Helping Providers Respond to Grieving Families · The usual activities of daily living can be performed; although, often without much interest or enthusiasm. Complicated. Absence

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After a Child Dies

Helping Providers Respond to

Grieving Families

Jen Barol, [email protected]

Grief is inarguably life’s greatest source of stress and turmoil because it calls into question how the mourner finds meaning in life.

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Grief, in short, is the mourning of a loss, usually the loss of a loved one but easily expanded to cover any loss that represents a core part of our lives.

Moving through grief requires a great deal of hard work on the part of the mourner.

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Grief has been defined by many as an “open wound,” and others want to look away from that wound because to acknowledge it is invariably difficult and confusing.

Myths and Misunderstandings About Grief All losses are the same. All bereaved parents/caregivers grieve in the same way. Grief declines steadily over time. When grief is resolved, it never comes up again. Infant death shouldn’t be too difficult to resolve because you didn’t know the

child. Children need to be protected from grief and death. Social support in your grief is unimportant. It takes two months to get over grief. Children grieve like adults. The intensity and length of your grief are testimony to your love for the

deceased. Bereaved parents/caregivers do not have a relationship with the deceased

child after the death.

Rando, T. (1991). How to go on living when someone you love dies. New York: Bantam Books.

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Common Fears Regarding Grief Process

Loss of control

Appearing weak to others

Tears will never stop

Unable to bear the loss

The deceased will be forgotten

Rando, T. (1991). How to go on living when someone you love dies. New York: Bantam Books.

Bereavement phase (not to be confused with Kubler Ross’ stages of death and dying)

“Typical” length Characteristics

Shock and numbness Most intense during first two weeks

Short attention span Difficulty concentratingImpaired decision-making Stunned, disbeliefResistant to stimuli Impeded functionDenial Time confusionFailure to accept reality

Searching and yearning

Dominant 2nd week through 4th month

Sensitive to stimuli ResentmentBitterness Time confusionPalpitations SighingLack of strength HeadachesPreoccupied with deceased

Disorientation Dominant 5th through 9th

month“Going crazy” Social withdrawalDisorganized ForgetfulAwareness of reality DepressedGuilt InsomniaWeight gain/loss Sense of failureSadness ExhaustionDifficulty concentrating Feels illLacks energy

Reorganization and resolution

Dominant 10th through 24th

monthSense of release Renewed energyAble to make decisions more easilyEating and sleeping habits re-establishedAble to laugh and smile againIncreased awareness in self-esteemBegin planning for the future

Davidson, G.W. 91984). Understanding mourning. Minneapolis, MN. Augsburg Publishing House

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Cultural and religious considerationsFactors to consider Beliefs about illness, death Service/sacramental system Nonverbal communication Interpreters Greetings Visitors Family structure/relationships Views regarding organ donation Rites associated with death Family spokesperson Spiritual leader Clothing Concept of health Decision-making Self-care

Cultural, Ethnic, Religious PracticesAmerican Indian

• Practices vary between tribes; may include dances, use of peyote or burning herbs.

• Causes of illness or genetic defects vary.• Some tribes avoid contact with dying.• Naming ritual for dying baby.• May want to prepare and dress body.• Belief in afterlife.• In stillbirth or miscarriage, some tribes request having placenta

present at rituals or burial. • Autopsy and organ donation generally not desired.• Conversation may contain long pauses; rude to rush.• Respect shown by keeping distance and no direct eye contact.• Spiritual leader: Shaman or medicine man.• Family spokesperson.

Arab American

• Child’s death is God’s will.• No cremation.• Child buried within 24 hours.• Child is sinless at death.• Tears allowed with child’s death.• Parents may have photos taken.• Autopsy usually forbidden.• May refuse organ donation out of respect for body.• Prayers in silence.• Koran or Ingeel (Bible)• Pride and self-protection may prevent them from saying how

they feel.• Traditional women may avoid eye contact.• Spokesperson may be grandmother.

Buddhist

• The Four Noble Truths and Eightfold Path.

• Peace and quiet for dying.• Spiritual peace, no anxiety,

promote healing and recovery.

• Cremation common.• Organ donation

encouraged.• Autopsy individual decision.• Unless mentally alert, life

support not helpful.• Spiritual leader: Priest.

