Information sharing: its impact on donor and

nondonor families’ experiences in the hospital

Objective—To illustrate the methods used to convey complicated information Tracy Long, MSc,
regarding the critical injury, and death diagnosed by means of brainstem testing, Magi Sque, PhD,
to the next of kin of potential organ donors.
Design—3-year, prospective, longitudinal study.
Sheila Payne, PhD
University of Southampton,
Participants and Setting—Forty-three family members who chose to donate their Southampton, United Kingdom
deceased relatives’ organs were recruited via 4 transplant coordinating centers, and (TL, MS), University of Sheffield,
3 family members who chose not to donate were recruited via 1 intensive care unit. Sheffield, United Kingdom (SP)
Method—Face-to-face qualitative interviews were carried out with 46 family
members of 43 individuals who died between June and December 2000. Family To purchase electronic or print reprints,
members who agreed to donation were interviewed during and after their next of contact:
kin’s admission to hospital and 3 to 5 months, 13 to 15 months, and 18 to 26 months The InnoVision Group
after bereavement. Three participants who chose not to donate were interviewed 101 Columbia, Aliso Viejo, CA 92656
Phone (800) 809-2273 (ext 532) or
on 1 occasion only. Interviews were audio-recorded, and the transcribed reports
(949) 448-7370 (ext 532)
were analyzed using a comparative, thematic approach focusing on the detection
Fax (949) 362-2049
of similarities and differences between cases. E-mail reprints@aacn.org
Results—Participants who were offered verbal information supported by comple-
mentary methods of communication had (1) a greater understanding of the critical
injury sustained by their next of kin, and (2) fewer questions over time regarding
brainstem testing.
Conclusion—Better methods of communicating complicated information are
needed, as the sheer load of information shared makes demands of next of kin at a
time when they are cognitively and emotionally poorly equipped to respond.
(Progress in Transplantation. 2006;16:144-149)

T he often sudden and unexpected death of a poten-

tial organ donor coupled with the complexities of
synthesizing information related to the injury causing
death, and to death certified by brainstem testing (as
takes place in the United Kingdom), is a complex and
demanding situation for all involved.1 Brainstem test-
ing is carried out to confirm cessation of all brainstem
functions and is required to certify death on neurolog-
ical grounds.2 Patients who have sustained irreversible
damage to the vital centers in the brainstem have per-
manently lost the capacity to think, to be aware of them-
selves and their surroundings, or to experience or
communicate with others.3 In the United Kingdom,
death diagnosed by brainstem testing is defined as
“the irreversible loss of the capacity for consciousness
combined with the irreversible loss of the capacity to
breathe.”4 This medical diagnosis is presented to fam-
ilies who are faced with the reality of a body that is
warm and pink, that has a pulse and a chest that rises
and falls. The incongruity of an externally intact and
live-looking body with the diagnosis of brainstem
death can be difficult for family members to accept, as
brainstem death has been described as a nonstereotyp-
ical death.5 Despite the complexities inherent in both
sudden death and brainstem testing, little research has
been done to investigate the informational needs of
family members who are approached about organ
donation, and whether the method in which that infor-
mation is conveyed affects their experience of the
approach and request for organ donation. Of the
research that has addressed issues related to family
members’ experiences,1,6-14 little is reported on how
family members of potential organ donors perceive
information-sharing methods or what their preferences
are in regard to this.5,9,11,14,15
As part of a longitudinal study exploring factors
influencing family members’ decision-making and
bereavement needs, we gained information related to
relatives’ experiences of information sharing and organ
donation.

