Preparing children and adolescents for the loss of a parent or guardian

INTRODUCTION — The presence of a progressive serious illness in a patient creates a vulnerable time in a family’s life, especially when the patient has dependent children. Concerns about the children’s welfare and impulses to protect children from the pain of parental loss may create challenges to communication and family-focused care. The uncertainties of prognosis and illness trajectory, as well as the anticipated eventual death of a parent, is distressing to the entire family system as well as the clinical staff [1]. Due to medical advances, patients with serious illness can now live for longer periods of time, creating situations in which children live with an ill parent across their own developmental stages and through the stages of illness. Differing levels of prognostic awareness or acceptance among the adults in the family can create additional challenges to supporting and communicating with children throughout the disease trajectory.

This topic will address the issues surrounding the course of progressive serious illness in a parent or guardian with dependent children. In doing so, we recognize that there are diverse family structures and discuss specific issues and approaches in a range of family constellations where relevant. We will refer to children, youth, or adolescents (rather than a child) throughout this topic.

Health care professionals are well positioned to assess family and youth functioning around parental illness; support honest, developmentally appropriate communication with children and adolescents; and encourage as much normalcy as possible in the lives of young people living with serious parental illness or anticipating parental death [2]. The coronavirus disease 2019 (COVID-19) pandemic has created over five million bereaved children and adolescents globally, highlighting the importance of understanding the needs of youth who have lost parents to illness [3]. Further, these deaths from acute illness have been outside of the paradigm of progressive illness for which there is more time to prepare. Families may therefore need to anticipate children’s needs and reactions in a compressed timeframe and address shock and disbelief during the grief process.

Other issues related to end-of-life care are discussed separately:

●(See "Advance care planning and advance directives".)

●(See "Palliative care: The last hours and days of life".)

●(See "Stopping nutrition and hydration at the end of life".)

●(See "Overview of spirituality in palliative care".)

●(See "Psychosocial issues in advanced illness".)

●(See "Ethical issues in palliative care".)

●(See "Overview of managing common non-pain symptoms in palliative care".)

SCOPE OF THE ISSUE

Family-focused care from diagnosis onward — From the time of a parent’s diagnosis with a serious illness, their immediate concerns may focus on the welfare of their children. Treatment for serious illness can affect all aspects of family life, and parents have significant concerns about their ability to meet their children’s practical and emotional needs [4,5] and how to communicate with their children about the illness [6].

Guidance in the earlier stages of a parental illness includes providing developmentally appropriate communication, maintaining the child’s normal routines, and preserving family time as much as possible [7,8]. As the disease becomes more advanced, parents face challenges in supporting their child’s normal development and function in the context of preparing for their own death. Uncertainty about the exact timeline for disease progression and parental distress and anxiety can further complicate family coping. Nonetheless, the principles of providing honest age-appropriate information, maintaining a child’s everyday routines, and respecting individual differences apply as families live with serious illness and prepare for the death of a parent.

Adult patient psychological distress — Although parents/guardians coping with a life-limiting progressive illness have their children's welfare at the forefront of their minds, the demands of their illness may make it difficult to address all of their children’s practical and emotional needs. The ill parent and other adults in the household may have differences in their understanding of the situation as well as varying emotional reactions and coping styles [9]. The ill parent may be struggling with their own physical and emotional symptoms and have variable acceptance of their situation, making it challenging to communicate directly with their children about the illness. In turn, the well parent or other adults in the household may be preoccupied with caring for the ill adult and have less energy to focus on the children's concerns.

Parenting concerns are associated with anxiety and depressive symptoms and worse quality of life in patients with advanced cancer, and this association is stronger in those with more advanced disease [10,11]. The importance of this issue was shown in one study that included over 660 patients with advanced cancer in which parents with dependent children were [12]:

●More likely to have panic and anxiety than those without dependent children

●More likely to prefer more aggressive treatment

●Less likely to engage in advance care planning

●Judged by their caregivers to have worse quality of life in the last week of life

Parental functional status impacts concerns about meeting physical responsibilities and intensifies parental psychological concerns, including:

●The impact of their illness and death on their children

●“Missing out” and losses of parental role and responsibilities

●Maintaining parental responsibilities despite life-limiting illness

●Identity as a parent influencing decision-making about treatment [4,13]

A sample of bereaved fathers offers insights into the experiences of their dying wives relative to their children [14,15]. According to these fathers, 38 percent of mothers had not said goodbye to their children before they died, and 26 percent were not at all “at peace with dying.” Ninety percent of this group also reported that at the end of life, their wives were worried about the strain on their children. Fathers who reported clearer prognostic communication between the wife and physician had lower rates of depression and grief scores. These results can therefore inform clinical practice by encouraging clinicians to provide surviving family members with clear prognostic communication. Surviving fathers also reflected on the communications they wished for from their wives, such as how to raise children in a manner that reflected maternal wishes, whether and how to talk with children about their mother’s death, and how the mother wanted to be remembered by her children [16].

Distress in the child or adolescent — A progressive serious illness in a parent creates a vulnerable time for children and adolescents who can experience:

●Heightened psychosocial distress – Studies show that during this time children and adolescents experience more anxiety and depression, lower self-esteem, fears, misconceptions, and behavior changes in response to multiple stressors [17]. For children living with a parent with cancer, greater anxiety was associated with an inability to discuss the illness, decreased time spent in age-appropriate activities, and ongoing worries about the cancer [18].

