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INTRODUCTION — The terminal phase of illness is a vulnerable time in a family’s life, especially when the person dying 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. One cannot underestimate how distressing the anticipated death of a parent can be, not only for the family but also for the clinical staff that are caring for the family.
Clinicians should seek to understand the family structure, values, and functioning so that medical and supportive care can be provided to the family as a whole. Attention to the children’s developmental stage and the family’s specific needs and circumstances can guide clinicians in helping patients and family members to support children during the parent’s illness and into the end of life period. In general, parents must be respected as experts on their own children, even if family functioning is complex or compromised. Their love and hopes should guide the clinical approach on how to prepare their children for one parent’s impending death.
This topic will address the issues surrounding the dying process and the death of a parent with dependent children, including the approach to parents, children, and the family as a unit. This topic will assume that the children are in a two-parent household with one parent having a terminal illness (the ill parent) and one being healthy. In families with a single parent, other relatives or caregivers may need to be enlisted to provide support. In addition, we will refer to children (rather than a child) throughout this topic. We recognize that this family unit may not be applicable to all situations and discuss specific issues and approaches in other family situations wherever relevant.
Other issues related to end of life care are discussed separately:
BACKGROUND — Most parents coping with a life-limiting illness have their children’s welfare at the forefront of their minds. However, parents (including both the ill and the well parent) display a range of responses to this situation, including varying emotional reactions, distress, or avoidance. Families may be vulnerable to difficulties around the end of life due to differences in coping styles among parents and differences in the cognitive understanding of how serious the situation is between parents and their dependent children . For example, the well parent may be too physically and emotionally preoccupied with his or her dying spouse to adequately address children’s concerns. Alternatively, the ill parent may choose not to discuss how serious the situation is with his or her children due to denial of his or her pending death.
●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
In addition, higher levels of parenting concerns are associated with anxiety and depressive symptoms, and worse quality of life in parents diagnosed with advanced cancer .
Parental functional status impacts concerns about being unable to meet physical responsibilities and also 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 [4,5]
A sample of bereaved fathers offers insights into the experiences of their dying wives relative to their children [6,7]. 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. This study also offers palliative care clinicians an opportunity to impact the surviving family members with clear prognostic communication, as fathers who reported clearer prognostic communication between the wife and physician had lower rates of depression and grief scores. 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 .
The terminal phase of parental illness can also be a vulnerable time for children due to multiple reasons, including:
●Heightened psychosocial distress – Studies show that during this time children experience more anxiety and depression, lower self-esteem, fears, misconceptions, and behavior changes in response to multiple stressors . For example, for children living with a parent with terminal 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 .
●Traumatic responses to end-stage illness – Children may also experience a range of traumatic responses to end-stage illness, especially with the accompanying physical changes, limitations in function, and increased dependence on medical equipment. This may be exacerbated by adult caregivers who may be struggling to deal with their personal emotional distress, which may make paying attention to the needs of the children difficult . In addition, the psychosocial functioning of the ill parent can influence the children’s response. At least one study showed 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 .
●Anticipatory grief – In general, anticipatory grief refers to the wide range of thoughts and feelings that accompany the sense of impending loss. For children, 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 may be clingier or more distant, and have vacillating recognition of just how ill their parent is. Children have strong needs to remain connected with the ill parent, and they may need both some denial about the possibility of death and active coping with the illness, and help with the anticipation of loss and development of continuing attachments .
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 [14-16]. The emotional experience of grief shifts as children move through normative development. Their maturing cognitive capacity and increasing life experiences allow them to explore different aspects of the loss as time passes . Therefore, it is important to recognize that children’s grief will likely emerge in different ways as they grow up, which will require tailored approaches to address grief. The role of the surviving parent can be particularly important in providing children with opportunities to remember and memorialize the dead parent .
CHILDREN’S UNDERSTANDING OF DEATH AT DIFFERENT AGES — In thinking about how to talk with families and children anticipating parental death, it is essential to have a sense of how children understand illness and death itself at different ages. Their perception of these topics is influenced by their general level of cognitive and emotional development, as well as by any previous exposure to death in other settings (table 1). It is important to remember that 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 children and adults are vulnerable to magical thinking about having a role in the death, especially when distressed or acutely grieving . (See 'Preschoolers (3 to 5 years)' below.)
