Conveying Bad News: The Death of a Child

Dr. Horacio ZaglulDirector, Pediatric Intensive Care Unit

Chandler Medical CenterUniversity of Kentucky

Four Patterns of Death

• The pattern of death determines the course of care as well as reactions of family to the death of a loved one

• Sudden deaths are often caused by accidents

• Fluctuating declines are characterized by intermittent remissions

• Fragile patterns describe those of some children with chronic conditions such as cystic fibrosis

Patterns of Pathways of DyingPatterns of Pathways of Dying

Feudtner, C. Pediatr Clin N Am 54 (2007) 587Feudtner, C. Pediatr Clin N Am 54 (2007) 587 H. F. Zaglul, MD

Problems some Problems some physiciansphysicians have in have in conveying bad newsconveying bad news

Some lack training…othersSome lack training…others• Are unwilling to become emotionally involvedAre unwilling to become emotionally involved• Possess a poor capacity for intimacyPossess a poor capacity for intimacy• Have abandoned the ideals they embraced upon entrance to Have abandoned the ideals they embraced upon entrance to

the medical schoolthe medical school• Practice “defensive” medicinePractice “defensive” medicine• Have no time for recovery after conveying bad newsHave no time for recovery after conveying bad news• Avoid it...orAvoid it...or

……are overworkedare overworked

H. F. Zaglul, MD

Conveying Bad News:An Overview

• The conversation to convey bad news has three components– Preparation of yourself and the recipients of

the news– Delivery of the news– Follow-up with the patient and/or family

• A summary of this is diagrammed next…

Breaking Bad News SummaryBreaking Bad News Summary

H. F. Zaglul, MD

Preparation: Make a PlanPreparation: Make a Plan

• Decide with the staff and family when, where and who should Decide with the staff and family when, where and who should attend the meeting in which you will convey the bad newsattend the meeting in which you will convey the bad news

• Invite the family to a meeting, mentioning a purpose such as Invite the family to a meeting, mentioning a purpose such as the need to discuss their child’s carethe need to discuss their child’s care

• Empower the family to write down questions or concernsEmpower the family to write down questions or concerns• Make sure that clinical staff is knowledgeable and in accordMake sure that clinical staff is knowledgeable and in accord• Decide who will run the meeting: who is the right person to Decide who will run the meeting: who is the right person to

give the bad news? Is it you?give the bad news? Is it you?• Consider whether an interpreter is needed; Consider whether Consider whether an interpreter is needed; Consider whether

there may be there may be cultural attitudescultural attitudes that may affect the family’s that may affect the family’s reactionsreactions

• Know as much about the case as you canKnow as much about the case as you can

H. F. Zaglul, MD

Dr. Z’s reflectionsDr. Z’s reflections

• Death is a Death is a processprocess more than a moment more than a moment• The family needs to hear The family needs to hear everything medically possible everything medically possible

was donewas done to save their child to save their child• Let the family Let the family do what they cando what they can for the child for the child• Never force a decision to withdraw supportNever force a decision to withdraw support• Be availableBe available• Look for supportLook for support

H. F. Zaglul, MD

Deliver the Bad News:Deliver the Bad News:Clues to effective deliveryClues to effective delivery

• Timely Timely • ClearClear• Simple languageSimple language• HonestHonest• StraightforwardStraightforward• Compassionately Compassionately • RespectfullyRespectfully• Show empathy but do not Show empathy but do not

lose controllose control• One hour is too longOne hour is too long

• SensitivelySensitively• Minimize sufferingMinimize suffering• AssuranceAssurance• Strengthen relationshipsStrengthen relationships• EmpowerEmpower• Minimize interruptionsMinimize interruptions• Listen more, talk lessListen more, talk less• CollaborativelyCollaboratively

H. F. Zaglul, MD

Delivery:Delivery:Beginning the meetingBeginning the meeting

• Assure that everyone is seated comfortablyAssure that everyone is seated comfortably

• Introduce everyoneIntroduce everyone

• Propose an agenda and ask family to contribute to itPropose an agenda and ask family to contribute to it

• Do not appear rushed or in a hurryDo not appear rushed or in a hurry

• Brace yourself for an emotional taskBrace yourself for an emotional task

• Explore what is known by the patient/familyExplore what is known by the patient/family

• Be curious and ask questionsBe curious and ask questions

H. F. Zaglul, MD

Delivery:Delivery:Go for itGo for it

• Provide a warning shotProvide a warning shot

• Try to avoid being too certain or too vagueTry to avoid being too certain or too vague

• State bad news simplyState bad news simply

• Allow and tolerate silenceAllow and tolerate silence

• Listen to what the parents say. Try to think of the unasked Listen to what the parents say. Try to think of the unasked questions questions

• Acknowledge emotions;Acknowledge emotions; parents may respond differentlyparents may respond differently

• Allow time for questions. Reply to all as best you canAllow time for questions. Reply to all as best you can