●Traumatic responses to end-stage illness – Young people may experience a range of traumatic responses to end-stage illness in a parent, especially with the accompanying physical changes, limitations in function, and increased dependence on medical equipment. Traumatic stress is related to exposure to the "fact" of impending death or loss itself, as well as to adult caregivers who are struggling to deal with their own emotional distress, making it difficult to attend to the needs of their children [19]. The syndrome of posttraumatic stress disorder (PTSD) is not necessarily induced by exposure to illness and may or may not develop after the death. The psychosocial functioning of the ill parent can influence their children’s response. At least one study shows that if the ill parent is depressed or the family is dysfunctional during this time, children are more likely to experience emotional and behavioral problems [20].

●Anticipatory grief – In general, anticipatory grief refers to the wide range of thoughts and feelings that accompany the sense of impending loss. For youth, anticipatory grief may take many forms depending on the age of the children, their overall functioning and that of the family, and their understanding of the illness to date. Children and adolescents may be clingier or more distant and have vacillating recognition of just how ill their parent is. They have a strong need to remain connected with the ill parent, and they may need to both feel denial about the possibility of death as well as engage in active coping with the illness to help with the anticipation of loss and development of continuing attachments [21]. Tension can exist between a child’s expressed interest in being actively involved with parental illness and dying and the desire of parents and other caregivers to "protect" their children from the stress and sadness of the situation [22].

UNDERSTANDING OF DEATH AT DIFFERENT AGES — In considering how to talk with families and children anticipating parental death, it is essential to understand how children and adolescents of different ages comprehend illness and death. Their perception of these experiences is influenced by their level of cognitive and emotional development as well as by previous exposure to death in other settings (table 1). The developmental understanding of death is fluid and may carry from one phase to another. For example, while magical thinking is most often encountered in preschool-age children, both older youth and adults are vulnerable to magical thinking about having caused death, especially when distressed or acutely grieving [23]. Communication about the illness must be developmentally informed. (See 'Facilitating communication between parents and their children' below.)

Infants and toddlers (0 to 2 years) — Children two years or younger have no understanding of time or the finality of death. At these ages, children continue to work on the complex tasks of attachment, basic self-regulation, and trust in their environment and caregivers. They are sensitive to separation and may be distressed by changes in regular routines. While familiarity and structure are helpful for people of all ages during difficult times, routines are even more essential for the youngest children.

Infants and toddlers will feel the absence of a parent even with no comprehension of the permanence of death. They may be distressed by changes in regular routines and will likely be affected by the emotional distress of grieving adults around them.

Guidance for infants and toddlers — The major objective for the support of very young children is to maintain a sense of security and predictability. Because infants and toddlers rely on routines, they should ideally be cared for by a limited number of familiar caregivers, particularly during the months or weeks leading up to a parent’s death. By restricting caregivers to those who can get to know their routine and provide care in as consistent and predictable a way as possible, children may feel more secure. In addition to exposing children to a common set of caregivers, daily activities (eg, feeding, diapering, bathing, and sleeping) should be routinized and use the same equipment (eg, bottles, cups, stuffed animals, toys, blankets) consistently.

Preschoolers (3 to 5 years) — Preschool children between three and five years have a wider range of social interactions than younger children. They have particular ways of understanding the world around them that impact how they comprehend parental illness and death. These include:

●Egocentrism – Seeing the world only as it relates to themselves

●Associative logic – Randomly or idiosyncratically associating two events, characteristics, or things with one another

●Magical thinking – Difficulty separating fantasy from reality, or believing that one can affect events or people by thinking or wishing something

Children of this age do not yet have an understanding of the irreversibility of death, and so they may also offer solutions to death and expect the person to be “all better.”

Guidance for preschoolers — During the weeks or months leading up to a parent’s death, it is important to be concrete and use observable examples with preschool-aged children about end-of-life issues. For example, clinicians should avoid descriptions of death as “sleep” (eg, “mommy is going to sleep soon and won’t wake up”) because they can create worries about bedtime (eg, fear that they will also not wake up if they go to sleep). Instead, parents should be encouraged to talk about death in concrete terms (eg, “death happens when the body stops working”).

Preschoolers should be regularly engaged with their parents with support from other adults. Because they have a more egocentric thought process, they may attribute current events to something they did wrong. Therefore, it is important that parents and caregivers have patience with their children and communicate openly in order to prevent any misunderstandings, including guilt. As examples:

●A child who yells “bad mommy” or “go away” during a tantrum may think that saying this can actually make someone die and go away.

●Alternatively, a child might talk about the death matter-of-factly or make up a song about it, and yet might become cranky or have trouble with routine activities or changes in schedule, which might reflect an ongoing process by which the child tries to make sense of what is happening.

For some preschool-aged children, conversations about death may be most meaningful after the death has occurred, when they can have concrete anchors for the conversation. Appropriate examples of this might include stating: “Mommy was so sick that important parts of her body stopped working” or “Mommy died and can’t be with us anymore.”

