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ORIGINAL ARTICLE
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
Scientic 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. Twenty-
Qualitative research six family members of deceased critically ill-patients were interviewed within two months after
the patients 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
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, specically 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.
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 ing treatment. Selection criteria for family members were:
ICU 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 inform
The primary aim of this study was to examine the expe-
them about the study between three to six weeks after the
rience(s) of the family with nursing EOLC in ICUs after a
death of the patient. This was not the standard procedure in
decision to end life-sustaining treatment. Secondary aims
all hospitals. In the phone call the nurse asked if the contact
were to describe what the family appreciated most and
person objected to being contacted by the researcher (MN)
what they missed during EOLC in nursing care. The primary
for information about the study. In six cases family refused
research question was What are the experiences of the
further contact, because they felt too emotional (n = 3), or
family with the nursing aspects of End-of-life care in the
were not available (n = 3).
ICU? The secondary research question was What elements
When the family member agreed, the researcher called
of care 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 members choice. All fam-
A phenomenological approach was used, including induc- ilies received written information about the study before
tive thematic analysis. A phenomenological approach aims the interview, completed by the researcher during the inter-
to generate a description of a phenomenon of everyday view, and gave informed consent.
experiences and to achieve an understanding of its essen- Twenty-six family members of twenty deceased adult ICU
tial structure (Holloway and Wheeler, 2002). We studied the patients participated (see Table 3).
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
Selecve coding
1. Communication between ICU nurses, ICU patients and nurses showed to the patients. Nurses cared for the patient
family. 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 the
which elements of care were appreciated most, and which
care provided by the ICU nurses. Therefore, family members
were lacking (needs and wants).
were able to focus on saying goodbye. Turning off the mon-
itor at the bedside was appreciated by twenty-three family
Communication between ICU nurses, ICU patient members, which leads to not being distracted from saying
and family goodbye.
In previous studies family rooms in the ICU have been Conict of interest: The authors declare that there is no
described as too small, overcrowded, and in specic situ- conict of interest.
ations difcult to share (Fridh et al., 2007; Lloyd-Williams
et al., 2009; Ranse et al., 2012). Families in our study appre- References
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