This article was downloaded by: [Arizona State University]
On: 21 December 2012, At: 14:47
Publisher: Routledge
Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered
office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Journal of Social Work in End-Of-Life &
Palliative Care
Publication details, including instructions for authors and
subscription information:
http://www.tandfonline.com/loi/wswe20

“I'll Never Forget Those Cold Words as
Long as I Live”: Parent Perceptions of
Death Notification for Stillbirth
a

b

Suzanne Pullen , Mindi Ann Golden & Joanne Cacciatore

c

a

Hugh Downs School of Human Communication, Arizona State
University, Tempe, Arizona, USA
b

Communication Studies, San Francisco State University, San
Francisco, California, USA
c

School of Social Work, Arizona State University, Phoenix, Arizona,
USA
Version of record first published: 29 Nov 2012.

To cite this article: Suzanne Pullen , Mindi Ann Golden & Joanne Cacciatore (2012): “I'll Never Forget
Those Cold Words as Long as I Live”: Parent Perceptions of Death Notification for Stillbirth, Journal of
Social Work in End-Of-Life & Palliative Care, 8:4, 339-355
To link to this article: http://dx.doi.org/10.1080/15524256.2012.732022

PLEASE SCROLL DOWN FOR ARTICLE
Full terms and conditions of use: http://www.tandfonline.com/page/terms-and-conditions
This article may be used for research, teaching, and private study purposes. Any
substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,
systematic supply, or distribution in any form to anyone is expressly forbidden.
The publisher does not give any warranty express or implied or make any representation
that the contents will be complete or accurate or up to date. The accuracy of any
instructions, formulae, and drug doses should be independently verified with primary
sources. The publisher shall not be liable for any loss, actions, claims, proceedings,
demand, or costs or damages whatsoever or howsoever caused arising directly or
indirectly in connection with or arising out of the use of this material.

Journal of Social Work in End-of-Life & Palliative Care, 8:339–355, 2012
Copyright © Taylor & Francis Group, LLC
ISSN: 1552-4256 print/1552-4264 online
DOI: 10.1080/15524256.2012.732022

“I’ll Never Forget Those Cold Words as
Long as I Live”: Parent Perceptions of
Death Notification for Stillbirth

Downloaded by [Arizona State University] at 14:47 21 December 2012

SUZANNE PULLEN
Hugh Downs School of Human Communication, Arizona State University,
Tempe, Arizona, USA

MINDI ANN GOLDEN
Communication Studies, San Francisco State University,
San Francisco, California, USA

JOANNE CACCIATORE
School of Social Work, Arizona State University, Phoenix, Arizona, USA

This qualitative study analyzed stillbirth notification messages
recalled by parents who strongly agreed (n = 47) and strongly disagreed (n = 43) that the way news about the death of their infant
was delivered negatively impacted their grieving process. Three
message elements formed a core stillbirth notification experience
(delay of news delivery; expression of sympathy; communication of
death), and three additional message elements occurred in both
data sets (communication regarding options; expression of uncertainty; exit of health care provider); however, the messages differed
in form and frequency between the two groups. Three message elements reflected opposing experiences for the two groups (support of
parent emotion; continuity of care; and information provision).
Recommendations for stillbirth notification that emphasize
acknowledging parent perceptions, clear language and information, empathetic communication, and continuity of care are given.
KEYWORDS bad news delivery, bereavement, death notification,
grief, perinatal end-of-life care, physician/patient communication,
stillbirth
Received 23 February 2012; accepted 12 July 2012.
Address correspondence to Suzanne Pullen, MA, Doctoral Student, Hugh Downs School
of Human Communication, Arizona State University, P.O. Box 871205, Tempe, AZ 85287, USA.
E-mail: suzanne.p.pullen@gmail.com
339

Downloaded by [Arizona State University] at 14:47 21 December 2012

340

S. Pullen et al.

Walking into her doctor’s office for a prenatal visit, a healthy mother-to-be,
having experienced no complications in her pregnancy does not expect to
hear the words, “Your baby’s heart has stopped beating.” In the United States,
words like these convey the devastating news of stillbirth more than 25,000
times every year (MacDorman & Kirmeyer, 2009). Stillbirth is an emotionally
and physiologically painful and traumatic event that occurs suddenly and
often without warning (Cacciatore & Bushfield, 2007; Gold, 2007). A deep
sense of attachment often develops between a mother and unborn child
during pregnancy; thus, she is likely to experience profound psychological
distress, including high risk of posttraumatic stress disorder (PTSD) upon the
baby’s death (Cacciatore & Bushfield, 2007; Trulsson & Radestad, 2004).
Mothers’ grief experiences following the death of a baby to stillbirth are further complicated by the biological fact of death occurring within the body;
cultural discomfort with death, particularly a child’s death; and feelings of
anxiety, failure, and guilt (Cacciatore, 2010; Condon, 1986; Reddy, 2007).
Because many health care providers (HCPs) are often uncomfortable
when a patient dies, particularly when the patient is a baby or a child, support
for parents experiencing stillbirth may be compromised (Gold, 2007). Obstetric
nurses and physicians receive a dearth of death education, and generally feel
unprepared to face the profound losses of a baby’s death (Cacciatore &
Bushfield, 2007; Chan, Chan, & Day, 2003; Säflund, Sjögren, & Wredling, 2002).
However, parents do report that HCPs’ behavior and their handling of
stillbirth is important to their experiences of loss (Gold, 2007; Säflund,
Sjörgen, & Wredling, 2004). When bereaved parents perceive HCPs as dishonest and not forthcoming, they experience increased anxiety and mistrust
toward their providers (Schott, Henley, & Kohner, 2007). Parents also report
being upset by care provider behaviors perceived as avoidant, insensitive,
and lacking in emotional support. Conversely, when medical professionals
are perceived as caring and honest, patients report feelings of appreciation
despite their tragic circumstances (Gold, 2007).
Physicians have identified conversations with parents experiencing the
death of a baby as more serious than conversations with patients about any
other condition (Säflund, 2003), and a few studies have examined HCP opinions of, treatment plans for, or conversations with parents experiencing stillbirth (Chan et al., 2003; Kirkley-Best, Kellner, & Ladue, 1984–1985; Robson,
Thompson, & Ellwood, 2006; Säflund et al., 2002). However, no studies to
date have examined perceptions of death notification in the context of stillbirth. In addition, despite research showing the value of empathy in provider-patient communication and efforts to improve communication during
medical training (Ahrens & Hart, 1997; Benenson & Pollack, 2003; Levetown,
2008), there has been little change in patient perceptions of doctors as less
supportive than nurses (Gold, 2007). It is critical that health care providers
develop a clearer understanding of how death notification can impact a
patient’s grieving process, both positively and negatively.

