CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

Guidance for Pediatric End-of-Life Care

Jennifer S. Linebarger, MD, MPH, FAAP,a Victoria Johnson, DO, FAAP,c Renee D. Boss, MD, MHS, FAAP,b
THE SECTION ON HOSPICE AND PALLIATIVE MEDICINE

The final hours, days, and weeks in the life of a child or adolescent with abstract
serious illness are stressful for families, pediatricians, and other pediatric a
Department of Pediatrics, Children’s Mercy Kansas City, University of
caregivers. This clinical report reviews essential elements of pediatric Missouri, Kansas City, School of Medicine, Kansas City, Missouri;
b
Department of Pediatrics, Johns Hopkins University School of
care for these patients and their families, establishing end-of-life care Medicine, Berman Institute of Bioethics, Baltimore, Maryland; and
c
goals, anticipatory counseling about the dying process (expected signs or Children’s Hospital of Philadelphia, Perelman School of Medicine,
University of Pennsylvania, Philadelphia, Pennsylvania
symptoms, code status, desired location of death), and engagement with
palliative and hospice resources. This report also outlines postmortem Drs Linebarger, Boss, and Johnson were equally responsible for
conceptualizing, writing, and revising the manuscript and
tasks for the pediatric team, including staff debriefing and bereavement. considering input from all reviewers and the Board of Directors;
and all authors approve of the final publication.
This document is copyrighted and is property of the American
Academy of Pediatrics and its board of directors. All authors have
STATEMENT OF NEED filed conflict of interest statements with the American Academy of
Pediatrics. Any conflicts have been resolved through a process
Each year, approximately 45 000 infants, children, and adolescents (ages approved by the Board of Directors. The American Academy of
Pediatrics has neither solicited nor accepted any commercial
0–19 years) die in the United States.1 More than half of these deaths are involvement in the development of the content of this publication.
in children younger than 1 year, and many are attributable to congenital Clinical reports from the American Academy of Pediatrics benefit
disorders or prematurity.1 Medical problems diagnosed in the first year of from expertise and resources of liaisons and internal (AAP) and
external reviewers. However, clinical reports from the American
life may become complex chronic conditions and continue to contribute to Academy of Pediatrics may not reflect the views of the liaisons or
pediatric mortality, even as unintentional injury becomes the most the organizations or government agencies that they represent.

common cause of death through childhood and adolescence.2 The opinions and assertions expressed herein are those of the
author(s) and do not necessarily reflect the official policy or position
of the Uniformed Services University or the Department of Defense.
This clinical report aims to outline practical components of quality end-of-
The guidance in this report does not indicate an exclusive course
life care with a focus on the final hours, days, and weeks of the child or of treatment or serve as a standard of medical care. Variations,
adolescent’s life. This information is meant to serve as a pediatric taking into account individual circumstances, may be appropriate.

palliative care (PPC) primer for general pediatricians, hospitalists, and All clinical reports from the American Academy of Pediatrics
automatically expire 5 years after publication unless reaffirmed, revised,
pediatric specialists caring for dying patients and their families. or retired at or before that time.
Considerations are offered for the time leading up to death, as death
DOI: https://doi.org/10.1542/peds.2022-057011
nears, and after death. Throughout this report, the term “family” is used
Address correspondence to Jennifer S. Linebarger, MD, MP H. E-mail:
to be inclusive of parents and extended family and friends. Additionally, jslinebarger
throughout this report, the terms “child” and “adolescent” are used to be PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
inclusive of pediatric patients from birth through 21 years of age, and Copyright © 2022 by the American Academy of Pediatrics
specific age or developmental groups are highlighted where relevant.

BACKGROUND
Some pediatric deaths happen within minutes to days of the cause (eg, To cite: Linebarger JS, Johnson V, Boss RD; AAP Section on
Hospice and Palliative Medicine. Guidance for Pediatric End-
unintentional injury, extremely preterm birth, catastrophic illness). of-Life Care. Pediatrics. 2022;149(5):e2022057011
Others occur days to years after an initial diagnosis or injury,

