Congenital disorders
Supporting the Family After the Death of a Child or Adolescent
Whether death occurs in the context of a chronic illness or as the sudden loss of a previously healthy infant, child, or adolescent, the death of a child is a highly stressful and traumatic event. Psychosocial support for families after the death of a child embodies core medical values of professional fidelity, compassion, respect for human dignity, and promotion of the best interests of a grieving family. The pediatrician has an important role in supporting the family unit after the death of a child through a family-centered, culturally humble, trauma-informed approach. This clinical report aims to provide the pediatrician with a review of the current evidence on grief, bereavement, and mourning after the loss of a child and with practical guidance to support family caregivers, siblings, and the child’s community. Pediatricians have an important role in helping siblings and helping families understand sibling needs during grief. Ways for pediatricians to support family members with cultural sensitivity are suggested and other helpful resources in the community are described.
Grief reactions may include waves of sadness or sorrow, anguish, anger, emotional numbness, anxiety, and guilt for caregivers and siblings.5,6 Because of the unpredictable and intense nature of grief, these emotions may be experienced less like waves and more like tsunamis by a grieving family. Grief impacts physical, existential or spiritual, psychological, social, cognitive, and behavioral domains.7 Grief is a natural reaction to the loss of a loved one that is unique to each individual and family, and it is important not to pathologize it, particularly in the early phases.8 Trauma can complicate grief, warranting attentiveness to trauma symptoms as well as grief symptoms. Families are often in need of both practical and emotional support at each stage of their grief journey.9 The pediatrician and the pediatric practice can be an important source of support and linkage to additional community resources as indicated.
A pediatrician can support families after the loss of a child by being present for the family in the time surrounding loss. Hospital staff should consider suspending visitor restrictions to accommodate family members being with the child during the time of death and surrounding death. The family may benefit from a private space and additional time to remain with their child and welcome loved ones (such as siblings or grandparents) after the death. Pediatricians may recognize the child by name and acknowledge the family’s grief. Depending on the relationship with the child and family, a pediatrician may consider inquiring about the family’s traditions for remembering loved ones, verbalizing ways that the child will be remembered, and considering ways caring for the child or family may impact future care efforts. A quiet presence and actively listening ear may also be appropriate. Expressions of sympathy are always appropriate even when there is concern for malpractice (the American Academy of Pediatrics policy statement on disclosure of adverse events in pediatrics10 serves as a further guide for conversations contextualized to scenarios of medical liability).
The timing of conversations about an autopsy requires personalization for each family and the circumstances surrounding the child’s death. Suggestions to improve autopsy discussions include having a trusted professional sensitively broach the topic through preparatory guidance and education.11,12 Some bereaved caregivers report that having a first conversation about the clinical, emotional, or research domains of an autopsy before death would help with decision-making.13 The pediatrician may consider obtaining a copy of the autopsy report and offering to review it with the family to help discern how much or how little information would be preferred, to interpret the medical language, and to keep the lines of communication open. Follow-up conversations regarding autopsy results provide care teams the opportunity to create a safe space for processing the medical facts surrounding the child’s death while supporting emotions and remaining available for questions.
In the initial days after the child’s death, families will be faced with practical decisions to be made regarding the final disposition of the child’s body, funeral or memorial plans, communicating news of the child’s death with family and friends, and managing activities of daily living for themselves and any surviving children. The preferences of adolescents to serve as organ donors as they indicated at informed consent times, such as on their driver’s license, should be honored.
Families will have varying levels of social support networks.14 The pediatric practice can be helpful in reminding families about the importance of reaching out to resources in their lives, such as clergy, family, friends, neighbors, the child’s school community, work colleagues, medical providers, grief counselors, and others either in-person or via telehealth modalities. These resources are the “front line” of support for families and can be extremely helpful in managing the initial phase after the death.15 Pediatricians practicing in areas with significant gaps in support resources may wish to foster a staff member becoming familiar with online or written grief resources (see Resources section for a starting list) and access to telehealth subject matter expertise.
