REVIEW

CURRENT
OPINION End-of-life care in the pediatric ICU
Lee A. Polikoff a and Megan E. McCabe b

Purpose of review
Pediatric ICUs frequently provide end-of-life (EOL) care to children. Our understanding of how EOL care is
delivered to children and what constitutes effective care for dying children and their families in the ICU
setting continues to evolve. This review identifies recent work describing events related to the death of a
child in the ICU as well as interventional efforts to improve family and provider support.
Recent findings
Pediatric ICUs (PICUs) often provide EOL care to children who die in the developed world. Areas of active
investigation include identifying effective communication techniques, meeting the needs of patients and
parents, and providing support to care providers.
Summary
PICU practitioners are developing flexible and novel approaches to pediatric EOL care in the ICU setting.
Keywords
pediatric death, pediatric end-of-life care, pediatric intensive care, pediatric palliative care

INTRODUCTION limitation of life-sustaining therapy. Oberender

&&

Although mortality rates in the pediatric ICU (PICU)
are relatively low (2–6%) in contrast to other ICU
settings, end-of-life (EOL) care remains an important
component of pediatric critical care. Patient may be
previously diagnosed with life-limiting diseases and
their death may be in some ways expected; other
patients have suffered an acute traumatic or medical
event leading to an entirely unexpected death.
Regardless of the cause of death, much work is being
done in both pediatric critical care and pediatric
palliative care to understand how best to provide
comprehensive care to dying children and their
families in the PICU. Excellent EOL care is multi-
disciplinary and embraces the whole patient, family,
and care team with a focus on comfort, clear and
compassionate communication, psychosocial and
spiritual support before, during, and after the time
of death.
This review seeks to describe recent studies
addressing some of the fundamental components
of EOL care. These include the processes by which
children die in the PICU, symptom management,
barriers and options for communicating with
families, family needs at the time of and after death,
and the needs of medical providers.
NEW INFORMATION ON HOW CHILDREN
DIE
Prior work has documented that the majority of
children in the PICU die after withdrawal or
and Tibballs [1 ] undertook a prospective study to
quantify the time course of EOL decisions, sub-
sequent withdrawal of life-sustaining treatment,
and time to death in a PICU. Their data showed
that the time from the first discussion between
medical staff and parents of the patient of with-
drawal of life-sustaining treatment to definitive
decision-making varied widely, ranging from
immediate to 457 h (19 days), with a median time
of 67.8 h (2.8 days). Large variations were also
observed in the time from decision to actual with-
drawal of life-sustaining treatment, ranging from
30 min to 47.3 h, with a median of 4.7 h. The median
time to confirmation of death was 17 min, ranging
from 0 min to 6 h 28 min. Importantly, 21% (8/38)
died more than 1 h after withdrawal of treatment.
While understanding this variability has an
important role in how PICU providers counsel
families, it also has implications for those institu-
tions that practice organ donation after cardiac
a
Pediatric Critical Care Medicine, Department of Pediatrics, Yale Univer-
sity School of Medicine and bDepartment of Pediatrics, Yale University
School of Medicine, New Haven, Connecticut, USA
Correspondence to Megan E. McCabe, MD, Assistant Professor,
Department of Pediatrics, Yale University School of Medicine, 333 Cedar
St, P.O. Box 208064, New Haven, CT 06520-8064, USA. Tel: +1 203
785 4651; fax: +1 203 785 5833; e-mail: megan.mccabe@yale.edu
Curr Opin Pediatr 2013, 25:285–289
DOI:10.1097/MOP.0b013e328360c230

1040-8703 ß 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins www.co-pediatrics.com

Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
 Emergency and critical care medicine
KEY POINTS

Time frames from the discussion of end-of-life care to its
implementation and the death of a patient can be
highly variable.

Communication and collaboration are key components
of both high-quality intensive care and end-of-life care.

