A Clinical Careography: Steering Life-

and-death Decisions Through Care

Laura E. Navne, PhD,​a Mette N. Svendsen, PhD​b

OBJECTIVES: In many Euro-American societies, the ideal of patient and family involvement in
abstract
clinical decision-making prevails. This ideal exists alongside the doctor’s obligation and
responsibility to make decisions and to be accountable for them. In this article, we explore
how medical staff navigate the tension between autonomy and authority when engaging life-
and-death decision-making in a Danish NICU.
METHODS: The study rests on ethnographic fieldwork in a Danish NICU, involving participant
observations in everyday care and decision-making work and semistructured interviews
with staff and parents. All interviews were taped and transcribed. The empirical material
was analyzed using thematic coding and validated in discussions with staff, parents, and
social scientists.
RESULTS: Decisions are relational. Multiple moves, spaces, temporalities, and actors are
involved in life-and-death decisions in the NICU. Therefore, the concept of medical decision-
making fails to do justice to the complex efforts of moving infants in or out of life. Yet, many
of these decision-making moments are staged, timed, and coordinated by medical staff.
Therefore, we introduce an alternative vocabulary for talking about life-and-death decision-
making in neonatology to help us attend to the moral stakes, the emotional tenor, and the
fine-grained mechanisms of authority implied in such decisions around tiny infants.
CONCLUSIONS: We conceptualize decisions as an art of “careography.” Careography is the work
of aligning care for the infant, care for the parents, care for staff, care for other infants, and
care for society at large, in the process of deciding whether it is best to continue or withdraw
life support.

aThe Danish Centre of Applied Social Science, Copenhagen, Denmark; and bDepartment of Health Services Research, Institute of Public Health, University of Copenhagen, Copenhagen,

Denmark

DOI: https://​doi.​org/​10.​1542/​peds.​2018-​0478G
Accepted for publication May 9, 2018
Address correspondence to Laura E. Navne, The Danish Centre of Applied Social Science, Herluf Trolles Gade 11, 1052 Copenhagen, Denmark. E-mail: lana@vive.dk
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2018 by the American Academy of Pediatrics

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SUPPLEMENT ARTICLE PEDIATRICS Volume 142, number s1, September 2018:e20180478G
Personally, I tend to focus on the relational.
Of course, we need to know the medical
facts, the statistics and so. But the decision
is only five percent biomedical. Whether a
family can live with a child with disabilities
and what value they ascribe to such a life,
no medical doctor knows any better than
the family.
With these words, a Danish senior
neonatologist reminds us of the
relational nature of what we tend
to term medical decision-making. In
the field of neonatology, decisions
must be made about whether to
initiate, continue, or withdraw active
treatment in infants born extremely
prematurely. In this article, we will
explore the process by which such
decisions are made.
On the 1 hand, the neonatologist
seems to stress the parental
autonomy in such decision-making
(no one knows better than the
family). On the other hand, as we
shall see in this article, the medical
professional’s “focus on the
relational” may not really be about
parental autonomy. Instead, it may
be more about care for and attention
to the family situation as assessed
by the doctor. As such, it might
resemble what we sometimes deem
“paternalism” or medical authority.
In this article, we begin from a
social science curiosity as to what
characterizes the 95% of the
decision-making process that, in
the neonatologist’s opinion, is
not biomedical. We suggest that
the answer lies in reducing or
reinterpreting the classic tension
between parental autonomy
and professional authority in
decision-making.
We recognize that choice and
autonomy are considered core values
in the realm of medical ethics.‍1 In many
Euro-American societies, there is both
an ethical and a political ideal of the
involvement of patients and relatives in
decision-making. This exists alongside
the doctor’s legal obligation and ethical
responsibility to make decisions and
to be accountable for them. With this
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PEDIATRICS Volume 142, number s1, September 2018
article, we ask how medical staff in a
Danish NICU navigate this tension in
a field where life-and-death decision-
making may be only 5% biomedical.
