Loss and Grief in the Childbearing Period

Loss and Grief in the Childbearing Period Denise Côté-Arsenault, PhD, RNC, IBCLC, FNAP

Introduction • Perinatal loss includes infertility during the preconception period, fetal death during pregnancy and infant death in the first year of life. • Losing a wished-for child is startling and unexpected. • Responses to this loss range from disappointment to life-changing anguish (Woods & Woods, 1997).

Types of Perinatal and Neonatal Loss

Infertility • Infertility is the inability to conceive after at least 1 year of trying. • In the United States in 2002, about 12 percent (7.3 million) of women age 15 to 44 had difficulty getting pregnant or carrying a baby to term (Chandra, Martinez, Mosher, Abma & Jones, 2005).

Perinatal Mortality • Perinatal mortality has two accepted definitions: • Death at >20 weeks gestation and <28 days of life • Death at >28 weeks gestation and <7 days of life • Perinatal mortality includes ectopic pregnancy, miscarriage and stillbirth.

Perinatal Mortality (Continued) • There are an estimated 1 million fetal losses each year in the United States; most occur before20 weeks gestation (MacDorman et al., 2007). • Miscarriage rate estimates range from 15 percent to 50 percent of conceptions (ACOG, 2002; American Pregnancy Association, 2007; Stoppler, n.d.). • The stillbirth rate is 6.2 per 1,000 births (ACOG, 2009).

Infant Mortality • Infant mortality is the death of an infant during the first year of life. • The infant mortality rate in the U.S. has not declined much since 2000; it hovers at around 6.68 per1,000 births (Mathews & MacDorman, 2010).

Infant Mortality (Continued) • Preterm birth continues to be a primary cause of infant death in the United States. • More than half a million babies were born prematurely in the United States in 2007 (Hamilton et al., 2008). • All preterm infants are at greater risk than term infants for lifelong health problems, and their early births take emotional and financial tolls on their families (Als et al., 1994; Glaser et al., 2007).

Infant Mortality (Continued) • In 1990, the sudden infant death syndrome (SIDS) rate was 1.3 per 1,000 births; in 2006, the rate was <.50 per 1,000 births (American Lung Association, 2010). • Sudden unexpected death in infancy (SUID) includes SIDS and other causes of infant deaths such as suffocation.

History of Pregnancy and Infant Loss in America • America’s perspectives on death are evolving. • Although losses in pregnancy and birth were seen as real possibilities in the 18th and 19th centuries, families still mourned these losses (Hoffert, 1989).

History of Pregnancy and Infant Loss in America (Continued) • Birth moved from the home to the hospital in the early 1900s. • Pain relief efforts left women unaware of their pain and of actual birth, whether stillborn or live (Leavitt, 1986). • The stage was set for hiding death from women and their families; a shroud of silence grew around perinatal death.

History of Pregnancy and Infant Loss in America (Continued) • Acknowledgement and integration of loss into care began slowly, but it has persevered. • The need for this approach forms the basis for training for nurses, bereavement counselors and research into best-care practices.

Attachment Theory • Bowlby (1969) was the first to identify and discuss human attachment. • Klaus and Kennel (1976) describe behaviors that demonstrate a bond between mother and baby before birth. • Peppers and Knapp (1980) show that attachment begins when planning a pregnancy.

Rubin’s Tasks of Pregnancy • The mother: (Rubin, 1984) • Ensures safe passage for self and baby • Ensures social acceptance of self and baby • Binds-in to the baby • Gives of herself • Rubin’s framework helps nurses identify how women are affected when pregnancy tasks are incomplete.

Pregnancy as a Rite of Passage • Each rite of passage has three stages: • Separation • Transition • Incorporation • A woman separates herself from her old status when she announces her pregnancy. • The transition takes place during the 9 months of pregnancy.