Patients and families are willing and necessary partners
in identifying their needs for support at the end of life.
&
death. Shore et al. [2 ] generated a preliminary bed-
side prediction model of time to death after with-
drawal of support in children. Their data revealed
373 (72%) patients died within 30 min of with-
drawal and 452 (87%) died within 60 min. Signifi-
cant predictors included age 1 month or less; use of
two or more inotropes; use of norepinephrine, epi-
nephrine, or phenylephrine above 0.2 mg/kg/min;
and use of extracorporeal membrane oxygenation or
positive end-expiratory pressure above 10 cmH2O.
After prospective validation this model may also be a
useful tool for counseling families and planning
EOL care.
As pediatric palliative care and hospice services
become more widely available in some countries,
the question of whether some children and
families are better served by transition out of
the ICU into home or a hospice environment will
&
continue to grow in importance. Fraser et al. [3 ]
examined rates of palliative care enrollment and
location of death following discharge from PICUs
at 31 PICUs in Great Britain. Their data showed
that children who had a PICU admission during
the study period had a mortality risk more than
10 times the whole population mortality for
children 0–15 years old, yet only a small portion
were offered palliative care on discharge. Dis-
charges to palliative care from the PICU resulted
in fewer deaths in hospital (44.1% vs. nonpallia-
tive care discharges of 77.7%). Additionally, as
expected, a greater proportion of deaths were at
home, an option previously endorsed as desirable
by parents of pediatric cancer patients [4]. With
increasing frequency the PICU community is
accepting and supporting the option of terminal
extubation at home. There are no published studies
demonstrating that this approach is a benefit for
families or patients.
A qualitative study demonstrated that the staff
at one British PICU where home extubation is
regularly offered to patients thought that parents
benefit from the choice of terminal extubation at
home [5].
286 www.co-pediatrics.com
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
SYMPTOM MANAGEMENT AT THE END
OF LIFE
Common EOL symptoms in pediatric patients
include pain, dyspnea, anxiety, seizures, consti-
pation, lethargy, and anorexia. One goal of care at
the end of life is to optimize comfort for the patient
and alleviate those symptoms that the patient or
family finds distressing. There are many articles on
the approaches to pharmacologic and nonpharma-
cologic pain relief in children. A new contribution
&
by Harlos et al. [6 ] looked at the role for intranasal
fentanyl in palliative care in newborns and infants
aged 6 months or less through a retrospective
chart review. They demonstrated that a structured
approach to intranasal fentanyl administration was
an effective, minimally invasive means for treating
respiratory distress in dying newborns and infants.
They identified no adverse events in their patient
population. This may be a useful adjunct in the ICU
setting when intravenous access or other invasive
measures such as nasogastric tubes or subcutaneous
medications are not desirable.
Dyspnea is a common and significant symptom
in both critically and chronically ill pediatric
patients, yet there is little evidence to guide assess-
ment and treatment. Robinson [7] approaches dys-
pnea from a palliative care perspective and offers a
management algorithm based on matching the
intensity of the intervention with the intensity of
the symptom, escalating therapy until dyspnea is
relieved. His review integrates behavioral, mechan-
ical, and pharmacologic interventions with appro-
priate emphasis on frequent re-assessment of
patient response.
One known barrier to adequate palliation of
pain and dyspnea is attitudes of medical care pro-
viders towards the use of opiates in children and in
particular patients thought to be near or at risk of
imminent death. The attitudes towards the use of
EOL opioids among nurses working in the neonatal
ICU (NICU) and PICU and their actual practice were
described by Garten et al. [8]. The majority of NICU
and PICU nurses endorsed opioid administration in
dying NICU or PICU patients with signs of pain
(80%) or respiratory distress (65%). Shortening of
life as an adverse effect of EOL opioid analgesia was
acceptable for the majority of PICU (94.5%) and
NICU (87.0%) nurses. Interestingly, the rate of
dying infants who actually had received opioids as
assessed by retrospective chart review was similar in
NICUs (41/74, 55.4%) and PICUs (40/68, 58.8%),
yet none of the neonates (n ¼ 24) who died in the
delivery room received opioids. This study may
reflect an increasing acceptance of opioids for
palliation of EOL symptoms, but also highlights that
this may not be true outside an ICU setting. It may
Volume 25
Number 3
June 2013