Stillbirth Notification

341

Downloaded by [Arizona State University] at 14:47 21 December 2012

DEATH NOTIFICATION
HCPs describe death notification (i.e., telling persons that their loved one
has died) as emotional and indicate that delivering news of a child’s death is
especially unsettling (Clark & LaBeff, 1982). Ahrens and Hart (1997) found
that HCPs believed the experience of communicating the news of a child’s
death was the most difficult experience in emergency medicine, more difficult than communicating the death of an adult to his or her family. Some
HCPs find the death of a baby or child so distressing that they shy away from
empathizing with the parent(s) (Leon, 1992). HCPs struggle with how much
emotion to show when delivering news of the death, how to deliver the
news (e.g., direct telling may be perceived as cold), and how to respond to
the family member’s reactions (Clark & LaBeff, 1982).
HCPs also report feeling unprepared to engage in death notification
due to lack of education or training (Ahrens & Hart, 1997; Benenson &
Pollack, 2003; Hobgood, Tamayo-Sarver, Hollar, & Sawning, 2009; Leash,
1996; Smith-Cumberland & Feldman, 2006; Stewart, Lord, & Mercer, 2000).
However, when HCPs receive death notification education, the training
appears to improve confidence in their ability to deliver news of death
(Nordström, 2011; Ponce et al., 2010; Smith-Cumberland, 2006; SmithCumberland & Feldman, 2006). However, some assert that death education
focused on psychosocial care can be problematic if it encourages adherence
to a fixed protocol or sequence of steps that do not account for individual
patient responses, nuances, and needs (Cacciatore & Flint, 2012; Villagran,
Goldsmith, Wittenberg-Lyles, & Baldwin, 2010).
Little extant research has explored bereaved parents’ perspectives about
what is helpful during death notification (Gyulay, 1989; Janzen, Cadell, &
Westhues, 2003–2004). However, interactions with HCPs do influence
bereaved parents. For example, negative interactions exacerbate trauma
symptomology while compassionate caring promotes positive outcomes for
grieving parents ( Janzen et al., 2003–2004). Also, parents whose children die
suddenly report wanting their doctors to show compassion, give information, explain procedures, and provide support referrals ( Janzen et al., 2003–
2004). Parents prefer that HCPs demonstrate a caring attitude and allow them
to express their emotions (Gold, 2007; Levetown, 2008). Getting inadequate
or poorly delivered information (Levetown, 2008; Schott et al., 2007), receiving conflicting opinions from multiple HCPs (Levetown, 2008), experiencing
delay of death notification (Leash, 1996), and hearing jargon-laden or indirect terminology (Prasad, 2010) can negatively impact the way bereaved
parents perceive HCP communication.
The literature suggests that interactions with HCPs have a profound
impact on parents who experience a perinatal death. Even years after being
told that their baby is stillborn, parents are clear that some communication
from health care providers helped them and some communication still leaves

342

S. Pullen et al.

Downloaded by [Arizona State University] at 14:47 21 December 2012

them feeling angry and upset (Fallowfield & Jenkins, 2004; Gold 2007). How
the death of a baby to stillbirth is communicated may impact satisfaction
with care provision, a parent’s sense of social support, and the severity of
long-term psychological distress (Trulsson & Radestad, 2004). Hence, given
the dearth of literature published on this subject, the purpose of this study
was to describe how notification following the death of a baby to stillbirth is
recalled by patients and how that communication impacted their grieving
process. Specifically, the research question guiding this study was: What
death notification message elements were recalled by parents with strong
feelings about how news of their baby’s death to stillbirth was delivered?

METHOD
A retrospective study, using an IRB-approved questionnaire regarding parent
perceptions of perinatal loss diagnosis delivery was administered via an
online survey service (SurveyMonkey). Data analyzed in this study are part
of a larger project regarding communication in the context of stillbirth. The
questionnaire contained open- and closed-ended questions. The first author,
having experienced the death of a baby to stillbirth, is active in various support communities for bereaved parents; thus, participants were recruited and
contacted through participation and membership in organizations that offer
services to bereaved parents of perinatal loss.

