Informing Parents of “Bad News”

Informing Parents of Informing Parents of “Bad News”“Bad News”

David A. Listman, MDDavid A. Listman, MDDepartment of PediatricsDepartment of PediatricsSt Barnabas HospitalSt Barnabas Hospital

Informal SurveyInformal Survey

Who here has given "Bad News" to a Who here has given "Bad News" to a family member?family member?


Who has given "Bad News" to a Who has given "Bad News" to a parent?parent?


Who has informed a patient/ family Who has informed a patient/ family member that a patient has cancer?member that a patient has cancer?


Who has informed a patient/ family Who has informed a patient/ family member that they have a life-long member that they have a life-long chronic disease? (i.e. diabetes Type chronic disease? (i.e. diabetes Type I)I)


Who has informed parent / family Who has informed parent / family member that a patient has died?member that a patient has died?


Did you feel prepared to give "Bad Did you feel prepared to give "Bad News"?News"?


Did you feel you were in or provided Did you feel you were in or provided with the proper location to give "Bad with the proper location to give "Bad News"?News"?


Have you ever been formally taught Have you ever been formally taught how to give "Bad News"?how to give "Bad News"?

Have you ever been informally Have you ever been informally taught how to give "Bad News"?taught how to give "Bad News"?


What do you wish you knew or could What do you wish you knew or could change about giving "Bad News"?change about giving "Bad News"?

CaseCase

Mark is a 5 year old black male, no past Mark is a 5 year old black male, no past medical history. The patient was being medical history. The patient was being cared for by a babysitter while his mother cared for by a babysitter while his mother worked, his parents do not live together.worked, his parents do not live together.

According to the sitter the child was playing According to the sitter the child was playing in front of his apartment building, when, he in front of his apartment building, when, he ran out into the street between two parked ran out into the street between two parked cars. A car traveling at an excessive rate of cars. A car traveling at an excessive rate of speed struck the child and continued on. speed struck the child and continued on. Emergency measures were administered at Emergency measures were administered at the scene and he arrived in the ED via ALS the scene and he arrived in the ED via ALS ambulance.ambulance. Greenberg et al.

Pediatrics 1999

CaseCase

The child presented in full The child presented in full cardiopulmonary arrest, suffering multiple cardiopulmonary arrest, suffering multiple injuries including closed head trauma, a C-injuries including closed head trauma, a C-1 distraction, a broken left femur and a 1 distraction, a broken left femur and a probable splenic rupture. CPR probable splenic rupture. CPR administered for 45 minutes without administered for 45 minutes without regaining pulse.regaining pulse.

Both parents arrived in the ED shortly Both parents arrived in the ED shortly after the ambulance and are seated near after the ambulance and are seated near the radiology suite.the radiology suite.

Greenberg et al. Pediatrics 1999

CaseCase

What the parents know-What the parents know- 5 year old Mark was left at home with a 5 year old Mark was left at home with a

babysitter while mom was at work.babysitter while mom was at work. Neighbor called that Mark was hit by a Neighbor called that Mark was hit by a

car and was taken to St Barnabas car and was taken to St Barnabas HospitalHospital

CaseCase

Where would you speak to them?Where would you speak to them? Who else would you like to be there?Who else would you like to be there? What would you say about the child, What would you say about the child,

the incident, the resuscitation?the incident, the resuscitation? If and when and where would you If and when and where would you

allow them to see Mark?allow them to see Mark? What will happen next?What will happen next?

Goals and ObjectivesGoals and Objectives

Define “Bad News”Define “Bad News” Review Literature on Breaking “Bad Review Literature on Breaking “Bad

News”News” Find guidance from literatureFind guidance from literature Can we improve our ability to impart Can we improve our ability to impart

“Bad News”?“Bad News”?

What is “Bad News” in Medicine?What is “Bad News” in Medicine?

““Information that produces a Information that produces a negative alteration to a person’s negative alteration to a person’s expectation about their present and expectation about their present and future could be deemed “Bad News”future could be deemed “Bad News”

Fallowfield and Jenkins, The Lancet 2004


Your "Bad News" may not be my Your "Bad News" may not be my "Bad News"."Bad News".

"Bad News" doesn’t have to be fatal"Bad News" doesn’t have to be fatal "Bad News" doesn’t have to seem so "Bad News" doesn’t have to seem so

bad to the medical practitionerbad to the medical practitioner Loss of limb or function may have Loss of limb or function may have

particular cultural significance. particular cultural significance.


