; accepted 21 December 2015

KEYWORDS Summary
Family; Objectives: The aim of this study was to examine the experience(s) of family with the nursing
Nursing care; aspects of End-of-life care in the intensive care unit after a decision to end life-sustaining
End-of-life care; treatment, and to describe what nursing care was most appreciated and what was lacking.
Intensive care; Method: A phenomenological approach including inductive thematic analysis was used.
Qualitative research Twenty-six family members of deceased critically ill-patients were interviewed within two
months after the patient’s death about their experiences with nursing aspects of end-of-life
care in the intensive care unit.
Findings: Most family members experienced nursing contribution to end-of-life care of the
patient and themselves, especially supportive care. Families mentioned the following topics:
Communication between intensive care nurses, critically ill patients and family; Nursing care
for critically ill patients; Nursing care for families of critically ill patients; Pre-conditions.
Fam-ilies appreciated that intensive care nurses were available at any time and willing to
answer questions. But care was lacking because families had for example, a sense of
responsibility for obtaining information, they had problems to understand their role in the
decision-making process, and were not invited by nurses to participate in the care.


Corresponding author at: HAN University of Applied Sciences, Research Department of Emergency and Critical Care, P.O. Box 6960,
6503 GL Nijmegen, The Netherlands. Tel.: +31 24 353 1147.
E-mail addresses: Marijke.Noome@han.nl (M. Noome), Boukje.Dijkstra@han.nl (B.M. Dijkstra),
Evert.vanLeeuwen@radboudumc.nl (E. van Leeuwen), Lilian.Vloet@han.nl (L.C.M. Vloet).

http://dx.doi.org/10.1016/j.iccn.2015.12.004
0964-3397/© 2016 Elsevier Ltd. All rights reserved.
Experiences of family with nursing end-of-life care in the ICU 57

Conclusions: Most family appreciated the nursing EOLC they received, specifically the nursing
care given to the patient and themselves. Some topics needed more attention, like
information and support for the family.
© 2016 Elsevier Ltd. All rights reserved.

Implications for Clinical Practice

• This paper adds insight into the experiences, needs and wants of family of deceased ICU patients, related to
nursing care. Some omissions in nursing EOLC in the ICU were found, including the families’ feeling of being
responsible for obtaining information and understanding their role in the decision-making process, not being able
to say goodbye, not inviting family to participate in the care for the patients, and the follow up meeting.
• Previous studies showed omissions in communication between ICU nurses and family, in contrast to the results in
this study.
• ICU nurses can adapt their care to the needs and wants of family of dying ICU patients, which may improve the
quality of care.

