Perinatal Loss, Bereavement, and Grief Chapter 37 Perinatal Loss, Bereavement, and Grief Copyright © 2016 by Elsevier Inc. All rights reserved.

Learning Objectives Define perinatal loss, bereavement, and grief. Describe the causes of perinatal loss. Describe the various responses parents and families may have to perinatal loss. Analyze the personal and societal issues that can complicate responses to perinatal loss. Formulate appropriate nursing diagnoses for people experiencing perinatal loss.

Learning Objectives (Cont.) Identify specific nursing interventions to meet the special needs of bereaved women, their partners, and their families related to perinatal loss and grief. Differentiate between helpful and hurtful responses in caring for women and their partners experiencing a perinatal loss. Define complicated grief related to perinatal loss and how nurses can assess for it.

Loss, Bereavement, and Grief: Basic Concepts and Theories Defining loss, bereavement, grief, and mourning Useful grief theories in perinatal settings Continuing bonds theory Dual process model Caring theory to guide nursing practice when pregnancy ends in loss 1. Knowing 2. Being with 3. Doing for 4. Enabling 5. Maintaining belief

Types of Losses Associated with Pregnancy Defining perinatal loss Miscarriage Fetal death Early Late Stillbirth Death of live-born infant Early neonatal death Late neonatal death Infant death

Types of Losses Associated with Pregnancy (Cont.) Types of perinatal losses Miscarriage Serious fetal diagnosis Pregnancy termination TOPFA: termination of pregnancy for fetal anomalies Selective reduction Other losses Perinatal care settings where nurses encounter loss Perinatal palliative care

Miles’s Model of Parental Grief Responses Three overlapping phases Acute distress Intense grief Guilt, anger, resentment, bitterness, or irritability Characterized by disorganization Physical symptoms include fatigue, headaches, dizziness, or musculoskeletal aches and pains Reorganization Better able to function at home and work, experiences a return of self-esteem and confidence, can cope with new challenges, and has placed the loss in perspective The term recovery is not appropriate because the grief related to perinatal loss, as with any loss, can continue for life.

Acute distress Loss of a pregnancy or death of an infant is an acute and distressing experience for mothers and fathers who planned for and expected a normal healthy infant as the outcome Parents generally are in a state of shock and numbness Disbelief and denial can occur Intense outbursts of emotion and crying are common

Intense Grief Encompasses many difficult emotions, including loneliness, emptiness, yearning; guilt, anger, and fear; disorganization and depression; and physical symptoms Deciding what to do about the nursery and baby clothes is particularly difficult during this period Common response during this phase of grief is anger, resentment, bitterness, or irritability Fear and anxiety can occur

Intense Grief Difficulty in getting things done, and inability to concentrate, restlessness, confused thought processes, difficulty in solving problems, and poor decision making Physical symptoms of grief include fatigue, headaches, dizziness, or backaches

Reorganization Occurs when the parent is better able to function at home and work, experiences a return of self-esteem and confidence, can cope with new challenges, and has placed the loss in perspective Begins to peak sometime after the first year as parents begin to achieve the task of moving on with their lives

Family Aspects of Grief Grandparents Complicated by emotional pain witnessing and feeling immense grief of their child Siblings Young children respond more to the reactions of parents. School-aged siblings Teenagers Resolve through sharing resources

Family Aspect of Grief Nurse caring for one of these patients needs to keep in mind that they have an entire family to minister to, including and especially grand parents and siblings Grandparents are angry that they are alive and the grandchild is not

Perinatal Loss Care Management When a loss is diagnosed: helping the woman and her family in the aftermath Simple, unambiguous, and consistent language is crucial

Perinatal Loss Care Management (Cont.) Helping parents with holding their fetus or infant Research evidence supports the importance of parents’ seeing or holding their fetus or infant, but they should never be made to feel they “should” see or hold their baby. Parents appreciate explanations about what to expect. When bringing the baby’s body to the parents, it is important to treat the baby as one would a live baby.

Perinatal Loss Care Management (Cont.) Helping parents with holding their fetus or infant (Cont.)

Case Study You have just begun your shift and are receiving the patient report from the admitting nurse: Mary is a 26-year-old G1 P0000 at 36 weeks of gestation. She presented to the prenatal clinic yesterday for her routine exam and the provider was unable to hear fetal heart tones. Intrauterine fetal demise was confirmed by ultrasound, and her labor began spontaneously soon afterward. Mary is here with her husband, Jeff, and both are crying.

Case Study (Cont.) Envision and describe how you will introduce yourself to this couple and begin the shift. Mary and Jeff are still in the first stage, latent phase of labor. What are the most important initial questions to ask the couple regarding their labor and birth, ideally before the onset of the active phase of labor?

Case Study (Cont.) Eighteen hours later, Mary delivers a baby girl with Jeff at her side. After delivery, describe specific therapeutic nursing interventions.

Perinatal Loss Care Management (Cont.) Helping parents with decisions regarding autopsies, organ donation, and disposition of the body Autopsy Personal, cultural, and religious views Organ donation Spiritual rituals Respectful disposition of the body Memorial or funeral service Do not rush the family into making decisions.