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 particularly as access to life- experiences of children and of goal-concordant care, as do
prolonging treatments (from novel adolescents.11,12 There is compelling components such as palliative care
medications to organ evidence that children and engagement, shared decision
transplantation to home mechanical adolescents who are Black, making, formal advance care
ventilation) alters disease Indigenous, and people of color have planning (ACP), and discussion of
trajectories and contributes to limited access to specialty care code status.
chronic medical complexity. Patterns centers and providers and are
of health before death in children Palliative Care Engagement
receiving more intense interventions
and adolescents with medical at the end of life as compared with The crucial partnership between
complexity include: (1) cumulative their white counterparts.12–14 patients and families with their
complications with steady decline; Studies in pediatric oncology and pediatric primary health care teams
(2) decline followed by a period of patients with complex chronic can be complemented through the
relative stability before further medical conditions show that involvement of subspecialty PPC.
decline; or (3) widely fluctuating hospice enrollment rates are low The AAP first endorsed a
health status (repeatedly “defying and in-hospital death rates are high commitment to palliative care with a
the odds”).3 Such trajectories for children and adolescent who are policy statement in 2000,17 and the
complicate prognostication and Black, Indigenous, and people of reach of pediatric palliative care
family preparation for end of life. color, and those with fewer programs has grown since that
resources.15,16 time.18,19 The AAP recommends
Most children and adolescents in the specialty PPC “should be consulted
United States die in hospitals after for advanced clinical treatments and
withholding, not escalating, or LAYING THE GROUNDWORK FOR
complicated decision making and for
withdrawing life-sustaining END-OF-LIFE MANAGEMENT
social and spiritual needs beyond
treatments.4–6 Approximately 20% of Conversations with patients and what the primary care team can
pediatric deaths occur in the families about goals for end-of-life provide.”20 Palliative care teams can
emergency department;2 a care occur in a variety of settings, help to optimize complex pain and
circumstance so unique and from prenatal visits to outpatient symptom care, quality of life,
challenging because of lack of prior clinic appointments, home-based appraisal of prognosis,
preparedness as to warrant its own care settings, and intensive care conversations about shifting goals,
statement.7 A growing majority of units. All such conversations and family and care team support.
inpatient pediatric deaths are among warrant a partnership among the Consultation with a specialty
patients with medical complexity,4,5 pediatricians and other pediatric palliative care team is often about
although more of these families are providers, patients, and families facilitating communication and/or
opting for end-of-life care at home.8,9 with a culturally sensitive and providing decision-making
trauma-informed approach, support.21 Multiple studies have
The American Academy of Pediatrics recognizing that preferences about assessed the communication needs
(AAP) emphasizes the importance of end-of-life care are often deeply of families of children and
the medical home in the provision of rooted in family and community adolescents with life-threatening
family-centered care.10 Tapping into experiences of illness and death. conditions.22–30 Some of the key
the strength of the trusted Iterative conversations involving the communication needs are
longitudinal relationship provided medical home facilitate the delivery summarized in Table 1.
by the medical home, particularly
for those with medical complexity, TABLE 1. Communication Needs of Families of Children and Adolescents With Life-Threatening
benefits the patient and family, Conditions
regardless of the location or  Straightforward information: full disclosure allows families to better comprehend the issues and
circumstance surrounding the end of feel prepared
life. Notably, when access to home-  Coordinated and consistent communication: families fear not knowing what is going on and
based pediatric hospice care is want clinicians to help connect-the-dots using consistent and unambiguous language
 Respecting the family-child relationship and families’ unique knowledge of the child or
limited, the medical home may take
adolescent
a leading role in providing quality  Faith, hope, and meaning-making
end-of-life care.  Time to ask questions
 Ready access to staff members, including physicians (for information and support)
Emerging pediatric data reveal that,  Genuine expression of kindness and compassion from staff, including treating the child or
similar to adults, racial and ethnic adolescent as an individual and exploring the family’s emotions
 Resources for addressing conflicting goals and values
disparities exist in the end-of-life

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 Several national organizations serious decisions over time and may Even when the disease trajectory is
advocate for the early involvement benefit from clinicians who can uncertain, articulating the spectrum
of palliative care teams for those place the end-of-life considerations of possible outcomes allows for an
with serious illness.31,32 Early in the context of those prior “anticipatory guidance approach” to
involvement allows for rapport decisions. ACP.44 In the setting of prenatal
building and establishing family- uncertainty, for example, ACP may
driven, value-based care as the Advance Care Planning involve a birth plan outlining family
palliative care team journeys with goals for a variety of potential
In the ideal form, pediatric ACP scenarios before, during, and after
patients and families facing an
addresses SDM before a clinical and birth.45,46 For adolescents and
uncertain future that may include
emotional crisis and is offered for all young adults, ACP may be
death. How the patient is involved
in this rapport building varies patients with a life-threatening incorporated into discussions about
depending on the patient’s age and illness. ACP requires the clinician, transitioning out of the pediatric
abilities. Models of palliative care family, and patient (when health care system.
exist from the perinatal setting33–35 developmentally appropriate) to
to working with adolescents and review the natural course of the Parents report feeling more
young adults.36–38 Even when early disease and predicted quality of life prepared for final days if ACP
involvement of a palliative care while exploring patient and family discussions have occurred and are
hopes, worries, goals, and values.43 less likely to have decisional
team has not occurred (or was not
ACP discussions should be regret.47 However, barriers to such
possible), engagement during end-
documented in the medical record discussions still exist, particularly
of-life care can still add value for
and have unique billing codes. A related to clinician concerns about
patients, families, and staff.
comprehensive advance care plan parental readiness.48,49 Clinicians
Shared Decision Making may be reluctant to challenge
may include legal forms (eg,
families’ hopeful patterns of
As noted in the AAP policy advance directive or durable power
thinking; however, research with
statement on forgoing life-sustaining of attorney for patients 18 years and
parents reveals duality, parents can
therapies, when clinicians engage in older), medical orders regarding
remain hopeful and simultaneously
partnerships characterized by life-sustaining therapies, and more
want to prepare for a range of
shared decision making (SDM), it informal planning, to convey the possible outcomes.50
can reduce the often overwhelming goals of care if the child or
burden on children and families adolescent were to become critically Whenever a trigger for ACP is
contemplating end-of-life care.39 The ill. The written advance care plan identified (Table 2), clinicians can
SDM process includes exploring allows for iterative conversations to acknowledge that “we are in a
patient and family values, providing unfold as the clinical course of the different place now” with the
medical information in an patient evolves. patient’s care, and then offer
individualized way, and then
recommending a treatment course
to align with what matters most to TABLE 2. Child or Adolescent and Family Triggers for Initiating or Revisiting Advance Care
Planning
the patient and family.28,40 SDM at
Condition-focused triggers include:
the end of life requires attention to
 Serious fetal diagnosis
cultural and community norms,  A catastrophic injury
religious beliefs, impact on siblings  New diagnosis of a condition with a poor prognosis
and extended family, and prior  When disease-directed treatment is no longer effective
experiences with death. Inclusion of  Incomplete response to escalating medical care or life support
 Disease progression or relapse
the adolescent patient in SDM at the  Increase symptom burden and/or secondary complications
end of life requires a particular  Increasing periods of time spent unwell or in the hospital
skillset.41 The importance of SDM is  Reaching the age of majority and as a component of transition
also heightened for children and Family cues include statements about:
 Wondering what will happen if intensive care is not provided for an infant at birth
adolescents with complex medical
 Not wanting “heroic measures” to be taken
conditions or disabilities, as outlined  Acknowledgment that prior goals may be unachievable
in its own AAP clinical report.42  Change in quality of life
Engaging continuity care clinicians  Concerns about suffering
is key for these patients, as their  The child seeming “not his or herself anymore”
 The death or critical illness of another child known to the family
families may have faced multiple

