The Child or Adolescent with The Child or Adolescent with Life Threatening Illness: Life Threatening Illness: Caring for the Whole FamilyCaring for the Whole Family

Paula K. Rauch MDPaula K. Rauch MDChief, Child Psychiatry Consultation ServiceChief, Child Psychiatry Consultation Service

Massachusetts General HospitalMassachusetts General HospitalBoston, MA USABoston, MA USA

prauch@partners.orgprauch@partners.org

Setting the StageSetting the Stage

Every family has a story leading up to Every family has a story leading up to diagnosis that can help guide carediagnosis that can help guide care

Recent? Sudden? Straight forward diagnosis?Recent? Sudden? Straight forward diagnosis? Your initial meeting is only a “snapshot” Your initial meeting is only a “snapshot” Every illness has its own natural historyEvery illness has its own natural history

Cystic fibrosis Cystic fibrosis Osteogenic sarcomaOsteogenic sarcoma DiabetesDiabetes

The FamilyThe Family

Every family member has a perspectiveEvery family member has a perspective ParentsParents

Parenting styleParenting style Couple relationshipCouple relationship

SiblingsSiblings Age, stage, temperamentAge, stage, temperament Health statusHealth status

Affected childAffected child

Taking a HistoryTaking a History

What is the hardest part right now?What is the hardest part right now? What is the hardest part for you personally?What is the hardest part for you personally? What is hard for others not living this What is hard for others not living this

experience to understand?experience to understand? Who are you most worried about and why?Who are you most worried about and why? What has been talked about and with whom?What has been talked about and with whom? What words did you and others use?What words did you and others use?

Parent and Patient ExpectationsParent and Patient Expectations

What are you hoping could happen todayWhat are you hoping could happen today What hopes do you have for beyond todayWhat hopes do you have for beyond today Who has been helpful so farWho has been helpful so far Who has really missed the markWho has really missed the mark

Self assessment: Self assessment: How do you (caregiver) assess your successHow do you (caregiver) assess your success Are you realistic about your own limitsAre you realistic about your own limits

Talking about UncertaintyTalking about Uncertainty

Uncertainty is incredibly difficultUncertainty is incredibly difficult Highlight the things that are known Highlight the things that are known

Times of testsTimes of tests Times when doctor will definitelyTimes when doctor will definitely not not be presentbe present

Honest and hopefulHonest and hopeful Time when death is not yet expectedTime when death is not yet expected Plan to make new plans as new data emergesPlan to make new plans as new data emerges

What is being hoped for often evolvesWhat is being hoped for often evolves Sometimes clinicians are ahead of familiesSometimes clinicians are ahead of families

Making a Support PlanMaking a Support Plan

Bucket of ice storyBucket of ice story How can you be reachedHow can you be reached When should you be calledWhen should you be called Be specificBe specific

Our “Thank you” note experienceOur “Thank you” note experience You answered when I calledYou answered when I called You saw me or my family member as a real personYou saw me or my family member as a real person

Ways to Deepen a ConversationWays to Deepen a Conversation

Switch the expected rolesSwitch the expected roles Ask a well person to talk about his/her end of life wishesAsk a well person to talk about his/her end of life wishes Ask what a doctor should be doing or sayingAsk what a doctor should be doing or saying

Ask what has been noticedAsk what has been noticed Starting a conversation about a bad prognosis can feel like Starting a conversation about a bad prognosis can feel like

hurting the child or parenthurting the child or parent Picking up on what has been noticed already is easierPicking up on what has been noticed already is easier

Begin by talking about others to create contextBegin by talking about others to create context Virtual group: Some people do X and some prefer YVirtual group: Some people do X and some prefer Y Talk about what makes this patient/family luckyTalk about what makes this patient/family lucky

Sharing Bad NewsSharing Bad News

Try to give difficult news in personTry to give difficult news in person Try to have the person receiving the news not Try to have the person receiving the news not

be alonebe alone Review what was known prior to this Review what was known prior to this

upcoming news and then what is known nowupcoming news and then what is known now Present the new plan and why Present the new plan and why

The plan may be to take time to thinkThe plan may be to take time to think No treatment does not mean no planNo treatment does not mean no plan

When You are Sharing Bad NewsWhen You are Sharing Bad News

Normalize that it is hard to think after hearing Normalize that it is hard to think after hearing upsetting newsupsetting news

Wait a few minutes for questions to be Wait a few minutes for questions to be generatedgenerated

Let the patent/family know that you expect Let the patent/family know that you expect they will have more questions laterthey will have more questions later

Indicate how you can be reached and when Indicate how you can be reached and when you’ll be backyou’ll be back

Plan a call back or visit several hours laterPlan a call back or visit several hours later

Sharing Bad News with ChildrenSharing Bad News with Children

Depending on the child’s age, parents often Depending on the child’s age, parents often hear firsthear first

Does the parent want to share the news with Does the parent want to share the news with the clinician present the clinician present

Does the parent want the clinician to share the Does the parent want the clinician to share the news with the parent presentnews with the parent present