From what we learned, we propose an
alternative vocabulary for talking about
life-and-death decision-making in the
field of neonatology. We hope this new
vocabulary can help us attend to the
moral experience, the emotional tenor,
and the fine-grained mechanisms of
authority implied in the process of life-
and-death decisions for tiny infants.
We suggest conceptualizing decisions
as an art of “careography.”
METHODS
The argument we build in this article
rests on ethnographic fieldworks
conducted in a highly specialized
Danish NICU treating infants as
early as gestational week 23. In this
NICU, the second author conducted 1
month of ethnographic fieldwork in
2010, and the first author conducted
6 months of ethnographic fieldwork
between December 2013 and
February 2015 as part of her doctoral
degree work. (As part of the research
project “A Life Worth Living” led by
the second author, the first author
did a 3-year doctoral study of life-
and-death decision-making processes
in neonatology.) The first author’s
fieldwork included 350 hours of
participant observation in the daily
life and work in the NICU, managing
50 infant trajectories and engaging
in numerous informal conversations
with parents and medical staff.
Moreover, the first author conducted
semistructured interviews with 10
parents in their homes 3 to 6 months
after discharge. In total, the 2 authors
interviewed 18 doctors and nurses.
Some of the interviews the authors
conducted together.
In the Danish NICU where we did
fieldwork, family-centered care has
been part of policy and practice since
the 1970s.‍2,​3‍ The NICU webpage
states, “Care for parents is about
supporting the development of family
functions.” In everyday practice, this
plays out as a standing invitation
to parents to stay in the NICU 24
hours a day, 7 days a week, and most
parents do so. While they are there,
doctors and nurses tutor them as
to how to participate in the care
of their infant. Also, the kangaroo
method was implemented in 2014
stressing the importance of physical
attachment,​‍4 and in 2015, the Danish
NICU was successfully certified in the
American Newborn Individualized
Developmental Care and Assessment
Program. Prioritizing these policies
and guidelines, the NICU seems
to link successful treatment of
premature infants with successful
parental involvement and the
establishment of parent-child
attachment.
In discussing the ways that these
policies shape decision-making,
we will first introduce a case that
the first author encountered long
before she engaged in her doctoral
degree work. Second, we will outline
our concept of careography. Third,
we discuss the implications of
conceptualizing decision-making as
careography highlighting issues of
care, authority, and moral experience.
MORALLY LOADED DECISIONS
On a January morning in 2009, a
friend of the first author, whom we
shall call Anna, gave birth to a little
boy. He was born in gestational week
27 in a highly specialized NICU in
the Centre of Copenhagen. The staff
members said “Congratulations!”
Her son, whom we will call Elias, was
attached to a mechanical ventilator
and a tube. The next day, Anna held
Elias for the first time; “He was so
tiny, weighing 928 g, 37 cm long and
looking like a little fairy-tale creature.
The nurses taught us how to feed him
and care for him, and what to avoid.
I sat with him on my chest, singing to
him,​” Anna explained. Her boyfriend
did not feel comfortable with holding
Elias at the time.
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On day 3, an ultrasound scan of Elias’
brain revealed a grade 4 bleed on the
right side of his brain. Anna does not
recall what information the doctors
gave them about the implications.
A week later, another scan found
another bleeding on the left side of
Elias’ brain. Anna ran to the nearest
bathroom; her boyfriend stormed out
of the hospital. The staff asked the
parents to ponder about whether the
human costs for them as a family and
for Elias as an individual were too
high. They asked them to consider
whether it was time to end treatment.
That evening, the couple came to
the first author’s home to discuss
their situation. Their 18-month-old
daughter, Astrid, was asleep in the
room next door. The parents told the
first author about the scenarios the
doctors had lined up. In their words,
the doctors had said, “Either Elias could
have a life that was not worth living or
they (the parents) had to decide to let
him die.” They went through potential
future scenarios of living with the loss,
living with the uncertainty of whether
Elias could have survived if they had
given him another chance, living with
a disabled child (but with what kind
of disability?), being confronted with
having to decide on whether to put
Elias in an institution, and of how this
might affect Astrid’s childhood and
future.