144 Progress in Transplantation, Vol 16, No. 2, June 2006

 Impact of information sharing on families’ experiences in the hospital
Aims
In this article, we present data that highlights and
illustrates (1) what methods of information sharing
related to the critical injury were most helpful to rela-
tives of potential organ donors, (2) how death certified
by brainstem testing was communicated, and (3) the
influence of sudden death as an obstacle to informa-
tion sharing. The findings contribute to understanding
how best to support families at this difficult time and
how to enable them to make informed decisions about
organ donation.
Method
Design and Method
Data presented here were collected as part of a 3-
year, longitudinal study exploring the experiences of
bereaved adults with whom organ and tissue donation
had been discussed.5 The study used both quantitative
and qualitative components, but only data from the in-
depth interviews, the qualitative component, are pre-
sented here. Ethical approval for the study was given by
the South East Multi Centre Research Ethics Committee.
Participants
The next of kin of 43 individuals who died
between June and December 2000 were asked to par-
ticipate in qualitative, semistructured, face-to-face,
serial interviews on 3 occasions during a 24-month
period (Table 1). All donating family members were
recruited via 4 transplant coordinating services in the
United Kingdom who sent out recruitment packs to
the next of kin. Families who declined donation were
recruited via 1 intensive care unit (ICU), although
10 ICUs had agreed to participate in recruitment.
Forty-six family members who chose to donate
their deceased relative’s organs were interviewed at 3
to 5 months (time point 1, TP1); of these, 44 were
interviewed at 13 to 15 months (TP2), decreasing to
38 being interviewed at 18 to 26 months (TP3) after
bereavement. Three participants who chose not to
donate their deceased relatives’ organs were inter-
viewed on 1 occasion only at approximately 13 months
after bereavement (Table 1).
Data Collection and Analysis
An interview guide was developed from previous
work16 and available literature. The interview guide
consisted of questions about (1) the attributes of the
deceased, his or her relationship to the participant, and
what role he or she had played in the family, (2) how
the person being interviewed found out about the crit-
ical injury and the events that followed, (3) the partic-
ipant’s view of the care provided to their family member,
themselves, and other relatives, including information
sharing regarding the critical injury, the diagnosis of
death, and the approach about organ donation, (4) the
Progress in Transplantation, Vol 16, No. 2, June 2006
views of the participant and extended family members
regarding organ donation, (5) what needs the partici-
pants identified during their visits and after they had
left the hospital, and (6) their aftercare, follow-up, and
bereavement.
All interviews (except for 1 interview at TP1 and
1 at TP2 done at the participant’s place of work) were
carried out in the participant’s home. Interviews at
TP1 lasted between 2 and 4 hours, with subsequent
interviews at TP2 and TP3 lasting approximately 1.5
hours. The interviews were audio-recorded. Concise,
reflective field notes were written after each interview
to note important points and to detail the context of the
interview, the dynamics of the interaction, and any
analytical or methodological issues for discussion by
the research team. These field notes also served to aid
researcher reflexivity and to guide judgments and
decisions made regarding the research process.
Interview data were transcribed verbatim, and
both text and recording were reviewed several times
until familiarity with the data was established. The
transcribed reports were analyzed by using a compar-
ative, thematic approach focusing on the detection of
similarities and differences between cases. Analysis
was guided by the aims of the research, with themes
being noted in memos, which with other field notes
formed a preliminary analysis of the data. Thus by the
end of each interviewing sequence, a sound knowl-
edge of the salient issues for participants had been
accrued. A qualitative software program (HyperRe-
search 2.2.3, ResearchWare Inc, Randolf, Mass) facil-
itated working with the data set during analysis.
Three of 12 themes generated from analysis that
relate to the aims of this article are expanded within
the following sections and supported by quotes from
the transcripts. In relation to the use of quotes, single
quotation marks are used to highlight ‘in-vivo’17 terms
or words used by participants, whereas double quota-
tion marks indicate specific quotes made by partici-
pants and are evidence used to ground the findings in
the experiences of the participants.
Results
Theme 1: Information Related to the Critical Injury
Participants were given verbally what they viewed
as complicated information about the nature of the
brain injury. Most participants had little previous
knowledge of brain anatomy or function, and there-
fore the dependence on verbal information left most
participants struggling to understand what the injury
meant in relation to their relative. When more visual
means of explaining the nature of the brain injury
were used, families’ understanding of the injury was
greater than the understanding among next of kin who
did not receive such visual explanations. These meth-
ods included the following:
145
Long et al

