Caring for Parents after the Death of a Child

Abstract

Objective

To describe the health outcomes of bereaved parents and identify practical strategies for critical care providers as they support and provide anticipatory guidance to bereaved parents.

Data Sources

PubMed and PsycInfo databases with search terms of bereavement, grief, with parent and pediatric or child complimented by personal experience and knowledge.

Study Selection

We sought studies describing parental health outcomes and needs of bereaved parents after the death of their child.

Data Synthesis

A narrative literature review was performed and framed from the perspective of pediatric intensive care unit (PICU) providers who care for bereaved parents. We aimed to describe experiences of grief and short and longer term consequences, and approaches to the care of parents and families in the immediate period and in the months after the death of a child.

Conclusions

The death of a child is a traumatic experience that can put parents at risk for adverse mental and physical health during bereavement. Health professionals working in PICUs can benefit from knowing these risks to best support bereaved parents, both during their child’s hospitalization and in the early post-death period. The bereavement experience of parents is an adaptive process and ongoing professional support may be required for vulnerable families. After the child’s hospitalization and death, a bereavement follow-up meeting with PICU physician(s) and staff may allow parents to gain additional information, emotional support and provide an opportunity for parents to give feedback on their experiences.

Introduction

The loss of a child is a devastating experience for parents. In this paper, the term ‘parent’ refers to the child’s primary caregivers and could include biological or adoptive parents, grandparents and other guardians. The grief experienced by parents is more intense and prolonged than grief experienced following the death of other family members (1, 2). The intensity of parental grief is believed to be due to the close and enduring relationships parents have with their children (3). Children are expected to outlive their parents; the disruption in this natural order can destroy parents’ hopes and dreams for the future. A child’s death may also profoundly change parents’ roles and sense of self as responsibilities of caring for their now deceased child are removed.

In developed countries pediatric and neonatal death are relatively uncommon (<1% compared to 4.3% globally) (4). Because these are rare events, bereaved parents’ network of family and friends are often unprepared to anticipate and respond to bereaved parents’ needs. Insufficient social support may increase parents’ vulnerability to complicated grief and other adverse health outcomes during bereavement, such as mental health, physical well-being and social consequences. Because the consequences for parents may be severe and community social support may be less than ideal, it is vital for critical care providers to understand the ongoing experience of loss faced by bereaved parents and to provide the necessary in-hospital and post-discharge support needed. In this paper we offer guidance to critical care providers in supporting parents after the death of their child (Table 1). Our aim is to describe the health outcomes of bereaved parents, suggest supportive interventions, and provide anticipatory guidance to address common concerns of bereaved parents.

Table 1.

Objectives for High Quality Care for Parents after the Death a Child

Objective	Suggested actions to achieve objectives
To provide supportive care to parents immediately after the death of the child while the parents are in the PICU	Consider the environment, minimizing noise and traffic. Support legacy building activities. Provide adequate time for parents to acutely grieve. Support family presence and prevent disruption of other patients’ care. Provide anticipatory guidance about the immediate post death activities and care of the child’s body.
To establish a follow-up plan	Ensure bilateral communication, giving parents contact information for key PICU providers and vice versa. Discuss likely contact parents can expect, how they will be contacted, by whom and when. Both verbal and written. Provide support for practical considerations (transportation of child’s remains, contacting funeral home, essential documentation). Provide information on hospital and community bereavement resources.
To screen for complicated grief and other extreme reactions	Before PICU discharge, provide support and resources for extreme distress (social work, mental health specialists, and spiritual support). Have mechanism to provide support for unexpected ‘moments’ of crisis (e.g., important anniversary, holidays, and child’s birthday).
To address future questions about the child’s course of illness and assist with medical and family planning issues	Offer a follow-up bereavement meeting (see Table 5). Use your hospital bereavement team resources. Incorporate customization of contact and referrals for specific needs of family, child and situation.
To support the healthcare team to provide aftercare to families	Inform all relevant teams and providers of the child’s death using organizational process for notification. Disseminate parent and family information (service arrangements, family messages) as requested by the family. Include potentially disenfranchised team members, community providers, non-professional hospital staff in communication and provider support interventions (debriefings, memorial activities).