Chinese American

• Primarily Buddhist, Catholic and Protestant.• Ancestors honored.• Good luck symbols may be displayed.• Illness caused by imbalance of Yin and Yang in the body.• May be fatalistic about terminal illness – not talk about it.• Amulets and clothes put on body.• Family may prefer to bathe the body.• Genetic defects blamed on mother.• Fear having blood drawn.• May avoid surgery to keep body intact so soul has place to live in

future visits to Earth. • Autopsy and organ donation uncommon.• No eye contact with authority figures shows respect.• Eye contact and touching among family and close friends. • Maintain respectful distance.• Silence may indicate respect.• Asking questions is disrespectful.• Spokesperson: Oldest male of household.

Jehovah’s Witnesses

• No sacrament observed.• Reading scriptures aids mental

and spiritual healing.• Resurrection of the dead.• Cremation permitted.• Local customs determine burial.• Blood transfusion a sin.• Medical treatment acceptable.• Autopsy only when required by

law.• Organ donation individual

decision.• No clergy.• Spokesperson: husband, father,

eldest male.Wilke, J. & Limbo, R. (2013). Resolve Through Sharing Bereavement Training:Perinatal Death. La Cross, WI: Gundersen Lutheran Medical Foundation, Inc.

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Black African American

• Baptist, Protestant sects, Muslim, African Methodist Episcopal (AME)

• Illness result of natural or supernatural causes, or God’s punishment

• Prayer valued.

• Professionals cleanse and prepare body.

• Cremation avoided.

• Autopsy accepted.

• Organ donation generally not considered.

• Eye contact shows trust, respect.

• Communicate affection by touching, hugging, being close.

• Spiritual leader: Minister.

Catholicism

• Bible, rosary, prayer books.• Private prayer valued.• Illness part of life.• Belief in afterlife.• Burial common.• Cremation accepted.• Stillborn not baptized.• Medical treatment accepted.• Autopsy and organ donation

accepted.

Judaism

• Three main divisions: Orthodox, Conservative, Reform.

• Right to die with dignity.• Body ritually washed at funeral

home.• Embalming and cosmetic treatment

forbidden.• Orthodox or conservative may refuse

seeing baby or photographs.• Cremation forbidden.• Stillborns buried within 24 hours.• Fetus of any gestational age buried.• Medical care accepted.• Medical procedures avoided on

Sabbath.• Autopsy generally forbidden or

limited.• Organ donation individual consults

with Rabbi.

Mexican American

• Primarily Roman Catholic, some protestants.• Pregnancy loss is God’s will.• Pictures and belongings of child used to create

shrine.• Amulets, religious medallions used.• Children valued.• Wailing sign of respect.• Family time with body important.• Burial common; cremation may occur.• Respect for healthcare providers.• May combine folk healing and biomedical

healthcare.• Autopsy and organ donation accepted if respect

shown.• Influenced by respect.• Direct eye contact usually avoided with authority

figures.• Silence my indicate lack of agreement.• Touch by strangers not appreciated.• Spokesperson: Family makes decisions, which are

communicated by head of household.

Vietnamese

• Predominantly Catholic and Buddhist.• Illness caused by natural or supernatural causes,

imbalance between yin and yang, or Western biomedical explanations.

• Catholics may request priest.• Buddhist may light incense and request monk.• Buddhists prefer cremation. • Family may wish to wash body.• Autopsy uncommon.• Organ donation not allowed.• Gentle touch during conversation may be acceptable.• Head considered sacred and feet profane. • Avoiding eye contact shows respect.• Spokesperson: Father or eldest son.

Muslim

• Qur’an (Koran)• Illness result of bad action.• Illness washes away sins.• One should never complain to God

about illness.• Cover body with sheet.• Ritual washing before burial.• Burial as soon as possible.• Mourn 3 days, hold memorial gatherings.• Spokesperson: Father, eldest son, any

other male in family.Wilke, J. & Limbo, R. (2013). Resolve Through Sharing Bereavement Training:Perinatal Death. La Cross, WI: Gundersen Lutheran Medical Foundation, Inc.

Things to remember:

• Provide family-centered care.• Parents/caregivers are experts in their own care.• The parents/caregivers need time to decide

what is best for them.• Parents/caregivers should not be coerced to do

anything they’re uncomfortable with or that doesn’t feel right to them.

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“Don’t just stand there, do something.”