Infants and toddlers (0 to 2 years) — Children two years or younger have no understanding of time or of 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 are sensitive to separations and 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, this can be accomplished by ensuring they are 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 as well, and the same equipment (eg, bottles, cups, stuffed animals, toys, blankets) should be used consistently.
Preschoolers (3 to 5 years) — Preschool children between three and five years have a wider range of social interactions than younger children. In addition, they have particular ways of understanding the world around them that have strong bearings on how they understand 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 – Exhibiting 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.” They may also attribute the grief and distress of other adults to their own behavior and need frequent reminders that they are not the cause of everyone’s upset feelings.
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 during this time. 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 often 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. The uncertainty about time that is inherent in terminal illness may be particularly hard for school-age children to grasp, especially at the younger ages in this group. As a result, the anticipation of death itself may become distorted. For example, a 10-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 the 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. We acknowledge, however, that some children may not welcome being approached by their teachers about what is going on in their own homes. Instead, parents should make sure that their children know who to contact within the school system, especially if they are having difficulties at or during school.
It is helpful for children 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 kids. 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 reassurances if and when they manifest.
Adolescents (13 to 18 years) — By 13 years, adolescents are forming their own identities and gaining a sense of comfort 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 death and being preoccupied with very specific and self-centered ways in which it affects their life [9,18]. A small qualitative study found that adolescents think about many aspects of the illness and its impact on them, with themes such as feeling the weight of the world on my shoulders, cancer changes everything, confronting or getting away from the cancer, talking about it, and cancer was a positive for me…it taught me . Teens are also likely 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 are generally self-involved, which should be understood as developmentally normal and not a negative character trait. Despite this, adolescents continue to need support and guidance. Because of their older age, these children may be asked to take on adult responsibilities in the context of a parental death, which may contribute to risky behaviors. The surviving parent should be mindful of teenagers who are taking on too many adult responsibilities or are engaging in risky behaviors such as substance abuse or illegal activity.
As teenagers approach older ages, they may 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.
FAMILY ASSESSMENT — Regardless of the clinical situation, it is important that clinicians gain a good sense of what both adults and children understand about the situation (including the seriousness of the disease and the notion 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 in openly and honestly discussing issues with their children, including ways to address worries and misconceptions in order to prepare them for the death of the ill parent.
Assessment in adults — Palliative care clinicians are poised 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 may have higher levels of concern about their children. In one study, these patients were :
●Patients with metastatic or recurrent cancer
●Patients who had a subjective understanding that they had “incurable” disease
●Patients with preexisting mental health disorders
The assessment of parents should encompass their understanding and expectations of the time course of the ill parent’s condition and his or her pending death. Each parent may have different understandings or capacities to think about end of life issues and may need separate conversations. Eventually, it is helpful if both parents can come to a similar understanding of how serious the situation is. This will help inform a shared approach to managing familial communication and support for the children.
Some questions that may be asked of the terminally ill patient and his or her partner (or friend) 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 that comes from their parents directly, rather than from health care providers, can be most easily understood and integrated into their everyday experiences and expectations, especially if it is discussed with them over time and reflects real-time changes in the parent’s situation. This is important because clinicians may not have opportunities or the expertise and comfort addressing 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, both by parents and as a family unit. In addition, clinicians should get an accurate understanding of what the children know up to this point.
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 language has been used to describe the illness to the children?
●What do the children expect about the outcome of the illness?
●What prior experiences have the children had with major life changes, illness, or death in their community or family?
●How have the children coped with these challenges?
●How have they managed these challenges as a family?
●Do the parents have particular concerns about how their children are coping with the illness so far?
●What are adults worried about in terms of how the children 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 among clinicians, the terminally ill parent, the healthy parent, and/or his or her adult caregivers about how to approach children and ensure their welfare. Indeed, directly talking with children may not even be possible in some clinical settings.
Special situations — Children may not grow up in a household with both of their natural parents, and these situations raise special issues that require alternative considerations. These are discussed below.
Children with only one parent — In our practice, some of the most challenging cases involve families in which there are no appropriate surviving caregivers. Single parents may have even more concerns about how their children are coping with the illness and how they might be cared for when they die .