As the weeks and months after the child’s death pass, families absorb the inevitable shock of the death and move into new phases of their grief that are more emotionally laden and existential.16,17 This process is rarely linear and instead occurs via a waxing and waning of experiences and an evolution of emotions over time. Pediatricians can be helpful in preparing the family to expect changes in their reactions to the child’s death over time and to expect that it will be a long and difficult process during which it will be important for them to be emotionally gentle with themselves and each other.18 It is during this time that some families are interested in being connected to bereavement support systems. The array of grief supports that are available is unique to each community. Hospitals, hospice and palliative care programs, funeral homes, social workers, community centers, support groups, and organizations focused on chronic illness can be excellent sources of information on bereavement support offerings.
Some communities experience disproportionate burden in the type of death a child experiences. In 2019, Black youth had a firearm mortality rate 4.3 times higher than that of white youth and a firearm homicide rate over 14 times higher than that of white youth.19 Public health disparities in the burden of preventable deaths warrant consideration of strategic policy, coordinated advocacy, and increased access to support specific to particular types of death within communities. It can be helpful for pediatric practices to maintain a list of advocacy groups, support services, and bereavement resources for families. There are also online resources to include diagnosis-specific organizations (muscular dystrophy, sickle cell disease, etc) that some caregivers may prefer to access, rather than attending in-person supports.
Grief theories have matured to recognize that grief is not a linear process that goes through predictable stages.20 Rather, the different emotions associated with grief, such as denial, depression, anger, bargaining, and acceptance, may appear at any time and with varying combinations in different individuals and families. It is important to recognize that not all grief is expressed in the same manner or timeline. The diagnosis of “prolonged grief” is a formal diagnosis according to Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision criteria21 and entails loss over a year (may be longer based on social, cultural, or religious norms) with at least daily occurrence of 3 of the following symptoms during the prior month: identity disruption, marked sense of disbelief about the death, avoidance of reminders, intense emotional pain related to the death, difficulty with reintegration, emotional numbness, feeling that life is meaningless, and intense loneliness.22 It is important to stress that sibling and caregiver grief does not carry a predictable timeline and that care should be taken to not pathologize continued grief in caregivers of children who have died, especially when considering grief after the death of a child.23 Occasionally, the grief reaction causes continued or prolonged functional impairment or intense emotional suffering, including not being able to sleep and eat, work, care sensitively for their surviving children, maintain or regain social connections, and imagine a future. In these situations, referral to professional support, such as counseling, is indicated.24,25 Consider early counseling for surviving siblings to address survivor’s guilt about being alive (particularly pertinent in acute causes of death occurring after the family experienced a shared traumatic event such as a natural disaster, gun violence, motor vehicle crash, etc).
In some communities, there are grief counselors specially trained to support grief processes. Many mental health specialists (psychiatrists, psychologists, couples and family therapists, social workers, and counselors) have some foundational knowledge in supporting people through the grief process and can assess the extent to which there is a need for more specific mental health focused interventions. In resource-limited settings, telehealth support options may be considered. The physician should recognize when the grieving process has started (realizing anticipatory grief often begins before the child’s actual death for families experiencing the loss of a child from a chronic or prolonged terminal illness) and make a careful suggestion to the family about a counselor while remaining sensitive to the family’s preference on the timing and acceptance of counseling support.