H. F. Zaglul, MD

Delivery: Delivery: Keep in MindKeep in Mind

• Do not impose the truth, but if the patient asks, do not lieDo not impose the truth, but if the patient asks, do not lie

• Try not to overload parents with too much informationTry not to overload parents with too much information

• Do not take all hope awayDo not take all hope away

• Try not to let your own opinions interfere, even if parents push you to make Try not to let your own opinions interfere, even if parents push you to make a decision a decision forfor them. Give the parents sufficient information to be able to them. Give the parents sufficient information to be able to make any decision make any decision withwith you you

• Seek to establish clear and aligned goals of careSeek to establish clear and aligned goals of care

H. F. Zaglul, MD

Delivery:Delivery:Making sure the news is conveyedMaking sure the news is conveyed

• Review agenda and assure that all issues were coveredReview agenda and assure that all issues were covered

• Restate the agreed upon goals of careRestate the agreed upon goals of care

• If no consensus, acknowledge this and plan for further dialogue If no consensus, acknowledge this and plan for further dialogue and perhaps information gatheringand perhaps information gathering

• Confirm agreementConfirm agreement

• Thank everyone for their contributionThank everyone for their contribution

H. F. Zaglul, MD

COMMON FAULTS IN THE COMMON FAULTS IN THE BREAKING OF BAD NEWSBREAKING OF BAD NEWS

• Not doing it and hoping someone else will pick up the piecesNot doing it and hoping someone else will pick up the pieces• Avoiding the patient or parents, never seeing them alone, Avoiding the patient or parents, never seeing them alone,

always being in a hurryalways being in a hurry• Putting it off – e.g., by ordering more (unnecessary) testsPutting it off – e.g., by ordering more (unnecessary) tests• Getting the child’s name or other details wrong – read the Getting the child’s name or other details wrong – read the

notes thoroughly before talking to anyonenotes thoroughly before talking to anyone• FidgetingFidgeting• Avoiding eye contact; e.g., looking out the windowAvoiding eye contact; e.g., looking out the window• Going into undertaker mode – there is always something Going into undertaker mode – there is always something

positive to say, even in the most gloomy circumstancespositive to say, even in the most gloomy circumstances• Being smug because you have got the diagnosis correctBeing smug because you have got the diagnosis correct• Identifying with the patient or parents so much that your ownIdentifying with the patient or parents so much that your own

personal feelings get in the waypersonal feelings get in the way

H. F. Zaglul, MD

Careful…Careful…in using these wordsin using these words

• I know just how you feelI know just how you feel• You must be strong for your childrenYou must be strong for your children• God never gives us more than we can handleGod never gives us more than we can handle• This was God’s willThis was God’s will• Time will heal everythingTime will heal everything• Count your other blessingsCount your other blessings• If there is anything I can do, just callIf there is anything I can do, just call

H. F. Zaglul, MD

And Careful…And Careful…in using these wordsin using these words

• He (she) might not be here with us alreadyHe (she) might not be here with us already• God needed another angel in heavenGod needed another angel in heaven• God is “taking” your child for a reasonGod is “taking” your child for a reason• It is a blessingIt is a blessing• I am sorry about your situationI am sorry about your situation

……in using the adjective “peaceful” indiscriminatelyin using the adjective “peaceful” indiscriminately

H. F. Zaglul, MD

Closing the meeting: Follow-upClosing the meeting: Follow-up

• Arrange a review appointment relatively soonArrange a review appointment relatively soon• Make the family aware of who to contact if they have questions Make the family aware of who to contact if they have questions

in the meantime (e.g. ward staff, yourself)in the meantime (e.g. ward staff, yourself)• Make sure the parents know if there are further results awaited Make sure the parents know if there are further results awaited

and how they will get theseand how they will get these• Provide written information if available Provide written information if available • Suggest to parents that they write down any questions they Suggest to parents that they write down any questions they

think of before the next meetingthink of before the next meeting• After you have arranged follow-up: leave the room, preferably After you have arranged follow-up: leave the room, preferably

leaving a nurse with the parents for a period of timeleaving a nurse with the parents for a period of time• Leave but do not abandonLeave but do not abandon

H. F. Zaglul, MD

Follow-up: After the meetingFollow-up: After the meeting

• Document in the notes what information the parents have been Document in the notes what information the parents have been given and who was presentgiven and who was present

• At review appointments update the news At review appointments update the news • In addition, try to see parents at times when there is no bad In addition, try to see parents at times when there is no bad

newsnews• Offer to talk to other relatives e.g. grandparentsOffer to talk to other relatives e.g. grandparents

(Beware of demanding relatives)(Beware of demanding relatives)• Remember to maintain patient confidentialityRemember to maintain patient confidentiality• Consider a Consider a debriefing for yourself and the staffdebriefing for yourself and the staff involved (do not involved (do not

forget interpreters)forget interpreters)• Find out about local services for bereaved peopleFind out about local services for bereaved people

H. F. Zaglul, MD

To summarize…

H. F. Zaglul, MD