Obvious "Bad News"Obvious "Bad News"

Traumatic DeathTraumatic Death Death after chronic illnessDeath after chronic illness Diagnosis of uniformly fatal chronic illnessDiagnosis of uniformly fatal chronic illness

Cystic FibrosisCystic Fibrosis Spinal Muscular AtrophySpinal Muscular Atrophy Muscular DystrophyMuscular Dystrophy

Diagnosis of cancerDiagnosis of cancer leukemialeukemia

Diagnosis of chronic diseaseDiagnosis of chronic disease DiabetesDiabetes AsthmaAsthma

Diagnosis of permanent disabilityDiagnosis of permanent disability Birth defectBirth defect


Not So Obvious "Bad News"Not So Obvious "Bad News" Long bone fracture the day before summer Long bone fracture the day before summer

camp starts.camp starts. Season ending injuries.Season ending injuries. Need for surgeryNeed for surgery

HerniaHernia AppendicitisAppendicitis Ear tubesEar tubes

Diagnosis of ambiguous genitaliaDiagnosis of ambiguous genitalia


Not So Obvious "Bad News"Not So Obvious "Bad News" 5/12/065/12/06 Hideki Matsui Placed on the Hideki Matsui Placed on the

15-day disabled list with a left wrist 15-day disabled list with a left wrist fracture, retroactive to May 11. fracture, retroactive to May 11. Reactivated 9/12/06.Reactivated 9/12/06.

What Clinical Settings Specialize in What Clinical Settings Specialize in “Bad News”“Bad News”

Pediatrics/ OB- much of the literature Pediatrics/ OB- much of the literature deals with informing parents of birth deals with informing parents of birth defects/ chronic diseasesdefects/ chronic diseases

OncologyOncology Initial DiagnosesInitial Diagnoses Move from treatment to palliative careMove from treatment to palliative care

Emergency/ TraumaEmergency/ Trauma

Issues for Doctors Delivering “Bad Issues for Doctors Delivering “Bad News”News”

First experiences involved patients they First experiences involved patients they knew for short timeknew for short time

Felt they needed more trainingFelt they needed more training Working with a clear protocol reduced Working with a clear protocol reduced

stressstress Did not give all news (to cancer patients)Did not give all news (to cancer patients) "Bad News" delivery is stressful with "Bad News" delivery is stressful with

persistent feelings of stresspersistent feelings of stress Oncologists give “Bad News” 35 times a Oncologists give “Bad News” 35 times a

monthmonth

How is “Bad News” studiedHow is “Bad News” studied

Surveys, questionnaires and Surveys, questionnaires and interviewsinterviews

Usually some time after the "Bad Usually some time after the "Bad News" is delivered (often months)News" is delivered (often months)

Consensus guidelinesConsensus guidelines

““Bad News” OptionsBad News” Options

NondisclosureNondisclosure Traditional modelTraditional model AssumptionsAssumptions

Doctor knows what is best for patientDoctor knows what is best for patient Patients don’t want to knowPatients don’t want to know Patients need to be protectedPatients need to be protected

1961 90% of doctors surveyed in US did 1961 90% of doctors surveyed in US did not inform their cancer patients of their not inform their cancer patients of their diagnosisdiagnosis

Girgis et al, J Clin Onc 1995


Full DisclosureFull Disclosure Give all information Give all information As soon as it is knownAs soon as it is known



Individualized DisclosureIndividualized Disclosure Tailors amount and timing of Tailors amount and timing of

information information Based on “negotiation” between doctor Based on “negotiation” between doctor

and patient and patient As soon as it is knownAs soon as it is known


““Bad News” ConsensusBad News” Consensus

Ensure Privacy and Adequate TimeEnsure Privacy and Adequate Time Provide Information Simply and HonestlyProvide Information Simply and Honestly Encourage Patients to Express FeelingsEncourage Patients to Express Feelings Give a Broad Time FrameGive a Broad Time Frame Arrange ReviewArrange Review Discuss Treatment OptionsDiscuss Treatment Options Offer Assistance to Tell OthersOffer Assistance to Tell Others Provide Information About Support Provide Information About Support

ServicesServices Document Information GivenDocument Information Given


What do parents want?What do parents want?

Parents of infants with recently Parents of infants with recently diagnosed disabilitiesdiagnosed disabilities

Structured InterviewStructured Interview Nine themes identifiedNine themes identified

Krahn et al Pediatrics 1993


Communication of InformationCommunication of Information Clear, direct, understandable, detailedClear, direct, understandable, detailed Positive as well as negative Positive as well as negative No offensive languageNo offensive language Information about resourcesInformation about resources

DiagnosticianDiagnostician Be familiarBe familiar Know the patient, not just the diseaseKnow the patient, not just the disease



Communication of affectCommunication of affect Caring, compassionate, gentleCaring, compassionate, gentle Information is personalized (use name)Information is personalized (use name) Communicate equalityCommunicate equality Communicate supportCommunicate support