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 TABLE 3. Key Components of Pediatric Advance Care Planning clarify which resuscitative efforts
 Build a partnership with family should and should not be attempted;
 Discuss prognosis and predictions for the future (2) complete a medical order so that
 Explore the patient and family’s values related to quality of life (recognizing and respecting that the entire treatment team knows
“normal” quality of life is subjective)
 Assess goals and worries and global family strengths, values, and needs how to respond; and (3) document
 Understand family concepts of what it means to be a “good parent”55,112 the discussion in the medical record.
 Articulate the possible treatment benefits and burdens, and weigh the implications of these with Palliative care team involvement has
the patient and family been shown to assist with earlier
 Offer treatment recommendations, including how to respond should treatments become too
and increased documentation when
burdensome, or the patient’s condition deteriorates
 Explore child and family preferences for the final days, such as symptom management, CPR limitations are desired.60,61
resuscitation efforts, and location of death Some team members may
mistakenly believe that orders
limiting CPR also limit medical
regoaling.43,51 The ACP discussion implantable cardioverter management beyond intubation or
requires an awareness of the patient defibrillator. CPR, but they do not.62 It is worth
and family’s communication needs, reiterating that even when CPR
the components of SDM, and the In the last decade, most states have limitation orders are in place,
impact of relevant treatment options adopted physician or medical order clinicians still must address the role
on illness trajectory. There is a for life-sustaining treatment (POLST of other medical evaluations and
growing body of literature or MOLST) forms. The POLST or treatments with patients and
recommending ACP practices in MOLST forms were created to families.
pediatrics, especially for children provide a more encompassing
and adolescents with medical medical order (for more scenarios AS END OF LIFE NEARS
complexity (Table 3).43,52–55 Several than pulselessness or absence of As death nears, consideration should
ACP guides have been studied with respiratory effort) and portability be provided to the preferred place
the adolescent and young adult across settings.58,59 The POLST or of death and, if not engaged already,
population in particular, including MOLST form remains with the the potential role of hospice. Plans
the Lyon Family-Centered ACP patient and alters the need to should be made to identify which
survey, the Respecting Choices reexecute orders across multiple interdisciplinary team members will
interview, Five Wishes, and Voicing health care settings, although the address holistic end-of-life concerns.
My Choices.56,57 wishes expressed in the POLST or In settings without pediatric hospice
MOLST should be reaffirmed when supports, the medical home may be
Code Status Documentation the patient presents in a new called on to address these concerns.
Code status documentation includes medical setting. Although most
a written medical order that states have POLST or MOLST forms, Location of Death
delineates whether cardiopulmonary each state’s form varies in what is Helping children and adolescents
resuscitation (CPR) or intubation included and how they are applied and their families think about
should be initiated in the event of (especially to patients younger than whether home, hospital, or
pulselessness or absence of 18 years). Pediatricians should be elsewhere is the preferred location
spontaneous respirations and the familiar with the laws and practices for end of life is key to meeting their
medical record documentation of within their states and recognize goals of care at this stage.
the discussion. The nomenclature that all such forms may be revised Regardless of the location, the
for these orders includes Do Not or revoked by the medical decision mindset and compassion in the care
Resuscitate, Do Not Attempt maker. delivered to the dying patient and
Resuscitation, Allow Natural Death, family is fundamental.46,63 Although
and Do Not Intubate. Although such If the goal of a comfort-focused end data suggest that adults prefer to
nomenclature offers clear direction of life becomes clear during ACP die at home,64,65 the pediatric data
for very specific scenarios, it does discussions, the clinician may are less definitive.66,67 Some
not encompass the full breadth of recommend protecting the patient children and adolescents and their
considerations, and may leave from interventions like CPR and families elect to be at the hospital
ambiguity for some scenarios, such intubation, which would interfere for end of life for a variety of
as patients with existing with comfort at end of life. If the reasons, including familiarity with
tracheostomy and ventilator patient and family indicate the institution and staff and
dependence or the patient with an agreement, the clinician should (1) concerns about symptom