Sample
Anyone who had a perinatal death was allowed to complete the survey, but
this study focused only on data collected from participants who reported
their diagnosis was stillbirth. This was defined as the intrauterine death of a
baby 20 weeks gestation or greater (n = 624). Females accounted for 97.4%
(n = 599) of respondents, with 97.9% (n = 597) self-identified as heterosexual, and 83.2% (n = 510) self-identified as married.

Measures and Data Analysis
For the purpose of this study, all surveys of participants who had experienced stillbirth wherein respondents strongly agreed that they recalled the
exact words a health care provider used to deliver death notifications were
selected (n = 222). These data were then sorted on the basis of either strong
agreement or strong disagreement with the survey item, “The way I found
out about the diagnosis negatively impacted my grieving process.” Fifty-one
respondents strongly agreed and 47 strongly disagreed.
From the 98 surveys, those in which the participant also responded to
the open-ended item “Please write down what the care provider said and/or

Downloaded by [Arizona State University] at 14:47 21 December 2012

Stillbirth Notification

343

did when s/he delivered the news of the diagnosis” were selected (50 of 51
and 45 of 47 respondents, respectively). Upon review, five surveys were
eliminated because how the parent was told the baby died was not included
or the description indicated that a live birth had occurred. Hence, messages
reported by 47 parents who strongly agreed and 43 parents who strongly
disagreed that the death notification negatively impacted their grieving process were analyzed.
Data were analyzed using a constant comparison method associated
with grounded theory (Glaser & Strauss, 1968). The first step was open
coding. This involved the first and second authors independently reading
each death notification description, identifying distinct message elements,
and then discussing what they had identified in order to achieve negotiated
consensus. As in Salander’s (2002) research, message descriptions differed in
that some participants only provided the words they recalled a HCP using to
deliver death notification (e.g., “I’m sorry, both your babies are dead”), while
others described a sequence of events constituting the larger process of
news delivery (e.g., “The nurse then told me she was going to get another
Doppler to find the heart beat maybe this one is broke”). In all cases, what
Strauss and Corbin (1990) term discreet incidents or ideas were identified
and labeled. For example, “I’m sorry, both your babies are dead” contains
two discreet ideas—an expression of sympathy and communication of death.
The second, interrelated step in data analysis was axial coding, which
focuses on connections between categories (Strauss & Corbin, 1990).
Specifically, subcategories were linked to categories, with particular regard
to communication strategies and consequences (Strauss & Corbin, 1990). For
example, that communication of death occurred was not surprising, but several distinct ways of communicating (i.e., subcategories) were identified. The
authors worked through the data line-by-line, examining discreet message
elements and asking, “How are these similar and how are these different?”
The result was a detailed description of message elements reported by parents who had strong feelings about whether or not the way death notification was delivered negatively impacted their grieving process. For clarity in
reporting findings, the two groups are referred to as parents perceiving HCP
communication positively and negatively.

FINDINGS
A total of 14 message elements were identified in parent descriptions of
recalled diagnosis of stillbirth. Six elements occurred in both data sets (i.e.,
parents perceiving HCP communication positively or negatively), with three
of the six elements forming a core death notification experience. The two
groups differed in the form and frequency of these message elements. Three
additional message elements in each data set formed bipolar opposites in

344

S. Pullen et al.

relation to one another, while five message elements were unique to the
group perceiving HCP communication negatively.

A Core Experience in Death Notification for Stillbirth

Downloaded by [Arizona State University] at 14:47 21 December 2012

Parents in both groups commonly described three message elements at the
heart of a diagnosis of the baby’s death: delay of news delivery, expression
of sympathy, and communication of death; however, there were experiential
distinctions between the groups (see Appendix 1 for an overview of key differences between the two groups).
DELAY OF NEWS DELIVERY
Following an initial indication of possible death such as a heartbeat not
being detected during an ultrasound, a HCP may take additional measures to
confirm the diagnosis, thus the process of diagnosing the baby’s death is
delayed. Both groups reported delay of news delivery due to: (a) multiple
diagnostic exams being conducted or additional HCPs being consulted in
one location; (b) parent relocation to another exam room or health care
facility; and (c) topic avoidance by HCPs. However, topic avoidance distinguished the two groups, with three times as many parents perceiving HCP
communication negatively reporting it compared to parents perceiving HCP
communication positively.
EXPRESSION OF SYMPATHY
Expressions of sympathy, particularly simple statements such as “I’m sorry,”
were reported by parents in both groups, with some indicating more than
one expression of sympathy by HCPs; however, compared to the negative
group, parents perceiving HCP communication positively reported far more
simple statements with intensifiers, such as “I’m so sorry,” and nonverbal
expressions of sympathy, such as personal touch and the HCP expressing
emotion. Nonverbal expressions of sympathy were rare in the negative group.
COMMUNICATION OF DEATH
Communication of death was reported in both groups, generally following a
delay in news delivery and, if present, an expression of sympathy.
Communication of death varied in that it could be: (a) direct—the parent
was told that the baby had died; (b) indirect—HCPs communicated with
each other regarding the baby’s lack of organ activity within hearing of the
parent; (c) implied—a parent must infer a diagnosis from a HCP’s comment;
and/or (d) nonverbal—a parent sees lack of fetal heartbeat on the monitor
or the look on a HCP/family member’s face and knows the baby is dead.