We cannot fully account for the
multiplicity of scenarios Elias’
parents went through that night.
Neither can we give you a clear
picture of what they decided on. The
closest they came to a decision was
realizing that all they could do was to
hope for a miracle. As it turned out,
no further complication befell Elias
in the days after, and the question of
ending treatment was not addressed
again. Like every premature infant,
Elias remained in the NICU while
waiting for his brain, lungs, and guts
to reach the maturity of a child born
at due date. Elias’ parents were in a
deep crisis in their lives as well as in
their relationship; they questioned
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S560
their future as a couple. Because
this was no secret to the staff, 1
afternoon, a senior neonatologist,
Dr Mads, approached Elias’ father in
the NICU and said, “I just wanted to
ask how you are doing. What you are
going through right now is extremely
heavy and stressful, but I have to
emphasize how important it is that
you and Anna support each other in
being there for each other and for
Elias.”
The story of Elias and his parents
initiated the first author’s year-long
inquiry into the question of how
medical staff and parents handle and
experience life-and-death decisions
in a Danish NICU. In December 2013,
when the first author entered the
same specialized NICU to conduct
ethnographic fieldwork, she realized
that the story of Elias was not unique.
The questions raised by Elias’ story
followed her into her fieldwork.
How can anyone, whether a medical
doctor or a parent, ever make such
a decision regarding an infant’s life
on the basis of so many uncertainties
concerning what it is he or she is
deciding on? What role and authority
do medical staff assign to parents
and to themselves in the making
of such morally loaded decisions?
When, how, and what determine
what constitutes a “good life” for
Elias and for his parents? And finally,
what on earth motivates a senior
neonatologist to discuss relationship
issues with a parent?
DECISIONS AS AN ART OF
CAREOGRAPHY
After many infant trajectories like
that of Elias, we observed how
decisions were never bound to a
moment, to a place, or to a single
or even a few individuals. Rather,
decisions were dispersed and
moved around; where and when
these discussions occurred ranged
from the infant’s incubator side
(doctor’s round, care update, blood
samples) to the clinical conference
rooms (discussed in the doctors’
and nurses’ collectives, respectively)
to radiograph conferences (when
the senior radiologist predicted
infant gut infections or pulmonary
problems) to the blood tests results
(when a doctor assessed “this is
not a viable BAS-test,​” referring to
the results of blood tests measuring
vital signs). Decisions entered
intimate and worried conversations
between mothers and fathers in
the parents’ kitchen and the staff
kitchen where a nurse informs the
doctor that “the parents worry he
is going to die.” They take place in
the hallway and the lobby. As in
the case of Elias, decisions traveled
home with parents at night, into
the homes of relatives and into
discussions of how to respond to the
doctor’s recommendation to end
or continue active treatment in an
infant facing grade 4 bleedings in the
brain. Decisions entered phone calls
with relatives, medical authorities,
the legal department, and even,
sometimes, social authorities.
There are so many moves, spaces,
temporalities, and actors involved
in life-and-death decisions in the
NICU that the concept of a standard
process of decision-making fails to
do justice to the complex efforts of
moving infants in or out of life. Still,
we realized all these apparently
fleeting decision-making moments
are at least partially staged, timed,
and coordinated by medical staff.
Therefore, in this article, we
introduce the term careography
(pronouncing this care-e-ography)
to bring forth how the process of
moving premature infants in or out
of life involves not only a biomedical
assessment but also a complex
coordination of authority, care,
and emotions. In developing the
concept of careography (in Danish,
omsorgskoreografi), we therefore
draw inspiration from the art of
choreography, that is, “the art or job
of deciding how dancers will move in
a performance.”‍5 This, we suggest, is
NAVNE and SVENDSEN
what makes up 95% of the decisional
process.