the patient. However physicians strive for agreement on


Introduction treatment decisions with the family (Gerritsen et al., 2009).
Nursing care is, among other things aimed at emotional
In the Netherlands, nearly 8% of all intensive care unit (ICU) and spiritual support for patient and family, because an
patients die in the ICU (NICE, 2015). Because of the use of ICU stay of a (beloved) person can cause anxiety,
life-sustaining measures, approximately 85% of the deaths of depression and even posttraumatic stress disorder
ICU patients occur after withdrawal or withholding life- (Davidson et al., 2012; Kirchhoff et al., 2004).
sustaining treatment (Kompanje et al., 2013). Withholding Family of ICU patients experienced the relationship with
treatment can be defined as a planned medical decision not ICU nurses during the end-of-life (EOL) decision-making pro-
to order treatments that are otherwise warranted, whereas cess as adequate regarding compassion and comfort, but they
withdrawal of treatment means the discontinuation of life- deemed the communication as vague and evasive (Lind et al.,
sustaining treatment (Latour et al., 2009; Quenot et al., 2012; 2012). Besides, nurses did not always participate in family
Valentin et al., 2008). meetings thus family missed the support of nurses. These
Because of the increasing number of critically ill findings are in line with the results of Lloyd-Williams et al.
patients, the number of decisions to withdraw or withhold (2009). In this study, family appreciated the physical care for
life-sustaining treatment is expected to increase as well the patients, but communication and delivery of bad news
(Halcomb et al., 2004; Kompanje et al., 2013). were a cause for concern. Also, the facilities in the ICU, such
In the Netherlands three levels of ICUs exist. In Table 1 as lack of family rooms, little privacy at the patients’ bedside
the differences between the levels of the ICUs are pre- or during farewell and lack of follow up meetings were
sented. mentioned.
End-of-life care (EOLC) is defined as the care and sup- Follow up meetings, support groups and family meet-
portive services that a serious ill patient and his family ings with an attending nurse for family of deceased ICU
receive following the decision to end treatment(s) (Latour patients are recommended as a way for professionals to
et al., 2009). Domains of quality of EOLC in the ICU are communicate with family (Davidson et al., 2012). These
described including: (1) patient and family centered deci- authors describe the post-intensive care syndrome fam-ily,
sion making, (2) communication with patients and family, representing the response of family to EOLC and the death
(3) continuity of care, (4) emotional and practical support of ICU patients, including anxiety, acute stress disor-der,
for patients and family, (5) symptom management and posttraumatic stress, depression and complicated grief.
comfort care, (6) spiritual support and (7) emotional and Communication and involving family in care may affect
organisa-tional support for ICU professionals (Curtis and long-term outcomes.
Engelberg, 2006). In the Netherlands, the ICU physician communicates with
During EOLC, not only ICU patients need nursing care, but patients and family about treatments and sometimes the
also their family, including relatives and friends, need care physician will ask the family what they think that should be
and support. In the Netherlands, family members act as the done. However, the physician decides. The physician has to
legal representative of a patient who is unconscious or request informed consent of the patient about the treatment.
sedated. This means that the family have to be informed When a patient is unconscious, sedated or incom-petent, the
about the treatment and should represent the values and legal representative of the patient has to be informed and
preferences of the patient. Family often discuss their ideas should represent the values and preferences of the patient in
and thoughts about withdrawing treatment with the attend- decision-making (Gerritsen et al., 2009; NICE, 2015). The
ing nurses. However, the decision for treatment is made by patient, if possible, and family are informed during family
the physician and family do not decide on treatment for meetings. Regularly, the physician discusses
58 M. Noome et al.
Table 1 Levels of ICU.

Level of ICU Care Seriousness of illness Amount of Access of nurses Nurse-patient


ICU beds and intensivists ratio
Level 1 Basic care A patient who has Minimum of Not necessarily This can differ
been mechanically 6 beds constant access of
ventilated for three a intensivist
days or more has to
be transferred to a
level 2 or 3 ICU
Level 2 High care Serious illnesses, but Minimum of Constant access to Day: 1:2
not patients with 12 beds specialised nurses Evening: 1:3
extremely and intensivists Night: 1:3 or
complicated illnesses access during day 1:4
and evening
Level 3 High- Serious illnesses and Minimum of Constant access to Day: 1:1
intensity extremely 12 beds specialised nurses Evening: 1:2
care complicated illnesses and intensivists Night: 1:3 or
1:4
Kiers (2015) and NVA (2006).

issues of care and ending treatment with nurses and other Netherlands. Families of deceased ICU patients were con-
professionals. sidered eligible when the ICU patient had died in the ICU at
Nurses have a role in EOLC of ICU patients and their fam- least three weeks previously, after withholding or withdraw-
ily. We wondered if family experience nursing EOLC in the ICU ing treatment. Selection criteria for family members were:
and how they judge it. Knowledge of the experiences of speaking Dutch, being 18 years or older, and having been a
family will enable ICU nurses to adapt their care to the needs contact person for the ICU patient. A contact person is often
and wants of family of dying ICU patients in the Netherlands. partner, parent or friend, appointed by the patient as con-
tact for professionals in case of emergency. Family who had
been asked to consent to organ donation were excluded.
Aim and research question
In each participating medical centre, an ICU nurse
phoned the contact person of the deceased patient to
The primary aim of this study was to examine the expe-
inform them about the study between three to six weeks
rience(s) of the family with nursing EOLC in ICUs after a
after the death of the patient. This was not the standard
decision to end life-sustaining treatment. Secondary aims
procedure in all hospitals. In the phone call the nurse
were to describe what the family appreciated most and what asked if the contact person objected to being contacted
they missed during EOLC in nursing care. The primary by the researcher (MN) for information about the study. In
research question was ‘What are the experiences of the six cases family refused further contact, because they felt
family with the nursing aspects of End-of-life care in the ICU?’ too emotional (n = 3), or were not available (n = 3).
The secondary research question was ‘What elements of care When the family member agreed, the researcher called
are appreciated most, and what is lacking?’. one week after the phone call between the nurse and the
family member. The researcher expressed her condolences,
Methods gave information about the study and asked the family mem-
ber to participate. After the agreement to participate the
Design researcher visited the family member for the interview at a
time and place of the family member’s choice. All fam-ilies
received written information about the study before the
A phenomenological approach was used, including induc-
interview, completed by the researcher during the inter-view,
tive thematic analysis. A phenomenological approach aims
and gave informed consent.
to generate a description of a phenomenon of everyday
Twenty-six family members of twenty deceased adult
experiences and to achieve an understanding of its essen-
ICU patients participated (see Table 3).
tial structure (Holloway and Wheeler, 2002 ). We studied
the experiences of family of the nursing EOLC in the ICU.
We followed the six steps for the inductive thematic anal- Ethical considerations
ysis as described by Kvale (1996), as shown in Table 2.
The study was approved by the Regional Committee for
Sample and setting Medical and Health Research Ethics and subsequently by
the participating ICUs. Potential participants were given
Family were recruited through purposive sampling in one
both written and verbal information about the study. After
university hospital and three general hospitals in the
willingness to participate, written informed consent was
Experiences of family with nursing end-of-life care in the ICU 59