Stillbirth Notification

345

Downloaded by [Arizona State University] at 14:47 21 December 2012

Direct death notification was commonly reported in both groups and
could be further described as: (a) blunt, using statements like “Your baby is
dead”; (b) phrased in the negative, saying things like “There’s no heartbeat”;
or (c) using idiomatic phrases like “Your baby is gone.” Indirect communication was rare in both groups. Parents who perceived HCP communication
negatively more frequently reported implied statements of death such as,
“Sometimes these things just happen,” and parents who perceived HCP communication positively reported more nonverbal communication of death; for
example, a HCP asking the parent to look at the monitor as nonverbal reinforcement of verbal communication of death.

Shared Experiences in Death Notification
In addition to the core experience, three additional themes occurred in both
groups: communication regarding options, expression of uncertainty, and
noted exit of the HCP.
COMMUNICATION REGARDING OPTIONS
Parents perceiving HCP communication positively report being offered delivery options, such as one parent’s report that the HCP “nicely explained the
options to me and we opted for an epidural and I gave birth vaginally,” or
being given a medical explanation for why options were limited, such as one
parent’s explanation that the HCP “told me having a C-section would be illadvised since they knew the baby was already gone and having one when
it wasn’t necessary would only set a precedent for future pregnancies … .” In
contrast, parents perceiving HCP communication negatively emphasized
being told what the next step would be without explanation, such as one
parent’s statement that she was “ … told [I] will be given pain relief but have
to deliver normally.”
EXPRESSED UNCERTAINTY BY HCP
Parents from both groups reported that HCPs expressed uncertainty during
their diagnosis but the quality of the messages differed. Parents who perceived HCP communication negatively reported that HCPs: (a) expressed
uncertainty regarding the physical condition of the baby, with one HCP
making a graphic statement regarding the baby’s head possibly detaching in
utero; (b) expressed uncertainty regarding examination or treatment, such as
one HCP being unsure how to operate the ultrasound machine; or (c) paired
uncertainty with hopelessness, such as one HCP saying, “There is a 90%
chance your baby is no longer alive.” Parents perceiving HCP communication positively reported uncertainty being paired with hopefulness, such as
a HCP saying, “The baby might just be hiding from the monitor”; or reported

346

S. Pullen et al.

that the HCP expressed uncertainty about how to communicate death to the
patient, such as one HCP’s statement that, “I don’t know how to tell you this.”
Parents in both groups also reported that HCPs expressed uncertainty about
why the baby died. However, parents who perceived HCP communication
positively reported that the HCP also stated a possible cause or a desire to
find a cause of death.

Downloaded by [Arizona State University] at 14:47 21 December 2012

NOTED EXIT OF HCP
Parents from both groups noted that a HCP “left the room” following death
notification and did not report the HCP’s return, but the character of the exit
again differed between the groups. Parents who perceived HCP communication negatively noted that the HCP exited immediately following communication of death. According to one parent, “He told me that sometimes these
things just happen then left the room.” Other parents who perceived HCP
communication positively specified that the HCP who gave the death notification stayed with them for a while before leaving.

Opposing Experiences in Death Notification
Three message elements in each data set represented opposing experiences
for parents. Polar differences in the two data sets were: (a) suppression
versus support of patient emotion; (b) lack of versus presence of information
provision; and (c) lack of versus presence of continuity of care.
SUPPRESSION OF PATIENT EMOTION VERSUS SUPPORT OF PATIENT EMOTION
Parents who perceived death notification more negatively recalled that
attempts were made to suppress their emotions. One parent said the HCP
told her that someone would call her husband only “after you get control of
yourself.” Parents with negative perceptions also said that HCPs prevented
others from seeing their emotions. For example, one parent noted that she
was told to exit through a side door. Although HCPs may have intended to
protect the mother, parents in the latter group perceived HCPs as suppressing the public expression of their emotions.
In contrast to emotion suppression, parents who perceived HCP communication positively described support for their emotions. HCP communication
took four forms: (a) time/space for feelings, either with the HCP staying with
the parent during her emotional reaction or the HCP saying something like “he
would let us have a few minutes alone to let this news sink in and that he’d
come back and talk about ‘getting our little one here’”; (b) enlisting supportive
others, such as calling a family member to be with the parent; (c) validation of
feelings, such as acknowledging that the death of a baby is emotionally devastating; and (d) relocation, often meaning taking the patient someplace more

Stillbirth Notification

347

private. Relocation was framed as being given the opportunity to grieve and
supporting emotion, not a means of hiding the patient, as with emotional
suppression.