♦♦♦

“Don’t just do something, stand there.”

Unspoken needs of bereaved parents Prior to the child’s death, if possible, evaluate the parents’ ability to talk

about anticipating “if” their child dies, including what support they may want to think about in advance (funeral arrangements, friends/family involvement and roles).

Immediately after the child’s death (0-2 months), recommend soliciting helpful people right away provide information needed for immediate decisions counsel parents to memorialize their child follow-up with one or more phone calls provide specific positive affirmation to the parents send a card at important dates

Acute grief phase (2 months to 2 years), continue to educate parents on the nature of grief

Continuing grief Continue with interventions

Meisenhelder, J & Gibson, L. (2014). Caring for the bereaved parent: Guidelines for practice. Journal of the American Association of Nurse Practitioners

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What do I say?

There is no one correct way. Each family and experience is unique.

A simple “I’m sorry” is all that is needed to open the doors of communication.

Other helpful things to say: “I’m sad for you.”

“How are you doing with all of this?”

“This must be hard for you.”

“What can I do for you?”

“I’m here, and I want to listen.”

What is not so helpful to say?

“You’re young, you can have others.” (perinatal death)

“You have an angel in heaven.”

“This happened for the best.”

“At least he’s not suffering anymore.”

If it’s a miscarriage or fetal death, do not call the baby “fetus” or “it.” Ask the family the baby’s name or what they call the baby.

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Do Listen more than you talk. Allow for silence. Answer their questions and refer them to the most appropriate people. Contact/call them when you say you will. Refer to the baby by name (if they have named the baby) and talk about

special features. Be genuine and caring. Allow them to express their feelings and tell their story without passing judgment. Reach out to bereaved parents and acknowledge their loss. Encourage them to be patient with themselves and not expect too much. Ask about the funeral or memorial services (if there is/was one). Ask about other family members (siblings, spouses, grandparents). Include other significant family members. Ask if they have any special requests of you. Remember them on special occasions or give a call and let them know you

were thinking of them.

Don’t Dominate the conversation.

Ask one question after another without a break.

Use clichés such as “I know just how you feel,” “This will bring your family closer,” “At least you have other children.”

Pass judgment (“You should be feeling better by now.”)

Avoid them because you are uncomfortable. (Avoidance adds pain; acknowledgment of their loss is what they need.)

Change the subject when they talk about their dead child.

Answer a question you don’t have the answer to.

Give advice, particularly medical or legal, unless you’re an MD or a lawyer.

Make comments that suggest they or their child received inadequate medical care.

Talk only with mothers (include partners, children, elders).

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Uncomplicated vs. Complicated Grief Uncomplicated

Individual may feel sad, guilty and angry, and may experience loss of self-esteem.

Fleeting thoughts of suicide are common and oftentimes take the form of “I’d be better off with my child,” or “My child needs his mother with him.”

The grief is intense in the beginning and may interfere with sleep, appetite and social relationships.

The person experiencing normal, uncomplicated bereavement eventually feels better over time and is able to function.

The usual activities of daily living can be performed; although, often without much interest or enthusiasm.

Complicated .

Absence of any expression of grief in a situation where one would expect to see it.

Anxiety and/or depression that significantly interferes with functioning.

Abuse of mood-altering chemicals.

Persistent suicidal ideation, suicidal ideation with a plan, suicidal ideation with a plan and intent (requires immediate referral).

Relationship difficulties with partner, children, family, friends or work colleagues.

Being “stuck” in searching and yearning, resulting in obsessing about real or perceived guilt or intense anger or a history of mental illness.

Wilke, J. & Limbo, R. (2013). Resolve Through Sharing Bereavement Training:Perinatal Death. La Cross, WI: Gundersen Lutheran Medical Foundation, Inc.

Red flags for major depressionFor someone who is grieving, untreated major depression saps energy, which is needed for the normal bereavement process. Look for:

A 15-20 percent loss or gain in weight.

Worsening symptoms over time. In uncomplicated bereavement, people begin having good days, and the ratio of good days to bad days increases steadily.

Reclusiveness.

Persistent suicidal thoughts.

Inability to perform the necessary tasks of living, such as getting up, going to work, parenting other children, doing household chores.

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Infants & Toddlers Typical Grief Response Ways to HelpLoss may be understood as an absence, particularly of a primary caregiver.

