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Understanding the Spectrum of Fetal Loss: Helping Families to Cope.

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Presentation on theme: "Understanding the Spectrum of Fetal Loss: Helping Families to Cope."— Presentation transcript:

1 Understanding the Spectrum of Fetal Loss: Helping Families to Cope

2 Program purpose and goals Support bereaved families Support bereaved families Interdisciplinary approach Interdisciplinary approach “standard of care” “standard of care” Educational opportunities Educational opportunities Community awareness/ support Community awareness/ support

3 Understanding Perinatal loss

4 Perinatal loss Is most often defined as the nonvoluntary end of pregnancy from conception, during pregnancy, and up to 28 days of the newborn’s life.

5 Statistics miscarriage, ectopic pregnancy, stillbirth & neonatal death according to the March of Dimes

6 Miscarriage Defined as pregnancy < 20 weeks gestation. Defined as pregnancy < 20 weeks gestation % of all clinically recognized pregnancies end in miscarriage % of all clinically recognized pregnancies end in miscarriage

7 Ectopic pregnancy- An implantation of the embryo outside the uterus, most commonly in the fallopian tube. 2% of pregnancies with no hx of previous ectopic. 2% of pregnancies with no hx of previous ectopic. 9% with a history of previous ectopic 9% with a history of previous ectopic

8 Stillbirth defined as pregnancy 20 + gestation 26,000 stillbirths occur annually in the U.S. 2 % of all pregnancies end in stillbirth.

9 Neonatal death Neonatal death defined as birth to the 28 th day of life. defined as birth to the 28 th day of life. 19,000 neonatal deaths annually in U.S.

10 Factors influencing grief following perinatal loss Suddenness and unexpectedness of the loss Suddenness and unexpectedness of the loss Social and cultural definitions of infant death Social and cultural definitions of infant death

11 The 4 phases of bereavement 1. shock and numbness 2. Searching and yearning 3. Disorientation 4. Reorganization Glen W. Davidson (1984) Understanding Mourning. Minneapolis: Augsburg Publishing House

12 1 st Phase of Bereavement Shock & numbness Shock & numbness

13 1 ST Phase of Bereavement Resistance to stimuli Resistance to stimuli Judgment making difficult Judgment making difficult Functioning impeded Functioning impeded Emotional outbursts Emotional outbursts Stunned feelings Stunned feelings Short attention span Short attention span Concentration difficult Concentration difficult Stunned, disbelief Stunned, disbelief Denial Denial Time confusion Time confusion

14 2 nd phase of bereavement Searching & yearning Searching & yearning

15 2 nd Phase of Bereavement Very sensitive to stimuli Very sensitive to stimuli Angry Angry Guilty Guilty Restless / impatient Restless / impatient Ambiguous Ambiguous Testing what is real Testing what is real Irritability Irritability Weight gain/loss Weight gain/loss Sleeping difficulty Sleeping difficulty Aching arms Aching arms Bitterness Bitterness Headaches Headaches Resentment Resentment Palpitations Palpitations Lack of strength Lack of strength

16 3 rd phase of bereavement disorientation disorientation

17 3 rd Phase of Bereavement Disorganized Disorganized Depressed Depressed Guilt Guilt Anorexia Anorexia Awareness of reality Awareness of reality Think “I’m going crazy” Think “I’m going crazy” Forgetful Forgetful Sense of failure Sense of failure Difficult concentrating Difficult concentrating Exhaustion Exhaustion Lack of energy Lack of energy

18 4 th phase of bereavement reorganization reorganization

19 4 th Phase of Bereavement Sense of release Sense of release Renewed energy Renewed energy Judgment making improved Judgment making improved Stable eating and sleeping habits Stable eating and sleeping habits Able to laugh and smile again Able to laugh and smile again Increased self-esteem Increased self-esteem Begin planning future Begin planning future

20 All Phases of Bereavement

21 4 tasks of mourning To accept the reality of the loss To accept the reality of the loss To work through the pain of grief To work through the pain of grief To adjust to life in which the deceased is missing To adjust to life in which the deceased is missing To emotionally relocate the decease and move forward with life To emotionally relocate the decease and move forward with life Worden, J.W. (2002) Grief Counseling & grief therapy (3 rd edition) New York: Springer Publishing.

22 Experts agree that grief is somewhat predictable as far as its elements, but the length, and intensity of the phases of the process remain undetermined. Each individual’s response is unique. It is vital that health care providers recognize grief, in its varying phases, because behaviors can often be misinterpreted as disinterest, lack of importance, belligerence, and so forth. Parents and family members need to be taught about grief and mourning so that they are better able to recognized the signs in themselves and others. Grief work should be encouraged.

23 Responses to perinatal loss vary widely, but for many families, the loss is unexpected and they do not know what to do, what to expect, or how to handle their grief. their grief.

