Informing Parents of Bad NewsDavid A. Listman, MDDepartment of PediatricsSt Barnabas Hospital

Informal SurveyWho here has given "Bad News" to a family member?

Informal Survey

Who has given "Bad News" to a parent?

Informal Survey

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

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

Informal SurveyWho has informed parent / family member that a patient has died?

Informal SurveyDid you feel prepared to give "Bad News"?

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

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

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

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

CaseMark is a 5 year old black male, no past medical history. The patient was being cared for by a babysitter while his mother worked, his parents do not live together.According to the sitter the child was playing in front of his apartment building, when, he ran out into the street between two parked cars. A car traveling at an excessive rate of speed struck the child and continued on. Emergency measures were administered at the scene and he arrived in the ED via ALS ambulance.Greenberg et al. Pediatrics 1999

CaseThe child presented in full cardiopulmonary arrest, suffering multiple injuries including closed head trauma, a C-1 distraction, a broken left femur and a probable splenic rupture. CPR administered for 45 minutes without regaining pulse.Both parents arrived in the ED shortly after the ambulance and are seated near the radiology suite.Greenberg et al. Pediatrics 1999

CaseWhat the parents know-5 year old Mark was left at home with a babysitter while mom was at work.Neighbor called that Mark was hit by a car and was taken to St Barnabas Hospital

CaseWhere would you speak to them?Who else would you like to be there?What would you say about the child, the incident, the resuscitation?If and when and where would you allow them to see Mark?What will happen next?

Goals and ObjectivesDefine Bad NewsReview Literature on Breaking Bad NewsFind guidance from literatureCan we improve our ability to impart Bad News?

What is Bad News in Medicine?Information that produces a negative alteration to a persons expectation about their present and future could be deemed Bad NewsFallowfield and Jenkins, The Lancet 2004

What is Bad News in Medicine?Your "Bad News" may not be my "Bad News"."Bad News" doesnt have to be fatal"Bad News" doesnt have to seem so bad to the medical practitionerLoss of limb or function may have particular cultural significance.

What is Bad News in Medicine?Obvious "Bad News"

Traumatic DeathDeath after chronic illnessDiagnosis of uniformly fatal chronic illnessCystic FibrosisSpinal Muscular AtrophyMuscular DystrophyDiagnosis of cancerleukemiaDiagnosis of chronic diseaseDiabetesAsthmaDiagnosis of permanent disabilityBirth defect

What is Bad News in Medicine?Not So Obvious "Bad News"Long bone fracture the day before summer camp starts.Season ending injuries.Need for surgeryHerniaAppendicitisEar tubesDiagnosis of ambiguous genitalia

What is Bad News in Medicine?Not So Obvious "Bad News"5/12/06 Hideki Matsui Placed on the 15-day disabled list with a left wrist fracture, retroactive to May 11. Reactivated 9/12/06.

What Clinical Settings Specialize in Bad NewsPediatrics/ OB- much of the literature deals with informing parents of birth defects/ chronic diseasesOncologyInitial DiagnosesMove from treatment to palliative careEmergency/ Trauma

Issues for Doctors Delivering Bad NewsFirst experiences involved patients they knew for short timeFelt they needed more trainingWorking with a clear protocol reduced stressDid not give all news (to cancer patients)"Bad News" delivery is stressful with persistent feelings of stressOncologists give Bad News 35 times a month

How is Bad News studiedSurveys, questionnaires and interviewsUsually some time after the "Bad News" is delivered (often months)Consensus guidelines

Bad News OptionsNondisclosureTraditional modelAssumptionsDoctor knows what is best for patientPatients dont want to knowPatients need to be protected1961 90% of doctors surveyed in US did not inform their cancer patients of their diagnosisGirgis et al, J Clin Onc 1995

Bad News OptionsFull DisclosureGive all information As soon as it is knownGirgis et al, J Clin Onc 1995

Bad News OptionsIndividualized DisclosureTailors amount and timing of information Based on negotiation between doctor and patient As soon as it is knownGirgis et al, J Clin Onc 1995

Bad News ConsensusEnsure Privacy and Adequate TimeProvide Information Simply and HonestlyEncourage Patients to Express FeelingsGive a Broad Time FrameArrange ReviewDiscuss Treatment OptionsOffer Assistance to Tell OthersProvide Information About Support ServicesDocument Information GivenGirgis et al, J Clin Onc 1995

What do parents want?Parents of infants with recently diagnosed disabilitiesStructured InterviewNine themes identified

Krahn et al Pediatrics 1993

What do parents want?Communication of InformationClear, direct, understandable, detailedPositive as well as negative No offensive languageInformation about resourcesDiagnosticianBe familiarKnow the patient, not just the disease

Krahn et al Pediatrics 1993

What do parents want?Communication of affectCaring, compassionate, gentleInformation is personalized (use name)Communicate equalityCommunicate supportPacing of processInformation presented graduallyTake enough time (dont seem rushed)

Krahn et al Pediatrics 1993

What do parents want?When toldAs soon as information is clearly knowDont pass on unsure information too soonWhere toldPrivate settingIn personSupport persons presentBoth parentsOther support people, family, friends, hospital support