• “I’m upset” behaviors, such as crying more, thumb sucking, biting.

• Changes in normal patterns.• May sleep and eat more or less, be

fussier.

• Offer physical comfort.• Accept the changes while still trying to

adhere to some kind of routine. Infants and toddlers are typically comforted by the structure of routines.

Preschoolers (3-5) Typical Grief Response Ways to HelpDeath may be thought of as temporaryand/or reversible.

• May not understand their new scary feelings and may not be able to verbalize what is happening inside them.

• May ask questions about the death over and over again.

• During play, may reenact the death.• May regress: cling to parents, suck

thumb, lose potty training, use baby talk.

• Provide them with terms for some of their feelings: grief, sadness, numb.

• Answer concretely and lovingly. Be honest. Don’t tell half-truths. Death play is fine and helps children integrate the reality of the death. You may want to join in and offer guidance.

• Short-term regressive behaviors are normal. Offer your presence and support.

Grade-schoolers (6-11) Typical Grief Response Ways to HelpA clearer understanding of death develops. Older children in this age group may have an “adult” understanding of what death is.

• Children in this age group continue to express grief primarily through play.

• May “hang back” socially and scholastically.

• Use “older kid” play therapy techniques, especially for 10- to 12-year-olds.

• Children need permission to concentrate on mourning before they can be expected to forge ahead with the rest of their lives. Give them time.

Children and Grief

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Adolescents (12 and up)

Typical Grief Response Ways to Help

Understand death cognitively, but are only beginning to grapple with it spiritually.

• May protest the loss by acting out and/or withdrawing.

• May feel life has been unfair to them, act angry.

• May act out a search for meaning. May test own mortality.

• Acting-out behaviors should be tolerated if the teen or others is not being harmed. Withdrawal is normal in the short term. (Long-term withdrawal is a sign the teen needs extra help.)

• A teen’s normal egocentrism can cause him/her to focus excessively on the effect the death had on him/her and his/her future. After he/she has time to explore this issue, encourage the teen to consider the death’s impact on the larger social group of family and friends.

• Teens begin to really explore the “why” questions about life and death. Encourage this search for meaning unless it may harm the teen or others.

Wolfelt, A.D. (1996). Healing the bereaved child: Grief Gardening, Growth Through Grief and Other Touchstones for Caregivers. Fort Collins, CO: Companion Press

A Father’s Grief Remaining silent – Keeping the pain private helps to protect against

vulnerability in form of tears, strong feelings and sharing emotions.

Grieving secretly – Grieving when no one can see to spare others from seeing, feeling or experiencing that grief. Anything else often seems against "cultural expectations.”

Taking physical and legal action – Trying to get control over a situation that is out of control. This approach is often supported and rewarded by others as it's seen as being "assertive and courageous" in times of grief.

Becoming immersed in activity – Occupying all time so there is none left to think of the loss or feel the pain of the grief.

Staudacher, C. (1991). Men and Grief: A Guide for Men Surviving the Death of a Loved One. New Harbinger Pubns Inc

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A Grandparent’s Grief The pain grandparents feel for the loss of a grandchild is compounded by

the feelings they have for their own child. Grandparents make plans for the child just the way parents do.

A grandparent’s feelings might not get recognized because the focus is on the parents.

The grieving parent might lash out at the grandparent.

Bereavement Telephone Follow-up Let person know you’re calling to see how he/she is doing since the loss of his/her child.

Ask if it is a good time to talk.

Ask a general question about how he/she is. Healing comes through telling the story of the loss. Ask open-ended questions that encourage parents to talk about how they are doing since the loss occurred. Example: “Can you tell me how things have been for you since ____________ died?”

To encourage verbalization, use active listening techniques such as encouraging, restating, clarifying, reflecting, summarizing or validating.

If you don’t get a good sense of how the person is coping emotionally and physically, you may want to ask more specific questions: Examples: “What has your sleeping pattern been like?”

“How has your appetite been?”

“What helps you the most?”

Continued on next slide…

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Telephone follow-up continued

Ask if there is anything you can do for the person.

If bereaved parents ask for additional information, connect them with appropriate resources. You could assist by: Offering to arrange a grief conference if they have questions about child’s death.

Example: “Sometimes people find it helpful to return to the hospital to talk with staff who cared for them and their child. Would that be helpful for you?”