It is important to actively engage single parents who are terminally ill about issues related to their children, including to actively encourage them to identify caregivers who can support the children during their illness and after they have passed away. In addition, early engagement in planning for guardianship is essential. Although some single parents facing the end of life may have trouble addressing these painful issues, palliative care clinicians are in an important position to engage them directly and, ultimately, may help parents come to some increased sense of having taken good care of their children up until their deaths and beyond. The involvement of social services can provide valuable assistance in these difficult situations.
Children with a non-biologic parent — Children naturally have different relationships with each of their parents, and the nature of the relationships may color the children’s feelings and coping with one or the other parent’s terminal illness. These differences may be exacerbated when faced with the death of a biologic parent and being left with a non-biologic parent. When discussing the pending death of a biologic parent with their children, it may be helpful for the dying parent to tell his or her children that he or she has confidence in the ability of the non-biologic parent to care for them. Clinicians can assist by lending their support to both parents during these discussions.
APPROACH TO CHILDREN — Children should not overhear the news that a parent is terminally ill from others or be left to their own conclusions about a parent’s terminal 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. Indeed, the worst way for children to hear news is by overhearing it, and many children will feel excluded despite the adults’ effort to protect them . 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 the 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 the children’s ages (eg, leukemia as a cancer of the blood system, glioblastoma as a brain tumor, cardiomyopathy as an end-stage heart condition).
We acknowledge that the approach parents take in this highly emotional situation varies. For some parents, it is very difficult to engage openly with their children, even when the children have observed the ill parent’s deteriorating status or have overheard others talking about the likelihood of death. Other parents may adopt a more open dialogue with their children specifically when it concerns the transition in goals of care from curative to palliative treatment, even if there is no observable change in the parent’s appearance or function, and death is likely many months away. Regardless, it may be difficult for children (particularly very young ones) to understand that one may live for some time despite being called “terminal.” In contrast, it may be confusing for them to anticipate death at every turn. (See 'Children’s understanding of death at different ages' above.)
Palliative care clinicians may be particularly well positioned to help families anticipate the process of death, identify turning points in the illness, and help parents and surviving caregivers prepare children for the death.
Timing of discussions with children — Most children (especially from school-age on) may have 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. Therefore, in an ideal situation, parents have already engaged their children in discussions throughout the ill parent’s illness, starting at the time of diagnosis. This increases the probability that children already have an age-appropriate understanding of the illness at the time the ill parent enters the terminal phase of his or her illness. The communication around the end of life may be easier when children have received honest information all along and when discussions about death are initiated early in the terminal phase, so that children have a clear understanding of the changes in function, focus of treatment, and anticipated course. (See 'Children’s understanding of death at different ages' above.)
Regardless of whether children were actively engaged in the ill parent’s illness, the approach of that parent’s death is a very sensitive time. In most cases, changes in a terminally ill parent’s appearance and functional status are useful markers to trigger discussions about the probability of impending death.
Introducing the discussion — Retrospective studies that describe the experience of parental death note that clear, honest information during the illness is important to children , although conversations between parents and children may not happen readily . Some parents (or other relatives) worry about introducing the idea of death to children, especially when the children have not considered this as a possibility. In such cases, open-ended questions may be useful to initiate discussion. Examples include:
●“Do you think about what could happen if Mom (or Dad) gets even sicker? Or different parts of her body stop working?”
●“Dad used to be able to take walks with us and play with you, but now he can’t because he is sicker, so he stays in bed a lot.”
For clinicians, the variations in children’s temperaments and development should inform when the topic of a parent’s pending death is raised. In addition, clinicians should assume that, in general, each parent has a valuable understanding of what is in their children’s best interest even in situations when both parents are not in full agreement with each other. Therefore, their input must be sought before the clinician gets involved. Studies looking at the trust that children have in the care that their parent received at end of life have 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 .
The approach should take into account the role of the clinician (primary care versus specialist versus palliative care clinician), whether there is a familiar relationship with the children, what information has been shared between the parents and the children, and each parent’s individual ability to engage in and cope with the issues related to advance care planning, the shift in the focus of care from treatment to hospice, and the expected progression of disease.
It is important that clinicians have a good sense of what the children already know. Children may ask about death directly and may be fearful as they witness a parent become more ill and less functional . Although there are few data to inform how best to prepare children for the death of a parent, specific family-focused therapeutic approaches during palliative care have also been shown to reduce distress and depression after the parent has died, particularly in high-risk families with adolescent and adult children .