Health Outcomes of Bereaved Parents

Mortality

Population based studies have demonstrated an increased risk of mortality among bereaved parents compared to parents who are not bereaved, with significantly higher risks in parents of children with trauma-related deaths (5–7). The risk of mortality has been shown to be higher for bereaved mothers compared to fathers and higher for parents who lose minor children compared to adult children (5–7). Research findings are somewhat conflicting regarding how parental risk of mortality changes with time since the child’s death. Some research suggests the risk of parental mortality is highest early after the child’s death and decreases with the passage of time since the child’s death (7). Other research suggests parental mortality risk increases with time since the child’s death, especially for the death of adult children (6). These data suggest all bereaved parents are at risk with the most vulnerable parents being mothers suffering the trauma-related death of a young child. These parents may benefit most from increased support from critical care providers after the loss.

Physical Health

Parental bereavement has been associated with a general decline in physical health (8). Bereaved parents have been shown to have greater healthcare utilization, greater number of sick days away from work, and more sleep problems (8, 9). Whether there is an increased risk for specific types of illnesses among bereaved parents is more controversial (10). Bereaved parents have been found to be at increased risk for myocardial infarction, cancer among bereaved mothers, and multiple sclerosis (11–17). Various biological links have also been proposed, including effects on the immune, neuroendocrine, and cardiovascular systems (18). Decreased physical health may also be related to an increase in risk behaviors such as poor diet, lack of exercise, alcohol consumption, or drug abuse (19). Critical care providers may want to encourage positive health behaviors with bereaved parents knowing these risks.

Mental Health

Virtually all studies examining mental health of bereaved parents report high risk for disorders such as complicated grief (20–23), anxiety and depression (24), and post-traumatic stress disorder (25). Bereaved parents have been reported to have increased rates of physician visits for mental health issues (26) and increased rates of first time psychiatric hospitalization especially among mothers (27). Bereaved parents often report suicide ideation (28), and have higher rates of suicide than non-bereaved parents and the general population (5, 29–30).

Psychological symptoms, such as anxiety, depression and stress, are often part of a normative grief response. Such symptoms may be most prominent early after the death and gradually lessen with time as parents adjust to their child’s death. Complicated grief, also referred to as prolonged grief, deviates from a normative grief response in intensity and/or duration of symptoms (31, 32).

Complicated grief consists of persistent separation distress and a chronic stress response. Specific criteria (A–F) for a diagnosis of complicated grief include (A) loss of a significant other to death, (B) symptoms of separation distress, (C) cognitive, emotional and behavioral symptoms, (D) duration of 6 months or longer since the death, (E) impairment in functioning, and (F) the disturbance is not better accounted for by other mental health disorders (Table 2) (31, 32). Complicated grief has been estimated to occur in about 10–20% of bereaved individuals (33). However, among parents whose children die in Pediatric Intensive Care Units (PICUs) in the United States, almost 60% have symptoms consistent with complicated grief 6 months after their child’s death, and in about 40% of parents this grief persists at 18 months post loss (21, 22). Risk factors for complicated grief among bereaved PICU parents include being the child’s mother, death due to trauma, insecure attachment styles (i.e., anxious and/or insecure personal relationships), and grief avoidance behaviors (21).

Table 2.

Diagnostic Criteria for Complicated Grief

Criteria	Criteria label	Description
A	Bereavement event	Loss of a significant other to death
B	Separation distress	Yearning – occurring daily or to a disabling degree Craving, pining, or longing for the deceased Physical or emotional suffering as a result of the desired, but unfulfilled, reunion with the deceased
C	Cognitive, emotional, and behavioral symptoms	5 or more experienced daily or to a disabling degree Confusion about one’s role in life or diminished sense of self Difficulty accepting the loss Avoidance of reminders of the reality of the loss Inability to trust others since the loss Bitterness or anger related to the loss Difficulty moving on with life Numbness (absence of emotion) Feeling that life is unfulfilling, empty, or meaningless Feeling stunned, dazed, or shocked by the loss
D	Timing	At least 6 months have elapsed since the death
E	Impairment	Clinically significant impairment in social, occupational, or other important areas of functioning
F	Relation to other mental disorders	The disturbance cannot be accounted for by major depressive disorder, generalized anxiety disorder, or post-traumatic stress disorder

Social Health

In addition to the physical and mental health conditions described, parental bereavement has been associated with many other adverse outcomes. Marital disruption has been reported up to eight times population divorce rates, and is more common among bereaved parents of a traumatic death of the child (34, 35). Prior to the death of the child, many families either choose to quit their job to care for their ill child, or are involuntarily unemployed due to significant loss of productivity at work or prolonged absences. This unemployment is often extended after the death of the child due to prolonged grief and loss of purpose (36). Parents have reported an average of 15 weeks of leave without pay, which leads to further life stressors such as poor quality of life, financial crises and interpersonal conflicts (36).