School-age children (6 to 12 years) — Between the ages of 6 and 12 years, children are typically immersed in acquiring academic, physical, and social skills, including mastering cause and effect. In addition, they are usually invested in notions of fairness and are sensitive to things that set them apart from their peers. By the age of seven, children usually understand that death is permanent. However, they may demonstrate a preoccupation with factual, medical, or physical aspects of death and dying, which may be difficult topics for adults to discuss. They may be more irritable, sad, or anxious, but not necessarily connect their feelings with anticipatory grief. The uncertainty about time that is inherent in progressive serious illness may be particularly hard for school-age children to grasp. As a result, the anticipation of death itself may become distorted. For example, an eight-year-old child hearing that a parent is very, very ill and is “coming home to die” may think that the parent will die that very night. Although their conceptions of death may be concrete, school-age children may have difficulty understanding more abstract or spiritual issues (eg, beliefs about the soul or the afterlife).

Guidance for school-age children — Because school is usually a central focus of children’s lives between 7 and 12 years, it is important to involve the appropriate school personnel and inform them of what is happening in that child’s life. Some children, however, may not welcome being approached by their teachers about what is going on in their own homes. Instead, parents should ensure that teachers are aware of the potential for changes in the child’s behavior, and that children know whom to contact at school if they need help. If a family is part of a religious community, religious educators may also be helpful in supporting children.

School-age children also do well to maintain a certain level of responsibility and regular routines. This can reinforce that life goes on, even in the context of a parent's illness and eventual death. Children may also need additional help from adults with school tasks and activities. In response, families may come to rely on others within their community to provide more support to their children. Finally, it should be noted that school-age children are vulnerable to worries about their own health or the health of their surviving family members. These concerns will require attention and reassurance from trusted adults.

Adolescents (13 to 18 years and beyond) — Adolescents are forming their own identities and are working to separate from their parents. They have the capacity for abstract thinking, although their brains do not fully mature until into their twenties. Adolescents understand that death is final, irreversible, and universal and may think actively about existential and spiritual issues. They may vacillate between abstract ideas about their parent's illness and death and being preoccupied with very specific and self-centered ways in which it affects their life [17,24]. A small qualitative study among adolescents who had parents with cancer found that they thought about many aspects of the illness and its impact on them, with themes such as existential suffering, unfairness, avoidance, and positive growth from the experience [25]. Teens are also more likely than younger children to project forward into the future and worry about their life progressing without their parent, anticipating sadness about milestones that their parent will not be there to witness.

Guidance for adolescents — Adolescents need support and guidance along with control over how it is provided. They are generally self-involved, which should be understood as developmentally normal and not a negative character trait. Because of their older age, these children may be asked to take on adult responsibilities in the context of a parental death, or they may engage in risk-taking behaviors. The surviving parent should be mindful of teenagers who are taking on too many adult responsibilities or are engaging in substance use, risky sexual activity, or illegal activity online or in their community.

Older adolescents and emerging adults may also request more specific information about a parent’s illness and the probability of death, especially when faced with decisions about moving away from home (eg, for employment or college). Older children need accurate information in order to make the decisions that will be most comfortable for them and minimize the possibility of future regrets. Young adults may feel the tension between wanting to be home with a dying parent and the parental wish or their own desire to carry on with their independent lives. Open family discussion and recognition of the options over time can help in the decision-making process.

ASSESSING FAMILY MEMBERS' UNDERSTANDING — Regardless of the clinical situation, it is important that clinicians gain a good sense of what both adults and youth understand about the situation (including the seriousness of the disease and awareness or acceptance that the ill parent is dying). The answers to these questions can inform subsequent discussions about the end of life and help clinicians support parents/guardians in openly and honestly discussing issues with their children. This can help address children’s worries and misconceptions and prepare them for the death of the ill parent. Family coping with parental illness may be based on their premorbid stressors and function as well as the particular challenges of the illness. One study adapted the Family Management Style Framework (FMSF) to family serious illness [26].

Assessment in adults — Providers should strive to address parenting issues directly and ease family suffering through open communication, planning, and support. This may be especially important for some ill parents who have higher levels of concern about their children, particular situations such as metastatic or recurrent cancer, or preexisting mental health disorders [27]. Families with these characteristics would benefit from early involvement of psychosocial providers who can directly address these parenting concerns.

The assessment of parents and other adults in the household should encompass their understanding and expectations of the time course of the ill parent's condition. Each adult may have different understanding or capacities to think about end-of-life issues and may need separate conversations. Eventually, the parent and their partner or other adult family members may come to a similar understanding of how serious the situation is. This common understanding can inform a shared approach to managing familial communication and support for the children. An adaptation of the Parenting Concerns Questionnaire for adults with advanced disease has been published and may be a useful tool in formally assessing these concerns [28].

Some clinical questions that may be asked of the terminally ill patient and their partner to set the stage for conversations about dependent children include:

●What do you understand about the expected prognosis/time course?

●What do you know about the kinds of symptoms that might be expected at the end of life?

●What are your hopes about how and where you would like to be at the time of your death?

Assessment in children — For most children, information about the illness is most easily understood and integrated into their everyday experiences when it comes from their parents or other trusted adults, especially if it is discussed with them over time and reflects real-time changes in the parent’s situation. Clinicians may not have opportunities or the expertise and comfort to address these issues directly with children. When the assessment of children occurs by parental report, clinicians should aim to understand how the illness has been managed and discussed by the family to date.