Krahn et al Pediatrics 1993

What do parents want?Contact with childInfant presentSeparate process from content"Bad News" is always difficult

Krahn et al Pediatrics 1993

Family PerspectiveSurvey of surviving family members 2-6 months after Traumatic DeathFamily members ranked most important elements in delivery of Bad NewsJurkovich et al, J of Trauma 2000

Family PerspectiveMost important qualitiesAttitude of news-giverClarity of messagePrivacy of conversationAbility to answer questions (knowledge)SympathyTime for questionsAutopsy informationJurkovich et al, J of Trauma 2000

Family PerspectiveLeast important qualitiesAttire of News GiverJurkovich et al, J of Trauma 2000

Family PerspectiveWere good atProviding news with clarityNews give able to answer questionsAppropriate attitudeJurkovich et al, J of Trauma 2000

Family PerspectiveWere poor atInforming likelihood of autopsyHaving clergy availableTiming, location and privacyJurkovich et al, J of Trauma 2000

"Bad News" in the Emergency DepartmentFamilies do not have time to prepare for the deathPractitioners do not have a prior relationship with patient or family Very stressful for practitioners

Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency Department- Initial ContactFamily may be at bedside or kept outsideTry to find a private place for familyKeep family updatedInforming family of imminent death may give them time to prepareFamily may experience or express denialTruth may be slowly absorbedVon Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency Department- Update the FamilySpeak in plain EnglishEducate them if neededRepeat key conceptsGive the family time to ask questionsSay what you know to be true, dont guessThe words you say and how you say them will be remembered for a lifetimeVon Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency Department- Death NotificationDefer the question of Is he dead?Make sure all appropriate people are thereSummarize the patients experiences since contact with health care teamEMSEDState that the patient has died clearly and compassionatelyDo not use ambiguous terms (i.e. passed, expired, unable to be revived)Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency Department- Death NotificationInitial reaction is usually an eruption of griefCulturally determinedRarely hostile to staffPhysician should stay in room with family As a resourceAs a silent presenceRemind family members (especially other children) that it was not their fault.

Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency Department- Viewing the bodyFamilys optionPhysician should consider state of body if grossly disfiguredProvide appropriate settingDimmed lightsChair to sit with bodyClean body and area somewhatMay reinforce reality of deathMay allow them to say Good Bye

Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency Department- Viewing the bodyPhoto/ Lock of hairHand/ Foot print

Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency Department- Counseling the familyTissue donationMedical examiner/ autopsyBe direct and honest

Funeral arrangementsResource to answer questions later

Von Bloch, Social Work in Health Care, 1996.

"Bad News" in the Emergency DepartmentFamilies found meaningful:Caring interestKindnessAppearance of unhurriedness

Von Bloch, Social Work in Health Care, 1996.

Can You Teach Physicians to be Better at Breaking "Bad News"I hope soDidactic SessionsEnactment of ScenariosSessions with family members who have received "Bad News"Standardized patientsStructured interviews

Future Issues in Bad NewsLittle written about impact on the news giver.Little written about Emergency Departments.

Case6 year old Casey was sleeping over at 7 year old Melissas house.At 2 am a house fire occurred. Fire department arrived, it took them 15-20 minutes to locate the sleeping family members. Melissas father was killed in the fire.Melissa was found apneic and pulseless dry leathery skin on face and trunk.Melissas mother is being intubated prophylactically as she has carbonaceous sputum.

CaseCasey was found pulseless and apneic with minimal visible burns.After transport to hospital without recovery of vital signs and CPR for 20 minute in the hospital without recovery of vital signs, both children are pronounced dead.Please speak to Melissas mother prior to her intubation and transfer to Cornell burn center.Please speak to Caseys grandparents (her parents live out of town).

CaseWhat the mother knows-Entire family was in house fire.Her husband was killed.Her daughter and her daughters friend were taken to the hospital.She has been told that she needs to have a breathing tube put in and that she will be transferred to a burn center.

CaseWhere would you speak to the mother?Who else would you like to be there?What would you say about the child, the incident, the resuscitation?If and when and where would you allow her to see Melissa?What will happen next?

CaseWhat the grandparents knowCasey slept over at Melissas house.Called by the fire department that there was a house fire.Told that Casey was brought to St Barnabas hospital by ambulance.

CaseWhere would you speak to Caseys grandparents?Who else would you like to be there?What would you say about the child, the incident, the resuscitation?If and when and where would you allow them to see Casey?What will happen next?

ResourcesVon Bloch. Social Work in Health Care 1996. Vol 23(4).Vaidya et al. Archives of Pediatric and Adolescent Medicine 1999. Vol 153.Greenberg et al. Pediatrics 1999. Vol 103 (6).Morgan et al. Archives of Pediatric and Adolescent Medicine 1996. Vol 150 (6).Fallowfield and Jenkins. The Lancet 2004. Vol 363.Jurkovich et al. The Journal of Trauma 2000. Vol 48 (5).