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 management and support at home. comfort and relief from distressing poorly prepared because of
Dussel et al found that when symptoms, and legacy-building infrequent pediatric patients.74
families had early discussions about activities.31 Depending on local
preferred location of death, the child availability, pediatric hospice The medical home maintains a key
or adolescent was more likely to die services may be provided in patient role for children and adolescents
in the preferred location, and if that homes, in freestanding hospice enrolled in hospice. Primary care
location was in the hospital, the facilities, in hospice rooms or units pediatricians and/or primary
death was more likely to occur within a hospital, or in long-term subspecialists (such as oncologists)
outside of an ICU.68 Even when care facilities. Most hospice care may act as the physician of record
death is likely to occur in a hospital, occurs in the home, with inpatient for the patient receiving hospice
as for a newborn infant with a fatal care reserved for advanced care, maintaining their role as the
condition, families and clinicians symptom management, family provider guiding symptom
should consider which hospital respite, or as a preferred location management and support efforts. If
makes sense, a local community for end of life. Perinatal hospice is the primary care provider or
hospital nearer family, or a referral increasingly available in the United primary subspecialist prefers for a
States and can be a longitudinal hospice physician to take this role,
center with more palliative care
the medical home remains a key
resources. support across the prenatal and
source of information about the
postnatal spectrum.33,70 And
Patients and families may have to patient and family for the hospice
although not all hospice providers
accept that their preferred location team.
feel comfortable caring for children,
of death may not be achievable. they may be more willing to care for
Despite meticulous planning and
Perhaps the equipment needed to adolescents (especially if they are strong in-home support, a
sustain life for the journey home or near adult size). comfortable death at home may be
particular medications needed to
unattainable for a variety of reasons.
maintain comfort or other supports In 2010, a provision of the Patient
Assuming local resources are
for the patient or family are not Protection and Affordable Care Act
available, patients and families
available where a family lives. mandated that Medicaid and the
should know that they can return to
Coordination with the palliative care Children’s Health Insurance Program
the hospital or access a hospice
team, local hospice agency, or finance concurrent care for children
facility for end-of-life care if staying
private duty nursing agencies may and adolescents enrolled in these
home becomes too burdensome.
be able to overcome some of these programs.71 Concurrent care allows
barriers if this is an important for patients younger than 21 years Role for Interdisciplinary Team
family goal. For example, palliative meeting hospice eligibility to receive Distress and suffering can escalate
care or ICU staff may facilitate hospice services alongside life- for the patient, family, and care
ambulance transport for a planned prolonging disease-directed team as end of life nears, and this
extubation, handing off care to home therapies.17,72 These patients are time period may be sharply recalled
hospice staff for the dying process.69 likely to continue to see their by families for years to come.22,75,76
subspecialty medical teams, may The wrap-around support of an
Hospice present to outpatient clinics for interdisciplinary team is needed to
Hospice is a particular form of infusions and transfusions, and may address the physical, spiritual,
palliative care and is both a even be readmitted to the hospital social, emotional, and psychological
philosophy of care and an insurance for treatment. Close partnership needs of the child or adolescent and
benefit, meaning that it may not be between the hospice team, PPC team the family. The PPC team
available to all. In the United States, (if applicable), and subspecialty incorporates the interdisciplinary
licensed hospice agencies provide teams is necessary for smooth expertise of physicians, nurses,
comfort-focused care to patients transitions between settings. Despite social workers, case managers,
with probable life expectancies of 6 this mandate’s potential for spiritual care providers,
months or less if their disease were increasing hospice access earlier in bereavement specialists, child life
to follow its natural course. This a child’s illness course, data suggest specialists, and others who are all
care includes psychosocial and that hospice is underutilized by experienced in end-of-life care.20,31
spiritual supports, medical supports, children and adolescents.20,73 Engaging these supports early is
such as medications and durable Pediatric palliative care teams may important so that patients and
medical equipment, therapeutic provide expert guidance to hospice families can develop trusting
interventions focused on promoting staff in settings where they feel relationships with team