Table 1 Demographic data for participants and donors

Age of partici-
pant, years Relationship Age of donor, Completed
Participant to donor years Critical injury interviews
71
1 47 Husband 65 Subarachnoid hemorrhage 3
2 39 Partner 48 Subarachnoid hemorrhage 3
3 55 Mother 21 Motor vehicle crash 2
4 36 Wife 59 Brainstem bleeding 3
5 Both 57 Daughter 59 Brainstem bleeding 1
6 53 Mother/Father 23 Motor vehicle crash 3
7 47 Wife 40 Motor vehicle crash 3
8 44 Wife 52 Brain hemorrhage 3
9 51 Mother 23 Motor vehicle crash 3
10 52 Husband 48 Brainstem bleeding 3
11 50 Husband 50 Brain hemorrhage 3
12 31 Wife 57 Brain hemorrhage 3
13 70 Mother 11 Brain hemorrhage 3
14 50 Wife 70 Brain hemorrhage 3
15 31 Husband 45 Brain hemorrhage 3
16 40 Wife 41 Brain hemorrhage 3
17 24 Sister 37 Brain hemorrhage 3
18 52 Son 40 Brain hemorrhage 3
19 45 Wife 53 Brain hemorrhage 3
20 51 Husband 42 Brain hemorrhage 2
21 52/50 Cousin 42 Brain hemorrhage 3
22 74/71 Parents 21 Motor vehicle crash 3
23 52 Parents 43 Brain hemorrhage 3
24 54 Wife 54 Brain hemorrhage 3
25 Husband 48 Brain hemorrhage 1
40
26 Husband 38 Brain hemorrhage 3
71
27 Mother 44 Brain hemorrhage 3
46/48
28 Parents 23 Brain hemorrhage 2
50
29 Husband 52 Brain hemorrhage 3
56
30 Mother 30 Brain hemorrhage 3
50
31 Husband 50 Brain hemorrhage 3
61/64
32 Parents 29 Brain hemorrhage 3
42
33 Mother 17 Motor vehicle crash 3
28
34 Partner/Father 26/2 Motor vehicle crash 2
73
35 Father 34 Brain hemorrhage 3
42
36 Wife 50 Heart attack 2
20
37 Daughter 45 Heart attack 3
52
38 Mother 18 Head injury 3
46
39 Husband 46 Brain hemorrhage 3
52
40 Mother 34 Brain hemorrhage 3
42
41 Son 72 Brain hemorrhage 3
32 Nondonor
42 45/46 Daughter 50 Brain hemorrhage 1
43 Parents 17 Postoperative complications 1

• Being shown computed tomography (CT) scans • The use of an anatomical model of the brain to
and radiographs. “He [doctor] showed us the brain indicate the area of injury, the damage caused, and the
scan . . . which was just amazing, all this black.” consequences of the damage. “He [doctor] brought in