also demonstrate how caregivers’ perceptions of
suffering change as a patient transitions away from
life-prolonging interventions.
COMMUNICATION IN END-OF-LIFE CARE:
BARRIERS AND OPPORTUNITIES
Communication between care providers, patients,
and families is essential to excellent EOL care.
Transitioning care from a primarily curative to
palliative care focus is often challenging to nego-
tiate. Multiple prior studies have demonstrated that
parents desire clear, honest, consistent, timely, and
compassionate information from the ICU team
regarding their child’s condition. Discussions of
advance care planning (ACP) frequently happen
late in illness. There are a number of adult studies
identifying patient, surrogate decision-maker, and
&&
physician barriers to ACP. Durall et al. [9 ] have
completed the first pediatric study to examine
physician and nurse barriers to ACP. They identified
the three most significant barriers to be unrealistic
parental expectations, limited parental understand-
ing of prognosis, and lack of parental readiness.
Further work to identify what parents and pediatric
patients perceive to be the barriers will be highly
illuminating. Another key point in their data is that,
whereas 92% of providers believed that ACP should
occur at diagnosis or during periods of stability, 60%
reported that the discussions take place during acute
illness or when death is imminent. These data are
reinforced by a retrospective analysis of ACP for
chronically ventilated children with life-limiting
conditions that demonstrated that, although these
children are fragile and at high risk for sudden
deterioration or death, 72% of ACP discussions
occurred after an acute decompensation [10].
Family conferences remain a mainstay of com-
munication in the ICU, and are often the venue for
ACP and EOL care discussions. Although there are
a number of studies informing best practice
approaches in adult ICU settings, not all of this work
is applicable to the PICU, given the heterogeny of
the patient population and the use of best interest
judgments by decision-makers. In the process of
studying decision-making in the PICU, Michelson
& how to put recommendations from research into
et al. [11 ] identified family conferences as an
important communication event in PICU EOL care,
although the data primarily reflects the views of
medical providers rather than the experience of
parents with PICU family conferences. Additional
factors that can affect communication and decision-
making in pediatric EOL care include perceived
involvement of the family with the patients’ care
and provider perception of the validity of parental
&
motivations, as demonstrated by Ruppe et al. [12 ].
1040-8703 ß 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
End-of-life care in the pediatric ICU Polikoff and McCabe
Suggestions for improving communication have
also come from the recent literature. Doorenbos
et al. [13] emphasizes the advances in providing
family-centered care and decision-making support
for PICU EOL care, but also highlights ways this care
can be further enhanced by more active engagement
with psychosocial care by social workers and with
practical emphasis on known methods to enhance
ICU communication. For those providers who
care for adolescents and young adults (AYAs) facing
&&
life-limiting conditions, Wiener et al. [14 ] have
described the development and utility of an adapted
advanced care planning guide called ‘Voicing My
Choices’. AYAs living with a life-threatening illness
want to be able to choose and record the kind of
medical treatment they want and do not want, how
they would like to be cared for, information for their
family and friends to know, and how they would like
to be remembered. The tool is organized around
developmentally appropriate priorities and tasks,
and allows AYAs to re-establish their autonomy
and sense of purpose.
FAMILY PRIORITIES FOR PEDIATRIC END
OF LIFE
Our understanding of what parents and family
members of dying children value and benefit from
continues to evolve. It is encouraging that there is
adequate material for Longden’s [15] review of the
current literature on parental perceptions of EOL
care in the PICU, although it remains clear that the
&
picture is far from complete. Weidner et al. [16 ]
provide additional perspective in a qualitative study
identifying seven parental priority dimensions of
pediatric EOL care: respect for the family’s role,
comfort, spiritual care, access to care and resources,
communication, support for parental decision-
making, and caring/humanism in providers. A
description of how parents describe the supports
and barriers to fulfilling their role as a parent to a
dying child in the PICU highlights the importance
of allowing parents to provide love and comfort and
retain responsibility for their child, thereby creating
&&
privacy and security for families [17 ]. Clinical
narratives can provide clinicians with insight into
practice. Four Wishes for Aubrey describes the EOL
care process for a medically complex infant, high-
lighting how even in the ICU parents and providers
can be supported by a collaborative approach to care
[18].
ADDRESSING BEREAVEMENT
Palliative care and hospice programs have long rec-
ognized that follow-up care to support bereaved
www.co-pediatrics.com 287
 Emergency and critical care medicine
family members is a key component of caring for the
dying. Meert et al. [19] previously reported a high
incidence of complicated grief symptoms in parents
whose children had died in the PICU. Specific risk
factors included being the primary female caregiver,
death by trauma, degree of social support and
specific psychosocial factors including attachment
style, caregiving style, and grief avoidance. In their
follow-up study of the same parent population it is
noted that complicated grief symptoms decrease
from 6 to 18 months, although not for all parents
&&
[20 ]. This work has been further extended to the