Family members cannot be expected to “move on” or “get over” the death of a child; instead, families benefit from receiving compassionate and comprehensive support as they attempt to adjust to the physical absence of their child while maintaining a sense of continued connection.26,–28 The process of living with the grief of losing a child has been described by bereaved families as learning to live with an empty seat at the table and a hole in the heart.29
Racial and socioeconomic disparities in health outcomes and mortality exist for many pediatric chronic illnesses, including cardiomyopathy30 and childhood cancer,31 among others.32 Cancer is the leading disease-specific cause of death in older children and adolescents.2
Congenital and chromosomal diagnoses are the leading biomedical causes of death for children ages 0 through 4 years. Grief often begins at diagnosis for families of children born with congenital diagnoses. Improved understanding about genetic transmission of some diagnoses has revealed unique grief support needs for families who may experience guilt surrounding heritable conditions or face multiple losses within one family unit.33
Pediatric palliative care represents an essential early intervention to support quality of life for children, to help families find meaning in each day, and to offer a safe space for processing emotions and existential concerns. The palliative care team may serve as an additional form of interdisciplinary support specialized in grief principles and in helping to connect the family with additional resources, such as hospice services. For pediatric patients with an anticipated survival of 6 months or less if the diagnosis were to take a natural course, enrollment in the hospice benefit would avail continued curative or disease-directed treatments (concurrent care). Hospices are required to provide a minimum of 1 year of bereavement support after death occurs.
Anticipatory grief may occur before an expected death occurs.34 The “anticipatory” descriptor applies to the timing of grief before death and does not necessarily translate into a caregiver feeling more prepared for or accepting of the child’s death.35 In the setting of a child’s illness, parental grief often begins long before the actual moment of death as part of ongoing adaptation to daily losses. Grief fluctuates throughout the illness and wellness trajectory as the child’s condition changes over time, warranting early support for families.36 A family experiencing the death of a child with a chronic condition may have already experienced a significant amount of chronic grief before the child’s death. Ambiguous loss is a type of loss that occurs when a loved one is physically present but increasingly absent (because of illness trajectory, decline in alertness, or psychologic or developmental regression) and, thus, grief is experienced as perpetual and painful.37,38
When a child or adolescent’s death results from a chronic illness or complex medical condition, it is likely that the pediatrician and other members of the care team have been involved in the patient’s care and may have a long-standing relationship with the family. Although the family may have been medically advised to anticipate a child’s shortened life span because of the medical condition or prognosis, the weight and profound heaviness of grief at the time of death is not lessened or diminished. Depending on the duration and proximity of the therapeutic relationship with the family surrounding the child’s illness or disability, the family also may suffer from the loss of the relationship with the pediatrician and other members of the care team and risks feeling abandoned. Under these circumstances, the pediatrician’s continuing involvement with the family may be especially meaningful and a form of professional fidelity.
Unexpected deaths often can cause sudden, intense feelings of anguish for families with significant lasting effects.39,40 Sudden and unexpected infant deaths, including sudden infant death syndrome, accidental suffocation deaths, and ill-defined deaths, represent 3400 deaths per year in the United States and are the largest category of sudden and unexpected deaths in childhood.41 Motor vehicle crashes were cited as the leading cause of pediatric deaths for over half a century.42 Beginning in 2017, firearms now represent the number one cause of death among persons ages 1 to 19 years.43 Overall firearm-related fatalities involving children and adolescents in the United States increased 29.5% between 2019 and 2020.42 Drug overdose and poisoning increased by 83.6% in this same time frame among children and adolescents, now representing the third leading cause of pediatric death.42
Pediatricians may not immediately be aware of the death in sudden circumstances. If there is a brief period of survival after the event, the pediatrician may be involved; however, unexpected deaths often occur at the scene, in transport, the emergency department, or in the ICU. In these situations, the emergency or critical care physician can inform the pediatrician of the death, including the details of the last hours of care. These details will often be what haunts the caregivers’ thoughts in the months after the death.44,45 Pediatricians may hear about the death of a child or adolescent who was one of their patients from the news or community members. Pediatricians may be asked to complete the child’s death certificate. Even if the pediatrician was not involved in the care of the child at the time of the death, they can still play an important role in supporting the family.