In tracing how clinicians steer care
for multiple actors, we have been
inspired by the British scholar John
Law’s concept of care multiple. In his
work on veterinarians killing cows
during the foot and mouth epidemics
in Great Britain, Law defines “care
multiple” as the simultaneous
handling of care for multiple objects,​‍6
identifying these as care for the
animal, care for the farmer, care
for the self, and care for the bigger
picture.‍6 Applying the notion of care
multiple to practices in the NICU,
we have identified at least 5 objects
of care in need of simultaneous
handling (ie, care for the infant, care
for the parents, care for staff, care for
other infants, and care for society).
With the concept of careography, we
seek to render visible the vividness
and improvisation of the clinician’s
coordination of these many objects
of care in time and space, outlining
moves that shape negotiations of the
life or death of premature infants.
A central priority in this NICU (and,
we suspect, in all NICUs) is to provide
care for the infant. But, besides that,
the care multiple concept involves
caring for many other individuals or
entities. In this Danish NICU, the work
of saving, treating, and caring for
premature infants involves care for the
parents’ present and future situation.
Care for the infant necessitates care
for the parents. This is what the short
conversation between Elias’ father
and Dr Mads illustrates and what is
the driving force behind the family-
centered care paradigm.
Care for staff is another concern,
especially for the clinic management.
During weeks or months of feeding,
medicating, monitoring, and holding
critically ill infants like Elias, whose
futures are uncertain and whose
treatment involves suffering, NICU
nurses sometimes come to question
the ethics of continued care.
Attending to nurses’ ethical concerns
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PEDIATRICS Volume 142, number s1, September 2018
before they quit their jobs and leave
a department full of children in
need of care is a responsibility of
the management as the head of the
clinic told us in an interview. In other
words, timely care for the staff is a
means of maintaining necessary staff
resources in the clinic; without staff,
there would be no care for infants.
Care for relatives is also a crucial part
of the NICU’s task and an important
component of the decision-
making process. Due to the deadly
consequences of infections in the
NICU, nonparental relatives’ access
into the clinic is minimal compared
with other hospital departments.
Still, grandparents, uncles, and
aunts show up (ie, in the lobby).
They offer emotional support for
the parents and raise questions
in relation to treatment plans and
options. Thus, the relatives become
yet another object of care which staff
(and parents) attend to in decision
processes.
Moreover, staff need to care for a
fair distribution of time and staff
expertise among the 30 or 40 infants
admitted to the Danish NICU. This
establishes “the other infants” in
the clinic as a fourth object of care
that the staff feel responsible for
attending to.
Finally, doctors and nurses
experience that a “responsibility
towards society” (in Danish,
hensynet til samfundet) plays a
role in discussions of treatment
trajectories within the confined
walls of the clinical conference room.
When asked in interviews what
this meant, many doctors referred
mainly to their responsibility not
to save lives that would become
“too difficult,​” as they phrased it,
with reference to the prospect of
lifelong institutionalization and
dependency on technology and
professional caregivers. Some also
considered the issue of society posing
a utilitarian perspective regarding
what a fair distribution of resources
in the Danish health care system
is in particular and in the Danish
Welfare Society in general. In these
ways, “care for society” constituted
a concern the clinicians experienced
they had to balance with the care for
the infant, the parents, the staff, and
the other infants in the department.
Careography is the work of aligning
these multiple (and sometimes
opposing) care objects and needs in
the process of assessing an infant
and a family and deciding whether
it is best to continue or withdraw
life support. With this concept, we
draw on the work and profession
of writing and composing a dance,
a show, or a drama to invoke the
simultaneous control, care, and
affective dispositions medical staff
made as they outlined the moves of
care for infants, parents, colleagues,
other infants, and society. We want
to demonstrate how decisions were
immovable with reference to the
law placing the sole responsibility
on the doctor and, at the same time,
bendable with reference to family
biographies evoking empathy in
medical staff and pushing decisions
to either initiate or withhold active
treatment. Recognizing the human
vulnerabilities and the emotional
tenor associated with such life-and-
death decisions for parents and staff,
we also wish to capture the sense of
moral urgency in these situations;
it is a moral urgency that can never
solely be resolved with reference to
the ideals of patient rights, patient
choice, or patient autonomy so
dominant in medical ethics of today.‍1
Rather, the words of the senior
neonatologist who “tends to focus
on the relational” may direct our
attention to the more-than-individual
moral stakes in making decisions
around premature infants.