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 members.22,63 For families of goals, and degree of pain and offering the food for comfort or
neonates, this might include suffering77 using the components of pleasure; many infants are
collaboration with the obstetrical SDM outlined earlier. Language is comforted by nonnutritive suckling.
providers who came to know the important; clinicians should avoid
family before birth.33 In settings talking about “withdrawing care” or Many of these decisions are values
without pediatric palliative care or “withdrawing support,” because care based, and there can be different
hospice access, the medical home and support continue regardless. opinions within families and within
may be a patient and family’s best Instead, language should focus on clinical teams about what is “right”
source of wrap-around, forgoing treatments and or “best” for an individual child or
interdisciplinary supports. interventions that do not promote adolescent. Without opportunities
comfort. for reflection and discussion, this
Many patients and families lean can lead to conflict and moral
heavily on their spirituality and faith Clinicians will need to clarify how distress. Early involvement of ethics
at the end of life.23,30 Significant LSMT, such as ventilator support, consultants can be helpful in such
diversity in spirituality and faith medically provided nutrition and scenarios.
practices exists, and teams may hydration, vasoactive medications,
or renal replacement therapies, may Preparing for the Dying Process
need additional resources to
mitigate a family’s spiritual or may not promote the goals of Many families want clinicians to
suffering.23,25,75 Hospital chaplains care as death nears.39 As highlighted prepare them for what their child or
and the family’s spiritual supports in the AAP policy statement on adolescent is likely to experience as
can be engaged to provide support forgoing life-sustaining medical death approaches, and their
in prayer or religious rituals and to treatment, “forgoing LSMT is recollection of their child or
enhance clinician integration of ethically supportable when the adolescent’s death will remain fresh
spiritual perspectives.25,29,30,75 burdens of treatment outweigh the for years to come.23,76 Older
benefits to the child.”39 A helpful pediatric patients may want to know
question to elucidate the shift about the dying process, and failure
PROVIDING CARE IN THE FINAL DAYS
between benefit and burden may be, to address their worries may lead
Intensive supports are often needed “Are we doing this to the child or them to withdraw.80 The approach
in the final days of life, whether the for the child?” to these conversations must be
child or adolescent is in the hospital tailored to the individual patient
or at home. Tasks at this time Decisions to stop tube feeding or and family.22 Some patients and
include reviewing medical intravenous nutrition or hydration families want very detailed
interventions to limit or stop, for a dying child or adolescent are information shared early; others
talking with families about what ethically equivalent to decisions to want only “big picture” information
dying is likely to look like, attending forgo other LSMT, although they can as death nears.81 Simply asking
to symptom management, and feel different,78 given cultural norms “What are you worried about?” or
discussing postmortem care, and emotions around providing food “How much information is helpful at
including questions about organ and and nutrition to children. The 2009 this time?” or “Would it be okay to
tissue donation. AAP report on forgoing medically talk about what may happen over
provided nutrition and hydration in the coming days?” is a good starting
Plans for Life-Sustaining Medical children outlines situations in which
Treatment point. A patient or family may
the burden of medically provided decline the discussion but will know
Life-sustaining medical treatments nutrition may outweigh the benefit, they have permission and space to
(LSMTs), such as mechanical including when they only prolong or talk about it another time. Note that
ventilation, can be acute supports add morbidity to the dying process. children and adolescents become
for children with brief illnesses or A study with parents who opted to obtunded in the final days to weeks,
chronic supports for children and forgo artificial nutrition and so earlier conversations should be
adolescents with medical hydration found that parents were had with those patients who want to
complexity. As prognosis worsens, satisfied with their decision and talk about the dying process.
clinicians must recognize when greatly benefited from clinician
these technologies may be assurances that the patient was Most families value straightforward
prolonging dying. Families dying of their disease, not from lack and kind communication at the end
appreciate clear recommendations of nutrition.79 The decisions to forgo of life.23,25,28,81,82 They want to
that account for their child or medically provided nutrition and know what physical changes they
adolescent’s diagnosis, prognosis, hydration should not preclude may see, what symptoms are

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 expected, and how those symptoms adolescent’s body naturally knows the anxiety, agitation or delirium, fatigue,
(especially pain) will be managed. process it must take to die. nausea or vomiting, and poor
Clinicians should highlight the appetite.84,85 Bereaved parents report
uncertainty about the time until Symptom Management feeling like their child or adolescent
death, even following withdrawal of At end of life, a child or adolescent’s suffered “a lot” or “a great deal” from
technology or noninitiation of diagnosis, age, and ability to at least 1 symptom during the last
neonatal resuscitation for preterm communicate will all play into their month of their life and that the
infants.69,83 Giving families ability to express distress and into treatments attempted were often
guideposts such as “minutes to the clinician’s ability to interpret it. unsuccessful.85 Families of infants
hours” or “hours to days” can help. There may be variability between may worry that pain or suffering is
Some families are also ready to talk families and their perception of underrecognized because of lack of
about autopsy or funeral planning distress about the same symptom, overt signs.86 Pharmacologic and
before death.75,76 especially as the patient becomes nonpharmacologic techniques can be
obtunded close to death.82 This can combined to reduce suffering and
Given how emotionally difficult these be explored with questions like mitigate adverse effects. Opioids and
conversations can be for families, “Please tell me if anything you are benzodiazepines are useful classes of
clinicians often need to revisit end-of- seeing makes you worried.” Parents medications to address symptoms at
life guidance more than once.76 The and some patients may benefit from the end of life for children of all ages.
need for repetition does not equate to hearing which physical signs are
denial or misunderstanding, but part of the natural dying process Some families and clinicians may
simply family distress. Such distress (Table 4) and which suggest pain or worry that medications will cause
may increase as death approaches and distress, such as moaning, oversedation or hasten death, while
may be verbalized in requests such as restlessness, facial grimacing, and other families and patients may
“Please do something” or “Can’t you brow furrowing. These explanations request medication administration
help my child?” These statements facilitate symptom management to expedite the dying process.87 The
reflect intense emotion and are not partnership between the family, who balance of adequate symptom
necessarily requests to alter plans of may be with the child or adolescent control with sedation side effects
care. Clinicians can recognize and consistently, and the clinical team, should be routinely assessed and
respond to the family’s emotion (eg, “I who may only be present discussed in relation to the patient
can only imagine how difficult this is intermittently. and family’s goals. Whenever
for you.”) and reassure families that possible, the preferences of children
the team is “doing everything” to Most pediatric research regarding and adolescents regarding symptom
ensure their child or adolescent’s end-of-life symptoms is from control and sedation should be
comfort and peace. Families may find it oncology, with most common elicited and prioritized. Any
helpful to be told that their child or symptoms being pain, dyspnea, disagreements that occur between