Dual Process Model of Coping with Bereavement

Understanding how parents cope with such devastating loss can assist the critical care provider in recognizing complicated grief and inform supportive and facilitative strategies. Stroebe and colleagues (37) describe a dual coping process whereby bereaved individuals oscillate between two types of stressors; those associated with the child’s death (loss-oriented stressors) and those associated with ongoing life (restoration-oriented stressors). For parents, loss-oriented stressors might include yearning for the deceased child and reliving the events surrounding the child’s death. Restoration-oriented stressors might include restructuring family responsibilities, going back to work, finding new roles and relationships, and avoiding grief. An important postulate of the model is that oscillation between the two types of stressors is necessary for adaptive coping to occur. Complications in grieving are proposed to be more likely when an individual’s coping process focuses exclusively on the loss, or exclusively on restoration. Either reaction, without any oscillation between the two, is extreme and may put a person at risk for adverse health outcomes. Critical care providers should help bereaved parents to anticipate this normative movement between the two areas of grief work.

Supporting Bereaved Parents in the PICU

Parents often rely on health professionals working in PICUs for support around the time of their child’s death and during early bereavement (38). Information about supporting bereaved parents in PICUs comes primarily from descriptive studies in which parents have retrospectively shared their experiences. These studies have aimed to identify and describe various types of support bereaved parents perceive to be important. Major domains of parental need near the time of a child’s death in a PICU include: (1) Support for the parental role and the parent-child relationship, (2) Personal support, (3) Professional support, and (4) Environmental support.

Supporting the Parental Role and Parent-Child Relationship

After the child’s death, the parental role can be supported by giving parents time with their child’s body. Although the amount of time parents describe needing with their child’s body after the death is difficult to define, parents do report profound dissatisfaction when they perceive they have been rushed (38). Offers to create keepsakes and legacy items such as the child’s handprint or lock of hair, 3D hand molds, arm band, recordings of the child heartbeat, or photographs of the child are helpful for some parents. In some jurisdictions these activities require consent. Legacy items can ease the family’s transition out of the hospital, assist in marking the event, provide important tangible connections to the child in the future and create a connection for siblings. Dressing the child in clothing, removing medical devices if possible, using pleasant smelling bath and skin care products for after death care can aid in de-medicalizing the child and normalizing parental memories of these moments.

Personal Support

Parents’ often need personal support from their extended families, friends, and social networks near the time of their child’s death (38, 39). Trends embracing open parental presence policies allow family and friends to visit at the parents’ discretion. These visitors also need compassionate care from the PICU staff and guidance regarding their presence in the PICU. Staff may need to help control the flow of family and friends to ensure the care of other children in the PICU is not disrupted.

Professional Support

Professional support is enacted through the caring, sustaining, expert presence of a health care provider such as physicians, nurses, chaplains, social workers, grief coordinators, and other professionals in PICUs (38). Attributes of professional support that have been described by parents as supportive include: compassion, honest communication, trust, teamwork, and demonstrated respect for their child’s personhood (38, 40). Compassion is usually perceived by parents through the small everyday interactions they have with staff. For example, parents describe being offered a glass of water or facial tissues as acts of compassion. Honest communication refers to sharing information with parents transparently without barriers that mislead or prevent full understanding. Common communication issues identified by bereaved parents in PICUs are outlined in Table 3 (41).

Table 3.