In the context of a medical visit — Children may ask to come with their ill parent to medical visits, especially as they grow older. Regardless of their age, it is important to include them in family discussions about the end of life. This gives the children an opportunity to ask questions, which can be addressed directly by their parents and/or the clinician. 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 'Children’s understanding of death at different ages' above.)
APPROACH TO THE PARENTS
Leaving a legacy — Surviving children appear to value information about who the parent was when he or she was alive, the values and ideals he or she lived by, and what the deceased parent saw in their child . As a result, parents who are approaching the end of life often think about what they would like to leave for their children as a legacy. Broadly defined, a legacy can be something of material (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 good foundation for children to maintain a close relationship with a parent. When discussing legacies with parents, they should be asked to consider how they want the children to receive them (eg, distribution over time or at different ages). There are few data on how these communications are received by children over time.
Projecting a specific parental vision may leave the child feeling 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 age 8, 10, and then older), we suggest that such sentiments be written in generally so that they can be applied in a range of ways because it is not possible to predict who a child will become in the future. 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. As described above, 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 . 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.
APPROACH BASED ON LOCATION — 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 prior experience or personal wishes that will dictate whether they die at home, in the hospital, or in an inpatient hospice setting. If families have choices, they should consider the needs of the 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. In this case, the challenge may be that the well parent will have to divide their time between the inpatient setting with their spouse and being at home with the 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 should be facilitated whenever possible. Factors to consider to help facilitate these visits are summarized in a table (table 2).
Inpatient care settings — If a parent is expected to die in an inpatient or hospice setting, visits from children should be facilitated whenever possible. It is best to avoid exposing children to potentially traumatic situations (eg, drainage of pleural effusions or ascites at the bedside or placement of a central venous catheter). In addition, taking children to see a parent who may be agitated or delirious may be frightening to children and should be avoided. However, children should be allowed to visit with a parent who is either sedated or unconscious.
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). If this situation is encountered, children should be provided with opportunities to discuss their concerns and to make a decision that they can feel comfortable with. The well parent or other close relative or caregiver may be able to give examples of how the child might use the visit with the dying parent, eg, quiet presence, describing memories, expressing love, apology, or forgiveness. In general, concerns can usually be addressed with direct explanations and the creation of contingency plans. For example, a young child 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 at the end of life, children 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. Children should be accompanied by an 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 children. However, if the child desires or is willing to do so, they should be showed how to touch the dying parent and supported in their attempts.
After the visit, children should be asked about their visit in order to reassure the child and prepare better for the next visit. This can be accomplished by asking them what they found interesting, fun, scary, or uncomfortable. Any adult caregiver or clinician who has a relationship with the children and is comfortable doing so should engage in this discussion with them.
When in-person visits are not possible, other kinds of contact between the terminally ill parent and their children should be encouraged. Examples include:
●Making cards for their parent
●Encouraging phone calls or video chats
When death is imminent, last visits can be meaningful for children, especially older ones 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 children 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 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.
It is important that children 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. However, 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 the children 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 the children’s daily routines and their privacy needs. For families where the parent is expected to die at home, attention to certain logistical details can make things more comfortable for 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 children 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 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 the children should be once death occurs and the patient is removed from the home.
Addressing these types of logistics allows children to think about how much they want to be around during the final days and hours.
INVOLVEMENT OF OTHER SUPPORT SYSTEMS — For families with a terminally ill parent, designated helpers can facilitate activities of daily living (eg, provision of meals, visits, childcare, rides) that help families to maintain children’s 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 duties, such as homework, school 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 a child’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.
A child’s pediatrician may be a source of support or guidance, especially if they have followed a child and/or family very closely. They may also provide mental health referrals if the child begins to show additional signs of emotional distress, such as persistent anxiety, sadness, withdrawal behavior, acting out, or risk-taking present for weeks to months.
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 , 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 .
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. Using a developmental and thematic framework, 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 'Children’s understanding of death at different ages' above.)
ISSUES THAT ARISE AFTER THE DEATH OF A PARENT
Children’s participation in funerals and memorial services — Children 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 children 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. Children 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 should be based on their developmental stage:
●Older children should 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 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 children’s questions. Alternatively, they should know whom to ask (funeral directors sometimes have age-appropriate information) about these issues.