TABLE 4. Common Signs and Symptoms Naturally Occurring at End of Life

Examples of Anticipatory Guidance:“As your child nears death,
Sign or Symptom he or she … ” Potential Approaches
Decreased appetite “ … will probably not be hungry or even thirsty because … ” Swabs or moisturizers for dry lips and mouth
Decreased alertness “ … may sleep a lot, especially in the final days because...” Child may still hear family, even if eyes closed
Changes in breathing: slow, “ … may have changes in breathing that are generally not Distressing respiratory symptoms may improve
fast, apnea uncomfortable, though we will have medicines to give him with intermittent or scheduled opiates
or her if we are worried about comfort.”
Noisy breathing because of “ … will swallow less, and the saliva in the back of the throat Positioning child to promote drainage; a drying
oral secretions may make a noise that may sound uncomfortable to us agent can be used if positioning ineffective
but will not bother him or her.” Decreasing or turning off any artificial nutrition
or hydration the child is receiving
Skin changes “ … will begin to feel cooler and may start to appear pale or Monitor for signs of distress and provide
even slightly blue.” reassurance that these changes are not
uncomfortable to the child
Cardiac insufficiency “ … will have slower and maybe irregular heart rate, and Monitor for signs of distress and provide
weaker pulses.” reassurance that these changes are not
uncomfortable to the child
Loss of bowel and bladder control “ … may not hold his or her urine or stool, so we will use a Prepare supplies: diapers, towels, absorptive
diaper to keep him or her comfortable.” pads, etc

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 patients younger than 18 years and donors be informed of the option to inform the family that their child or
their families about these donate, typically by a trained adolescent has died. Clinicians
preferences may be addressed “designated requestor.”88 This should avoid euphemisms such as
through involvement of medical recommendation permits the “moved on” or “passed,” but should
home providers, palliative care uncoupling of decisions about offer an expression of condolence (“I
providers, or ethics consultants. donation from decisions about am sorry for your loss … ”) and
medical goals of care, striving to allow time and space for the family
Medications at the end of life can be avoid any perceived or real conflict to ask questions.90
safely, ethically, and legally titrated of interest among medical teams.46
in proportion to symptom burden, Death Certificate
even if the dosing range exceeds AFTER DEATH The death certificate is the
typical parameters (eg, for patients
Once a child or adolescent dies, permanent record of death and must
with baseline opioid tolerance). At
clinicians have essential roles in be completed in a timely manner, as
times, the medications and doses
hospital- or state-required it is necessary for burial and
needed for symptom control may
postmortem processes. They also settlement of personal estates.
shorten the time to death because of
face a new phase of family support Documentation details are governed
their impact on sedation level and
respiratory drive; such risk may be and should anticipate debriefing by state statutes, so clinicians must
acceptable given the goal of comfort needs of the staff, including be familiar with local requirements.
and symptom management. members from the medical home. Clinicians must document the cause
However, prescribing medications of death (such as prematurity or
Death Pronouncement
with the intent to hasten death is hypoplastic left heart) as opposed to
unethical and illegal. Such requests Declaring the time of death can be the mechanism of death (ie,
for intentionally hastening death emotional for the family and may respiratory failure or hypotension)
offer an opportunity for further serve as a milestone that helps them as public health data are compiled
conversations to explore what transition through grief. Clinician from death certificates and used for
concerns triggered the request. empathy and timely availability have statistical and research purposes.91
a long-lasting impact on a family’s
Organ and Tissue Donation grieving process.63,89 The Autopsy
As end of life nears, many patients declaration of death is ideally done All families should hear of the
and families actively search for by a clinician familiar to the family; potential benefit of a full or a
meaning and purpose.25 Framing any uncertainties about local rules limited autopsy; some centers offer
organ and tissue donation in this regarding authority to declare death virtual autopsy. Families may pursue
context resonates with some should be resolved as early as an autopsy for a variety of reasons.
adolescents and families. For those possible. The clinician should
Perhaps a child or adolescent had an
who want to learn more about explain to the family that they need
atypical illness course or an
organ and tissue donation in to assess the child or adolescent.
underdetermined diagnosis; families
advance of an anticipated death The examination itself includes
may hope that an autopsy will
(even prenatally), clinicians should auscultation to confirm the cessation
provide answers. In the case in
contact their regional organ of breathing and absence of heart
which a child’s death follows an
procurement organization and sounds and palpation to confirm
unexpected trajectory, families and
connect them with the family to loss of carotid or radial pulse.
Supplementary testing to confirm no clinicians may desire an autopsy for
review questions and put a plan into
pupillary light reflex or response to more information about how
place. Some patients and families
noxious stimuli (such as sternal rub) medical care did or did not impact
may also be interested in hearing
may be considered, especially if the the outcome. Or in cases of neonatal
about options for donating tissue for
death was unwitnessed. Declaration death, an autopsy could provide
research.
of death does not need to occur at information that may inform the
For more about the regulations and the precise moment of death; if the family’s decisions about future
process of organ donation, clinicians family is holding the patient or amid pregnancies. Some families see
can refer to the AAP policy intense bonding or emotion, defer autopsy as a contribution to
statement “Pediatric Organ Donation the death examination until the research and science and a means of
and Transplantation,” which family appears ready. Once death is building their child or adolescent’s
highlights the federal mandate that confirmed, the clinician should legacy. One pediatric multicenter
all families of potential organ mentally note the date and time, and study reported that 25% of