Downloaded by [Arizona State University] at 14:47 21 December 2012

INFORMATION SHARING VERSUS INFORMATION WITHHOLDING
Parents who perceived HCP communication negatively indicated they did
not receive information regarding the baby’s death or the information they
needed to make important decisions. One parent, for example, noted that a
HCP told her that her baby would be stillborn but she did not know what
that meant for her or the baby. She did not receive any information from the
doctor or hospital about what to expect, about her choices for birth, or about
social support in the aftermath of her loss. Another parent indicated that her
birth choices were not explained, even though the HCP asked her what she
wanted to do.
In contrast, parents who perceived HCP communication positively
reported information provision that took three forms: (a) explanation, such
as, “He answered any questions we had”; (b) information about what to
expect or what the next steps were, such as, “The delivery nurse was great
at explaining everything that I should expect”; and (c) cause of death, such
as, “She explained through the ultrasound, it looked like the baby knotted
his cord by turning breech.”
LACK OF CONTINUITY OF CARE VERSUS PRESENCE OF CONTINUITY OF CARE
Parents perceiving HCP communication negatively reported lack of continuity of care, such as not seeing the HCP who delivered death notification
again. In other words, the HCP may have come into the examination room,
told the parent that the baby died, exited immediately, and avoided future
contact with the parent. However, parents who perceived HCP communication positively reported continuity in their care during the death notification
process. According to one parent, “The midwife remained with me at all
times.” Parents also reported continuity of care into the future. For example,
one parent explained, “He gave us his personal pager and told us to … call
him, no matter what time of night.”

Unique Message Elements
Parents who perceived negative HCP communication reported five unique
message elements. Specifically, parents reported: (a) isolation, such as being
left alone for a long period of time or being put in an isolated location; (b)
blame, with the HCP suggesting the parent caused the baby’s death; (c) contradiction of experience, such as being told that what the parent felt was
impossible; and (d) the death of the baby to stillbirth being cast as beneficial,

348

S. Pullen et al.

such as one HCP saying he would include the case in a professional publication. The fifth unique message element, reassurance, was reported by one
respondent who said an ultrasound technician’s reassurance when she began
to blame herself for the baby’s death contrasted with a physician’s “cold”
communication. In this case, the contrasting level of empathy between the
technician and doctor contributed to negative perceptions.

Downloaded by [Arizona State University] at 14:47 21 December 2012

DISCUSSION
“We spend the better part of a decade learning to wield the unwieldy words of
medicine, but the final lesson is knowing when to put them away.” (Prasad,
2010, p. 885)
Death notification appears to take many forms after the death of a baby
to stillbirth. Even when HCPs utilize similar message elements, such as communication of death, the specific character of the message can differ, such as
being told directly or having the death be implied. At the heart of the differences described by the two groups in this study is verbal and nonverbal
communication that may or may not convey care, empathy, and understanding (Mager & Andrykowski, 2002; Salander, 2002; Strauss, Sharp, Lorch, &
Kachalia, 1995; Yardley, Davis, & Sheldon, 2001). The death of a baby to
stillbirth may be the worst news a parent ever receives (Pullen & Nalos,
2009), but how HCPs communicate about the stillbirth can either foster a
sense of support for the parent or exacerbate a sense of fragility (Cacciatore
& Bushfield, 2007; Trulsson & Radestad, 2004). A HCP’s ability and willingness to engage a grieving parent with humility and mindfulness (Cacciatore,
2010; Cacciatore & Flint, 2012; Watson & Gallois, 1998) rather than with
detached objectivity appears key to positive perceptions.
A core experience is perceived by both groups in this study, wherein a
delay in the diagnosis is followed by an expression of sympathy and communication of death. However, parents who perceived HCP communication
negatively were more likely to report death notification delays due to provider topic avoidance. HCPs may operate under a strict protocol regarding
who can explicitly confirm the baby’s death to a parent (Statham & Dimavicius,
1992), but silence by HCPs when evidence for death is explicit given multiple exams, additional HCPs being consulted, and the inability to find a heartbeat may prolong distress and confusion (Trulsson & Radestad, 2004).
Many parents reporting negative perceptions did not receive a message
of sympathy from their HCP and others received only a simple statement of
sympathy. Only two of the parents in the negative group reported any nonverbal support, and that nonverbal support was expressed by only one of
the multiple HCPs they saw. “I’m sorry,” particularly when not accompanied
by mindful provider presence, may not be enough to address what more
than one parent described as “the worst day of my life.” Verbal intensifiers

Downloaded by [Arizona State University] at 14:47 21 December 2012

Stillbirth Notification

349

augment simple statements, and nonverbal expressions demonstrate a level
of caring commensurate with the magnitude of the parent’s grief. Nonverbal
signs of support from HCPs—such as crying, hugging, or holding hands—
are highly memorable for parents experiencing stillbirth (Peppers & Knapp,
1980). Parent perceptions in this context appear to mirror health care providers’ general reports regarding effective and ineffective bad news delivery
experiences, wherein nonverbal behaviors such as eye contact and touch are
only described in effective incidents, and expressions of empathy distinguish
effective and ineffective incidents (Dickson, Hargie, Brunger, & Stapleton,
2002). However, HCPs also acknowledge that touch is atypical in the delivery of “bad news” (Ptacek & Ellison, 2000).
Although death notification was central in this study, the process took
various forms, with implicit statements distinguishing the positive and negative groups. Implied statements of death create potential confusion in that
the words spoken, such as, “We missed him by a day,” do not clearly relate
to death or vital organ functions. HCPs may also minimize the significance
of the baby’s death for the parent with platitudes such as, “You have another
child at home.” These types of messages occur more frequently in reports
provided by parents linking HCP communication to negative impacts on
grieving.
The baby’s death was most often communicated verbally to parents, but
the frequency with which communication of death was paired with at least
one expression of sympathy varied widely between the two groups. Only 18
of 47 parents negatively perceiving HCP communication reported any
expression of sympathy in conjunction with communication of death whereas
33 of 43 parents positively perceiving HCP communication reported an
expression of sympathy with communication of death. Absence of expressions of sympathy, especially nonverbal expressions, may be highly problematic. Some parents in the negative group characterized HCP behavior as
“cold” and “insensitive,” while those in the positive group characterized their
HCP as “sensitive” and “compassionate.” The absence of any expression of
sympathy may contribute to a negative perception by the parent. For example, one parent reported the following reaction to a statement made by a
doctor called in for a second opinion: “The doctor said, ‘I concur the demise
of the fetus.’ I will never forget those cold words as long as I live.” The mere
reference to a much-wanted and loved baby as “the fetus” indeed feels “cold”
and “detached” and fails to acknowledge the depth of the relationship
between a mother and her newborn.
Parents report a desire to express their emotions (as opposed to having
emotions suppressed by HCPs), continuity in terms of the HCPs treating
them, having their questions answered, and information regarding next steps
and cause of their baby’s death. These preferences are consistent with past
findings regarding effective perinatal end-of-life care from both physician
and patient perspectives (Cacciatore & Bushfield, 2007; Dickson et al., 2002;