Table 2 Steps of the inductive thematic analysis as described by Kvale (1996).

Step Description

1 Subjects describe their lived world during the interview,


2 Subjects themselves discover new relationships during the interview, see new meanings in what they see and do
3 The interviewer, during the interview, condenses and interprets the meaning of what the interviewee describes
and ‘sends’ the meaning back, ideally until there is only one possible interpretation left or the multiple
understandings of a theme by the subject are known
4 The transcribed interview is interpreted by the interviewer, either alone or with other researchers. The material
is first structured. Then follows clarification by for example eliminating digressions and repetitions and
distinguishes between the essential and the non-essential. The analysis proper involves developing the meanings
of the interviews, bringing the subjects’ own understanding into the light as well as providing new perspectives
from the researcher on the phenomena
5 A re-interview. The subjects get the opportunity to comment on the interviewer’s interpretations as well as
elaborate on their own original statements
6 A possible sixth step would be to include action. Subjects begin to act from new insights they have gained during
the interview

Table 3 Demographics of study sample.

No. Family Age family Diagnosis Duration of Hospital


members’ member stay in ICU
relation to ICU (years) (days)
patient
1 Son 42 Trauma 10 University
2 Wife 72 Trauma 8 University
3 Husband 82 Trauma 14 District
4 Daughter 53
5 Daughter 50 Resuscitation 4 District
6 Son in law 40
7 Husband 59 Cerebrovascular 4 University
8 Daughter 40 accident
9 Niece 51 Wound infection and 27 District
resuscitation
10 Brother 69 Vascular 22 District
11 Sister 72 surgery
12 Husband 40 Multiple organ failure 10 University
13 Wife 82 Sepsis with 2 District
14 Friend 51 cholangitis
15 Brother 61 Ketoacidosis 1 University
16 Sister in law 61
17 Wife 67 Kidney failure and 4 District
sepsis
18 Daughter 25 Scleroderma 42 University
19 Wife 69 Cardiac surgery 7 District
20 Husband 61 Endocarditis and 56 District and University
pneumonia
21 Daughter 54 Multiple organ failure 1 University
22 Wife 62 Respiratory failure 7 University
23 Daughter 52 Myocardial infarction, 4 District
kidney failure and
liver failure
24 Wife 68 Cerebrovascular 3 University
accident
25 Wife 44 Pancreatitis 107 University
26 Wife 51 Trauma 17 University
60 M. Noome et al.

Rough data: transcrip on of the interviews

Open coding

121 codes

Axialcoding

53 codes

Selec ve coding

Figure 1 Topic list.