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 nonmedical examiner cases TABLE 5. Options for Memory-Making sending letters of condolence,
underwent autopsy.4  Participating in bedside care (eg, bathing) maintaining contact by phone or e-
 Hand or footprints or molds mail, or follow-up visits. Clinician
Clinicians must be aware of local  Fingerprint charms
attendance at funerals or memorial
 Locks of hair
regulations and procedures services is generally welcomed,
 Artwork
regarding autopsy, including  Bereavement photographs although clinicians may have to
documentation of consent, timing,  Videos arrange for clinical coverage or use
the details of a full versus limited  Audio recording of Doppler heartbeat
personal time to attend.96
autopsy, and how to accommodate  Printed heart rhythm strip
 Religious or cultural rituals Recommendations for written
particular family requests (ie, to
 Memory boxes with mementos condolences include expressing
retain tissues for research). There
genuine sympathy, sharing a
are circumstances in which medical
memory or experience about the
examiner or coroner involvement is
mandatory, and autopsy may be dressing the child or adolescent, and child or adolescent who died, and
required by law. receiving support from clinicians. reminding the bereaved of their
strengths.97,98
When autopsy results become A team member should be identified
available, a clinician familiar to the to help families navigate
Staff Debriefing
family should offer to review the postmortem care, including funeral
results in the family’s preferred planning, gathering up of the The impact of a child or adolescent’s
setting (in person, via telephone, or patient’s belongings, leaving the death extends to the entire inpatient
through e-mail).46 This allows the physical space of the hospital or and outpatient medical team that
family the opportunity to learn the coordinating having the body cared for that patient and family
autopsy findings and gives space for transported from the home, and throughout the arc of their illness.
any lingering questions about the disposing of or returning home Although each clinician experiences
circumstances surrounding their medical equipment.75 A team the death through his or her own
child or adolescent’s illness and member should also notify key care belief system and experiences, there
death.92 team members, such as the primary may be benefit to a collective
care pediatrician or primary honoring of the patient’s death.
Supporting Families specialist. With the family’s Routinized pauses just after the
Families’ needs immediately permission, staff should plan to death and staff debriefings in the
following a child or adolescent’s check in during the days hours to days following are strongly
death vary across time and setting. immediately following the death to encouraged.99–101 Ideal debriefings
Sometimes the needs are conflicting, assess coping and offer support.93 include trained facilitators and are
such as wanting private time alone Many families benefit from options interdisciplinary, inclusive, and
and wanting support on hand; or such as a planned follow-up meeting voluntary.102,103 The intent is a safe
wanting to remain with their child with the medical team or place for staff to reflect on their
or adolescent and needing time for participating in an institution’s own emotions, affirm the normalcy
self-care.25 Bereaved parents memorial service.
of team emotions, honor the patient
describe an altered sense of time
Funeral Attendance and Letters of and family, and feel able to continue
and difficulty processing information
Condolence to care for patients.75,104,105 Such
about next steps.25,93 The length of
Many bereaved families attest to the debriefings are especially important
time families are allowed with the
clinicians who “become like family” in the setting of a prolonged
body of their child or adolescent in
to them.25 Families value knowing hospital course or a hospitalization
a hospital varies between
institutions and states; the time that their child or adolescent is complicated by moral distress and
allowed may be longer in home remembered and honored by might include facilitation by ethics
hospice. Families may benefit from clinicians, even after their consultants. “Resilience in the Face
hearing about the physical changes death.89,94,95 Clinician efforts can be of Grief and Loss: A Curriculum for
to anticipate in the hours after particularly important to families of Pediatric Learners” was created by
death. The time after death can be neonates, as the medical team may the AAP to give clinicians access to
spent creating keepsakes to enhance have spent more time with the evidence-based tools aimed at
the legacy building and memory infant than any extended family or supporting families, colleagues, and
making that was initiated before loved ones. Supportive follow-up themselves during these difficult
death (Table 5), bathing and may include attending funerals, patient care experiences.106