If the parent intends to prepare their children directly for the ill parent’s death, the clinician can help by framing the issue with questions such as:

●“What words or phrases have been used to describe the illness to your children?”

●“What do your children expect about the outcome of the illness?”

●“What prior experiences have your children had with major life changes, illness, or death in their community or family?”

●“How have your children coped with these challenges?”

●“How have you managed these challenges as a family?”

●“Do you have particular concerns about how your children are coping with the illness so far?”

●“What are your worries about how your children would cope with death?”

If children will be assessed directly, adult clinicians may benefit from collaboration with family or child clinicians. Parents may need to be present for conversations with younger children, and parents should be consulted about the approach to older children and adolescents. However, it may not be necessary for clinicians to communicate with children directly, especially if there has been careful discussion with the ill parent and other caregivers about how to approach the children and ensure their welfare. Meeting with youth directly may not even be possible in some clinical settings.

SPECIAL SITUATIONS

Youth without surviving caregivers — Some of the most challenging cases involve families in which there are no appropriate surviving caregivers. In such situations, parents may have even more concerns about how their children are coping with the illness and how they will be cared for when they die [27].

It is important to actively engage parents who are raising children alone in discussions to help them identify other caregivers who can support the children during their illness and after they have died. Early planning for guardianship for youth under 18 is essential. Although some parents facing the end of life may have trouble addressing these painful issues, clinicians need to address them directly and help parents come to a sense of having taken good care of their children up until their deaths and beyond. The involvement of social services is invaluable in these difficult situations.

Youth with developmental disabilities — Young people with developmental disabilities will have special considerations for communication, consistent caregiving, and potential guardianship or lifelong care. Parents/caregivers will usually be well equipped to address these as they have had to engage with the educational and social services system over time. Communication will need to be tailored to the young person’s capacity to understand timeframes and abstract issues and to manage their emotional responses. Legal consultation may be necessary to address guardianship by non-custodial adults.

Infectious disease considerations — The COVID-19 pandemic has highlighted the challenges of limited visitation and its potential impact on grief. When youth cannot visit in person, they should be included as appropriate in video or phone calls or be given opportunities to send drawings, cards, or photos to the ill parent. Supportive adults should offer opportunities for the child to explore and communicate unresolved issues with the ill parent, when possible, or with other adults or spiritual leaders.

Hereditary disorders — When a biological parent is dying from a heritable disease, young people may have particular worries about their own health or that of their siblings. They may have engaged with a genetics consultation or be aware of possible genetic testing. Full discussion of those issues is beyond the scope this topic, and they require careful attention from genetic counselors trained in addressing these issues for young people.

FACILITATING COMMUNICATION BETWEEN PARENTS AND THEIR CHILDREN — Preparing and supporting children through the serious illness and ultimate death of a parent must be based in honest, developmentally appropriate timely communication that is adapted to the trajectory of the disease. There is no "one size fits all" approach, and parents should be respected in their understanding of and best intentions for their children. A family’s cultural background may impact parents’ willingness to have open communication with children. Cultural or religious contexts must be respected, yet if children are experiencing significant distress or functional disturbances, parents can be engaged in exploring whether unspoken concerns or misconceptions may be contributing to the children’s distress.

Common challenges for parents include uncertainty about the trajectory of their illness, managing their own emotions about progression, and the emotional distress associated with talking about their illness with their children. For example, mothers with metastatic cancer have reported being driven by a commitment to honesty and protection, the child's developmental readiness, and beliefs about the right timing [6]. Concrete approaches such as anchoring conversations in what their children may already know or observe, connecting their observations to new medical information, and describing new goals of care can help parents create a roadmap for discussions with their children [29].

Parents may have strong feelings around a transition in goals of care from curative to palliative treatment. However, this change in treatment focus may not be evident to young people, and so communication about it needs to be driven by the ages of the children, their prior understanding of the parent’s illness, and how the change in focus may affect the family’s everyday life. For example, for young children, the change in goals of care may not be a focus of communication until there are observable changes in the parent’s physical condition. For older children and adolescents, the change might be framed as a focus on living as best as possible or having special experiences without the burdens of treatment. Children’s reactions may also be mediated by their own temperaments. For example, some children may be made more anxious by knowing their parent is not receiving disease-directed therapy, and so they may need a more gradual explanation as the parent’s status changes.

When caregivers disagree with one another about when or how much to communicate to the children about an approaching death, clinicians can inquire about the concerns caregivers have about saying too much or too little, too late or too soon. Caregiver concerns may be based on prior experiences or be based in their own anxieties about the death. Exploring what each adult feels the child already knows or their fears about what might happen for the child after the conversations can help caregivers come to a common understanding and allow for compromise about how and what to communicate.