Swanson’s Theory of Caring • Through inductive analyses, Swanson (1991) identified five caring processes: • Knowing • Being with • Doing for • Enabling • Maintaining belief

Prenatal Testing • Prenatal tests include: • Biophysical profile (BPP) • Chorionic villus sampling (CVS) • First trimester screening • Maternal blood screening • Amniocentesis • Ultrasound • Fetal monitoring

Prenatal Testing (Continued) • Prenatal tests can have a significant impact on women and their families; this impact often is neither acknowledged nor addressed by health care providers. • Test results can be shocking. Just having a test can bring back memories of bad news in past pregnancies.

Prenatal Testing (Continued) • Technological advances in recent decades have opened the door to assessing genetic make-up and witnessing fetal development like never before. • Families need to understand: • The purpose of a test • What it can and cannot tell • Its risks for mother and baby

Ultrasound • It may be during the ultrasound that a couple learns of their baby’s death; high anxiety prior to ultrasounds in subsequent pregnancies should be expected for these parents (O’Leary, 2005). • Providers may give ultrasound images to parents to reassure them and to assist in differentiating a new pregnancy from past ones.

Fetal Monitoring • Electronic fetal monitoring in the clinical setting began in the 1960s. • Although parents may have seen the heart beating on ultrasound, the sound through the abdominal wall still holds high significance.

Genetic Testing and Counseling • Whether prior to conception or after a loss, understanding the familial traits or risks of having a baby with genetic disorders or disease can be useful. • Chromosomal tests can determine the presence of single-gene defects for only select diseases or conditions; however, the patterns of inheritance are known in a vast number of disorders.

Genetic Testing and Counseling (Continued) • Genetic counseling is complex and requires specialized education and training. • Nurses should recognize that genetic causes of loss can lead to feelings of guilt, blame and defensiveness within extended families as they review family histories.

Elective Abortion • The ethical debate over abortion affects loss issues associated with life-threatening fetal conditions discovered in the first half of pregnancy. • Nurses must understand their own beliefs about elective abortion and support families as they make their decisions.

Fetal Personhood • The issue of fetal personhood is complex with social, religious, legal and ethical dimensions. • Bereaved parents have assigned some degree of personhood to their baby; therefore, their loss is real, for a real person who would have been a part of their life and their family (Côté-Arsenault & Dombeck, 2001).

The Tentative Pregnancy and Anticipatory Grief • Rothman (1986) found that women withheld their emotional bonds for the pregnancy and baby until after they received test results. • Anticipatory grief is the preparation for death during or prior to an inevitable loss (Hynan, 1986; Rando, 1986), as opposed to grief after a loss.

Grief and Mourning • Grief is an emotional response to the loss of something or someone held dear; it is the internal response to loss. • Mourning is a public or external response to the death of a loved one. • The period of time during which grief and mourning occur after a death is called bereavement.

Grief and Mourning (Continued) • No two people respond to the same event or loss in exactly the same way; grief is individual and depends on how loss affects each person. • Intense and continued distress symptoms beyond 6 months to 1 year that interfere with one’s ability to function and enjoy life should be evaluated by a mental health professional (Morrow, 2009).

Theories of Grief • Freud (1961/1917) set the stage for early theories of grief. • Kübler-Ross (1969) described grief as a series of stages: • Denial and isolation • Anger • Bargaining • Depression • Acceptance

Theories of Grief (Continued) • Stroebe and Schut (2001) suggest a dual process of grieving that includes oscillation between two coping modes: • Loss orientation (focused on adjusting to a loss) • Restoration orientation (focused on how to move on in light of a loss)

Grieving Styles • Martin and Doka (1999) identify two primary grieving styles that are formed by culture, personality and gender: • Instrumental grieving • Intuitive grieving

Grieving Styles(Continued) • Common grief responses specific to perinatal loss include: • Heavy or aching arms • Avoiding pregnant women and babies • Sense of loss of the future and shattered dreams • Sense of vulnerability in the world (not as safe as always assumed) • Hypervigilance with other children

Developmental Stages and Grief • An individual’s developmental stage (Erikson, 1980) influences the way he processes and responds to loss. • Most pregnant women and their partners are in the stage of young adulthood (19 to 40 years of age). • The basic conflict during this stage is intimacy vs. isolation, in which individuals strive for positive relationships to avoid isolation.

