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Informing Parents of Bad News David A. Listman, MD Department of Pediatrics St Barnabas Hospital.

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Presentation on theme: "Informing Parents of Bad News David A. Listman, MD Department of Pediatrics St Barnabas Hospital."— Presentation transcript:

1 Informing Parents of Bad News David A. Listman, MD Department of Pediatrics St Barnabas Hospital

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

3 Informal Survey Who has given "Bad News" to a parent? Who has given "Bad News" to a parent?

4 Informal Survey Who has informed a patient/ family member that a patient has cancer? Who has informed a patient/ family member that a patient has cancer?

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

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

7 Informal Survey Did you feel prepared to give "Bad News"? Did you feel prepared to give "Bad News"?

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

9 Informal Survey Have you ever been formally taught how to give "Bad News"? Have you ever been formally taught how to give "Bad News"? Have you ever been informally taught how to give "Bad News"? Have you ever been informally taught how to give "Bad News"?

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

11 Case Mark 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. Mark 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. 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

12 Case The 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. The 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. Both parents arrived in the ED shortly after the ambulance and are seated near the radiology suite. Greenberg et al. Pediatrics 1999

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

14 Case 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, the incident, the resuscitation? What would you say about the child, the incident, the resuscitation? If and when and where would you allow them to see Mark? If and when and where would you allow them to see Mark? What will happen next? What will happen next?

15 Goals and Objectives Define Bad News Define Bad News Review Literature on Breaking Bad News Review Literature on Breaking Bad News Find guidance from literature Find guidance from literature Can we improve our ability to impart Bad News? Can we improve our ability to impart Bad News?

16 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 News Information that produces a negative alteration to a persons expectation about their present and future could be deemed Bad News Fallowfield and Jenkins, The Lancet 2004

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

18 What is Bad News in Medicine? Obvious "Bad News" Traumatic Death Traumatic Death Death after chronic illness Death after chronic illness Diagnosis of uniformly fatal chronic illness Diagnosis of uniformly fatal chronic illness Cystic Fibrosis Cystic Fibrosis Spinal Muscular Atrophy Spinal Muscular Atrophy Muscular Dystrophy Muscular Dystrophy Diagnosis of cancer Diagnosis of cancer leukemia leukemia Diagnosis of chronic disease Diagnosis of chronic disease Diabetes Diabetes Asthma Asthma Diagnosis of permanent disability Diagnosis of permanent disability Birth defect Birth defect

19 What is Bad News in Medicine? Not So Obvious "Bad News" Long bone fracture the day before summer camp starts. Long bone fracture the day before summer camp starts. Season ending injuries. Season ending injuries. Need for surgery Need for surgery Hernia Hernia Appendicitis Appendicitis Ear tubes Ear tubes Diagnosis of ambiguous genitalia Diagnosis of ambiguous genitalia

20 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. 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.

21 What Clinical Settings Specialize in Bad News Pediatrics/ OB- much of the literature deals with informing parents of birth defects/ chronic diseases Pediatrics/ OB- much of the literature deals with informing parents of birth defects/ chronic diseases Oncology Oncology Initial Diagnoses Initial Diagnoses Move from treatment to palliative care Move from treatment to palliative care Emergency/ Trauma Emergency/ Trauma

22 Issues for Doctors Delivering Bad News First experiences involved patients they knew for short time First experiences involved patients they knew for short time Felt they needed more training Felt they needed more training Working with a clear protocol reduced stress Working with a clear protocol reduced stress Did not give all news (to cancer patients) Did not give all news (to cancer patients) "Bad News" delivery is stressful with persistent feelings of stress "Bad News" delivery is stressful with persistent feelings of stress Oncologists give Bad News 35 times a month Oncologists give Bad News 35 times a month

23 How is Bad News studied Surveys, questionnaires and interviews Surveys, questionnaires and interviews Usually some time after the "Bad News" is delivered (often months) Usually some time after the "Bad News" is delivered (often months) Consensus guidelines Consensus guidelines

24 Bad News Options Nondisclosure Nondisclosure Traditional model Traditional model Assumptions Assumptions Doctor knows what is best for patient Doctor knows what is best for patient Patients dont want to know Patients dont want to know Patients need to be protected Patients need to be protected 1961 90% of doctors surveyed in US did not inform their cancer patients of their diagnosis 1961 90% of doctors surveyed in US did not inform their cancer patients of their diagnosis Girgis et al, J Clin Onc 1995

25 Bad News Options Full Disclosure Full Disclosure Give all information Give all information As soon as it is known As soon as it is known Girgis et al, J Clin Onc 1995

26 Bad News Options Individualized Disclosure Individualized Disclosure Tailors amount and timing of information Tailors amount and timing of information Based on negotiation between doctor and patient Based on negotiation between doctor and patient As soon as it is known As soon as it is known Girgis et al, J Clin Onc 1995