Communication Issues Identified by Bereaved Parents in PICUs

Communication Issue	Description of positive behaviors to reinforce
Availability	Staff accessibility and attentiveness
Honesty and comprehensiveness	Complete and straightforward information
Affect	Showing emotion when appropriate
Hope	Providing realistic hope and prognosis
Use of complex vocabulary	Limiting medical jargon
Pace of information	Match delivery of information with parental comprehension
Contradictory information	Provide consistent information across all health professionals
Body language	Maintain eye contact and other nonverbal behaviors

Trust has been described by parents as their need to feel they can rely on the actions and advice of health professionals, and that the care provided was in the best interest of their deceased child (38, 40). Trust can be difficult to establish in the dynamic context of modern PICUs as the physician or nurse caring for the child at the time of death may not have an established relationship with the parents. This unfamiliarity with the PICU providers at the time of death can be mitigated by ensuring continuity of providers in other team members, such as a fellow, respiratory therapist, chaplain, social worker and other aligned health professionals caring for the child. It is equally important for the PICU team to include other trusted consultants (as indicated by the parents) to provide support to the family at the time of death and immediately following. Inclusion allows activation of the parent’s professional network, brings providers with important history into the circle of bereavement support and provides an opportunity for the extended teams to achieve closure and say goodbye. This meaningful expression of compassion indicates to parents that their child was valued.

Environmental Support

Environmental factors refer to the physical structure of the PICU and operational policies that guide practices within that physical space. PICUs are high-tech, fast-paced environments where patients are continuously monitored and observed. However, after a child’s death, parents describe a need for privacy, creation of a reverent atmosphere, and access to facilities for self-care and to accommodate family and friends (38, 42). Parents have described privacy as seclusion from the sights, sounds, and presence of others.

PICU staff can help to facilitate privacy and reverence through simple means such as closing doors and blinds, reducing or discontinuing alarms, avoiding loud conversations, and giving parents and families time alone with their child’s body after the death. Parents need this supportive environment to make decisions in the immediate and in weeks to months following the death of their child.

Supporting Bereaved Parents after their Child’s Hospitalization and Death

Before departing the hospital parents often have many questions about next steps (Table 4). Parents are leaving the hospital for the last time and without their child, a reality they never imagined. It is possible parents will not be able to hear or process information given to them immediately after the death of their child. Being prepared to answer those questions at a later time can positively impact their experience and ongoing grieving processes. Ensuring parents have contact information to call for questions and that the hospital staff also have contact information for the parents is vital to maintaining a connected relationship. Designating a family gatekeeper, prior to leaving the hospital and obtaining that gatekeeper’s contact information can ease the burden for parents.

Table 4.

Areas of frequently asked questions by parents after the death of a child

Care of child’s body

What happens to the child’s body after leaving the PICU?

How to view the child’s body in the morgue

Repatriation of the child’s body closer to home

Autopsy questions

How do I receive legacy items?

Can I take my child home with me?

Necessary documentation process

Practical guidance

Making funeral arrangements

Managing child’s social media – Facebook, Twitter, Instagram accounts

Canceling medical appointments, home nursing, etc.

What to do with medical equipment at home – ventilator, feeding supplies, etc.?

What to do with car seat and other baby items?

Support for lactating mothers, such as milk donation and supplies

How to access the child’s health records?

Care for the family

Bereavement resources for parents, siblings, school, etc.

Crisis hotline information for suicidal ideation or mental health issues

Genetic testing

Identifying immediate support systems

Follow up contacts with the hospital teams

Many parents continue to seek support from health professionals after their child’s death. Informal types of bereavement support such as sympathy cards, letters, emails, phone calls, and attendance at funerals and memorial services are deeply appreciated by parents when provided by health professionals who cared for their deceased child (43). Many critical care programs have incorporated an outreach or follow-up program for bereaved parents. Hospital based bereavement programs have been recently endorsed as best practice (44). Bereavement programs should include recognition of the family’s loss, provide information to the parents on what to expect in the grief process, screen for complication of grieving in the family, decrease the family’s isolation as they adapt to the child’s death and provide active outreach to assist parents in dealing with their grief. Bereavement follow up should also include education and support for providers who are engaged with bereaved families.