Approach to the child — Communication about the illness should ideally occur from the time of diagnosis and throughout the trajectory of the illness, anchored in the young person’s immediate experience of the parent’s physical symptoms or treatment. Children and adolescents should not overhear the news that a parent has a serious illness from others or be left to form their own conclusions about a parent’s illness. These scenarios may make them vulnerable to misconceptions about why the illness is progressing or how their life will change after a parent dies. Young people who overhear news may feel excluded, even when the adults’ silence is an effort to protect them [7]. Therefore, parents should be encouraged to use honest, straightforward, and age-appropriate language when discussing the impending death of one parent. This includes:

●Checking in – This entails frequent evaluation of their children’s understanding of what is being discussed

●Welcoming questions as they arise

●Use of specific language to explain what is happening, including the name of the illness and a precise definition of what it means, based on their children’s ages (eg, leukemia as a cancer of the blood system, glioblastoma as a brain tumor, cardiomyopathy as an end-stage heart condition)

Introducing the discussion — Retrospective studies that describe the experience of parental death note the importance of clear, honest information during the illness [30], although conversations between parents and their children may not happen readily [31].

Many children (especially from school age and into adolescence) may have already considered that their parent might die. They may even have wished them dead at some point in anger or frustration and may harbor guilt or magical thinking about the role they played in the death. In an ideal situation, parents have engaged their children in discussions throughout the parent’s illness, starting at the time of diagnosis. This increases the probability that their children already have an age-appropriate understanding of the illness at the time the ill parent enters the terminal phase of their illness. The communication around the end of life may be easier when youth have received honest information all along and when discussions about death are initiated early in the terminal phase so that they have a clear understanding of the changes in function, focus of treatment, and anticipated course. (See 'Understanding of death at different ages' above.)

Discussions with children may not need to happen in the same timeframe that parents are grappling with the anticipated death. For example, discussing death because of signs of progressive disease based on laboratory or radiologic findings may not make sense when the parent’s physical function has not changed at all. A conversation may be better timed around a visible or functional change in the parent’s condition so that children have physical anchors for the discussion at hand. When communication about the illness has not occurred throughout the disease trajectory, children may be more distressed about these functional changes and/or discussions. In such cases, open-ended questions about what the child has observed may be helpful in initiating the conversation.

The following examples use “Mom” as a place holder for whatever name or designation is appropriate to the situation:

●“What have you noticed about how Mom is doing recently?”

●“Do you think about what could happen if Mom gets even sicker? Or different parts of her body stop working?”

●“Mom used to be able to take walks with us and play with you, but now she can’t because she is sicker, so she stays in bed a lot.”

Variations in children’s temperaments and development, as well as the presence of preexisting depression or anxiety, should inform when the topic of a parent’s impending death is raised. The role of the clinician (primary care versus specialist versus palliative care clinician) and whether the clinician has a familiar relationship with the children will also impact the clinical approach.

Some young people may ask about death directly and may be fearful as they witness a parent become more ill and less functional [19]. Although there are few data to inform how to clinically prepare children for the death of a parent, manualized family-focused therapeutic approaches during palliative care have been shown to reduce distress and depression after the parent has died, particularly in high-risk families with adolescent and adult children [32]. This standardized family therapy intervention of four to eight sessions over one to two years seeks to enhance family cohesion, communication, and conflict management and thereby prevent the complications of family bereavement.

In the context of a medical visit — Children and adolescents may ask to come with their ill parent to medical visits, especially as they grow older or have been very involved in a parent’s illness. When requested by the young person, a family visit can provide an opportunity to ask questions that can be addressed directly by their parents and/or the clinician. On the other hand, some families or cultures would never include a young person in a medical visit and prefer to have these conversations privately rather than with medical providers. The developmental understanding outlined above provides the foundation from which clinicians can discuss issues with kids and advise parents on how to communicate with their children. (See 'Understanding of death at different ages' above.)

LEAVING A LEGACY — Some parents who are approaching the end of life may think about what they would like to leave for their children as a legacy. Though parents may wish to engage in active legacy leaving, many find it too painful to take concrete action and there should be no expectation that even the most loving parent will do so. Parents of young children may worry about how or whether their child will remember them. Even without specific legacy leaving, parents of younger children can be reassured that their memories may be held in feelings of being loved, photos or videos that demonstrate pleasurable times together, and the stories that others will tell about their love for the child over time. Broadly defined, a legacy can be something of material value (eg, a trust or inheritance) or personal value (eg, an heirloom, photos, or memorabilia), as well as specific communication that can be left to children or others after one has died. In general, items that were of personal value to the deceased parent provide a basic foundation for children to remember and sustain the relationship with a parent. Parents may sometimes have specific wishes about when and how a child receives specific items or letters (eg, distribution at particular ages or milestones).

Legacies that present a specific parental vision for their children's future may be constraining or make surviving children feel that they have disappointed their deceased parent as they mature, especially if they choose not to (or cannot) fulfill the prespecified wishes. If a parent intends to encompass future wishes or hopes as part of their legacy (eg, in the form of letters to be opened when children are at certain ages or milestones), such sentiments are best written in generalities so that they can be applied in a range of ways to support the young person. For example, general ideas about hoping that the child finds a job that they find interesting and productive may be more supportive than a specific wish that they take on a specific profession like the parent or like the parent wished for themselves.

Apart from a parental approach to legacy, parents should be aware that their children may have identified objects that they wish to keep themselves, either before or after the death. Children spend a lifetime revisiting the loss of the parent and may become interested in their parent as they themselves reach different phases in their own life. While there may be strong yearnings to stay connected during the illness, preparation for death may be emotionally taxing, and the emotional limits that families set must be respected by clinicians [21]. Finally, parents should be encouraged to enlist their wider community of friends and relatives in building a legacy for their children. For example, they can participate by creating a video or writing a memory or thought about the parent that can be kept in a memorial book that can be accessed by children when they become older.