DEVELOPING A NEW VOCABULARY FOR
LIFE-AND-DEATH DECISIONS
Decisions as a Care Work
All the clinicians we met in
the Danish NICU articulated
S561
life-and-death decisions as a complex
art of balancing care for the infant,
the family, and for society. In the
words of Dr Nana, “You need to
care for the family, the child, and for
society; mainly for the family and the
child… and you simply can’t. They
are so different in their needs, their
starting points, and their resources
and you must take these needs into
account.” During fieldwork in the
clinic, we gradually gained insights
into how this seemingly unattainable
work of aligning these clashing needs
played out in the daily practices of
care as described above.
As we came to understand this
process, we shifted in our descriptive
vocabulary. We stopped thinking
about autonomous individuals
making decisions. Instead, we
thought of people caring for each
other through a difficult set of
life experiences. Theoretically, in
addressing decisions as care, we find
inspiration in the Dutch scholar, Mol,​‍7
who argues that “choice” is only 1 of
many practical doings in a larger care
work.
Conceptualizing decisions as a care
work renders visible the bodily and
material practices involved in saving
someone’s life,​‍7 and it makes explicit
the affective dimension of life-and-
death negotiations, evoked in the
opening case of Elias. Moreover,
calling care a type of work directs
attention to the hardship (ie, not
only the physical work but also
the sweating, the worrying, the
tears and emotions, and the search
for alternative treatment options
involved in providing care in the
process of such negotiations). Not
least, we intend hereby to direct
attention to the improvisations‍8
and tinkering‍6 implied in striving to
find out what is best and engage in
reaching a certain outcome or what
we associate with a decision.‍9–11
‍ negotiations of life and death.
In doing this, we are in line with
numerous other scholars who
challenge a prevailing bioethical
paradigm used to understand
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S562
decisions as a discrete event.‍12–‍‍‍‍‍‍ 20
‍ introductory quotation). Rather, the
Talking about decisions as a care doctors would sometimes consider
work, we want to direct attention parental reproductive histories to
to the distributed and relational guide and give direction in particular
character of decision work7,​21,​
‍ 22
‍ and decision-making moments. For
to the invisible work that shapes instance, in moments of huge clinical
hospital lives and deaths.‍23–‍ 26
‍ uncertainty regarding the prognosis
Decisions appear mainly oriented of a child of 23 or 24 weeks, we heard
toward an outcome. Care work is medical doctors turn to the parents’
more focused on the processes and histories of previous pregnancy loss,
the doings that lead to that outcome. mishaps, involuntary childlessness,
intravenous fluid attempts, or egg
During our fieldwork in the NICU, the
donation as they processed their
doctors would clearly articulate that
doubts and uncertainties about
the legal responsibility to decide on
whether to initiate life-saving
withdrawing or continuing treatment
treatment. The questions they asked
rested on them. Yet sometimes the
were not about autonomy. Instead,
question could be left open and
in a particular and apparently
unsettled, as in the case of Elias.
precarious and bio-medically futile
Situations of disagreement between
infant, they wondered about things
parents and staff sometimes exposed
such as the following: Was this
that there are competing voices of
infant conceived during a 1-night
authority at play in negotiations
stand? Was it a young couple’s first
of life and death in the NICU.‍27 In
pregnancy? Did the family have
analyzing these subtle negotiations of
other children? Such questions
authority, we need to attend to care
could also be raised and, if answered
as not only a practical doing but also
positively, direct the decision toward
as an issue of authority.