Theme 1 Theme 2 Theme 3 Theme 4

Communica on Nursing care for Nursing care for Condi ons


obtained from all participants. At the start of the between ICU ICU pa ents family of the
nurses, ICU ICU pa ent
interview, the researcher explained the participants that pa ents and
they could refuse to participate at any time. Besides, the family
researchers were aware of the possibility that sharing (13 codes) (7 codes) (17 codes) (8 codes)
their experiences could cause emotional reaction in
family. Therefore the researchers asked the family
whether they wanted to have a follow-up meeting with a Figure 2 Schematic overview of the analysis.
professional from the hospital after the interview.
creating a label for each sentence. As codes emerged, they
were compared with codes from earlier interviews to deter-
Data collection
mine similarities and differences. The codes were grouped
and labelled using broader categories and themes. The code
Twenty-six semi-structured interviews were held on the
tree was designed accordingly. The data were then orga-nised
families’ experiences. Twenty-three interviews were held at
to describe the needs and wants of family. A schematic
the family’ home, two in the hospital and one in the
overview of the data analysis is presented in Fig. 2.
researchers’ office. Interviews were conducted from June
2012 to July 2012, lasted 45 to 75 minutes and occurred five
to eight weeks after the ICU patients’ death. Six family Validity
members chose to participate with another family member.
They found it difficult to be interviewed alone or were wor- During the interviews, the researcher interpreted the
ried that they might forget to share relevant information. mean-ing of what the family member said and checked the
The researcher (MN) started the interview with a meaning afterwards if the right interpretation had been
narrative-inducing question: ‘Could you tell me about the made, through which one possible interpretation left
care provided from the moment you heard that treatment (Kvale, 1996). Additionally, the transcribed interviews
would be withheld or withdrawn until the moment your were verified by randomly comparing parts of the
family member died?’. A topic list based on the literature audiotape and transcrip-tion.
was used to ensure that relevant topics were covered in One interview was independently analysed by two
the interview (see Fig. 1) (Curtis and Engelberg, 2006; researchers (MN,BD). This interview was discussed with a
Latour et al., 2009). Additionally, the researcher inquired third researcher. The researchers worked towards a consen-
after nursing care as experienced by family. sus in interpretation, like peer review. This iterative process
constituted investigator triangulation and increased the reli-
ability of the analysis (Holloway and Wheeler, 2002 ). The
Data analysis transparency of the analytical process and verifiability of the
research was enhanced by using memos made by the
Interviews were audio-recorded and transcribed verbatim. researchers to explain interpretations and conclusions.
Qualitative software tool Kwalitan, version 5, was used for Coding and development of categories were mainly car-
analysis. An inductive thematic analysis was used to gain ried out by the first researcher, peer review was
understanding of the families’ needs and wants during performed by the second researcher.
EOLC in an ICU, specified to nursing care. Some family
mem-bers also talked about the care provided by the
physicians, however all family members were able to Findings
distinguish nurs-ing care. Using the experiences, what was
appreciated and missed in the care, the needs and wants Most family members had positive experiences with the
of the family were formulated. nursing EOLC the patient had received, although not all the
The inductive thematic analysis of the interviews was needs and wants of the family were assessed a regu-lar
made by one researcher (MN). Transcripts were analysed for
basis. The experiences of family members during nursing
content line by line and codes were noted in the margins,
EOLC could be arranged in four themes:
Experiences of family with nursing end-of-life care in the ICU 61

1. Communication between ICU nurses, ICU patients and nurses showed to the patients. Nurses cared for the
family. patient as a whole person.
2. Nursing care for ICU patients.
3. Nursing care for family of ICU patients. ‘They took the tube out, together with all other lines,
4. Preconditions. so they took everything. So, yeah, he was there in bed,
just like a normal person in bed.’ (Family member 6)
Per theme examples will be given of experiences, and
The dying process went calmly for all patients, due to
which elements of care were appreciated most, and which
the care provided by the ICU nurses. Therefore, family
were lacking (needs and wants).
members were able to focus on saying goodbye. Turning
off the mon-itor at the bedside was appreciated by
Communication between ICU nurses, ICU twenty-three family members, which leads to not being
patient and family distracted from saying goodbye.