24 Grief work or mourning requires tremendous effort.

25 Incongruent grief feminine feminine Open expression Open expression Sad, depressed Sad, depressed Empty feeling Empty feeling Need to talk Need to talk Comforted by holding Comforted by holding masculine masculine Stoic Stoic Aggressive, anger Aggressive, anger Powerless Powerless Task oriented Task oriented Sexual intimacy Sexual intimacy Needs partner to feel better Needs partner to feel better

26 The experience of grief is highly individualized and gender specific. As can be seen in many ways, men and women respond differently to the same situation. Men often deal with their grief by keeping busy with their work; women cry and talk. Both parents are in emotional pain, but their emotional attachment to their baby is likely at different points and they respond according to social expectations. The woman had an intimate relationship with the pregnancy as part of her own body, but the father experienced pregnancy as an observer.

27 Feminine grief

28 Women may feel responsible for her body and her pregnancy. Women may feel responsible for her body and her pregnancy. When pregnancy results in loss, the mother may feel that she has failed and is somehow responsible for what has happened. When pregnancy results in loss, the mother may feel that she has failed and is somehow responsible for what has happened. Women often ask “why us?” and “what did I do wrong?” Women often ask “why us?” and “what did I do wrong?”

29 Masculine grief

30 Men and women grieve differently Men and women grieve differently, which can sometimes cause conflict between partners. Women tend to grieve longer than men; they also have physical changes to deal with after the loss. Grieving may last a few weeks, several months, or often, longer than a year. Some feel that grieving never ends but changes in intensity and focus over time. Men and women grieve differently, which can sometimes cause conflict between partners. Women tend to grieve longer than men; they also have physical changes to deal with after the loss. Grieving may last a few weeks, several months, or often, longer than a year. Some feel that grieving never ends but changes in intensity and focus over time.

31 Grieving the death of a baby may create tension and problems in many relationships. Time spent with the baby by each parent after delivery may also differ, adding another layer of difference., Incongruent grieving is normal in most cases, however, and parents need to be told this. Past loss experiences may also change each parent’s response to this event.

32 After several weeks, the focus of a couple’s life should begin to move from their grief as all encompassing to the incorporation of their loss into their daily lives with periodic eruptions of sadness. Even when couples feel that they are doing pretty well, they will likely be surprised by the intensity of their response to anniversary dates of their due date, birth date, delivery date and other milestones

33 Parents who lose their wished for baby feel like parents, but have no living child to parent. Therefore, unfortunately, they are often not treated like parents by society. The unborn baby or newborn is not usually known to others beyond the mother, her partner and perhaps immediate family. Because of the baby’s short, relatively hidden existence and a limited circle of acquaintances, there may be few mourners who can share the grief with the parents. Death tends to be a taboo topic in our society, even more so when it is a baby that dies. From the parents’ prospective, they had been looking forward to a life with this baby, and now that future, too, is lost.

34 Children and grief

35 Normal thoughts of siblings: “did I cause the death?” “did I cause the death?” “will the rest of my family die, too?” “will the rest of my family die, too?” “will I die, too?” “will I die, too?” “I feel guilty to be happy or laugh.” “I feel guilty to be happy or laugh.” “who will take care of me now?” “who will take care of me now?” “why wasn’t it me?” “why wasn’t it me?” “If God took her because she was so good, will he take me, too?, I’ve been good?” “If God took her because she was so good, will he take me, too?, I’ve been good?”

36 Children and death Commonly asked questions: Should we include the children? Should we include the children? Who should tell the children? Who should tell the children? How do I tell the child what has happened? How do I tell the child what has happened? Who will care for the children? Who will care for the children? What if I cry in front of the children? What if I cry in front of the children?

37 How to talk to children about death Encourage the child to talk openly about feelings Encourage the child to talk openly about feelings Allow expression of feelings Allow expression of feelings Support expression of emotions appropriately to grief and death Support expression of emotions appropriately to grief and death Help children deal with their feelings and emotions Help children deal with their feelings and emotions

38 Telling a child about a loss Communication through touch ( arm around child, sit close to child, hold on lap or hold hands) Communication through touch ( arm around child, sit close to child, hold on lap or hold hands) Talk about things the child experienced or noticed already (pregnancy, parents crying) Talk about things the child experienced or noticed already (pregnancy, parents crying) Tell child what to expect Tell child what to expect Acknowledge and share feelings Acknowledge and share feelings Explain death in an understandable manner (simply and honestly) Explain death in an understandable manner (simply and honestly) When appropriate, let child make decisions to attend funeral, etc..) When appropriate, let child make decisions to attend funeral, etc..) Encourage child to ask questions Encourage child to ask questions