146 Progress in Transplantation, Vol 16, No. 2, June 2006

 Impact of information sharing on families’ experiences in the hospital
a model of the brain with removable bits, which he
took apart and showed us which bit was affected. That
really put us in the picture!”
• Being present when brainstem testing was carried
out. “He [doctor] was absolutely brilliant. He said he
had one set of tests and they had done the scan, which
showed that there wasn’t anything that could be done,
and so after a period of time, I don’t know how long it
was, hours, he was going to do another set of tests, and
he said we could be in there to see them if we wanted to
or not, and I think we were probably the only people
who ever said we wanted to be there, but from our point
of view I wanted to see what they were doing to him and
I wanted to be sure that he was really dead.”
• Being given a leaflet that explained the possible
consequences of different kinds of brain injury and the
type of questions frequently asked by families in this
situation. “The trouble is, at that time, you can’t think
of any [questions to ask].”
In interviews at TP1, participants who had expe-
rienced any of these complementary methods of com-
municating complicated information were asked in
what way this method assisted their understanding.
Their views are reflected in the preceding quotes and
are summarized in Table 2.
The findings for those families who did not
donate were limited because of the small sample size,
but those families were dissatisfied with the amount of
information provided to them during their hospital stay.
None of the complementary methods of communicat-
ing the complicated information regarding the nature
of the brain injury sustained by their relative had been
offered to them, nor had they been offered easy access
to medical staff who could have provided explana-
tions. This failure resulted in 1 family accessing med-
ical textbooks to gain the information they felt they
needed. These participants also felt that they had not
been given sufficient opportunity to ask questions.
Theme 2: Communication About Brainstem Death
Four participants were asked if they wanted to be
present when brainstem testing was carried out. All
other participants were given limited information about
brainstem testing (see shaded box), and none had a
clear understanding of what would happen during tests.
During interviews at all time points, participants
raised questions related to brainstem testing, questions
A father explains how health professionals introduced the
procedure of brainstem testing to him:
“and she [transplant coordinator] went through the proce-
dure that the consultant and the doc, the surgeon have to
do this stem test and then they do it again, an hour later.
And if there is nothing, then he is declared stem dead,
which I presume, I mean, I never got up to the point
where I could, basically he’s declared dead I presume.”
Progress in Transplantation, Vol 16, No. 2, June 2006
Table 2 Methods used to communicate complicated infor-
mation regarding the critical brain injury
How method was
The method perceived to help
Talking Responsive
Seeing computed tomography Confirmatory
scans
Seeing radiographs Illustrative
Use of anatomical models Explanatory
Witnessing brainstem testing Confirmatory
Reading and sharing information Informative and stimu-
leaflets lating discussion
about how brain injury leads to the ‘loss of personal-
ity,’ which was often cited as being the result of the
brain injury, and questions about what the tests were
designed to show. Importantly, most of the partici-
pants in this study made decisions about organ dona-
tion without gaining an understanding of death certified
by brainstem testing. This pattern appeared to be due,
in part, to their motivation to have the wishes of the
deceased fulfilled (the deceased had indicated by
donor card, driver’s license, passport, or discussion
that they wished their organs to be donated). This
emotional need, to have the wishes of their family mem-
ber met, appeared to override their own informational
needs at the time of approach and request for organ
donation, but left them with questions during their
subsequent bereavement. A further consideration in
relation to brainstem testing is the terminology that is
used by health professionals. ‘Being kept alive on the
ventilator,’ ‘life support,’ and the term ‘brainstem death’
all suggest that death certified by brainstem testing is
inclusive of the brain and exclusive of the body. This
terminology can support the view that the family
member could recover with intensive rehabilitation.
In view of the findings from participants who
wanted to observe brainstem testing, a question was
added to the interview schedule for TP2, which asked
participants whether they would have wanted to watch
brainstem testing being carried out. All participants
felt that they would have liked to have been asked if
they wanted to watch the tests or if a member of their
family could watch on their behalf. Most participants
were unsure as to whether they would or would not
have viewed brainstem tests being carried out. Five
participants said they would have attended brainstem
testing if they had been offered this opportunity because
they were seeking confirmation of death.
A suggestion by 2 participants was that they
thought that a video or DVD of the testing process,
which they could watch with other family members,
may have helped discredit issues related to coma that
were raised by extended family members: “Well I
heard you can wake up after 2 years in a coma.”
147
Long et al
Theme 3: Internal Dialogue and
Information Synthesis
The emotional turmoil that participants experi-
enced at the suddenness of the collapse of their family
member had an impact on information processing and
accessing that information at a later time. Families
needed time to absorb the complexity of the informa-
tion that was given to them about the critical injury and
death. Time was an issue in some cases, as the interval
between admission to the emergency department and
diagnosis of death was as short as 3 to 6 hours.
An obstacle to information processing was the
emotional mindset of participants and the amount of
time they spent in a form of ‘internal dialogue’ (see
shaded box). This internal dialogue comprised ‘recall-
ing’ the deceased and their life spent together, the
minute detail of the last conversation held with their
family member, ‘hoping’ for survival, and ‘bargain-
ing with God.’ These ruminations acted as ‘pull factors,’
drawing the family member away from the informa-
tional flow around them. As the time in the hospital
exended, the internal dialogue and ruminations changed
and were influenced by ‘push factors’ such as thoughts
of brain damage and death, which focused family
members on the informational flow available to them
and triggered some to become extra vigilant of moni-
toring equipment and to seek ‘repeated reassurances’
from medical and nursing staff.
Dissonance was clearly articulated by partic-
ipants as they learned the extent of the brain damage
and recalled their family member’s expressed view of
not wanting to survive with brain damage. Participants
hoped for what were increasingly mutually exclusive
outcomes: for their family member to live, but not be