withdrawal of treatment. In other
The Fine-grained Mechanisms words, consulting medical records
of Authority and the Affective or colleagues before a prenatal
consultation to learn about the
Dispositions
family’s situation was common
Asking the questions, “Who defines
among the medical doctors in the
what care is?” and “Who cares for
Danish NICU (for a related discussion
whom and for how long?”, scholars
of the role of family histories in life-
such as Martin et al‍28 and de la
and-death decisions, see Tännsjö
Bellacasa‍29 remind us that care is “a
in this special issue). The clinicians
selective mode of attention” and that
seemed to leave room for the family
care practices are always enmeshed
situation as a whole in the decision
in relations of power and “embroiled
process.
in complex politics.”‍28 Defining what
care is and who cares for whom Thus, we learned that the family
in the Danish NICU is embroiled biography and the infant’s story
in departmental guidelines on of coming into being could evoke
withdrawal of life-saving treatment, emotional identification in clinicians
policies of family-centered care, and come to push infants in or out
political ideals of patient autonomy of life-saving treatment in so-called
and involvement in decision-making, “gray-area” decision-making
and many more complex institutional situations.‍30 In Denmark, family
structures. origin stories are relevant in the
We learned that the act of involving
parents in decision-making implied
Moral Experience
much more than respecting parental
autonomy (as suggested in the words Being admitted to or working in the
of the senior neonatologist in the NICU, many parents, nurses, and
NAVNE and SVENDSEN
doctors find themselves confronted
with scenes of crisis bringing moral
striving to the surface. The case of
Elias gave us just a glimpse of the
dilemmas at stake when parents and
staff approach the discussion of an
infant’s uncertain future scenarios.
In moral anthropology and, in
particular, the work of the American
anthropologist Mattingly,​‍31,​32
‍ relations with their infant? When
we found analytical tools used to
attend to moral perils‍33,​34
‍ clinicians
and parents expressed. Mattingly32
has developed the concept of moral
laboratories with which she invites
us to explore how people seek
to realize morally good lives and
explore what “life projects” people
are striving to accomplish within
situations “marked with a radical
uncertainty.” This perspective directs
attention to the moral striving to
become “good enough” parents,
medical doctors, and nurses involved
in life-and-death decisions.
With the term “experienced pioneers,​”
the Dutch science and technology
studies scholar, Mesman,​‍25 adequately
characterizes the NICU staff as
skilled improvisers in a landscape
of medical uncertainty. Yet, bringing
the analytical attention to what is
morally at stake among actors actively
taking part in another being’s death,
made us aware of how this work
requires not only morality in the
making as Mesman‍25 suggests but
also that one must guard one’s own
“humane” qualities as a caretaker.‍35
In the NICU, staff not only guard their
own humane qualities as caretakers
(caring for themselves and caring
for their colleagues) but also the
humane qualities of society (caring for
society) as they try to uphold the trust
in public health care in the general
population with the clinical moves
they outline.
Limits to the Vocabulary: Little Room
for Ambivalence in the Parent–Child
Relation
Although the concept of careography
captures the moral practices
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PEDIATRICS Volume 142, number s1, September 2018
and experiences of medical
staff navigating life-and-death
negotiations in the clinic, it does
not account well for the parental
experiences. What is at stake for the
parents who are the object of the
staff’s comprehensive care work and
at the same time themselves involved
in caring for and establishing
the medical staff interfered with
how Elias’ father engaged with his
son, this was not a unique case, but
just 1 of many examples of what we
found was a strong “imperative of
attachment” prevailing in the Danish
clinic and in the Danish society. This
attachment imperative was visible
in the daily emphasis staff put on
educating parents in how to attach to
their child. In other words, what does
it feel like to be a parent in a clinical
environment that practices decision-
making as an art of careography?