When death occurs by suicide46 or the use of alcohol or drugs,47 the emotions experienced by caregivers can be particularly strong and complicated. When death occurs in the context of medical error or malpractice, mistrust of the health care system may further complicate acceptance of hospital-relevant bereavement support. Homicide or injuries that are caused by negligence, such as by drunk driving, often produce intense anger and may overwhelm a prior sense of justice, security, or peace. Pediatricians may consider additional thoughtfulness toward families’ mourning or guilt experiences after sudden and unexpected death as law enforcement, death scene investigation, and courts may be involved. Pediatricians can be prepared to help connect families in these complex circumstances to specialized help to include focused support groups and professional counseling services.48,49 If the cause of a child’s death is concerning for nonaccidental trauma, special considerations beyond the scope of this statement must be addressed.50,51
In honor of children as vulnerable community members, pediatricians maintain a duty to continue advocating for public health measures that protect the lives of children and adolescents and subsequently decrease the number of grieving families.
Research has shown that how caregivers cope with the loss of a child has a direct correlation to how well their other children will fare over time.62,–64 Caregivers will understandably feel the burden of managing the normal responsibilities of caregiving, helping their surviving children manage grief, and at the same time processing their own grief. Some caregivers may start to have excessive worry about the well-being of the surviving children. Some report that their grief is so overwhelming that they feel unable to provide the surviving siblings with the attention they need. Thus, helping caregivers get support helps the surviving siblings.65
Parts of the sibling’s routines, such as school or sports or community events, can provide some familiar structure to the sibling’s day in the midst of family change and transition. Returning to routines can help children feel more safe and secure; spending time with family in fun activities or routine activities they previously enjoyed does the same. It might also be important, depending on the circumstances of the child’s death, for parents to reassure the child they are safe, that their sibling’s death is not their fault, and that the parent and trusted adults are there for them. Children often process feelings through play and so families should recognize that playfulness is not disrespectful or failure to grieve and instead may be cherished as a restorative part of life even during loss. Creating space where children can talk about their sibling, recall memories of their sibling, and look at pictures of their sibling can be helpful. Listening in an attuned way and validating the sibling’s feelings represent important components of trauma-informed care for siblings.
The pediatrician is in a unique position to screen for grief impact and provide direct support to the siblings, both immediately after the child’s death and in subsequent years as they follow and care for the siblings’ health.66 The bereavement experience of siblings may be long lasting.67,68 The loss of the sibling is absolute, and its effect ripples through virtually every aspect of the siblings’ lives: family, school, social interactions, extracurricular activities, and inner emotional life. Grief may present as anger outbursts, sleep disruption, behavioral issues at school, and/or social withdrawal.69 It is also common for children to move back and forth frequently between expressions of grief within a single day, and even within a single hour.70,71 Research has shown that during the first year after the child’s death, there are increases in anxiety, depression, and illicit substance use in the siblings before returning to baseline.72,73 Adolescent-specific bereavement needs may be additionally exacerbated by the high level of identity transition already occurring as part of adolescence.74,75 An extended period in which an adolescent sibling loses interest in daily activities and events, is unable to sleep or fears being alone, repeats statements of wanting to join the dead sibling, withdraws from peers, experiences a sharp decline in school performance, or refuses to attend school warrant heightened concern.
Initially, and especially if the death of the child has been sudden and unexpected, the caregivers may be overwhelmed by their own grief and, thus, less able to tend to each surviving sibling’s physical and emotional needs. Younger children requiring more intensive day-to-day care for things such as feeding and clothing may be especially at risk, but the needs of older children, who may be experiencing untended emotional needs, also warrant attention. Regardless of the age of the siblings, care from extended family or close friends can be a short- or medium-term bridge while the caregivers absorb the initial shock. When family or friends are not available, other social services may need to be recruited to provide support.
The way siblings respond to the death of a sibling of any age varies depending on the developmental stage of the sibling, including how they understand the concept of death. This response changes as the sibling matures (Table 2)76 and may also be influenced by the personality of the sibling, the sibling’s preexisting mental health, family life stability after the loss, how the sibling’s needs are met, parental coping styles with stress, and any experience with prior loss.77 Additional issues relevant to siblings include survivor guilt, overprotection of the surviving child, the “replacement” or subsequent children, parentification of the surviving child, becoming an only child, new responsibilities for the surviving child, and risk of parent-child role reversal.78,79 If the death is attributable to a genetic diagnosis and the sibling has not been tested, the pediatrician can discuss testing with the family with sensitive timing. Pediatricians may caringly watch for and even inquire about surviving sibling experiences as part of pediatrician-family interactions (Table 3). Pediatricians can also provide grieving parents with anticipatory guidance on how to identify and address present and future grief reactions that can occur among their surviving children.
