Bereavement and loss in maternity care This chapter

Bereavement and loss in maternity care

• This chapter introduces the reader to issues which those working in the maternity area may face in the event of bereavement or loss. • It is hoped that it will help the reader to better cope with the situation and, thus, care for those affected. • Throughout the chapter, the assumption is made that care is more effective if based on research or, preferably, evidence.

The chapter aims to • Consider the meaning of bereavement and loss, and their significance in maternity • Discuss forms of loss • Draw on research and evidence to review the care of those affected by the loss.

Grief and Loss • Grief: the emotional response to a loss • Mourning: the way in which feelings and emotions are dealt with • “Visible” loss: death of a family member or friend, have established rituals that facilitate and encourage mourning. For example: funerals, religious services, memorials

Grief due to Loss of a Pregnancy • Pregnancy loss is devastating, no matter when it happens. • Misconception that the degree of loss experienced is in proportion to the length of the pregnancy • Grieving is a process with a number of phases. These phases are experienced in different ways and may overlap or be re-experienced. • There is no right or wrong way to grieve

Phases of grief: • Avoidance and disbelief: it may be impossible to grasp what has happened. The loss is so overwhelming, it may be necessary, at first, to take the time to break it down into manageable pieces. • Pain: may be experienced in the form of depression, physical illness (colds, flu), forgetfulness, difficulty concentrating, anger (at self, partner, others), guilt. • Acceptance and adaptation: acceptance of pregnancy loss or infant death. Acknowledgement that internal change has occurred will ease pain.

Forms of Loss

Perinatal or Pregnancy Loss • the death of an unborn fetus or baby at any time during pregnancy Early pregnancy loss (<20 weeks gestation: • 15 -20% of diagnosed pregnancies are lost in the first or second trimester of pregnancy with most occurring in the first trimester • 1% of pregnancy losses occur after 16 weeks gestation

Types of pregnancy loss: Blighted ovum: loss prior to 8 weeks in which the egg is fertilized but never develops into an embryo Ectopic pregnancy: implantation and development of the fertilized ovum outside of the uterus. This may occur in the fallopian tube, cervical canal, pelvic or abdominal cavity

Spontaneous Abortion: a gestational age of <20 weeks or a birth weight of < 500 grams -missed: pregnancy loss where products of conception are retained after the fetus dies -incomplete: pregnancy loss where some but not all products of conception have been expelled - complete : pregnancy loss where the fetus and all related tissue have been expelled from the uterus

Therapeutic abortion: intentional termination of a pregnancy, usually prior to 24 weeks gestation Molar pregnancy: mass of cysts that forms in the uterus. It is the product of parthenogenesis which is the development of a germ cell without equal contributions of DNA from an egg and sperm. All chromosomes come from the male partner. Stillbirth: intrauterine death of a fetus at 20 weeks gestation of greater Neonatal Death: death of a live-born infant over 20 weeks gestation within the first 28 days of life

The mother's birth experience A further form of loss, over which the mother may need to grieve, is her loss of her anticipated birth experience. If she was hoping for an uncomplicated birth, even some of the more common interventions may leave her with a sense of failure

Support from the Caregiver • Care given to each person differs with their needs but the support provided should be based on a theoretical base. It is not necessarily “what comes naturally”. • Swanson’s Caring Components can be applied to the particular needs of any person experiencing grief at any level or stage. • Can be considered an interdisciplinary model as it focuses on the caregiver’s receptiveness to the feelings of a patient or family member. All caregivers can be involved in this communication. • This model is not stage-dependent.

Swanson’s Caring Components Knowing: the deliberate effort to understand an event as it has meaning in the life of the patient. The caregiver makes no assumptions, but attends to the clues given by the one cared for. Being with: being emotionally present to or for the other. This presence conveys continual availability for sharing feelings. Doing for: doing for the patient what the patient would for themselves if it were possible. Service given in an unobtrusive, easily forgotten manner that preserves dignity of the patient while acknowledging their capacity for self-care.

Swanson’s Caring Components (cont’d) Enabling: helping of another’s passage through the transitional and unfamiliar event or loss. Involves using expertise to help someone grow, heal and practice selfcare. Involves giving accurate and applicable information, explanations, and validation of the other’s feelings. Helps the ones being cared for to focus on their concerns, to generate viable alternatives, and to think through ways to look at or act in a situation. Maintaining belief: holding the other in esteem and believing in them as a person with the capacity to get through a transition and face a future with meaning.

Anticipatory Guidance What to expect : physical symptoms of grief Exhaustion/fatigue Sleep difficulties Weight changes Palpitations Restlessness Blurred Vision Appetite changes Lack of strength Breathing difficulties Body aching Dry Mouth Headaches

Anticipatory Guidance What to expect: emotional and/or psychological effects of grief Denial Guilt Anger Resentment Bitterness Depression Irritability Time confusion Mood Swings Sadness Sense of failure Dreams Failure to accept reality Decreased self-esteem Preoccupation with the deceased Withdrawal from normal activities of daily living Social isolation from family and friends Increased difficulty relating to others

Providing Support If death has not yet occurred: • Invoke the Perinatal Loss Program process • Provide timely information to the family • Involve the family in discussions regarding care decisions i. e. re: induction of labour, palliative care, etc. • Encourage and provide time for questions

Providing Support • Include the family in decision-making with all disciplines i. e. physicians, neonatology, spiritual care, social work, nursing • Allow for cultural differences in communication. Use interpreters as needed. • Promote an appropriate environment that includes privacy, low lighting, music • Encourage the family to hold and comfort the baby. Use role modeling • Provide support for all family members involved.

Providing Support At the time of death: • Express your own sympathy. Give the family time to express themselves. Offer to stay if they are alone. Unit team work is important at this time. • Allow the family time to process the news of the death before asking for responses to important questions regarding organ donation, autopsy or funeral arrangements • Declaring time of death by physician • Assure family of their privacy

Providing Support At the time of death… • Encourage the expression of feelings and facilitate good communication between members of the family. Answer all questions to the best of your ability. • Offer options for loved ones to participate in the care of the body, or watching care, or of not being present at the time of body care and preparation. • Perinatal Loss Keepsake initiative: pictures, foot and hand prints, clothing • Many details and decisions • Create a warm environment • It is okay to cry

Providing Support Suggestions to enable the move towards healing: • Be independent in decision-making • Create baby memories • Take it slow • Take care of yourself • Postpone major decisions • Talk and share time with your partner • Journal • Seek help from loved ones, professionals • Support groups