Complicated or prolonged grief — Although the behavioral and emotional sequelae of parental illness and death are usually transient and respond to general family, community, peer, and school support, some kids may suffer from a more-prolonged grief reaction that interferes with function. This syndrome of complicated grief has been recognized in adults and may be a relevant diagnosis for children.
Complicated or prolonged grief consists of a constellation of symptoms that interfere with function over time and include:
●Preoccupation with the deceased parent, including a sense of longing or yearning
●A sense of futility about the future
●Difficulty accepting the death
●Loss of security
●Anger and bitterness about death
In children bereaved by sudden parental death, complicated grief is significantly related to functional impairment, even after controlling for depression and posttraumatic stress disorder (PTSD) .
A form of complicated grief is “childhood traumatic grief,” which is used to describe children whose parents died in traumatic ways, such as in the attacks on September 11th, 2001. Childhood traumatic grief has a high correlation with PTSD [29,30].
LONG-TERM OUTCOMES IN CHILDREN — Many studies show that most children develop nonspecific, subclinical, and transient behavioral disturbances in the year following a parent’s death but later adjust normally [31,32]. Bereaved adolescents report more anxiety and depression within two years after family bereavement, and youth of lower socioeconomic status may be at higher risk for these internalizing problems . Adaptive functioning following parental loss is related to both child coping style and child-extrinsic factors, such as the religiosity of the family and positive reinforcement and empathy from the surviving parent . Overall, one in five children is at risk for a psychiatric disorder, including mood, anxiety, posttraumatic stress disorder (PTSD), or externalizing disorders , and a subset of these may be vulnerable to depression [35,36], especially if the death of the parent was as a result of suicide, accident, or sudden natural death [37,38].
Compared with children who have not experienced the death of a parent, parentally bereaved children have higher rates of psychiatric problems, although they are not as impaired as children with depression . The risk factors associated with decreased global function in children following the death of a parent include:
●Preexisting psychosocial risk factors 
●Lower socioeconomic status
●Depressed surviving parents 
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 child-centered emotional and structural support has significant impact on the children’s coping and ongoing connection with the deceased parent . In contrast, caregiver depression and PTSD symptoms may contribute to child depression . 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 .
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 children in both the short and long term [42-44]. Surviving parents may need additional support to weather the everyday challenges of child 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.
SUMMARY AND RECOMMENDATIONS
●The terminal phase of illness is a vulnerable time in a family’s life, especially when the person dying 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. One cannot underestimate how distressing the anticipated death of a parent can be, including for the clinical staff that is caring for the family. (See 'Introduction' above.)
●In thinking about how to talk with families and children anticipating parental death, it is essential to 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. (See 'Children’s understanding of death at different ages' above.)
●With careful discussion among clinicians, the terminally ill parent, the healthy parent, and/or his or her adult caregivers, it may not be necessary for clinicians to communicate with children directly, and in some clinical settings, it may not even be possible.
●Children should not overhear the news that a parent is terminally ill from others or be left to their own conclusions about a parent’s terminal 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 'Family assessment' above.)
●The individual variations in children’s temperaments and development should be taken into account when the topic of a parent’s pending death is being raised. In addition, clinicians should assume that, in general, each parent has a valuable understanding of what is in their children’s best interest, even in situations when both parents are not in full agreement with each other. (See 'Approach to children' above.)
●Parents who have come to terms with a diagnosis of a terminal illness often think about specific legacies or communications that they would like to leave for their children. Family photos and memorabilia are good foundations for children to maintain a close relationship with a parent, especially after he or she has died. In addition, parents should understand the role their wider community of friends and relatives can play in building a legacy for their children. For those parents who wish to impart legacies to their children, they should consider how they want the children to receive them (eg, distribution over time or at different ages). (See 'Approach to the parents' above.)
●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 prior experience or personal wishes that will dictate whether they die at home, in the hospital, or in an inpatient hospice setting. If families have choices, they should consider the needs of the children in addition to the medical or personal needs of the dying parent. (See 'Approach based on location' above.)
●Studies of bereaved children show that many children develop nonspecific, subclinical, and transient behavioral disturbances in the year following a parent’s death. However, one in five children are at risk for a psychiatric disorder, and a subset of these may be vulnerable to depression. (See 'Long-term outcomes in children' above.)
●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.)
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