Downloaded by [Arizona State University] at 14:47 21 December 2012

350

S. Pullen et al.

Ptacek & Ellison, 2000; Salander, 2002; Trulsson & Radestad, 2004; Widger &
Picot, 2008).
Finally, messages such as isolation, blame, contradiction of experience,
and expressed benefit of the baby’s death are solely reported as negative
HCP communication. No parent wants to be blamed by her HCP for the
tragedy or hear that her baby’s death will make an interesting case study.
Based on the perceptions of patients in this study, parents who have
experienced stillbirth prefer continuity of care wherein HCPs maintain communication from the moment of suspected death throughout any additional
examinations to confirm the death. Parents also desire a clear statement of
the baby’s death accompanied by verbal and nonverbal expressions of sympathy. Parents prefer that the HCP remain present, allowing time and space
for emotions and questions, as well as offering and explaining options.
Stillbirth is both a diagnosis for one patient (the parent) that requires subsequent, and often immediate, decision making (e.g., induction of delivery)
and death notification regarding a second patient (the child). The traumatic
impact of this dual notification requires care and support for the surviving
patient in the hours and days following death notification.
Specifically, the findings in this study support many recommendations in
competent and compassionate death notification. When a heartbeat is not
detected during a routine ultrasound, topic avoidance should not prevail when
there are obvious nonverbal signs, such as additional tests and HCPs being
consulted, that something is not right. Being aware of the parent’s emotional,
verbal, and nonverbal response during this time is crucial. If parents are exhibiting signs of anxiety, fear, or a need for information that the technician or
nurse cannot provide, rather than ignoring the parent or deflecting the reality
of the situation, the HCP can: (a) acknowledge the parent’s feeling, perhaps
saying, “I can see you are concerned” or “I can image that this might feel stressful”; (b) assure the parent that everything is being done to ascertain the baby’s
condition by saying something like, “I’m going to get another technician/
doctor here to help me interpret what I’m seeing” or “I need to get another
machine to get a better look”; (c) confirm that the parent will get the information as soon as it is possible, perhaps saying, “I’m going to step out and talk
with the doctor who will back here in just a few minutes to talk with you and
answer any questions you have”; and (d) support the parent by asking if there
is anything she needs while waiting to get the results of the exam, saying
something such as, “Can I call a partner or a friend to wait with you?”
When the baby’s death has been confirmed, the expression of heartfelt
sympathy, including nonverbal connection, is important. Also vital is the clear
communication of stillbirth that is not cloaked in clinical jargon. Spending
time with the grieving mother and creating space for emotional expression is
recommended. And, when the parent is ready, psychoeducation about the
birth process and alerting parents to their options are helpful and may minimize irremediable regret. Continuity of care is also significant to stillbirth

Stillbirth Notification

351

Downloaded by [Arizona State University] at 14:47 21 December 2012

parents. If the clinical setting does not enable the physician determining and/
or delivering stillbirth news to remain with the mother, an interdisciplinary
approach wherein a bereavement specialist or social worker trained in death
notification is present is recommended to provide comfort, answer questions,
and address concerns. Even when the physician is able to remain present, it
may be advisable to have a bereavement specialist or social worker present
to help parents process both the medical information and the emotional
trauma of their baby’s death. Just as social workers are not trained to provide
diagnoses or perform medical procedures, physicians generally are not
trained to help parents navigate the profound psychosocial and spiritual
issues of stillbirth the way a bereavement specialist or social worker might.

Limitations and Future Research
In this study, our focus was on parents who strongly agreed or disagreed that
the way stillbirth was communicated by HCPs negatively impacted their grieving process. It is possible that focusing on parents with the strongest reactions
captures potentially unusual circumstances. Future research can include the
parents who did not have such strong reactions about the way stillbirth notification affected their grieving process. A broader look at participant responses
might confirm differences and recommendations identified in this research,
and also reveal additional strong points of distinction between the groups.
Respondents in this study also provided different types of answers to
the open-ended survey item regarding what a HCP said or did during death
notification, with some providing the statement of diagnosis and others offering detailed descriptions of events. Future researchers might interview parents in order to derive extended narratives from all participants. This could
affirm or extend the findings described in this study, and potentially allow
for quantitative distinctions regarding the frequency of message elements
experienced by the two groups.
Future research can also build on descriptions of patient perceptions by
empirically testing the impacts of message elements. Simulations involving
different combinations of preferred and not preferred message elements can
be created with observers rating HCPs in terms of empathy, likeability, person-centeredness, and competence. Such research would allow for correlations between specific message elements, or combinations of elements, and
perceptions of HCPs and stillbirth notification.