development of a novel research tool to assess needs
of bereaved parents and how well PICUs meet them,
and to investigate if better fulfillment of needs leads
to improved grief outcomes [21 ].
&
Bereavement is not experienced exclusively by
families of children who die. For many members of
the critical care team, the death of a pediatric patient
is emotionally, psychologically, and physically
challenging. For pediatric trainees, a PICU rotation
may yield their first experience with the death of a
child. It is well documented that pediatric trainees
have limited training and practical experience
with EOL care. Brown et al. [22] demonstrated that
simulation allowed residents who participated to
have greater comfort, with some identifying the
need for family conferences to establish goals of care.
&
Bateman et al. [23 ] describe the implementation of a
‘wrap up,’ a timely facilitated, multidisciplinary
meeting for medical staff debriefing after a PICU
death. The standardized approach is a valuable tool
to allow medical staff to share and process the
emotions they may have after a pediatric death. A
pilot of facilitated peer support sessions did not
demonstrate changes in level of grief or burnout
for PICU care providers, although the sample was
small and included few nurses [24]. Pediatric
acute care nurses have not been extensively evaluated
in terms of needs and coping mechanisms with
regard to patient death. Cook et al. [25] identified
specific categories of coping behaviors (boundaries,
memories, disconnecting, and labeling), as well as
key components to effective coping (colleague sup-
port, institutional resources, and nurses’ experience
level).
CONCLUSION
Whereas for many the PICU appears to be an unde-
sirable location for EOL care, many children spend
their last moments in an ICU setting. It is therefore
incumbent on pediatric critical care practitioners to
refine their skills and create environments to sup-
port the comfort and security of patients and their
families before, during, and after the time of death.
288 www.co-pediatrics.com
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
New data and prediction models may assist inten-
sivists in providing more effective counsel to
families regarding the timing of transition from
life-prolonging care to EOL care. Ongoing develop-
ment of useful symptom management techniques
will benefit patients and their families. Future
research should focus on identifying what com-
ponents of interdisciplinary care and commu-
nication allow patients to die peacefully and
comfortably and provide families with appropriate
support during both the dying and bereavement
processes. This will require collaboration across
disciplines and with the children and families we
are privileged to care for.
Acknowledgements
We would like to thank our patients and their families for
allowing us into their lives.
Conflicts of interest
There are no conflicts of interest.
REFERENCES AND RECOMMENDED
READING
Papers of particular interest, published within the annual period of review, have
been highlighted as:
& of special interest
&& of outstanding interest
Additional references related to this topic can also be found in the Current
World Literature section in this issue (p. 427).
1. Oberender F, Tibballs J. Withdrawal of life-support in paediatric intensive
&& care–a study of time intervals between discussion, decision and death. BMC
Pediatrics 2011; 11:39.
A unique prospective investigation of how time to decision-making in end-of-life care
determines timing of withdrawal of life-sustaining thrapies and death in a PICU.
2. Shore PM, Huang R, Roy L, et al. Development of a bedside tool to predict
& time to death after withdrawal of life-sustaining therapies in infants and
children. Pediatr Crit Care Med 2012; 13:415–422.
With validation this tool could be useful for both developing plans of care for end of
life and possibly counseling families regarding organ donation after cardiac death.
3. Fraser LK, Miller M, Draper ES, et al. Place of death and palliative care
following discharge from paediatric intensive care units. Arch Dis Child 2011;
&
96:1195–1198.
This study included a large sample population and demonstrated a high mortality
risk after ICU admission and low palliative care and hospice referral rates.
4. Goldman A, Beardsmore S, Hunt J. Palliative care for children with cancer:
home, hospital, or hospice? Arch Dis Child 1990; 65:641–643.
5. Simpson CE, Penrose CV. Compassionate extubation in children at hospice
and home. Int J Palliat Nurs 2011; 17:164–169.
6. Harlos MS, Stenekes S, Lambert D, et al. Intranasal fentanyl in the palliative
care of newborns and infants. J Pain Symptom Manag 2012 (in press).
&
A safe and useful adjunct for symptom management when invasive opioid
adminstration is not desired.
7. Robinson WM. Palliation of dyspnea in pediatrics. Chronic Respir Dis 2012;
9:251–256.
8. Garten L, Daehmlow S, Reindl T, et al. End-of-life opioid administration on
neonatal and pediatric intensive care units: nurses’ attitudes and practice. Eur
J Pain 2011; 15:958–965.
9. Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care
&& discussions for children with life-threatening conditions. Pediatrics 2012;
129:e975–e982.
The first study to identify barriers to advance care planning in seriously ill children.
Providers attribute the primary barriers to perceived family characteristics.
10. Edwards JD, Kun SS, Graham RJ, Keens TJ. End-of-life discussions and
advance care planning for children on long-term assisted ventilation with life-
limiting conditions. J Palliat Care 2012; 28:21–27.
11. Michelson KN, Emanuel L, Carter A, et al. Pediatric intensive care unit family
& conferences: one mode of communication for discussing end-of-life care
decisions. Pediatr Crit Care Med 2011; 12:e336–e343.
The first study to investigate family conferences in decision-making in the PICU,
yielding primarily information from the medical team’s point of view.
Volume 25
Number 3
June 2013