Most appreciated was that ICU nurses were available at


any time, and willing to answer questions. Family admired Nursing care for family of ICU patients
the way ICU nurses treated the family, made clear for
example by nurses accompanying family to the patient, All family members wished to stay with the patient.
being present during visits, and by informing them about Family appreciated the possibility to perform their own
the patients’ status. rituals dur-ing the dying process of the patient; they could
All family participated in a family meeting. In each sing at the bedside, lie in bed with the patient or were
meet-ing an ICU nurse was present, but family did not able to be at the bedside with the entire family.
remember the specific role. Families most appreciated the time they got for saying
goodbye to the patient.
‘During the family meeting, the ICU nurse added infor-
mation sometimes, but most of the time she did not ‘. . .What I liked, between the moment I called the
speak. But when she thought we did not understand family and their arrival in the ICU, I was able to spend
what the doctor was telling, she explained it to us in a some time alone at the bedside. The nurses left me in
clear way.’ (Family member 24) peace, so I was able to say the things I wanted to say.’
(Family member 26)
One family member mentioned that the ICU nurse
helped her with asking questions. Family members found Three family members were not able to say goodbye
the fam-ily meeting kind, they felt they could ask all while the patient was still conscious. The patient was
questions and express their emotions. sedated without the family being informed, thus leaving
Besides, ICU nurses informed family about symptoms dur- no opportunity for family to speak with the patient for one
ing the dying process, about care after death of the patient, last time.
and whom they had to contact about the funeral and further
arrangements. Family appreciated this information. ‘He was not aware himself (of the fact that he was dying).
Problematic communication between ICU nurses and And we weren’t either. Because he said: ‘See you later’.
other professionals was experienced by family in relation He was even waiving. We thought we would be back in two
to the decision-making process. All patients were or three hours, so we could stay with him before he would
unconscious, and the contact person of the patient was go into surgery, but he went into surgery that evening.
informed about the medical situation of the patient. Six And we found that really difficult, because yeah, we did
family members feared the decision-making process. not have the opportunity to say goodbye.’ (Family member
13 and 14)
‘We were glad that we did not have to make the deci-sion,
we were afraid that they would ask us to decide to Five family members were invited to assist in care for the
withhold or withdraw the life-sustaining treatment. The patient. The other family members were not aware of this
health care team clearly explained why they thought the possibility and they did not think of it, because their mind
treatment should be discontinued; they only asked us if was occupied. They said they would have wanted to assist in
we understood everything.’ (Family member 1) caring for the patient or wanted to be present during care.
Families appreciated seeing familiar nurses during the
Family knew that in the Netherlands, the physician
patients’ stay in the ICU. Nurses showed interest in
decides about the treatment, however some family mem-
families through inquiring after personal stories about the
bers were afraid that they had to make this decision. They
patient and by having conversations with family members.
did not want to make this decision, which caused a sense
Almost half of the family members mentioned they did not
of anxiety. They also felt the professionals were afraid of
expect any interest from nurses in their situation. They
discussing EOLC.
appreciated care provided by nurses, such as offering
drinks and food, or a sleeping place.
Nursing care for ICU patients Nine family members received a condolence card after-
wards from the ICU, a gesture they appreciated. Some
All family members appreciated the nursing care for the family members were invited for a follow up meeting, two
critically ill patient very well; they noticed the respect the family members used this opportunity.
62 M. Noome et al.