CONCLUSIONS
Based on the results of this study, a HCP’s ability to maintain humility, compassion, and mindfulness in the face of a baby’s death may diminish shortand long-term negative consequences for parents (Cacciatore & Flint, 2012).

352

S. Pullen et al.

The death of a baby to stillbirth is a devastating experience that has immediate and ongoing emotional, psychological, and social consequences for a
family. While HCPs may not be able to predict or prevent many of these
deaths, they have a responsibility to mitigate the trauma around the death
notification experience for the grieving mother and her family. Ultimately, the
onus of the responsibility to do no harm falls upon the HCPs. There may be
nothing that can ameliorate a parent’s natural grieving process, but HCPs can
mitigate psychological damage and avoid further exacerbating the trauma.

Downloaded by [Arizona State University] at 14:47 21 December 2012

REFERENCES
Ahrens, W., & Hart, R. (1997). Emergency physicians’ experience with pediatric
death. American Journal Of Emergency Medicine, 15, 642–643.
Benenson, R., & Pollack, M. (2003). Evaluation of emergency medicine resident
death notification skills by direct observation. Academic Emergency Medicine,
10, 219–223.
Cacciatore, J. (2010). Stillbirth: Clinical recommendations for care in the era of
evidence-based medicine. Clinical Obstetrics and Gynecology, 53(3), 691–699.
Cacciatore, J., & Bushfield, S. (2007). Stillbirth: The mother’s experience and implications for improving care. Journal of Social Work in End-of-Life & Palliative Care,
3(3), 59–79.
Cacciatore, J., & Flint, M. (2012). ATTEND: A mindfulness-based bereavement care
model. Death Studies, 36(1), 61–82.
Chan, M. F., Chan, S. H., & Day, M. C. (2003). Nurses’ attitudes towards perinatal
bereavement support in Hong Kong: A pilot study. Journal of Clinical Nursing,
12, 536–543.
Clark, R. E., & LaBeff, E. E. (1982). Death telling: Managing the delivery of bad news.
Journal of Health and Social Behavior, 23, 366–380.
Condon, J. T. (1986). Management of established pathological grief reaction after
stillbirth. American Journal of Psychiatry, 143, 987–992.
Dickson, D., Hargie, O., Brunger, K., & Stapleton, K. (2002). Health professionals’
perceptions of breaking bad news. International Journal of Health Care Quality
Assurance, 15, 324–336.
Fallowfield, L., & Jenkins, V. (2004) Communicating sad, bad, and difficult news in
medicine. The Lancet, 363, 312–319.
Glaser, B. G., & Strauss, A. L. (1968). Time for dying. New Brunswick, NJ: Aldine.
Gold, K. J. (2007). Navigating care after a baby dies: A systematic review of parent
experiences with health providers. Journal of Perinatology, 27, 230–237.
Gyulay, J. (1989). Sudden death—No farewells. In The death of a child [Special
issue]. Issues In Comprehensive Pediatric Nursing, 12, 71–102.
Hobgood, C. D., Tamayo-Sarver, J. H., Hollar, D. W., & Sawning, S. (2009). Grieving:
Death notification skills and applications for fourth-year medical students.
Teaching & Learning In Medicine, 21, 207–219.
Janzen, L., Cadell, S., & Westhues, A. (2003). From death notification through the
funeral: Bereaved parents’ experiences and their advice to professionals.
Omega: Journal of Death & Dying, 48(2), 149–164.