Perinatal Loss Care Management (Cont.) Help the Parents with Decision Making Conducting and autopsy Autopsy can be very important in answering the question “WHY” Autopsies are not covered by insurance and are expensive Organ donation Donation of cornea can occur if the baby was born alive at 36 weeks of gestation or later Decisions related tom spiritual rituals that may be helpful or important to parents

Perinatal Loss Care Management (Cont.) Helping the bereaved parents acknowledge and express their feelings Validate the experience and feelings of the parents. Encourage them to tell their stories. Listen with care. Offer helpful versus unhelpful responses. Allot enough time to engage with them without being rushed.

Perinatal Loss Care Management (Cont.) Helping the bereaved family understand differing responses to loss Reassure them that their responses are normal. Prepare them for grief’s potentially lengthy process. Educate about the grief process, including the physical, social, and emotional responses of individuals and families. Recognize that there my be incongruent grieving in couples.

Perinatal Loss Care Management (Cont.) Meeting the physical needs of the bereaved mother in the postpartum period The mother should decide if she wants to remain on the maternity unit or to move to another unit. Physical needs are the same as those of any woman who has given birth. Lactation issues Postpartum care instructions

Perinatal Loss Care Management (Cont.) Assisting the bereaved parents in communicating and establishing support from family members

Perinatal Loss Care Management (Cont.) Creating memorabilia for parents to take home

Perinatal Loss Care Management (Cont.) Create Memories for Parents to Take Home Nurse can provide information about the baby’s weight, height, and head circumference

Perinatal Loss Care Management (Cont.) Addressing cultural and spiritual needs of parents The nurse must be sensitive to the responses and needs of parents from various cultural backgrounds and religious groups. The nurse needs to be aware of his or her own values and beliefs. Culture and religious beliefs influence the customs following death.

Perinatal Loss Care Management (Cont.) Providing sensitive discharge and follow-up care Sensitivity about time and manner of discharge from hospital Follow-up care Finding a perinatal or parent grief support group The focus of the group needs to match the parents’ needs.

Perinatal Loss Care Management (Cont.) Providing postmortem care Preparing the baby’s body and transporting to the morgue depend on the procedures and protocols developed by individual hospitals.

Perinatal Loss Care Management (Cont.) Provide Postmortem Care Preparation of the baby’s body and transport to the morgue depends on the procedures and protocols developed by individual hospitals Sensitive and respectful approach for taking the fetus or infant to the morgue is the use of a “burial cradle”

Special Circumstances Prenatal diagnosis with poor prognosis Death of a fetus in a multiple gestation Adolescent grief Complicated grief Also called complicated bereavement, prolonged grief, pathologic grief, or pathologic mourning Differs from what is considered normal grief in its duration and the degree to which behavior and emotional state are affected Posttraumatic stress disorder (PTSD) Posttraumatic growth (PTG)

Special Circumstances Posttraumatic growth Women and their partners can experience personal growth in the aftermath of a perinatal loss This phenomenon is characterized by development along one or more of five dimensions : Personal strength Appreciation for life Spirituality Relating to others New possibilities

Special Circumstances Loss of One in a Multiple Birth Death of a twin or baby in a multifetal gestation during pregnancy, labor, birth or after requires parents to parent and grieve at the same time Parents feel that they can do nothing right Parents are at risk for altered parenting and complicated bereavement

Special Circumstances (cont) Adolescent Grief Adolescents grieve the loss of their babies through miscarriage, stillborn, or newborn death and need the emotional support from the nurses who care for them Nurses and other health care professionals, as well as family members often believe that the adolescent ‘s loss of her baby was for the best Adolescents girls, then, may not receive the support needed from staff and family Adolescents do not have the support from the father of the baby

Special Circumstances (cont) Complicated Bereavement Parents have extremely intense grief reactions that last for a very long time Evidence of complicated grief includes continued obsession with yearning and loneliness, intense and continued guilt or anger, relentless, depression or anxiety

Question Which options for saying good-bye should the nurse discuss with a woman who is diagnosed as having a stillborn girl? The nurse shouldn’t discuss any options at this time; there is plenty of time after the baby is born. “Would you like a picture taken of your baby after birth?” “When your baby is born, would you like to see and hold her?” “What funeral home do you want notified after the baby is born?”

Key Points Attachment to the idea of a baby can begin before pregnancy with many hopes and dreams for the future and can become more pronounced over the course of pregnancy. Women can feel profound grief regardless of the length of gestation; however, women tend to have higher levels of grief with longer gestations. When a fetus or a newborn dies, all members of a family are affected, but no two family members grieve in the same way.

Key Points (Cont.) When birth and death coexist, sensitive care by a nurse is critical in assisting the woman and her family in their grief, regardless of the woman’s age or stage of gestation. An understanding of the grief process is fundamental to care management of families experiencing fundamental perinatal loss. Assessment of each family member’s perception and experience of the loss is important.

Key Points (Cont.) Cultural and religious beliefs affect a family’s response to and method of coping with perinatal death. Therapeutic communication and active listening can help women and their partners and families identify their feelings, feel comfortable expressing their grief, and understand their bereavement process.

Key Points (Cont.) Follow-up after discharge is important in providing care to families who have experienced a loss because of the evolving nature of grief. Nurses need to be aware of their own feelings of grief and loss to provide a nonjudgmental environment of care and support for bereaved families.