LOCATION OF DEATH — One of the most important decisions for families facing an anticipated parental death is where they would like the death to occur. There is no one answer that will suit every family, and the ill adult may have experiences or personal wishes that dictate whether they wish to die at home, in the hospital, or in an inpatient hospice setting. If families have choices, they should consider the needs of their children in addition to the medical or personal needs of the dying parent. Sometimes an inpatient hospice or hospital setting makes the most sense for families. The well parent may then have to divide their time between the inpatient setting with their spouse and being at home with their children. Having thoughtful, familiar adults at home can ease this strain and allow the children to continue with their usual home and school activities. Visits with children and adolescents should be facilitated whenever possible, if desired. Factors to consider to help facilitate these visits are summarized in a table (table 2).

Inpatient care settings — As it becomes clear that a parent will die in an inpatient or hospice setting, children and adolescents should be asked about their interest in visiting and helped to explore why they may or may not want visit. It is most important to help young people not have regrets about whether or not they visited their parent before they died. However, it is best to avoid exposing children and teens to potentially traumatic medical procedures. Taking young people to see a parent who is agitated, in respiratory distress, or delirious may be frightening and should be avoided. However, children could be allowed to visit with their parent who is sedated or unconscious, with preparation that the parent may be unresponsive, but may still be aware of their presence or hear their communications with them.

Children and adolescents who express reluctance to visit their ill parent may have specific worries (eg, seeing blood or having their parent die during the visit). Youth should be provided with opportunities to discuss their concerns and to make a thoughtful decision. The well parent or other close relative or caregiver may give examples of how they might use the visit with the dying parent, eg, quiet presence; describing memories; expressing love, apology, or forgiveness; leaving a photo or note. In general, concerns can usually be addressed with direct explanations and the creation of contingency plans. For example, they can be reassured that there will be no medical procedures while they are there, that they can leave if they are uncomfortable, or that a supportive adult will stay with them.

Before visiting a parent who is hospitalized with serious illness or at the end of life, children and adolescents should be prepared for the visit with descriptions of the setting, medical equipment, roommates, as well as the physical and functional status of the parent. For younger children, these descriptions may need to be concrete comparisons to the last time they saw their parent. Youth should be accompanied by an extra adult to ensure they are able to leave when ready, even if the well parent would like to stay. Younger children may only be able to tolerate brief visits or might need structured quiet play or drawing activities to do in the room. Touching their dying parent should never be forced upon their children. However, if they want to do so, they should be showed how to touch the dying parent and supported in their attempts.

After the visit, children and adolescents should be asked about their visit to reassure them and prepare for the next visit, if they care to make one. This can be accomplished by asking them what they found interesting, enjoyable, meaningful, scary, or uncomfortable. When in-person visits are not possible, other kinds of contact between the terminally ill parent and their children should be encouraged such as making cards, letters, or drawings for their parent, phone call or video chats.

When death is imminent, last visits can be meaningful, especially for older children and adolescents who have an understanding of the finality of death. If possible, older school-age and teenage children should be asked whether or not they want to be called to the bedside near the end of life or immediately after the death. Some young people very much want to be included, while others may prefer to have memories of their parent in a healthier state or may feel afraid and uncomfortable about seeing their parent very ill and dying. Older children and teens who opt to be at their parent’s bedside may request private time with the dying parent, even if comatose, to say a last “I love you” or share an important private moment. When a visit is not possible, it is important to inform young people about exactly why that is so and reassure them that their parent is still aware of their love and provide other means of communication.

It is important that children and adolescents be provided with age-appropriate information so they can make decisions that will help them feel that their needs and wishes were considered during this important time. Clinicians should remind families that there are many opportunities to say goodbye to a terminally ill parent, including before death, immediately afterwards, during memorial services and funerals, and during private moments of reflection or prayer.

Patients at home — The advantage of having everyone at home is that children and adolescents can maintain their usual routines and have more access to their well parent. If there will be other adults staying in the home to help, they should be familiar with daily routines and privacy needs. Attention to certain logistical details can make things more comfortable for their children. These include:

●Have the dying parent in a room with a door whenever possible, as opposed to an open or family area. This will allow young people to titrate their own exposure to the ill parent and medical equipment.

●Encourage families to discuss changes in medical status as they occur to ensure their children have opportunities to ask questions and state fears or concerns.

●Address any particular fears about the death itself, including symptoms that accompany the dying process, how they are treated, and what the physical process of dying might look and sound like.

●Consider where their children should be once death occurs and the patient is removed from the home.

Addressing these types of logistics allows children and adolescents to think about how much they want to be around during the final days and hours. They can also consider whether or not they want to see the body after death, and they should be supported in making an informed decision about how, when, and with whom they would want to do so.

However, dying at home with children present may not always be recommended. Families with high levels of conflict, significant disorganization or inadequate support, or caregivers who are overwhelmed with balancing the needs of the ill person and the children may be best supported in other settings. Having the children spend time away from home when the parent is dying should be carefully considered to ensure that they do not feel excluded from the process and can have supported visits and be cared for well by others.