Ask parents to share their worst fears about the Ask parents to share their worst fears about the telling and what they do NOT want to saytelling and what they do NOT want to say

New NormalNew Normal

There may be a long time from learning about There may be a long time from learning about the diagnosis and prognosis until deaththe diagnosis and prognosis until death

It is surprising how well so many families It is surprising how well so many families manage under these difficult circumstancesmanage under these difficult circumstances

Model attention to the needs of each family Model attention to the needs of each family member including the well siblingsmember including the well siblings

Talk about the challenge of making these Talk about the challenge of making these children feel as well loved as the sick childchildren feel as well loved as the sick child

Talk About Common ChallengesTalk About Common Challenges

Explain magical thinking and worriesExplain magical thinking and worries Normalize having mixed feelingsNormalize having mixed feelings Ask and talk with children: It is an error of Ask and talk with children: It is an error of

kindness to think excluding children from kindness to think excluding children from conversations is protectiveconversations is protective

Underscore for the patient and family that it Underscore for the patient and family that it takes time to adjust and readjusttakes time to adjust and readjust

Feelings often come in waves: jump with the Feelings often come in waves: jump with the waveswaves

Individualized Communication Individualized Communication PlansPlans

Who is talking to whomWho is talking to whom Often helpful to have an inside the family and Often helpful to have an inside the family and

outside the family person identified for each outside the family person identified for each family member to talk with as neededfamily member to talk with as needed

Family members are often protecting each Family members are often protecting each other and this interferes with sharing all their other and this interferes with sharing all their thoughts and worriesthoughts and worries

Communication Beyond the FamilyCommunication Beyond the Family

Information shared cannot be taken backInformation shared cannot be taken back Respect the ill child’s wishes where possibleRespect the ill child’s wishes where possible Be sure the siblings know before their friends Be sure the siblings know before their friends

or cousins door cousins do Talk with school professionalsTalk with school professionals

Pay attention to the needs of well siblingsPay attention to the needs of well siblings Be cautious about well wishers who “over-share”Be cautious about well wishers who “over-share”

Specific Stories: Dying ChildSpecific Stories: Dying Child

WorriesWorries How will my parents recognize me without my How will my parents recognize me without my

bodybody My mother will be too sadMy mother will be too sad

DisappointmentsDisappointments Disney rides: I was too shortDisney rides: I was too short I wanted to own many carsI wanted to own many cars

LegacyLegacy CD’s, Websites, etcCD’s, Websites, etc

Parent Stories: Dying ChildParent Stories: Dying Child

WorriesWorries How will I be able to love my other childrenHow will I be able to love my other children My spouse and I cope so differentlyMy spouse and I cope so differently Scandinavian data: Talking about deathScandinavian data: Talking about death

Painful momentsPainful moments Today my child has been dead as long as aliveToday my child has been dead as long as alive Resentment about accusations of “false” hopeResentment about accusations of “false” hope Traumatic loss: Every year is the sameTraumatic loss: Every year is the same

LegacyLegacy Touched so many livesTouched so many lives

Sibling StoriesSibling Stories

Bone marrow transplant: I thought my parents Bone marrow transplant: I thought my parents decided it was my turn to give my marrow to my decided it was my turn to give my marrow to my sister and likely diesister and likely die

My sister’s CF was so much worse than mine that I My sister’s CF was so much worse than mine that I felt guilty asking for any attentionfelt guilty asking for any attention

I never really forgave my sister for not being around I never really forgave my sister for not being around when my brother got really sick. He was so mad at when my brother got really sick. He was so mad at her. They both had CF and I do not.her. They both had CF and I do not.

My brother was the really good kid. I was sure my My brother was the really good kid. I was sure my parents wished it were me who diedparents wished it were me who died

Funerals and Memorial ServicesFunerals and Memorial Services

Presence of medical professionals importantPresence of medical professionals important Having a policy and plan can be helpfulHaving a policy and plan can be helpful Bereavement rounds for the cliniciansBereavement rounds for the clinicians Cards or visits as follow up with the familyCards or visits as follow up with the family Some memorial requests may be difficult to Some memorial requests may be difficult to

fulfillfulfill Surviving clinic/inpatient friends will hear and Surviving clinic/inpatient friends will hear and

react react

Lessons LearnedLessons Learned

Recognize the different experiences and Recognize the different experiences and perspectives in the familyperspectives in the family

Make clear plans about your availabilityMake clear plans about your availability Facilitate communications within the family Facilitate communications within the family

and with key othersand with key others Model that it is normal to have mixed feelingsModel that it is normal to have mixed feelings Support and normalize different coping stylesSupport and normalize different coping styles Be aware of your own emotionsBe aware of your own emotions

Final ThoughtsFinal Thoughts

LegacyLegacy No one wants their legacy to be destructive to their No one wants their legacy to be destructive to their

family: Use this to heal rupturesfamily: Use this to heal ruptures No parent wants their surviving children to feel No parent wants their surviving children to feel

unloved: Hardest challengeunloved: Hardest challenge Definition of Psychological HealthDefinition of Psychological Health