In interviews with parents,
we realized that the extremely
premature infants provoked
ambivalent feelings of hesitant
attachment in some NICU parents
when faced with the fear and
uncertainty about the potential loss
of their child.‍36–‍‍‍ 41
‍ Thus, a strong
imperative of attachment in the
clinic meets a more ambivalent
experience of attachment in parents.
We deal extensively with this issue
elsewhere.‍42 Although the term
careography is not a conceptual
tool to capture parental experience,
we find that its focus on decision-
making as an outcome of intensely
coordinated care and a vessel of staff
moral experience renders visible the
emotional conditions of possibilities
within which parents try to make kin
with infants at the margins.
CAREOGRAPHY AND THE REMAINING
95%
In contemporary Euro-American
health care contexts and beyond,
the scientific, political, and public
decision-making discourses are
centered around ideals of individual
autonomy and informed choice.‍43
These discourses rely on the idea
that, provided that individual citizens
are enlightened and offered expert
knowledge (whether in a context
of healthy eating, nonsmoking,
safe sex, or in choices of medical
treatment), they are capable of
making autonomous calculations
and judgments (decisions) in
their own favor.‍44 In particular,
in biomedical ethics, the role of
patient autonomy in decisions about
medical treatments has become a key
concern.‍45,​46
‍ In practice, however,
the idea of the patient exercising
autonomous choices on the basis
of the clinician’s advice has often
proved ethically challenging.46–‍‍‍ 50
‍
The story of Elias and his
parents most vividly depicts the
shortcomings of the decision
discourses on both individual
autonomy and informed choice.
With the story, we illustrate the vast
moral uncertainties, the multiplicity
of scattered and intangible
decision moments, and the largely
relational work of agreeing on a
plan of care. The story reveals the
interdependencies at stake when
parents, infants, relatives, and staff
negotiate a plan of care for an infant
whose future is uncertain. When
parents and staff move and maneuver
within these situations, unarticulated
and unnoticed forms of both medical
and parental authority and emotion
come into play.
When Dr Mads engages in a
conversation with Elias’ father to
encourage him to fight for and stay
in a relationship with his girlfriend
and initiate attachment in relation
to his son, this reveals that central
to saving infants’ lives is also saving
or supporting family life; thus, the
situation of the family comes to
matter in the process of establishing
infants as viable and valuable.
Medical doctors, patients, and
relatives all have to navigate the
murky space between too much or
S563
too little medical authority or too
much or too little parental freedom.
With the concept of careography,
we wish to overcome traditional
debates on paternalistic–informed
decisions versus autonomous–
informed decisions. None of these
traditional ways of addressing
power in health care adhere to
the complex enactments of power,
care, and compassion that we
encountered in the Danish NICU.
As we have shown (and written
about elsewhere), the family
biography may gain a discrete
authority alongside the medical
authority in the negotiations of life
and death in the NICU. Unlike the
concept of decision-making, the
term careography is better used to
describe the complex moral work
and the human vulnerabilities
implied in initiating, withdrawing, or
continuing medical treatment.
To end this article, we will return to
Elias. Today, Elias is 9 years old and
goes to a special school for children
with disabilities. Every month, his
mother, Anna, is in contact with the
local government to (re)negotiate
some form of “service”; it could
be specially made shoes, his daily
transport to and from school, or
his physiotherapy horseback riding
classes. In every encounter, Anna
feels she has to prove that Elias is
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Funded by the Danish Council of Independent Research (Sapere Aude grant 12-133657; grant holder: Dr Svendsen).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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NAVNE and SVENDSEN
 A Clinical Careography: Steering Life-and-death Decisions Through Care
Laura E. Navne and Mette N. Svendsen
Pediatrics 2018;142;S558
DOI: 10.1542/peds.2018-0478G

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 A Clinical Careography: Steering Life-and-death Decisions Through Care
Laura E. Navne and Mette N. Svendsen
Pediatrics 2018;142;S558
DOI: 10.1542/peds.2018-0478G

The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/142/Supplement_1/S558

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