39 Grandparents’ grief

40 Instinct to protect their children from pain Instinct to protect their children from pain Unmet expectations Unmet expectations Grandparent’s feelings go unnoticed Grandparent’s feelings go unnoticed “trigger” past losses “trigger” past losses Miles separate families Miles separate families Hard to understand parent’s needs Hard to understand parent’s needs

41 Grieving is not a process of forgetting, but a process of remembering.

42 Creating memories The moments or hours surrounding stillbirth or neonatal death are precious. The moments or hours surrounding stillbirth or neonatal death are precious. Work at creating memories for this family so they can know and remember their lost baby. Work at creating memories for this family so they can know and remember their lost baby. The care you provide now will help them with later grief work. The care you provide now will help them with later grief work. There is rarely an opportunity to go back and retrieve memories. There is rarely an opportunity to go back and retrieve memories. Do not rush: consider how important the brief time the parents have with their baby is. Relative to the fact that they had expected and looked forward to spending a lifetime together as a family. Do not rush: consider how important the brief time the parents have with their baby is. Relative to the fact that they had expected and looked forward to spending a lifetime together as a family.

43

44 Footprints

45 Infant gowns

46 Molds of hand / foot

47 Memory box

48 urn

49 Locket of hair

50 Measuring tape

51

52

53

54 Angel bear

55 Questions & comments

56 communication

57 Cardinal rules of grief support Silence Silence Admit our own helplessness Admit our own helplessness Be genuine Be genuine Be with the person in grief Be with the person in grief Don’t judge another’s grief Don’t judge another’s grief Be clear about your issues on death Be clear about your issues on death Know your limitations Know your limitations

58 3 types of responses to perinatal death Avoidance Avoidance Insensitive or moralizing Insensitive or moralizing supportive supportive

59 How can I help someone who is grieving? Listening Listening Sending cards Sending cards Calling Calling Remembering the baby Remembering the baby Maintaining belief Maintaining belief Offering hope & support Offering hope & support

60 Examine defenses and coping styles Develop trust Develop trust Past coping strategies Past coping strategies Past losses Past losses Use of substances Use of substances Assessing family, friends, community support Assessing family, friends, community support

61 What do you say……… What do you say when a baby dies and someone says…… “at least you didn’t bring it home” “at least you didn’t bring it home” What do you say when a baby is stillborn and someone says…. “at least it never lived” “at least it never lived” What do you say when a mother of three says……. “think of all the time you’ll have now” “think of all the time you’ll have now”

62 What do you say when so many say….. “you can always have another…” “you can always have another…” “At least you never knew it…” “At least you never knew it…” “You have your whole life ahead of you….” “You have your whole life ahead of you….” “You have an angel in heaven….” “You have an angel in heaven….” What do you say when a baby dies and someone says……nothing What do you say when someone says…. “I’m sorry.” “I’m sorry.” You say, with grateful tears and a warm embrace, “Thank you!” “Thank you!” Kathie Mayo

63 Qualities of a good listener Silence- allow for pauses in conversation Silence- allow for pauses in conversation Non-committal acknowledgement- (“um”, “uh huh”, “I see”, “really”) Non-committal acknowledgement- (“um”, “uh huh”, “I see”, “really”) Door openers- open ended questions- Door openers- open ended questions- “could you tell me more?” “could you tell me more?” “when did you notice this change in your emotions?” “when did you notice this change in your emotions?” “How are things going with your family?” “How are things going with your family?” “Tell me about it?” “Tell me about it?” “What helps you get through the day?” “What helps you get through the day?” Content paraphrasing- (i.e., what I hear you saying, is…) Content paraphrasing- (i.e., what I hear you saying, is…) Reflective listening- partially restating what was said Reflective listening- partially restating what was said Active listening- requires validation. Reflection of feelings relative to the content (i.e., “you’re sounding pretty angry about______. Is that right?” Active listening- requires validation. Reflection of feelings relative to the content (i.e., “you’re sounding pretty angry about______. Is that right?”

64 Parenting means taking care of one’s children, so it is not so surprising that parents may feel that they have failed their child. Caregivers should be especially careful not to add to their burden by asking questions that imply responsibility or by saying thing that could be misunderstood as indicating that the death could have been avoided if the parents had done or not done something

65 Providing sensitive care Be patient Be patient Provide privacy, but don’t avoid the couple Provide privacy, but don’t avoid the couple Compassionate care and guidance Compassionate care and guidance Be prepared to answer questions that arise Be prepared to answer questions that arise Offer options Offer options Prepare them for what is to come Prepare them for what is to come Your approach to care and the couple’s decisions will be their only memories of their child’s birth Your approach to care and the couple’s decisions will be their only memories of their child’s birth

66 Thing you can say: “I’m sorry” “I’m sorry” “this must be hard for you” “this must be hard for you” “ I just don’t know what to say” “ I just don’t know what to say” “how are you doing with all of this?” “how are you doing with all of this?” “I’m sad for you” “I’m sad for you” “I’m here, and I want to listen” “I’m here, and I want to listen”