Sibling Developmental Stage, Concept of Death, and Supportive Interventions
| Age | Development | Concept of Death | Supportive Interventions |
|---|---|---|---|
| Infancy: 0–2 y | • Sensorimotor; • dependent |
• Death is perceived as separation or abandonment | • Maximize physical relief and comfort through sensory input (eg, touch, rocking, sucking); • provide comfort with familiar people and transitional objects (eg, toys); maintain routine |
| Early childhood: 2–6 y | • Preoperational; • imaginative and intuitive |
• Highly attuned to caregivers’ emotional status and responsiveness; • death is reversible or temporary; • may equate death with sleep or long journey; • may have magical thinking about death; • may associate death with the sorrow of others |
• Minimize the child’s separation from usual caregivers or provide reliable and consistent substitutes; provide routine and stability; offer reassurance in simple terms; • ask open-ended questions about feelings and experiences; acknowledge sadness; • dispel misconceptions about death as punishment; • provide concrete information about state of death (eg, a “dead person no longer breathes or eats”); • families may consider sharing language and concepts from their spiritual or faith tradition (as relevant) |
| Middle childhood: 7–12 y | • Concrete; • logical |
• Death is irreversible but is unpredictable; • aware that death is personal and can happen to them; • may be interested in what happens after death; • can understand the biological essentials of death (heart stops, etc) |
• Foster opportunities for questions and answers; listen actively; • may benefit from specifics about the illness; reassurance that they did not cause the death; • maintain the child’s access to trusted loved ones and routines to include opportunities for fun and play; • foster sense of connection and validate feelings; encourage remembering the sibling who died and offer opportunities to talk about memories and feelings |
| Adolescence: 13+ years | • Identity formation; • abstract considerations with advancing logical functions |
• Death is irreversible, universal, personal, but distant; • has the ability to develop physiologic and spiritual explanations of death |
• Reinforce formation of meaning, purpose, hope, and value; • allow expressions of anger; • provide privacy while also remaining available; • maintain access to peers; • acknowledge and validate feelings to include sadness, guilt, confusion, etc; • foster routines and also allow for moments of fun together (it’s okay to still try to enjoy life) |
| Age | Development | Concept of Death | Supportive Interventions |
|---|---|---|---|
| Infancy: 0–2 y | • Sensorimotor; • dependent |
• Death is perceived as separation or abandonment | • Maximize physical relief and comfort through sensory input (eg, touch, rocking, sucking); • provide comfort with familiar people and transitional objects (eg, toys); maintain routine |
| Early childhood: 2–6 y | • Preoperational; • imaginative and intuitive |
• Highly attuned to caregivers’ emotional status and responsiveness; • death is reversible or temporary; • may equate death with sleep or long journey; • may have magical thinking about death; • may associate death with the sorrow of others |
• Minimize the child’s separation from usual caregivers or provide reliable and consistent substitutes; provide routine and stability; offer reassurance in simple terms; • ask open-ended questions about feelings and experiences; acknowledge sadness; • dispel misconceptions about death as punishment; • provide concrete information about state of death (eg, a “dead person no longer breathes or eats”); • families may consider sharing language and concepts from their spiritual or faith tradition (as relevant) |
| Middle childhood: 7–12 y | • Concrete; • logical |
• Death is irreversible but is unpredictable; • aware that death is personal and can happen to them; • may be interested in what happens after death; • can understand the biological essentials of death (heart stops, etc) |
• Foster opportunities for questions and answers; listen actively; • may benefit from specifics about the illness; reassurance that they did not cause the death; • maintain the child’s access to trusted loved ones and routines to include opportunities for fun and play; • foster sense of connection and validate feelings; encourage remembering the sibling who died and offer opportunities to talk about memories and feelings |
| Adolescence: 13+ years | • Identity formation; • abstract considerations with advancing logical functions |