Pacing of processPacing of process Information presented graduallyInformation presented gradually Take enough time (don’t seem rushed)Take enough time (don’t seem rushed)



When toldWhen told As soon as information is clearly knowAs soon as information is clearly know Don’t pass on unsure information too soonDon’t pass on unsure information too soon

Where toldWhere told Private settingPrivate setting In personIn person

Support persons presentSupport persons present Both parentsBoth parents Other support people, family, friends, hospital Other support people, family, friends, hospital

supportsupport



Contact with childContact with child Infant presentInfant present

Separate process from contentSeparate process from content "Bad News" is always difficult"Bad News" is always difficult


Family PerspectiveFamily Perspective

Survey of surviving family members Survey of surviving family members 2-6 months after Traumatic Death2-6 months after Traumatic Death

Family members ranked most Family members ranked most important elements in delivery of important elements in delivery of “Bad News”“Bad News”

Jurkovich et al, J of Trauma 2000


Most important qualitiesMost important qualities Attitude of news-giverAttitude of news-giver Clarity of messageClarity of message Privacy of conversationPrivacy of conversation Ability to answer questions (knowledge)Ability to answer questions (knowledge) SympathySympathy Time for questionsTime for questions Autopsy informationAutopsy information



Least important qualitiesLeast important qualities Attire of News GiverAttire of News Giver



Were good atWere good at Providing news with clarityProviding news with clarity News give able to answer questionsNews give able to answer questions Appropriate attitudeAppropriate attitude



Were poor atWere poor at Informing likelihood of autopsyInforming likelihood of autopsy Having clergy availableHaving clergy available Timing, location and privacyTiming, location and privacy


"Bad News" in the Emergency "Bad News" in the Emergency DepartmentDepartment

Families do not have time to prepare Families do not have time to prepare for the deathfor the death

Practitioners do not have a prior Practitioners do not have a prior relationship with patient or family relationship with patient or family

Very stressful for practitionersVery stressful for practitioners

Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency "Bad News" in the Emergency Department- Initial ContactDepartment- Initial Contact

Family may be at bedside or kept Family may be at bedside or kept outsideoutside

Try to find a private place for familyTry to find a private place for family Keep family updatedKeep family updated Informing family of imminent death Informing family of imminent death

may give them time to preparemay give them time to prepare Family may experience or express Family may experience or express

denialdenial Truth may be slowly absorbedTruth may be slowly absorbed


"Bad News" in the Emergency "Bad News" in the Emergency Department- Update the FamilyDepartment- Update the Family

Speak in plain EnglishSpeak in plain English Educate them if neededEducate them if needed Repeat key conceptsRepeat key concepts Give the family time to ask questionsGive the family time to ask questions Say what you know to be true, don’t guessSay what you know to be true, don’t guess The words you say and how you say them The words you say and how you say them

will be remembered for a lifetimewill be remembered for a lifetime


"Bad News" in the Emergency "Bad News" in the Emergency Department- Death NotificationDepartment- Death Notification

Defer the question of “Is he dead?”Defer the question of “Is he dead?” Make sure all appropriate people are thereMake sure all appropriate people are there Summarize the patient’s experiences since Summarize the patient’s experiences since

contact with health care teamcontact with health care team EMSEMS EDED

State that the patient has died clearly and State that the patient has died clearly and compassionatelycompassionately Do not use ambiguous terms (i.e. passed, Do not use ambiguous terms (i.e. passed,

expired, unable to be revived)expired, unable to be revived)Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency "Bad News" in the Emergency Department- Death NotificationDepartment- Death Notification

Initial reaction is usually an eruption Initial reaction is usually an eruption of griefof grief Culturally determinedCulturally determined Rarely hostile to staffRarely hostile to staff

Physician should stay in room with Physician should stay in room with family family As a resourceAs a resource As a silent presenceAs a silent presence Remind family members (especially Remind family members (especially

other children) that it was not their fault.other children) that it was not their fault.Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency "Bad News" in the Emergency Department- Viewing the bodyDepartment- Viewing the body

Family’s optionFamily’s option Physician should consider state of body Physician should consider state of body

if grossly disfiguredif grossly disfigured Provide appropriate settingProvide appropriate setting

Dimmed lightsDimmed lights Chair to sit with bodyChair to sit with body

Clean body and area somewhatClean body and area somewhat May reinforce reality of deathMay reinforce reality of death May allow them to “say Good Bye”May allow them to “say Good Bye”


"Bad News" in the Emergency "Bad News" in the Emergency Department- Viewing the bodyDepartment- Viewing the body

Photo/ Lock of hairPhoto/ Lock of hair Hand/ Foot printHand/ Foot print


"Bad News" in the Emergency "Bad News" in the Emergency Department- Counseling the familyDepartment- Counseling the family

