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Exploring Family Experiences of Nursing Aspects of End-Of-Life Care in The ICU: A Qualitative Study
Exploring Family Experiences of Nursing Aspects of End-Of-Life Care in The ICU: A Qualitative Study
Exploring Family Experiences of Nursing Aspects of End-Of-Life Care in The ICU: A Qualitative Study
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journal homepage:www.elsevier.com/iccn
ORIGINAL ARTICLE
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.
• 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.
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
Step Description
Open coding
121 codes
Axialcoding
53 codes
Selec ve coding
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.
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
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