• Death is irreversible, universal, personal, but distant; • has the ability to develop physiologic and spiritual explanations of death |
• Reinforce formation of meaning, purpose, hope, and value; • allow expressions of anger; • provide privacy while also remaining available; • maintain access to peers; • acknowledge and validate feelings to include sadness, guilt, confusion, etc; • foster routines and also allow for moments of fun together (it’s okay to still try to enjoy life) |
Exemplar Support Questions for Family Members
| Exemplar Support Questions |
|---|
| • It’s been 6 mo since Sama died, how are you doing? |
| • Do you talk about Sama at home? |
| • It’s normal when someone you love dies to have all kinds of feelings. How has that been for you? |
| • When you think about Sama, are you able to think about the happy memories, or does it only make you feel sad, scared, or angry? |
| • Grief can impact every part of our daily lives, how are you doing with your sleep, appetite, and concentration? |
| • I remember what a great sense of humor Sama had, is that something you think about when you remember him? |
| • How have things been at work, school, or with friends since Sam’sa death? |
| • How have your peer friendships changed since Sama died? (Note: Acknowledge that peer friends don’t always know what to say and some friends may drift away because of discomfort with not knowing how to act or interact. If the child knows what would help [like playing video games together and riding bikes without necessarily talking about the loss], they can be encouraged to consider telling a friend that. Or, a trusted adult can help guide the parent of a friend on helpful behaviors.) |
| • What do you remember about spending time with Sama at this time of the year? |
| • Do you know any other caregiver or child who has had a child or sibling die? Have you talked with them? How did that go? |
| • Who can you talk to when you feel really sad or upset about Sam’sa death? Who can you talk to when you feel numb or disassociated from remembering the fullness of Sam’sa life? |
| • How do you think your caregiver or child is doing since Sama died? Are you worried about them? |
| Exemplar Support Questions |
|---|
| • It’s been 6 mo since Sama died, how are you doing? |
| • Do you talk about Sama at home? |
| • It’s normal when someone you love dies to have all kinds of feelings. How has that been for you? |
| • When you think about Sama, are you able to think about the happy memories, or does it only make you feel sad, scared, or angry? |
| • Grief can impact every part of our daily lives, how are you doing with your sleep, appetite, and concentration? |
| • I remember what a great sense of humor Sama had, is that something you think about when you remember him? |
| • How have things been at work, school, or with friends since Sam’sa death? |
| • How have your peer friendships changed since Sama died? (Note: Acknowledge that peer friends don’t always know what to say and some friends may drift away because of discomfort with not knowing how to act or interact. If the child knows what would help [like playing video games together and riding bikes without necessarily talking about the loss], they can be encouraged to consider telling a friend that. Or, a trusted adult can help guide the parent of a friend on helpful behaviors.) |
| • What do you remember about spending time with Sama at this time of the year? |
| • Do you know any other caregiver or child who has had a child or sibling die? Have you talked with them? How did that go? |
| • Who can you talk to when you feel really sad or upset about Sam’sa death? Who can you talk to when you feel numb or disassociated from remembering the fullness of Sam’sa life? |
| • How do you think your caregiver or child is doing since Sama died? Are you worried about them? |
The loss of a sibling includes loss of the roles inherent in the relationship the surviving children had with their sibling.90 For example, if the child had been living with illness, the surviving siblings may have played roles as helping caregivers. It is important to note that the children may not be sharing their feelings of loss or sadness with their caregivers because they do not want to burden the caregivers further.91 With the understanding of the family structure and dynamics, the pediatrician is well-positioned to assess for those relationships. The pediatrician can also assess for prior experiences with loss that the sibling may have—the death of a grandparent or pet, a divorce, or a move—that may inform the reaction to this new loss.