Helping Families Plan for Loss • In instances where death is inevitable and there is time to plan, nurses can do many things to help the family (Kavanaugh et al., 2009). • Decision-making is a process, not a one-time event.

Helping Families Plan for Loss (Continued) • Nursing considerations when helping families plan for a baby’s death: • The family’s cultural and spiritual beliefs • The family’s level of acceptance of the baby’s condition • The support the family gets from one another and from others • The family’s ability to agree that the goal is their baby’s comfort and care, rather than a cure

Birth Plans • A birth plan is a communication tool for parents to use to express their thoughts and desires for an upcoming birth. • The same idea applies, and may be more important, for parents who know they are delivering a stillborn, a sick baby or a baby with a known life-threatening condition.

Neonatal Palliative Care • Goals of palliative care (Catlin & Carter, 2002): • Quality of life • Comfort or relief from symptoms • Support with tasks and bereavement • Collaboration across disciplines is critical. • Nurses require palliative-care education that includes clinical and ethical aspects.

Helping Families Grieve: Cultural and Religious Considerations • Nurses play an instrumental role in giving families permission to turn to their culture and faith to help them with grief and mourning. • Culturally sensitive care forms a positive foundation for dealing with and healing a person’s grief; it is a vital aspect of care (Shah, 2004).

Parents • Parental grief has been recognized as the most intense and overwhelming type of grief (Davies, 2004). • There is increasing evidence of short- and long-term effects of perinatal loss, not only to the woman’s psyche and relationships with others, but also on parenting subsequent to loss and on other children (Bennett et al., 2005; Woods & Woods, 1997).

Parents (Continued) • Because men and women often grieve differently, parents’ reactions may be disparate even though both have experienced the same loss (O’Leary & Thorwick, 2006). • This can lead to conflicts about what and how to do things, as well as what can make them feel better.

Parents (Continued) • Nurses can provide parents with detailed information about support services and options. • Nurses can present options to parents as labor, birth and discharge unfold, rather than as a vast, all-inclusive menu.

Grandparents • A grandparent’s response to the loss of a grandchild may differ from the parent’s response to the loss of a child. • Nurses can explain to grandparents that their care activities are for the benefit of the parents, even though grandparents may have different experiences or expectations.

Siblings and Other Children • Children grieve in ways quite different than adults, often in an uneven pattern. • Their concept of death varies by developmental stage, and grief can reemerge at a later stage when they deal with it at a different level.

Siblings and Other Children (Continued) • Healthy grieving for children can be predicted by two factors (Himebauch et al., 2008): • Accessibility of one significant adult • Being in a safe environment where they are physically and emotionally taken care of

Siblings and Other Children (Continued) • Infants: Maintaining routines and avoiding separation are important. • Preschoolers: Nurses and parents can give children straightforward explanations, correct their thinking when necessary, and be clear that the baby is not coming back.

Siblings and Other Children (Continued) • School-age children: Caregivers can give clear explanations and involve them with funeral or memorial services if they are comfortable participating. • Adolescents need adult support and time with their peers.

Care at the Time of Loss • Nurses can offer parents options and guide, but not push, them in the hours after death (Badenhorst & Hughes, 2007). • Physical care should be as thorough as in the case of a healthy labor and birth; emotional issues may seem overwhelming, but physical safety remains a priority (Gold, 2007).

Care at the Time of Loss (Continued) • The nurse should provide grief-related information based on the mother’s readiness. • Continuity of care should be promoted and facilitated, if possible; reducing the number of staff interacting with the family can help reduce their stress and limit errors in communications.

Holding the Baby • Family contact with the deceased baby should not be restricted. • Holding the baby should be offered but never forced. • PLIDA has detailed position statements and practice guidelines for offering parents the opportunity to hold their baby.

Mementoes and Photos • The nurse can help parents create memories, gather mementoes and take photos. • Photographs can be treasured mementoes for families. • Photographs may be unacceptable to some, depending on their views of the dead or the unborn.

Loss and Grief in the Childbearing Period