Tissue donationTissue donation Medical examiner/ autopsyMedical examiner/ autopsy

Be direct and honestBe direct and honest

Funeral arrangementsFuneral arrangements Resource to answer questions laterResource to answer questions later


"Bad News" in the Emergency "Bad News" in the Emergency DepartmentDepartment

Families found meaningful:Families found meaningful: Caring interestCaring interest KindnessKindness Appearance of unhurriednessAppearance of unhurriedness


Can You Teach Physicians to be Can You Teach Physicians to be Better at Breaking "Bad News"Better at Breaking "Bad News"

I hope soI hope so Didactic SessionsDidactic Sessions Enactment of ScenariosEnactment of Scenarios Sessions with family members who have Sessions with family members who have

received "Bad News"received "Bad News" Standardized patientsStandardized patients Structured interviewsStructured interviews

Future Issues in “Bad News”Future Issues in “Bad News”

Little written about impact on the Little written about impact on the news giver.news giver.

Little written about Emergency Little written about Emergency Departments.Departments.

CaseCase 6 year old Casey was sleeping over at 7 6 year old Casey was sleeping over at 7

year old Melissa’s house.year old Melissa’s house. At 2 am a house fire occurred. Fire At 2 am a house fire occurred. Fire

department arrived, it took them 15-20 department arrived, it took them 15-20 minutes to locate the sleeping family minutes to locate the sleeping family members. members.

Melissa’s father was killed in the fire.Melissa’s father was killed in the fire. Melissa was found apneic and pulseless Melissa was found apneic and pulseless

dry leathery skin on face and trunk.dry leathery skin on face and trunk. Melissa’s mother is being intubated Melissa’s mother is being intubated

prophylactically as she has carbonaceous prophylactically as she has carbonaceous sputum.sputum.

CaseCase

Casey was found pulseless and apneic with Casey was found pulseless and apneic with minimal visible burns.minimal visible burns.

After transport to hospital without recovery After transport to hospital without recovery of vital signs and CPR for 20 minute in the of vital signs and CPR for 20 minute in the hospital without recovery of vital signs, hospital without recovery of vital signs, both children are pronounced dead.both children are pronounced dead.

Please speak to Melissa’s mother prior to Please speak to Melissa’s mother prior to her intubation and transfer to Cornell burn her intubation and transfer to Cornell burn center.center.

Please speak to Casey’s grandparents (her Please speak to Casey’s grandparents (her parents live out of town).parents live out of town).

CaseCase

What the mother knows-What the mother knows- Entire family was in house fire.Entire family was in house fire. Her husband was killed.Her husband was killed. Her daughter and her daughter’s friend Her daughter and her daughter’s friend

were taken to the hospital.were taken to the hospital. She has been told that she needs to She has been told that she needs to

have a breathing tube put in and that have a breathing tube put in and that she will be transferred to a burn center.she will be transferred to a burn center.

CaseCase

Where would you speak to the Where would you speak to the mother?mother?

Who else would you like to be there?Who else would you like to be there? What would you say about the child, What would you say about the child,


allow her to see Melissa?allow her to see Melissa? What will happen next?What will happen next?

CaseCase

What the grandparents knowWhat the grandparents know Casey slept over at Melissa’s house.Casey slept over at Melissa’s house. Called by the fire department that there Called by the fire department that there

was a house fire.was a house fire. Told that Casey was brought to St Told that Casey was brought to St

Barnabas hospital by ambulance. Barnabas hospital by ambulance.

CaseCase

Where would you speak to Casey’s Where would you speak to Casey’s grandparents?grandparents?

Who else would you like to be there?Who else would you like to be there? What would you say about the child, What would you say about the child,


allow them to see Casey?allow them to see Casey? What will happen next?What will happen next?

ResourcesResources Von Bloch. Social Work in Health Care Von Bloch. Social Work in Health Care

1996. Vol 23(4).1996. Vol 23(4). Vaidya et al. Archives of Pediatric and Vaidya et al. Archives of Pediatric and

Adolescent Medicine 1999. Vol 153.Adolescent Medicine 1999. Vol 153. Greenberg et al. Pediatrics 1999. Vol 103 Greenberg et al. Pediatrics 1999. Vol 103

(6).(6). Morgan et al. Archives of Pediatric and Morgan et al. Archives of Pediatric and

Adolescent Medicine 1996. Vol 150 (6).Adolescent Medicine 1996. Vol 150 (6). Fallowfield and Jenkins. The Lancet 2004. Fallowfield and Jenkins. The Lancet 2004.

Vol 363. Vol 363. Jurkovich et al. The Journal of Trauma Jurkovich et al. The Journal of Trauma

2000. Vol 48 (5).2000. Vol 48 (5).

Documents

Informing Parents of “Bad News”