Bereavement Care

Bereavement support for perinatal loss has changed significantly over the last 30- 40 years. Parents should be validated for their grief based on how they interpret the loss. Health care professionals can model this support and facilitate bereavement activities such as memory making. Recognizing that health care cannot take away the pain for families, the goals for care focus on encouraging healthy grieving, minimizing regrets, and promoting physical recovery and mental health.

Cultural care is a key element of quality care as most cultures have rituals and beliefs connected to birth and death that should be recognized when desired by the family. Respectful care principles encourage health professionals to acknowledge the physical, emotional, mental, and spiritual needs of the entire family. Bereavement work can be taxing on health care professionals; therefore, organizational support and self-care practices can reduce the negative impact and potential burnout for professionals caring for grieving families.

Background

Before the 1980s and 1990s, many parents were discouraged from having contact with their baby after death, naming the baby, making memories with the baby, or conducting services or rituals. It was common for the parents, especially mothers, to be prescribed tranquilizers or sedatives. The primary intervention was to encourage families to pursue another pregnancy as soon as possible. Studies and families have taught that this approach may appear to reduce acute distress for parents, it is not the most advantageous for long-term mental health and healing.

Grief Principles

Key concepts when working with bereaved individuals are that grief is not linear or predictable, it often includes a variety of emotions experienced simultaneously, and it will be different for each person. Some families will view these losses as the death of a baby, while others may see it as a medical event. Health professionals should meet the families where they are and let them define what this loss means to them.

In perinatal loss, it can be tempting to expect the intensity of grief symptoms to be related to the length of gestation/age of the baby. However, this is not a reliable indicator of impact on the family. Many early losses, including infertility journeys, are equally traumatic and painful for a family as losses that occur later in pregnancy or after birth. Conversely, not all families will view a pregnancy or neonatal loss as the death of a baby but rather a medical event. It is important to identify what this loss means to the individual and the family and tailor all interventions accordingly.

Common emotional symptoms include shock, sadness, anger, guilt, shame, irritability, and anxiety. As grief progresses, it can also lead to changes in appetite, sleep patterns, and libido. Physical symptoms are also common. Headache, nausea, vomiting, shortness of breath, chest pain, abdominal pain, and other physical signs require careful assessment to determine if they have a physical or emotional etiology.

Perinatal losses are family events just as any other birth or death. The father or partner can feel like a secondary griever if not included in decisions or otherwise made to feel that the mother or their partner’s well-being is the primary concern. Older children will also be impacted and will experience grief symptoms, even if they are very young. Grandparents and other extended family members or close friends will also be grieving the baby, but they also report grieving for the pain that their loved one is experiencing. A multi-disciplinary approach is often helpful in addressing the needs of all family members.

Perinatal loss is associated with an increased risk of mental health issues, including depression, anxiety, PTSD, substance use/abuse, and suicidal thoughts. An accurate diagnosis is needed to ensure grief is not over-pathologized and mental health is not ignored.

Providing Care

Several care principles should be applied when caring for perinatal loss families. Family-centered care, shared decision-making, respectful care, culturally-sensitive care, and trauma-informed care all have a role to play. Examples of these concepts include acknowledging the baby and their parenthood; respecting privacy; providing honest, accurate, and complete information; being flexible to accommodate cultural or religious needs and rituals; and supporting the parents’ decisions.

Health professionals should be familiar with the resources available to families in their area. Peer support, support groups, counseling/therapy, mental health services, and social programs are noted to make a significant difference for many grieving families.

Self-care is an essential component of caring for families enduring perinatal loss, but it is often minimized or overlooked. Health professionals report that these situations contribute to the burnout or work-related stress observed in many maternal/child health settings. Exercise, faith, counseling, training, and supportive colleagues and administration are frequently reported as reducing this stress.

Recommendations

• Bereavement support is the responsibility of all health professionals who may encounter families during or after a perinatal loss.
• All staff in maternal/child health settings should receive training in perinatal loss care.
• Families should be offered:
  • Mental health services
  • Memory making activities
  • Follow-up support
  • Spiritual care services
  • Opportunities for cultural rituals and traditions
  • Support for the entire family
• Policies and procedures should reflect the principles of respectful care, compassionate communication, shared decision-making, trauma-informed care, family centered care, and culturally-sensitive care.
• Policies and procedures should encourage support for the health professionals caring for grieving families.