Parent-Physician Follow-Up Meetings after a Child’s Death in the PICU

Formal follow-up meetings between parents and their child’s PICU physician(s) or other care providers can also be offered and serve as a forum to provide parents with additional medical information and emotional support, offer referrals and present an opportunity to give feedback on their hospital experience (45). The NICHD Collaborative Pediatric Critical Care Research Network developed a framework for conducting parent-physician follow-up meetings after a child’s death in a PICU (45, 46). The framework was not intended as a “script to be followed” but rather a flexible guideline that can be adapted to the specific context of each family’s circumstances, including cultural and religious norms (Table 5).

Table 5.

Framework for Parent-Physician Follow-up Meeting

1. Extending the meeting invitation to bereaved parents Develop a system for meeting invitation and follow-up Extend the invitation in a variety of formats and at regular intervals during the first year

2. Preparing for the meeting Assess family preferences for the meeting Meeting location (hospital, telephone, other); date/time Family attendees and guests (grandparents, pastor) Special family needs (e.g. interpreter) Discussion topics (e.g., specific parent questions) Invite hospital attendees (bedside nurse, social worker, subspecialists, trainees) Review medical record and psychosocial history; prepare the team

3. At the meeting Open the meeting: welcome family, express condolences, make introductions, give floor to parents to identify issues for discussion During the meeting: provide a balance of information, emotional support, opportunity for feedback Sample of discussion topics: chronology of events, cause of death, treatments provided, autopsy report, genetic risk, end-of-life decisions, ways to help others, bereavement support, family coping, reassurance, referrals, feedback to hospital Closing the meeting: summarize topics discussed, ask for further questions, provide referrals and any requested documents, acknowledge sadness Communicate effectively Use lay terminology Adjust pace to parents’ needs Refer specifically to child, rather than children in general Behaviors to avoid: blocking, lecturing, providing premature reassurance Behaviors to cultivate: listen, use “ask-tell-ask,” respond to emotions

4. Following the meeting Send thank-you note and bereavement support materials Follow up on any unfinished tasks identified at the meeting Debrief with hospital participants

The framework for parent-physician follow-up meetings advises that an institutional system be put in place to invite parents to meet (45, 47). Although most PICU physicians included in the network’s studies reported a willingness to meet with bereaved parents, physicians also described a lack of time to contact parents and arrange meetings as an important barrier. The framework suggests another designated professional, such as social worker or chaplain, be responsible for contacting and inviting parents. Parents’ preferences for the meeting (e.g., meeting participants, discussion topics) and attendance of other hospital staff should be assessed at the time the meeting is scheduled. PICU physicians often prefer that a bereavement care specialist (e.g., chaplain or social worker), another subspecialist or the child’s primary care physician attend the meeting. Parents often request the attendance of a bedside nurse who cared for their child.

Topics parents have reported wanting to discuss during follow-up meetings include the chronology of events leading to their child’s death, the cause of death, treatments their child received, autopsy findings, genetic risks, content of medical documents (such as the death certificate), decisions made during their child’s course of illness (such as decisions regarding limitation or withdrawal of life support), ways to use their experiences to help others, and how to explain their child’s death to family and others (48). Emotional support for parents and families during follow-up meetings mainly includes providing reassurance and the opportunity for parents to reconnect with physicians and staff.

Resources

When a child dies, the ripple effect reaches beyond parents. The extended family, siblings, classmates, other patients, and many others in the community also grieve and need support. Resources vary by geographical location, but bereavement groups and online resources can usually be found in most countries. For example, the National Hospice and Palliative Care Organization (NHPCO) in the USA has prepared a guide for families and friends grieving the loss of a child containing information that is relevant in many countries (49). Bereaved Parents of the USA also has brochures and online support groups that are no cost to join (50). There are also disease-specific support networks, bereaved siblings grief camps, and religious-based grief support groups available in many countries. These are a small sample of resources available. Including your local chaplains, hospices, funeral directors, social workers, and palliative care teams can help parents connect with the community support they will need after their child dies.

Conclusions

The death of a child is a devastating experience that can put parents at risk for adverse mental and physical health during bereavement. Health professionals working in PICUs need to develop knowledge and skills to support bereaved parents, both during their child’s PICU stay and in the early post-death period. The bereavement experience of parents is an adaptive process and ongoing professional support may be required for vulnerable families. After the child’s hospitalization and death, a bereavement follow-up meeting with PICU physician(s) and staff may allow parents to gain additional information, emotional support and provide an opportunity for parents to give feedback on their experiences.