INVOLVEMENT OF OTHER SUPPORT SYSTEMS — For families with a terminally ill parent, the child’s network of extended family, spiritual leaders and communities (for some), important adults, the parents of the child’s friends, and other professionals such as teachers and coaches are useful supports during parental illness and into bereavement. Designated helpers can facilitate activities of daily living (eg, provision of meals, visits, childcare, rides) that help families to maintain routines as consistently as possible. Helpers may be derived from the family’s network of family and friends or through outreach to care organizations and/or the use of online websites.

For school-age children, a classmate’s parent may be willing to help with the management of the affected child’s activities, such as homework, sport or art activities, and special events, which can be overlooked in a household with a seriously ill parent. In addition, parents should identify a member of the school team (teacher, principal, or nurse) who can be kept up to date about the terminally ill parent’s condition and how it may affect their children's school function or attendance. For students in high school or college, they should be directly asked whom they want to be informed and how much accommodation they need in school.

Based on evidence that specific family-focused therapeutic approaches during palliative care reduce distress and depression in high-risk families with adolescent and adult children following the death of the ill parent [32], the involvement of social services should be offered, especially to families with younger children. At least one report showed that among families with younger children, an intervention that included preventive bereavement services (designed to provide structured learning around family communication, parenting skills, and child coping skills) improved parenting, coping, and caregiver mental health and reduced internalizing and externalizing problems in children who presented with increased psychological difficulties [33].

ROLE OF THE PARENT’S CLINICIAN — Caring for a patient with dependent children can be emotionally and practically challenging for medical and psychosocial clinicians. Particular issues include additional time needed for parents to process medical information, unclear scope of clinician roles, and strong emotions and identification with dying parents [34]. While most adult clinicians do not have specific family- or child-centered training and expertise, they are in an important position to explore issues related to parenting concerns and youth coping and to provide opportunities for enhanced family communication. If possible, the team should try to engage a palliative care clinician in the patient’s care. Using a developmental and thematic framework, all clinicians are better equipped to engage in directed listening and anticipatory guidance with the ill parent, their spouse or coparent, and the surviving family members. (See 'Understanding of death at different ages' above.)

ROLE OF THE CHILD'S CLINICIAN — The family's clinician or pediatrician is also an important source of support or guidance, as they can screen for emerging emotional or behavioral disturbances that need additional attention. They may also be aware of community-based groups or camps for children with ill or deceased parents. A child’s persistent anxiety, sadness, withdrawal behavior, acting out, or risk-taking present for weeks to months should prompt a more formal mental health referral. If a young person is already involved with a mental health clinician, that person should be apprised of the parent’s disease state and regular appointments should be supported by the family support system.

ISSUES THAT ARISE AFTER THE DEATH OF A PARENT

Participation in funerals and memorial services — Children and adolescents of any age may participate in different aspects of funerals and other types of memorial services (eg, wake, religious service, interment, or family gathering). As with hospital visits, it is important to prepare them for what the event will be like, including the setting, who will be there, what the service will be like, what they will and won’t be able to do, and that there may be a range of feelings expressed by people, from sadness to warmth and humor. Many funeral homes will provide a private time for the family to have a special children’s service or quiet visiting time. Young people sometimes like to place a picture, note, or special object in or on top of the casket or to help prepare the photo display.

Specific suggestions on the participation of children and adolescents should be based on their developmental stage:

●Older children and teens should be asked if they would like to be included in the planning and/or participate in the service in any role that they are comfortable with.

●Younger children should be accompanied by a familiar adult to care for them throughout the service, including taking them away if they are unable to stay for whatever reason.

●Younger children who do not yet fully understand death may find the internment disturbing, as they don't want to see their parent lowered into the ground. Families may consider not having young children attend the burial itself and instead visit the gravesite at another time.

Children and adolescents may have specific questions about the preparation of the body or cremation (if applicable). Adult caregivers may want to learn about the process in advance so that they can better answer their questions. Alternatively, they should know whom to ask (funeral directors sometimes have age-appropriate information) about these issues.

Bereavement — Research on childhood bereavement has found that following the death of a parent, children normally make efforts to maintain a connection to their deceased parent as a way to effectively cope with their loss [35-37]. The emotional experience of grief shifts as young people move through normative development. Their maturing cognitive capacity and increasing life experiences allow them to explore different aspects of the loss as time passes [37]. Therefore, it is important to recognize that grief will likely emerge in different ways as young people grow up, which will require tailored approaches to address grief. The role of the surviving parent or other adults in the household can be particularly important in providing their children with opportunities to remember and memorialize the dead parent [36].

Prolonged grief — Although the behavioral and emotional sequelae of parental illness and death usually improve with support from family, community, peers, and school personnel, some youths may suffer from a more prolonged grief reaction that interferes with function. This syndrome of prolonged grief has been recognized in adults and may be a relevant diagnosis for young people.