67 What not to say “you can have other children” “you can have other children” “you have an angel in heaven” “you have an angel in heaven” “you’re young, you can have more” “you’re young, you can have more” “this happened for a reason” “this happened for a reason” “at least it happened early” “at least it happened early” “I know just how you feel” “I know just how you feel” “you can always have another baby” “you can always have another baby” “this will bring your family closer” “this will bring your family closer” “at least you have other children” “at least you have other children” Calling the baby a “fetus” or “it” Calling the baby a “fetus” or “it”

68 Spiritual needs Individualize care Individualize care Ask each family what they would like Ask each family what they would like Offer to call in a clergy member, Rabi, or other individuals Offer to call in a clergy member, Rabi, or other individuals Listen to the couple’s interpretation of the meaning of death Listen to the couple’s interpretation of the meaning of death Express your willingness to support their needs Express your willingness to support their needs Recognize that fetal personhood, naming, and rituals are often religiously dictated. Recognize that fetal personhood, naming, and rituals are often religiously dictated.

69 Provide continual support follow up: follow up: Perinatal bereavement program Perinatal bereavement program Support groups (at VBMC, online) Support groups (at VBMC, online) Ceremony of remembrance Ceremony of remembrance Walk to remember Walk to remember HANDS memorial garden HANDS memorial garden

70 Complicated bereavement history: history: Unresolved losses Unresolved losses Depression Depression Mental illness Mental illness

71 Complicated bereavement Identify problems Identify problems Identify poor coping skills Identify poor coping skills Identify inability to meet physical needs Identify inability to meet physical needs Identify an increase substance abuse Identify an increase substance abuse Identify self- destructive impulses Identify self- destructive impulses

72 Complicated bereavement Identify: Identify: Lack of support network Lack of support network Isolating self Isolating self Loss is not discussed Loss is not discussed Loss is negated Loss is negated Radical changes in lifestyle Radical changes in lifestyle

73 Red flags for major depression 15-20% loss or gain in weight 15-20% loss or gain in weight Worsening of symptoms over time Worsening of symptoms over time Reclusive ness Reclusive ness Persistent suicidal thoughts Persistent suicidal thoughts Inability to perform the necessary tasks of living Inability to perform the necessary tasks of living History of mental illness History of mental illness

74 Identify pathology and refer Identify trouble Identify trouble Know when to refer Know when to refer Know your limitations Know your limitations

75 Pregnant again…. concerns: Fertility and sexuality Fertility and sexuality Can I allow myself to feel joy again? Can I allow myself to feel joy again? Reminder of past pregnancy and lost baby Reminder of past pregnancy and lost baby Disloyal to other baby Disloyal to other baby Ticking biological clock Ticking biological clock What if….. What if….. When is the best time? Each person must decide for themselves. When is the best time? Each person must decide for themselves. Desire to have another baby overrides fear of another loss Desire to have another baby overrides fear of another loss

76 Support during pregnancy after loss It is important to discuss her past experiences and her current level of anxiety. It is important to discuss her past experiences and her current level of anxiety. Ask parents to tell their stories, if appropriate. Ask parents to tell their stories, if appropriate. Review obstetrical history Review obstetrical history Referring to the baby who has died, by name, demonstrates your acknowledgment of that baby’s personhood Referring to the baby who has died, by name, demonstrates your acknowledgment of that baby’s personhood If possible, put the parents in a different room than the one they used for the previous pregnancy. If possible, put the parents in a different room than the one they used for the previous pregnancy.

77 Thoughts for Caregivers When healing of the body is no longer our hope, We request a special healing of the spirit and soul. When continued life is not a reasonable goal, We hope for a good and meaningful death to take its place. Help us to measure success not so much in healing, As in caring And help us to see that a job well done may not be longer life, but a fitting death. Dispel the myth for us that joy is in life alone. Help us to overcome the fear of our own death, So we can be close to the dying in our service to them. Give us the resources on which to draw for help, through the really bad times. And help us to be open to receive what those whom we serve have to give us in this journey. In and through it all, May we never lose a sense of our compassion.

78 Avoiding “burnout” Know thy Self Know thy Self Be able to listen with your heart as well as your head Be able to listen with your heart as well as your head Know your boundaries and limitations Know your boundaries and limitations Be able to ask for what you need and want Be able to ask for what you need and want Be able to say “NO” Be able to say “NO” Be able to separate your own grief issues from your patients. Be able to separate your own grief issues from your patients. Realize you are not perfect Realize you are not perfect Be able to facilitate problem solving and let the patient make the decisions Be able to facilitate problem solving and let the patient make the decisions Be able to laugh and play Be able to laugh and play Closure Closure Remember, self care is self esteem Remember, self care is self esteem


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