Loss and Grief in the Childbearing Period

1
Loss and Grief in the Childbearing Period

• Denise Côté-Arsenault, PhD, RNC, IBCLC, FNAP

2
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).

3
Types of Perinatal and Neonatal Loss
Ectopic pregnancy Elective abortion Fetal death Infertility Miscarriage (spontaneous abortion) Neonatal death Stillbirth Sudden infant death syndrome (SIDS) Sudden unexplained death in infancy (SUID) Therapeutic abortion
4
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).

5
Perinatal Mortality

• Perinatal mortality has two accepted definitions
• Death at gt20 weeks gestation and lt28 days of life
• Death at gt28 weeks gestation and lt7 days of life
• Perinatal mortality includes ectopic pregnancy,
  miscarriage and stillbirth.

6
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).

7
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).

8
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).

9
Infant Mortality (Continued)

• In 1990, the sudden infant death syndrome (SIDS)
  rate was 1.3 per 1,000 births in 2006, the rate
  was lt.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.

10
History of Pregnancy and Infant Loss in America

• Americas 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).

11
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.

12
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.

13
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.

14
Rubins 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
• Rubins framework helps nurses identify how women
  are affected when pregnancy tasks are incomplete.

15
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.

16
Swansons Theory of Caring

• Through inductive analyses, Swanson (1991)
  identified five caring processes
• Knowing
• Being with
• Doing for
• Enabling
• Maintaining belief

17
Prenatal Testing

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

18
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.

19
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

20
Ultrasound

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

21
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.

22
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.

23
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.

24
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.

25
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).

26
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.

27
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.

28
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 ones
  ability to function and enjoy life should be
  evaluated by a mental health professional
  (Morrow, 2009).

29
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

30
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)

31
Grieving Styles

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

32
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

33
Developmental Stages and Grief

• An individuals 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.

34
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.

35
Helping Families Plan for Loss (Continued)

• Nursing considerations when helping families plan
  for a babys death
• The familys cultural and spiritual beliefs
• The familys level of acceptance of the babys
  condition
• The support the family gets from one another and
  from others
• The familys ability to agree that the goal is
  their babys comfort and care, rather than a cure

36
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.

37
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.

38
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
  persons grief it is a vital aspect of care
  (Shah, 2004).

39
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 womans psyche and relationships with others,
  but also on parenting subsequent to loss and on
  other children (Bennett et al., 2005 Woods
  Woods, 1997).

40
Parents (Continued)

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

41
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.

42
Grandparents

• A grandparents response to the loss of a
  grandchild may differ from the parents 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.

43
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.

44
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

45
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.

46
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.

47
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).

48
Care at the Time of Loss (Continued)

• The nurse should provide grief-related
  information based on the mothers 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.

49
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.

50
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.

51
Grief Environment

• The nurse should find a quiet moment to discuss
  how a woman and her family want to express their
  grief.
• The nurse should use a trained interpreter if
  there are language differences.

52
Family Involvement

• Gender, role and timing are cultural
  considerations that may determine involvement of
  extended family after a perinatal loss.
• The nurse can ask a woman whom she wants to be
  with her, where she would like her family to be,
  what she needs to wear and where she physically
  wants to be (Shah, 2004).

53
Naming the Baby

• Giving the baby a name increases the babys
  social status and personhood.
• There is no timeframe for naming a baby,
  especially in the case of early loss when gender
  is difficult to determine.

54
Autopsy

• Autopsy often provides valuable medical
  information about the cause of death it also can
  provide guidance for future pregnancies.
• Parents should receive information about the
  purpose of an autopsy and be asked for consent to
  have the procedure done.

55
Care of the Deceased

• Burial and cremation are the primary means of
  dealing with a deceased babys body.
• Gestational age, state law, religion and culture
  are considered in care of a deceased baby
  (Chichester, 2005 Shah, 2004).
• Nurses must know their institutions protocols
  and explain all options and procedures to parents.

56
Rituals and Services

• Nurses can ask families about rituals or
  traditions they would like to observe.
• Rituals include baptism, songs, readings and
  ceremonies.
• Families need time to make arrangements for
  funerals and memorial services.
• Memorial services can be done at any time, even
  long after the actual death.

57
Discharge Planning

• Bereaved parents need information, support and
  planning help for the early days after their
  loss.
• Instructions should include physical care of the
  woman.
• Bereavement materials should include common
  responses to grief and loss, community and online
  resources, and a list of symptoms and concerns
  that warrant contacting a health care provider.

58
Discharge Planning (Continued)

• Going home to pregnancy and baby things can be
  difficult for grieving families.
• Having a list of specific things for people to do
  for the family can be beneficial.
• Hospital staff can call families 1 to 2 weeks
  post-loss to see how they are doing and if they
  have questions.

59
Miscarriage

• Miscarriage may not be acknowledged by a womans
  friends and family as a true form of loss
  therefore, its critical that the nurse support
  the woman and her partner medically and
  emotionally.
• Nurses can assist mothers who miscarry by
  listening to their stories and helping them
  create their own memories (Kobler et al., 2007).

60
Intimacy

• While difficult to bring up, nurses should
  discuss contraception with couples.
• Some couples report difficulty in resuming
  intimacy due to reminders, perineal trauma and
  fear of pregnancy (Davis, 1996 Kohn Moffitt,
  2000).

61
Pregnancy After Loss

• Pregnancy after perinatal loss, both the next
  pregnancy and any subsequent pregnancies, often
  is accompanied with anxiety and fear (Armstrong
  Hutti, 1998 Côté-Arsenault et al., 2001).
• The timing of the next pregnancy has been the
  subject of research with mixed findings (Barr,
  2006).

62
Pregnancy After Loss (Continued)

• Nursing strategies
• Acknowledge the womans loss.
• Listen to and know her story.
• Acknowledge that she may be anxious and scared.
• Acknowledge that prenatal testing may be
  stressful for her.
• Provide reassurance, but remind her that there
  are no guarantees.
• Encourage her to come in and call as often as she
  needs to.

63
Nursing Roles and Settings

• In all nursing settings, when a perinatal loss is
  suspected, expected or confirmed, nurses should
  be knowledgeable and caring as they address
  informational, emotional and medical needs of
  families.

64
Hospital Protocols

• Protocol checklists for required nursing actions
  include providing maternal and neonatal care,
  creating memories for families, and providing
  emotional and spiritual support.
• In all settings, nurses should use established
  checklists and protocols to ensure that all
  aspects of care and bereavement services are
  provided.

65
Care for the Caregiver

• The nurses experience of perinatal loss
• Acknowledge your connection to this baby and
  family.
• Allow yourself to grieve.
• Be kind to yourself everyone has frailties.
• Talk with others gain support.
• Take care of yourself physically, emotionally,
  socially and spiritually.
• Self-reflection is critical for self care.

66
Care for the Caregiver (Continued)

• Papadatou (2000) suggests that grieving is an
  individual and a social-interactive process.
• Nurses can create a network of care providers,
  including nurses and other professionals, who
  support each other, listen and understand.

67
Summary

• Nurses often are caregivers of bereaved parents
  and, therefore, need to have background in and
  comfort with issues surrounding care of families
  experiencing loss.