Prolonged grief consists of a constellation of symptoms (described in adults) that interfere with function beyond six months (for children and adolescents, six year for adults) and include:

●Preoccupation with the deceased parent, including a sense of longing or yearning

●A sense of futility about the future

●Numbness

●Detachment

●Difficulty accepting the death

●Loss of security

●Anger and bitterness about death

In youth bereaved by sudden parental death, prolonged grief is significantly related to functional impairment, even after controlling for depression and posttraumatic stress disorder (PTSD) [38]. PTSD in children and adolescents is discussed separately. (See "Posttraumatic stress disorder in children and adolescents: Epidemiology, clinical features, assessment, and diagnosis" and "Posttraumatic stress disorder in children and adolescents: Trauma-focused psychotherapy".)

LONG-TERM OUTCOMES IN CHILDREN — Many studies show that most children and adolescents develop nonspecific, subclinical, and transient behavioral disturbances in the year following a parent’s death but later adjust normally [39,40]. Other studies report greater anxiety and depression, posttraumatic growth, and lower school performance [41-43]. Overall, one in five young people who have lost a parent are at risk for a psychiatric disorder, including mood, anxiety, posttraumatic stress disorder (PTSD), or behavior problems [44], and a subset of these may be vulnerable to depression [44,45], especially if the death of the parent was as a result of suicide, accident, or sudden natural death [46,47].

How children perceive the care that their parent received has implications for their longer-term psychological health. In one study, little or no trust in the care received by their dying parent was associated with higher levels of bitterness towards providers, as well as more depression and self-destructive behaviors over time [48].

Compared with children and teens who have not experienced the death of a parent, parentally bereaved youth have higher rates of psychiatric problems, although they are not as impaired as those with depression [45]. The risk factors associated with decreased global function following the death of a parent include:

●Preexisting psychiatric disorder or substance abuse [49]

●Lower socioeconomic status [49]

●Depressed surviving parents [45]

Adaptive functioning following parental loss is related to both youth coping style and youth-extrinsic factors, such as the religiosity of the family and positive reinforcement and empathy from the surviving parent, if one exists [50]. Support of the surviving parent by other adults, religious communities, and neighborhoods will strengthen their capacity to be attuned to children’s needs during advanced parental illness and death. This is important because the parent’s capacity to provide youth-centered emotional and structural support has significant impact on coping and ongoing connection with the deceased parent [9]. By contrast, caregiver depression and PTSD symptoms may contribute to youth depression [51]. Peer support that is not focused on the parental loss is also key, especially for school-age children and adolescents, who mostly wish to be perceived as “normal” and maintain their social life as it was before the death [52].

Preventive intervention studies with parentally bereaved families have demonstrated that increasing effective parenting practices (warmth, acceptance, encouragement of expression of grief, and effective discipline) in the surviving parent can lower the risk of mental health problems in bereaved youth in both the short and long term [53-55]. Surviving parents may need additional support to weather the everyday challenges of youth behavior and provide consistent support and discipline. For example, meeting the demands of a busy schedule as a single parent may leave less energy and patience for a cranky child.

Group support programs may be helpful for parentally bereaved youth. In an open trial, the Good Grief program, a three-day camp experience for bereaved youth, ages 12 to 25 years old whose parents died of cancer, was found to be highly engaging and demonstrated improvement in coping with trauma, managing emotions, social support, future planning, and accessing resources [56].

Surviving caregivers who become concerned about a bereaved young person's mood, anxiety, or everyday functioning should consult with their pediatrician for additional assessment and support. While transient or intermittent changes in mood, anxiety, or socialization alongside longing for the deceased parent may be expected aspects of grief, more persistent difficulties or decreased function in more than one area of family life, school, or age-appropriate socialization may warrant referral to a mental health clinician for further evaluation. Youth may benefit from treatment with psychotherapy for milder issues, or medication for biologically based disorders such as impairing depression or anxiety.

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

SUMMARY AND RECOMMENDATIONS

●Scope of the issue – The presence of a progressive serious illness in a patient creates a vulnerable time in a family’s life, especially when the patient has dependent children. Concerns about the children’s welfare and impulses to protect children from the pain of parental loss may create challenges to honest communication and family-focused care. The anticipated death of a parent can be very distressing for all involved. (See 'Scope of the issue' above.)

●Understanding of death at different ages – In thinking about how to talk with families and children anticipating parental death, clinicians should have a sense of how children at different ages understand illness and death itself. This is influenced by children’s general level of cognitive and emotional development as well as by any previous exposure to death in other settings (table 1). (See 'Understanding of death at different ages' above.)

●Approach to communication

•Children should not overhear the news that a parent has a life-threatening serious illness from others or be left to form their own conclusions about a parent’s illness. These scenarios may make them vulnerable to misconceptions about why the illness is progressing or how their life will change after a parent dies. (See 'Approach to the child' above.)

•The individual variations in children’s temperaments and development should be taken into account when communicating about a parent’s pending death. In addition, clinicians must respect the parents’ understanding of what is in their children’s best interest. (See 'Approach to the child' above.)

●Long-term outcomes in children – Studies of bereaved children show that many develop nonspecific, subclinical, and transient behavioral disturbances in the year following a parent’s death. However, one in five children are at risk for more serious mental health issues. (See 'Long-term outcomes in children' above.)

●Role of the parent’s clinician – While most adult clinicians do not have specific family- or child-centered training and expertise, they are in an important position to explore issues related to parenting concerns and child coping and to provide opportunities for enhanced family communication. (See 'Role of the parent’s clinician' above.)