Calling physician about autopsy results.

Sending additional literature or a recommended reading list.

Identify the need for referrals when appropriate. Examples: “I am concerned about you because…”

“Many people find it helpful to talk with someone who specializes in loss issues. If you’d like, I could connect you with someone.”

Reflective ListeningTry to follow these guidelines:

1. Reflect feeling statements back to the other person. Let the person know what feelings you’re hearing them express.

2. Don’t take responsibility for solving others’ problems. Your purpose is to help them understand how they feel about the problem and what they want to do about it.

3. Ask open-ended questions rather than questions that require a yes, no or some other simple answer. Leave the person room to go in the direction that is most important to him or her.

4. Don’t impose your own feelings and attitudes on people. Be non-judgmental; a solution that’s right for you may be wrong for someone else.


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Secondary trauma

Common responses/reactions when working with bereaved parents:

• Feeling drained of energy

• Feeling sad for the family

• Feeling inadequate as a caregiver

• Wanting to say the “right” or “perfect” thing

• Feeling overwhelmed – what to do first

• Being fearful of causing more pain and distress

• Feeling guilty that they couldn’t do more

PRAM Model for Reflective Practice

Pause: Stop and be still. Center yourself. Ground yourself. Feel your feet on the floor.Reflect: Focus on your breathing. Reflect on your feelings, i.e. “I feel nervous that I’ll say the wrong thing”; “I feel confident that I can help this family.”Acknowledge: Name what you feel, and tell yourself it’s OK to feel as you do.Be Mindful: Be in the moment. Bring attention and energy to the meaning of the relationship that has brought you here.

Limbo, R. & Kobler, K. (2013). "Meaningful Moments: Ritual and Reflection When A Child Dies," Gundersen Health System

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Helper or Rescuer?The Helper The Rescuer

Listens for request. Gives when not asked.

Presents an offer. Neglects to find out if offer is welcome.

Gives only what is needed. Gives help more and longer than needed.

Checks periodically with person. Omits feedback.

Checks results.• Functioning better?• Meeting goals?• Solving problems independently?• Using suggestions successfully?

Doesn’t check results and feels good when accepted, bad when turned down.

Talks less, listens more. Does the greater share of talking.


History of Personal and Professional Loss

My first significant experience with death was …

My age at the time was…

I remember feeling …

As a child I thought that when someone died, he/she…

These beliefs mainly came from…

My first experience with death as a professional was…

It was difficult because…

From this experience I learned that…

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Care for the Caregiver

Know yourself.

Listen with your heart as well as your head.

Know your boundaries and limitations.

Ask for what you need and want.

Be able to say “no.”

Separate your own grief issues from those of your clients.

Realize that you are not perfect.

Facilitate problem solving, but let the client make the decisions.

Be able to laugh and play.

Have closure with the experience.

Remember, self-care is self-esteem.


It is never too late for expressing your feelings to a family about the loss of a child.

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“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly – that still hurts when the weather gets cold, but you learn to dance with the limp.”–Anne Lamott

Sophia Isabelle Picon Meraz12/12/15 – 10/14/16

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Daniel Eliseo Garcia1/10/14 – 8/18/14

AlbuquerqueChildren’s Grief Center of New Mexico, Inc. (505) 323-0478 3001 Trellis Drive NW www.childrensgrief.org

University Home Care Pediatric Hospice (505) 272-6700 933 Bradbury Drive SE, Ste 3082 http://hsc.unm.edu/health/patient-care/pediatrics/hospice-care.html

Northern New MexicoGolden Willow Retreat, Inc.(575) 776-2024 Arroyo Hondo, NM www.goldenwillowretreat.org

Gerard’s House for Grieving Children(505) 424-1800 Santa Fe, NM www.gerardshouse.org

Southern New MexicoBereaved Parents of the USA (575) 527-1193 Fairacres, NM www.bereavedparentsusa.org/BP_Ch_New_Mexico.htm#southern

Online

The Dougy Center – Children’s bereavement support programhttps://www.dougy.org/

The Compassionate Friends –Supporting Family After a Child Dieshttps://www.compassionatefriends.org/

Local and online resources

Documents

Helping Providers Respond to Grieving Families · The usual activities of daily living can be performed; although, often without much interest or enthusiasm. Complicated. Absence