12. Ruppe MD, Feudtner C, Hexem KR, Morrison WE. Family factors affect
& clinician attitudes in pediatric end-of-life decision making: a randomized
vignette study. J Pain Symptom Manag 2012 (in press).
A creative study investigating how clinicians integrate family factors into end-of-life
decision-making.
13. Doorenbos A, Lindhorst T, Starks H, et al. Palliative care in the pediatric ICU:
challenges and opportunities for family-centered practice. J Social Work End-
Of-Life Palliat Care 2012; 8:297–315.
14. Wiener L, Zadeh S, Battles H, et al. Allowing adolescents and young adults to
&& plan their end-of-life care. Pediatrics 2012; 130:897–905.
The description of a novel tool development for adolescent advance care planning
along with concrete descriptions of how it can be used.
15. Longden JV. Parental perceptions of end-of-life care on paediatric intensive
care units: a literature review. Nursing Crit Care 2011; 16:131–139.
16. Weidner NJ, Cameron M, Lee RC, et al. End-of-life care for the dying child:
& what matters most to parents. J Palliat Care 2011; 27:279–286.
A qualitative study adding further information to what parents prioritize when their
child is dying.
17. McGraw SA, Truog RD, Solomon MZ, et al. ‘I was able to still be her
&& mom’-parenting at end of life in the pediatric intensive care unit. Pediatric
Crit Care Med 2012; 13:e350–e356.
An important extension of prior work on how parents experience their role as
parents when their child is dying in the ICU.
18. Carter BS, Brown JB, Brown S, Meyer EC. Four wishes for Aubrey. J Perinatol
2012; 32:10–14.
19. Meert KL, Donaldson AE, Newth CJ, et al. Complicated grief and associated
risk factors among parents following a child’s death in the pediatric intensive
care unit. Arch Pediatr Adolesc Med 2010; 164:1045–1051.
1040-8703 ß 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
End-of-life care in the pediatric ICU Polikoff and McCabe
20. Meert KL, Shear K, Newth CJ, et al. Follow-up study of complicated grief
&& among parents eighteen months after a child’s death in the pediatric intensive
care unit. J Palliat Med 2011; 14:207–214.
This study builds on a previous investigation into parental grief after the death
of a child in the PICU. It shows how indices of complicated grief change over
time.
21. Meert KL, Templin TN, Michelson KN, et al. The bereaved parent needs
& assessment: a new instrument to assess the needs of parents whose
children died in the pediatric intensive care unit. Crit Care Med 2012;
40:3050–3057.
This is the description of a new research tool to improve our capacity to conduct
research into ways to meet the needs of bereaved parents in the PICU.
22. Brown CM, Lloyd EC, Swearingen CJ, Boateng BA. Improving resident self-
efficacy in pediatric palliative care through clinical simulation. J Palliat Care
2012; 28:157–163.
23. Bateman ST, Dixon R, Trozzi M. The wrap-up: a unique forum to support
& pediatric residents when faced with the death of a child. J Palliat Med 2012;
15:1329–1334.
A descriptive study of one institution’s development of a timely facilitated debrief-
ing mechanism for PICU care providers to enhance their coping with patient
deaths.
24. Eagle S, Creel A, Alexandrov A. The effect of facilitated peer support
sessions on burnout and grief management among healthcare providers
in pediatric intensive care units: a pilot study. J Palliat Med 2012; 15:1178–
1180.
25. Cook KA, Mott SS, Lawrence PP, et al. Coping while caring for the dying child:
nurses’ experiences in an acute care setting. J Pediatric Nursing 2012;
27:e11–e21.
www.co-pediatrics.com 289