Downloaded by [Arizona State University] at 14:47 21 December 2012

Stillbirth Notification

353

Kirkley-Best, E., Kellner, K. R., & Ladue, T. (1984–1985). Attitudes toward stillbirth
and death threat level in a sample of obstetricians. Omega: Journal of Death
and Dying, 15, 317–327.
Leash, R. (1996). Death notification: Practical guidelines for health care professionals. Critical Care Nursing Quarterly, 19, 21–34.
Leon, I. G. (1992). Commentary: Providing versus packaging support for bereaved
parents after perinatal loss. Birth, 19(2), 89–91.
Levetown, M. (2008). Communicating with children and families: From everyday
interactions to skill in conveying distressing information. Pediatrics, 121,
e1441–e1460.
MacDorman, M. F., & Kirmeyer, S. (2009). Fetal and perinatal mortality, United States,
2005. National Vital Statistics, 57, 1–19.
Mager, W. M., & Andrykowski, M. A. (2002). Communication in the cancer ‘bad news’
consultation: Patient perceptions and psychological adjustment. PsychoOncology, 11, 35–46.
Nordström, A. (2011). An exercise in death notification. Medical Education, 45,
1139–1140.
Peppers, L. G., & Knapp, R. J. (1980). Maternal reactions to involuntary fetal/infant
death. Psychiatry, 43155–43159.
Ponce, A., Swor, R., Quest, T. E., Macy, M., Meurer, W., & Sasson, C. (2010). Death
notification training for prehospital providers: A pilot study. Prehospital
Emergency Care, 14, 537–542.
Prasad, V. (2010). Language in the end. JGIM: Journal of General Internal Medicine,
25(8), 884–885.
Ptacek, J. T., & Ellison, N. M. (2000). Health care providers’ perspectives on breaking
bad news to patients. Critical Care Nursing, 23(2), 51–59.
Pullen, S., & Nalos, D. (2009, February). Giving birth to death: A quantitative study
of patients’ perceptions of the news delivery of stillbirth diagnosis by health care
providers. Paper presented at the meeting of the Western States Communication
Association, Mesa, AZ.
Reddy, U. M. (2007). Prediction and prevention of recurrent stillbirth. Obstetrics &
Gynecology, 110, 1151–1164.
Robson, S., Thompson, J., & Ellwood, D. (2006). Obstetric management of the next
pregnancy after an unexplained stillbirth: An anonymous postal survey of
Australian obstetricians. Australian & New Zealand Journal of Obstetrics &
Gynaecology, 46, 278–281.
Säflund, K. (2003) An analysis of parents’ experiences and the caregivers’ role following the birth of a stillborn child (Unpublished doctoral dissertation). Karolinska
Institutet Danderyds Sjukhus, Division of Obstetrics and Gynaecology,
Stockholm, Sweden.
Säflund, K., Sjögren, B., & Wredling, R. (2002). Physicians’ attitudes and advice concerning pregnancy subsequent to the birth of a stillborn child. Journal of
Psychosomatic Obstetrics & Gynecology, 23, 109–115.
Säflund, K., Sjögren, B., & Wredling, R. (2004). The role of caregivers after a stillbirth:
Views and experiences of parents. Birth, 31, 132–137.
Salander, P. (2002). Bad news from the patient’s perspective: An analysis of the written narratives of newly diagnosed cancer patients. Social Science & Medicine,
55, 721–732.

Downloaded by [Arizona State University] at 14:47 21 December 2012

354

S. Pullen et al.

Schott, J., Henley, A., & Kohner, N. (2007). Pregnancy loss and the death of a baby:
Guidelines for professionals (3rd ed.). Shepperton on Thames, United Kingdom:
Bosun Press.
Smith-Cumberland, T. (2006). The evaluation of two death education programs for
EMTs using the theory of planned behavior. Death Studies, 30, 637–647.
Smith-Cumberland, T., & Feldman, R. (2006). EMT’s attitudes toward death before
and after a death education program. Prehospital Emergency Care, 10(1), 89–95.
Statham, H., & Dimavicius, J. (1992). Commentary: How do you give the bad news
to parents? Birth, 19, 103–104.
Stewart, A. E., Lord, J. H., & Mercer, D. L. (2000). A survey of professionals’ training
and experiences in delivering death notifications. Death Studies, 24, 611–631.
Strauss, A., & Corbin, J. M. (1990). Basics of qualitative research: Grounded theory
procedures and techniques. Thousand Oaks, CA: Sage.
Strauss, R. P., Sharp, M. C., Lorch, C., & Kachalia, B. (1995). Physicians and the communication of “bad news”: Parent experiences of being informed of their child’s
cleft lip and/or palate. Pediatrics, 96, 82–89.
Trulsson, O., & Radestad, I. (2004). The silent child—Mothers’ experiences before,
during, and after stillbirth. Birth, 31, 189–195.
Villagran, M., Goldsmith, J., Wittenberg-Lyles, E. M., & Baldwin, P. (2010). Creating
COMFORT: A communication-based model for breaking bad news.
Communication Education, 59, 220–234.
Watson, B., & Gallois, C. (1998). Nurturing communication by health professionals
toward patients: A communication accommodation theory approach. Health
Communication, 10, 343–355.
Widger, K., & Picot, C. (2008). Parents’ perceptions of the quality of pediatric and
perinatal end-of-life care. Pediatric Nursing, 34, 53–58.
Yardley, S. J., Davis, C. L., & Sheldon, F. (2001). Receiving a diagnosis of lung cancer:
Patients’ interpretations, perceptions and perspectives. Palliative Medicine, 15,
379–386.

Stillbirth Notification

355

APPENDIX 1: Key Distinctions Between Parent Groups
Parents reporting
positive perceptions

Downloaded by [Arizona State University] at 14:47 21 December 2012

Core stillbirth notification
experience
(differing in form and
frequency between
groups)

Shared experiences in
stillbirth notification
(differing in focus and
timing between groups)

Opposing experiences in
stillbirth notification

Delay of news delivery
Expression of sympathy
• paired with intensifiers
• nonverbal expressions of
sympathy
Communication of death
• nonverbal coupled with
verbal notification

Parents reporting
negative perceptions
Delay of news delivery
• topic avoidance by HCP
Expression of sympathy
• simple statements
Communication of death
• implied statements of
death

Communication re: options
• options offered or limits on
options explained
Expressed uncertainty
• expressed uncertainty about
how to deliver news
• uncertainty paired with
hopefulness
• HCP gave, or desired to find,
cause of death
Noted exit of HCP
• HCP presence after news
delivery

Communication re: options
• options limited without
explanation
Expressed uncertainty
• expressed uncertainty re:
baby’s condition or how
to perform exam
• uncertainty paired with
hopelessness

Support of parent emotion
Information provision
Continuity of care

Suppression of parent
emotion
Lack of information
provision
Lack of continuity of care

Noted exit of HCP
• immediate HCP exit