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 Family Bereavement Care CONCLUSIONS mechanical ventilation or
The National Academy of Some children and adolescents die medically provided nutrition and
Medicine (formerly the Institute unexpectedly and suddenly, and hydration; clinicians should help
of Medicine) and the AAP have others die after years of serious families reconcile how these
emphasized that bereavement illness. Early advance care planning therapies align with the goals of
care should be standard of care is beneficial, and the final days and care at the end of life. Clinicians
for grieving families and is a weeks of life offer additional and families may consider
public health priority. 2,20 The opportunities for shared decision involvement of an institution’s
bereavement period is defined as making and revisiting goals of care. ethics committee if there are
the adjustment that follows a Familiarity with the medical, disagreements over the best
person’s death; grief is the emotional, spiritual, and logistic course of action.
complex cognitive, emotional, and elements of end-of-life care allows 5. Code status documentation can
social distress resulting from the pediatrician to be a comforting be an important, although not
bereavement. 76 The death of a guide for these families. mandatory, preparation for end-
child or adolescent puts parents Collaboration with pediatric of-life care. Do Not Resuscitate
and siblings at increased risk for palliative care and hospice resources orders are limited to specific
adverse physical and emotional can support families and staff during treatments (eg, cardiopulmonary
sequelae. Families may feel the pediatric end-of-life care. resuscitation) in the event of a
loss of connection to their second cardiopulmonary arrest and
family, their child’s medical team, should not be assumed to reflect
RECOMMENDATIONS
and can benefit from the ongoing other treatment goals.
support of clinicians who solicit 6. Potential options for the
1. Palliative care ought to be location of the child or
any lingering questions about the
engaged early, when possible, to adolescent’s final days or hours
death or offer targeted
facilitate communication and should be discussed with the
supports. 63,89,75,107 Families of
decision making with families of patient and family; collaboration
infants who died soon after birth
children and adolescents with with a pediatric hospice may
may struggle with feelings that
serious illnesses. Advocacy to expand the available options.
their infant’s life was “not real,”
expand pediatric palliative care 7. Clinicians should provide
and extended family or friends
and pediatric hospice availability families with straightforward
may not know how to offer
support. Family participation in is important to broadening these anticipatory guidance about the
events organized by medical supports for children, families, end of life: the treatments and
teams, such as yearly memorial and clinicians within children’s monitoring that may or may not
services or remembrances of a hospitals and the community. be continued, the physical signs
child’s birthday or Mother’s and 2. Shared decision making of dying, and postmortem care of
Father’s Day can offer some regarding pediatric end-of-life the patient and of the family.
help. 108 care requires a partnership with 8. Families value support from
children, adolescents, and clinicians during and after the
Grief does not have a finite timeline families. They should be dying period; clinicians should be
and is an adaptive process. encouraged to share their goals ready to offer guidance about
Bereavement supports provided by and preferences so clinicians can autopsy, tissue and organ
hospices typically end after 1 year, guide choices that account for the donation, funeral planning, and
although families likely continue to patient and family’s wishes and bereavement support.
need support for years to medical needs. 9. Pediatric death can impact the
come.72,109 The AAP clinical reports 3. Pediatric advance care planning interdisciplinary team; clinicians
“Supporting the Family After the ideally begins soon after a serious should be familiar with local
Death of a Child” and “Supporting diagnosis and is then revisited as resources for debriefing.
the Grieving Child and Family” offer the patient’s condition, the
guidance to pediatricians.110,111 available treatment options, and Lead Authors
Components of bereavement care the goals of care evolve. Jennifer S. Linebarger, MD, MPH,
may include parent-to-parent 4. Families may struggle with FAAP
supports, online bereavement decisions about life-sustaining Victoria Johnson, DO, FAAP
groups, or grief counseling. medical therapies, such as Renee D. Boss, MD, MHS, FAAP

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 Section on Hospice and Palliative Liaisons
Medicine Executive Committee, ABBREVIATIONS
Erin Rholl, MD, MA, FAAP – Section
2021-2022 AAP: American Academy of
on Pediatric Trainees
Jennifer S. Linebarger, MD, MPH, Toluwalase Ajayi, MD, FAAP – Pediatrics
FAAP, Chairperson American Academy of Hospice and ACP: advance care planning
Renee D. Boss, MD, MHS, FAAP Palliative Medicine LSMT: life-sustaining medical
Christopher A. Collura, MD, FAAP Blyth Lord, EdM – Parent Advisory treatment
Lisa M. Humphrey, MD, FAAP Group MOLST: medical order for life-
Elissa G. Miller, MD, FAAP sustaining treatment
Conrad S. P. Williams IV, MD, Staff POLST: physician order for life-
FAAP Carolyn Lullo McCarty, PhD sustaining treatment
PPC: pediatric palliative care
SDM: shared decision making

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