Preconditions important to inform family in a similar, understandable


way (Clarke et al., 2003; Crump et al., 2010).
Most patients died in a single room in the ICU, which was Even when the ICU nurses tried to inform the family as
appreciated by the family. Two family members mentioned much as possible, family still felt fear to take responsibil-
that the nurses did everything possible to ensure that the ity in the decision of withdrawing treatment. Information
patient died in a single room; even if this was not an official about the final responsibility for this decision, which is the
patient room. Also open visiting hours without a restriction on physicians’, can therefore be considered very important.
the number of family at the bedside was appreciated. Lind et al. (2012) also mentioned loneliness felt by
Some family members reported that the ICU nurses did fam-ilies, caused by lacking ‘normal’ conversations with
not ask for a hospital chaplain, even though they had ICU nurses. In our study, family appreciated the care and
wished for one. During the interviews they said they had sup-port provided by ICU nurses. Conversations about the
so much on their mind at that time, which prevented them patient and the family themselves were appreciated;
from thinking about it themselves. families did not mention experiencing loneliness. This can
Most family members did not remember the possibility be a result of adequate communication, as is suggested in
of a follow up meeting. They suggested, because of their the study of Lind et al. (2012). However, some family
emo-tions, they did not hear everything that was offered. feared the decision-making process, which might increase
They also mentioned discomfort in contacting the ICU a form of loneliness, even when family did not mention it.
themselves for a follow up meeting, instead of being As Davidson et al. (2012) describe, inadequate com-
contacted by the hospital. munication between ICU professionals and family, and not
involving family in care, may cause a post-intensive care
‘We received a condolence card a few days later, so syndrome family (PICS). Inadequate communication was not
thoughtful. And if we wanted to schedule a follow up mentioned by the family in our study, but not involving fam-
meeting, this was possible. That was also written in the ily in care was mentioned. Three family members mentioned
card. And I was called for a follow up meeting twice, yes, that they did not know the patient was going to be sedated,
we appreciated that.’ (Family member 15 and 16) which can be considered inadequate communication. Also,
most family members wanted to be more involved in the
(last) care for the patient, but they just did not think about it
Discussion themselves during EOLC, and were not invited by the pro-
fessionals. Therefore, the question emerges if the family do
In this study, the aim was to examine the experiences of experience PICS nowadays. At the time of the interview, just
families in nursing care during EOL in ICU after a deci-sion a few weeks after death of the patient, they were sad about
to withhold or withdraw life-sustaining treatment. Most their loss, but no one mentioned being depressed or expe-
family members appreciated the nursing EOLC the patient riencing complicated grief. The time of the interview might
had received. Four themes of nursing EOLC were identi- be too early to determine this kind of consequences.
fied: communication, care for patients, care for family Families appreciated the time they had for calling other
and preconditions. family members and saying for goodbye. Unlike dying in other
The communication between family and nurses was con- settings, dying in the ICU usually takes a shorter period of
sidered good. ICU nurses were available at any time, and time (Fridh et al., 2007). The support of ICU nurses should be
willing to answer their questions. Families appreciated the adjusted to these specific circumstances by adequate
nursing care for the ICU patient and his family; they noticed communication, like informing family about the process and
the respect the nurses showed to the patient and them- the severity of the situation. ICU nurses could discuss the
selves. At last, family appreciated the single rooms for the possibility that the patient dies before all family members
patient. However, only a few family members were invited to have had the opportunity to say goodbye. Alternatively, ICU
assist in the care for the patient. Most family members were nurses should ask for specific wishes and needs of the patient
not aware of this possibility, but in the interviews they said and family. ICU nurses should for example mention the possi-
they would have liked to assist. They also mentioned that the bility of a hospital chaplain and the possibility of assisting in
nurses did not ask for a hospital chaplain. the care for the patient, because family do not think about
The study of Lind et al. (2012) explored how family of ICU this during the dying process and have to be invited or asked
patients experienced the nurses’ role and relationship with for.
them in the EOL decision making processes. Only a few fam- Several studies recommend that the monitor is turned off
ily members mentioned that nurses participated in family during EOLC in the ICU (Fridh et al., 2007; Rubenfeld, 2004;
meetings. The family felt responsible for obtaining infor- Truog et al., 2008). Families in our study mostly appreciated
mation and understanding their role in the decision-making turning the monitor off, but some wanted to follow the dying
process, and that the nurses could have shown more involve- process on the monitor, as this had been their ‘guide’ during
ment in the process (Lind et al., 2012). In our study, ICU their visits to the patient. Knowing this, the recommenda-tion
nurses always attended family meetings, however, accord-ing for turning off the monitor has to be stated in such a way that
to family, their role was limited. This seems reasonable due turning off the monitor depends on the preferences of family,
to the fact that in the Netherlands the physicians are not of the ICU professional.
responsible for the decision-making process. ICU nurses are Family mentioned their appreciation of private rooms.
present during family meetings to support family if neces- Family described avoiding family rooms if they were occu-
sary, and to make notes so that they can inform the family
pied with other visitors, because they were not feeling
afterwards in the same way with the same information. It is
comfortable showing their emotions with strangers
nearby.
Experiences of family with nursing end-of-life care in the ICU 63

In previous studies family rooms in the ICU have been Conflict of interest: The authors declare that there is
described as too small, overcrowded, and in specific situ- no conflict of interest.
ations difficult to share (Fridh et al., 2007; Lloyd-Williams
et al., 2009; Ranse et al., 2012 ). Families in our study References
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