Grief and Bereavement in Pediatric Palliative Care #502

Background and Definitions

• Grief is the natural emotional response to loss.¹ In pediatric illnesses, grief may be a response to physical loss (a patient missing her own bedroom while admitted to the hospital), a relational loss (separation from peer friendships due to extended hospitalizations), and loss of meaning (ambitions, dreams, or hopes for the future are compromised by a life-limiting illness). For children and families, grief often begins at the time of diagnosis and fluctuates through the disease trajectory.

• Anticipatory grief occurs prior to the death or loss; it may even start at diagnosis disclosure.¹

• Bereavement is the state of loss involving the death of a loved one.

• Mourning denotes the culturally influenced ways of expressing grief through customs or rituals, such as memorial services or dress codes, e.g., wearing black.¹

Culturally informed care in pediatric grief recognizes that grief in children will be expressed in diverse ways across traditions, faith systems, and cultures. Typical grief reactions, both prior to and following a loss, may include waves of denial, emotional numbness, anxiety, anger, and sadness. Grief reactions may impact physical, spiritual, psychological, cognitive, and behavioral domains. Expressions and timing of grief vary based on previous losses, individual communication styles, personality, culture, and family tradition, as well as stage of childhood development. Guidance, therefore, must be personalized.

Caregiver grief

Because of the unique caregiving role and expectations related to being a parent or guardian, the death of a child is one of the most intense emotional challenges.² Bereaved parents/guardians often describe feeling as if they have lost a part of themselves and a connection to the future. Guilt and a search for meaning as a part of their grief are common.² It is important to recognize that most continue to yearn for their child for the rest of their lives. Special occasions (anniversary of the child’s diagnosis, death, the child’s birthday, or holidays) can trigger even more intense grief reactions. How families cope with these occasions varies; some preserve traditions, while others try new ways of marking these occasions as they adapt to the loss.

Dual process model of coping

Contemporary theories of adjustment to loss include the dual process model of coping, which posits that adaptation to loss involves oscillation between confrontation of the loss/processing of related emotions and reengaging in life without the deceased physically present.^3,4 Rather than “getting over” or recovering from loss, loved one’s cope by learning to coexist with their grief.^5,6 Continued bonds to the deceased in most instances are viewed as adaptive and are particularly important for adjustment.^1,3,4 Relationships with family, community, and hospital staff; purposeful meaning-making; and mental health support have been noted as protective in grief adaptation.⁷

Clinical assessment and approach

While the approach to bereavement support for parents and guardians varies across settings,⁸ parents/guardians nearly always report appreciation when they feel that their child was not forgotten by the clinical team.⁹ Standardized and personalized bereavement outreach is considered standard of care in pediatric settings.¹⁰ Based on family preference and program feasibility, bereavement outreach could take the form of a condolence phone call, card, or an in-person presence.¹¹ (See Fast Fact #443). When providing bereavement support to the guardian or family member of a child who recently died, consider the following care pearls:

• Risk factors for mental health challenges in bereavement include low levels of social support, social isolation, anxious and avoidant attachment styles, a history of separation anxiety, and high levels of dependency on the deceased.¹ Closer bereavement monitoring may be needed.

• Prolonged or “complicated” grief disorder is generally only diagnosed 12+ months from the loss. It involves frequent, persistent yearning for the deceased as well as other symptoms characteristic of acute grief that persist for 12 months or longer.^12–14 Consider a mental health referral.

• Research tools to assess prolonged grief symptoms include the Inventory of Complicated Grief and the PG-13.^12,15 The PG-13-R, reflecting the diagnostic criteria recently established in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, was recently validated.¹⁴ In clinical practice, the Brief Grief Questionnaire is commonly used as it is only a 5-item self-report or interview instrument.

• Evaluate for signs of personal neglect, an inability to function, or self-destructive behavior; all warrant a mental health specialist referral.¹⁶

• Screen for suicidality¹² when working with bereaved parents/guardians/siblings.

• Even when family members seem to be functioning well, offering mental health referrals can help.⁴

Teaching points

Parents, guardians, and/or siblings benefit from interdisciplinary psychosocial grief support from the time of diagnosis through the disease trajectory and after the death of a child.¹⁰ Guardians/family members should not be expected to “get over” the death of a child or rushed into “moving on.” Ongoing patience, clinical monitoring, and support are needed.