profoundly brain damaged. This internal conflict was
happening at a time when participants were attending
to (or attempting to attend to) the information being
offered to them about the nature of the brain injury,
the carrying out of brainstem tests, and the diagnosis
of death. Sudden death not only robbed participants of
a significant relationship, but also robbed them of
many of their usual coping mechanisms, imposing a
sequence of events that left participants feeling dis-
possessed of physical and psychological equilibrium.
Evidence in interviews at TP1 indicates that par-
ticipants who were with their family member at the
time of the critical injury were sensitized to the possi-
bility of death as they reported less ‘hope’ of their
family member’s survival and had a greater expecta-
tion of being told ‘bad news.’ Those participants who
were not with their family members at the time of the
critical injury expressed more ‘hope’ of survival and
took longer to recognize the inevitability of death.
Being present at the critical injury may be an indica-
tor of how quickly information related to the progno-
sis can be presented to a family member.
148
A mother speaking about her teenage son:
“And I was just thinking positively you’re going to wake up in
a minute and be normal so I wasn’t really giving those
things [brainstem testing] any thought. Certainly not about
him dying, no I didn’t really suppose, I wasn’t accepting it.
As I say I was going through the formalities of everything,
playing along with it but not really…”
Discussion
The results from each time point illustrate families’
needs in relation to the content and manner in which
information could be best delivered, as well as the obsta-
cles to processing this information by the effects of sud-
den injury and the, albeit necessarily so, complicated
information related to brainstem testing and death.
The need for accurate, understandable, and con-
sistent information regarding the course of illness in
relation to organ donation has been reported8,9,11,13,15 and
is the most commonly identified need for family
members in the ICU.18-20 Fulfilling the informational
needs of family members reduces anxiety, especially
if more than 1 channel of communication is used to
transmit the desired information,20 and yet the need for
information has been reported as one of the most
poorly met needs within the ICU.21 A number of fac-
tors appear to be relevant to this poorly met need: the
methods used to transmit information, the content of
the information, the state of mind of the person receiv-
ing the information, and the nature of the critical injury
and diagnosis of death. In relation to the means by
which information regarding organ donation is shared,
Sque et al15 have indicated how sudden death and
the discussions about organ donation make specific
demands of the next of kin at a time when they are emo-
tionally and cognitively poorly equipped to respond.
Dissatisfaction with information regarding brain-
stem death received during the approach and request
for organ donation has been reported.5,8,9,11 In a survey
exploring the care offered to families and the ade-
quacy of the information provided to them during the
approach and request for organ donation, Pearson et
al9 found that 36% of the 69 next of kin in their sam-
ple felt confused because of insufficient information
and the use of overtly complex medical terminology.
Participants said that they would have liked methods
such as radiographs, diagrams, models, or pictures used
to explain the patient’s brain injury, and 55% would
have liked these methods used specifically in relation
to brain death because 20% felt that this topic was
poorly explained. Pearson et al found that next of kin
wished to have information shared with them, a result
supported by our findings, but uniquely, we suggest
that the use of visual aids in the discussion surround-
ing the critical injury and the diagnosis of death by
brainstem testing could (1) increase understanding of
the nature of the brain injury, (2) increase feelings of
Progress in Transplantation, Vol 16, No. 2, June 2006
 Impact of information sharing on families’ experiences in the hospital
confidence in any decision that is made in response to
brainstem testing, and (3) reduce the amount of fanta-
sizing after the death about the nature of coma, as the
understanding of those participants who had experi-
enced complementary methods of information sharing
was more detailed than the understanding among those
who had not received information supported by visual
aids. Also those participants who had received infor-
mation supported by visual aids (1) had fewer questions
about the nature of the brain injury during interviews
carried out at all time points, (2) stated that they felt
involved in what was happening, and (3) expressed
feelings of being fully informed.
When consideration is given to the time and train-
ing it takes for health professionals to feel confident in
their understanding of death certified by brainstem test-
ing, it seems unreasonable to expect family members,
even those with some medical background, to under-
stand and accept this diagnosis in what is often a very
short time span from admission to brainstem assess-
ment (in the past it was usual to wait 24 hours before
beginning brainstem assessment, R. Hodge, personal
communication, 2005). The fact that most participants
were still unclear about what brainstem tests were, and
how these tests related to the death of their family
member, at 2 years after bereavement, is testimony to
the need for a change of practice in this area.
Conclusion
The role of the type and method of information
sharing in the hospital is only one of the factors that
affects the experiences of family members who are
approached regarding organ donation, but that factor
may be far more important than previously realized.
Relatives of potential organ donors are the most criti-
cal link in maintaining organ availability, because
they must express their lack of objection before organ
retrieval can take place. The choice that family mem-
bers make regarding organ donation may be influenced
by the quality of, and the methods used to convey,
information regarding the nature of the critical injury,
and death certified by brainstem testing, due to the
sheer amount of information that is passed on to them.
If better information-sharing techniques (like those out-
lined in this article) are used, families can be helped to
make informed decisions about organ donation with
which they are comfortable and remain confident
in. Finally, further ethnographic studies are needed
that facilitate the prospective exploration of the infor-
mation culture of ICUs and emergency departments.22
Studies of this nature offer the opportunity to observe
information sharing and the interaction between
health professionals and families and to further expli-
cate the role that information sharing regarding the
critical injury and death of a potential organ donor
plays in decision making and grief.
Progress in Transplantation, Vol 16, No. 2, June 2006
Acknowledgment
The research was commissioned by the British Organ
Donor Society and funded by a grant from the UK Commu-
nity Fund to the chief investigator, Magi Sque.
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