Providing support to siblings shortly after the death of their sibling will also include assessing the child’s understanding of what has happened.76,89 The pediatrician may feel equipped based on their training in child development and communication to talk with children about death or to advise the caregivers in how to talk to the children about death and to support ongoing sibling sense of connection.92 At a minimum, the pediatrician can be a bridge to help find professional support for the children so that they have a safe place or way to express their feelings.
As the sibling matures and develops, the pediatrician can track emotional development and inquire specifically about how the sibling is experiencing the grief over time.93 A pediatrician may consider placing a reminder message of a deceased sibling in the electronic or paper medical record as a reminder to the care team whenever a patient is being seen. The well-child visit is an especially appropriate time to communicate care and assess for grief. It is important that pediatricians gently invite siblings and caregivers to share about how they are currently experiencing their grief. Sensitive questions can begin these conversations (Table 3). Even if a sibling or caregiver of the deceased child chooses not to respond at length, they may appreciate having their child or sibling remembered and the questions clearly demonstrate that the provider is a caring resource. Cultivating compassion via active listening to the family members and acknowledging their grief is important for healing.
Although the child may not wish to discuss their sibling who has died, this reaction may change over time.94 It is always a good idea to name the loss gently and give the child permission to speak about their feelings and struggles. A prompt from a trusted person normalizes the grief and opens the door, in a safe place, for the child to process a life-changing event for which the impact shifts over time.95
In addition to the clinical encounter, pediatricians may recommend professional grief support for the siblings. This support may be in the form of one or more of the following: one-on-one work with a professional therapist, summer camps, one-on-one work with a school counselor, or a support group with other bereaved siblings, which helps the child see that they are not alone. The pediatrician can be an effective resource by facilitating referral and linkage for families to have access to the appropriate and available mental health providers and support groups and organizations in the community. Peer support groups are preventive in nature and appropriate for most bereaved siblings, whereas psychosocial treatments by professionally trained personnel are appropriate to address severe or persistent grief experienced by a subset of the bereaved.96 Research has shown that children are resilient and that with effective grief supports—family, community, professional—they can process the loss and adapt to life without their sibling.69 There are many excellent children’s books as well as adolescent and young adult or teen books that deal with the death experience that may be helpful.97,98
The death of an infant, child, or adolescent is a devastating and traumatic experience for a family. The pediatrician can consider tangible forms of care, such as writing a personalized condolence letter or making a phone call to acknowledge the family’s loss, affirm the dignity of the patient, and share empathy.113 Content may be personalized with the child’s name and a special memory of the child.114 The pediatrician may consider offering continued ongoing correspondence with the family at special times, such as the child’s birthday, the anniversary of the child’s death, or special holidays for the family. Pediatricians may consider attending a celebration of the child’s life or funeral service in honor of the child based on existing relationship with the family.115
Pediatricians have a special role in honoring culture as part of grief care.98 Welcoming a conversation with the family about their traditions and preferences may be helpful and appreciated by the family. Showing respectful and sensitive interest in the cultural traditions of families is not only helpful in improving the clinician’s knowledge and cultural competence and awareness but can also be helpful in building trust with the family.104 Although it may feel awkward, humbly and sensitively asking families directly about their preferences is recommended and usually well received.116
Pediatricians may be in a unique position to offer grief resources to the child’s school through child life services or social work or other interdisciplinary expertise. Pediatricians may consider extending support to other families or children at the pediatric practice who may know the child or family as well as office staff. Pediatricians benefit from acknowledging the impact of a child’s death on their own well-being with attentiveness to caring for oneself and one another as a professional community.
Arwa Nasir, MBBS, MSc, MPH, FAAP, Chairperson
Evelyn Berger-Jenkins, MD, FAAP
Beth Ellen Davis, MD, MPH, FAAP
Paul H. Dworkin, MD, FAAP
Tiffani Jenae Johnson, MD, FAAP
Irene P. Mathieu, MD, FAAP
Natasha Kapoor Sriraman, MD, MPH, FABM, FAAP