27 Bad News Consensus Ensure Privacy and Adequate Time Ensure Privacy and Adequate Time Provide Information Simply and Honestly Provide Information Simply and Honestly Encourage Patients to Express Feelings Encourage Patients to Express Feelings Give a Broad Time Frame Give a Broad Time Frame Arrange Review Arrange Review Discuss Treatment Options Discuss Treatment Options Offer Assistance to Tell Others Offer Assistance to Tell Others Provide Information About Support Services Provide Information About Support Services Document Information Given Document Information Given Girgis et al, J Clin Onc 1995

28 What do parents want? Parents of infants with recently diagnosed disabilities Parents of infants with recently diagnosed disabilities Structured Interview Structured Interview Nine themes identified Nine themes identified Krahn et al Pediatrics 1993

29 What do parents want? Communication of Information Communication of Information Clear, direct, understandable, detailed Clear, direct, understandable, detailed Positive as well as negative Positive as well as negative No offensive language No offensive language Information about resources Information about resources Diagnostician Diagnostician Be familiar Be familiar Know the patient, not just the disease Know the patient, not just the disease Krahn et al Pediatrics 1993

30 What do parents want? Communication of affect Communication of affect Caring, compassionate, gentle Caring, compassionate, gentle Information is personalized (use name) Information is personalized (use name) Communicate equality Communicate equality Communicate support Communicate support Pacing of process Pacing of process Information presented gradually Information presented gradually Take enough time (dont seem rushed) Take enough time (dont seem rushed) Krahn et al Pediatrics 1993

31 What do parents want? When told When told As soon as information is clearly know As soon as information is clearly know Dont pass on unsure information too soon Dont pass on unsure information too soon Where told Where told Private setting Private setting In person In person Support persons present Support persons present Both parents Both parents Other support people, family, friends, hospital support Other support people, family, friends, hospital support Krahn et al Pediatrics 1993

32 What do parents want? Contact with child Contact with child Infant present Infant present Separate process from content Separate process from content "Bad News" is always difficult "Bad News" is always difficult Krahn et al Pediatrics 1993

33 Family Perspective Survey of surviving family members 2-6 months after Traumatic Death Survey of surviving family members 2-6 months after Traumatic Death Family members ranked most important elements in delivery of Bad News Family members ranked most important elements in delivery of Bad News Jurkovich et al, J of Trauma 2000

34 Family Perspective Most important qualities Most important qualities Attitude of news-giver Attitude of news-giver Clarity of message Clarity of message Privacy of conversation Privacy of conversation Ability to answer questions (knowledge) Ability to answer questions (knowledge) Sympathy Sympathy Time for questions Time for questions Autopsy information Autopsy information Jurkovich et al, J of Trauma 2000

35 Family Perspective Least important qualities Least important qualities Attire of News Giver Attire of News Giver Jurkovich et al, J of Trauma 2000

36 Family Perspective Were good at Were good at Providing news with clarity Providing news with clarity News give able to answer questions News give able to answer questions Appropriate attitude Appropriate attitude Jurkovich et al, J of Trauma 2000

37 Family Perspective Were poor at Were poor at Informing likelihood of autopsy Informing likelihood of autopsy Having clergy available Having clergy available Timing, location and privacy Timing, location and privacy Jurkovich et al, J of Trauma 2000

38 "Bad News" in the Emergency Department Families do not have time to prepare for the death Families do not have time to prepare for the death Practitioners do not have a prior relationship with patient or family Practitioners do not have a prior relationship with patient or family Very stressful for practitioners Very stressful for practitioners Von Bloch, Social Work in Health Care, 1996.

39 "Bad News" in the Emergency Department- Initial Contact Family may be at bedside or kept outside Family may be at bedside or kept outside Try to find a private place for family Try to find a private place for family Keep family updated Keep family updated Informing family of imminent death may give them time to prepare Informing family of imminent death may give them time to prepare Family may experience or express denial Family may experience or express denial Truth may be slowly absorbed Truth may be slowly absorbed Von Bloch, Social Work in Health Care, 1996.

40 "Bad News" in the Emergency Department- Update the Family Speak in plain English Speak in plain English Educate them if needed Educate them if needed Repeat key concepts Repeat key concepts Give the family time to ask questions Give the family time to ask questions Say what you know to be true, dont guess Say what you know to be true, dont guess The words you say and how you say them will be remembered for a lifetime The words you say and how you say them will be remembered for a lifetime Von Bloch, Social Work in Health Care, 1996.

41 "Bad News" in the Emergency Department- Death Notification Defer the question of Is he dead? Defer the question of Is he dead? Make sure all appropriate people are there Make sure all appropriate people are there Summarize the patients experiences since contact with health care team Summarize the patients experiences since contact with health care team EMS EMS ED ED State that the patient has died clearly and compassionately State that the patient has died clearly and compassionately Do not use ambiguous terms (i.e. passed, expired, unable to be revived) Do not use ambiguous terms (i.e. passed, expired, unable to be revived) Von Bloch, Social Work in Health Care, 1996.

42 "Bad News" in the Emergency Department- Death Notification Initial reaction is usually an eruption of grief Initial reaction is usually an eruption of grief Culturally determined Culturally determined Rarely hostile to staff Rarely hostile to staff Physician should stay in room with family Physician should stay in room with family As a resource As a resource As a silent presence As a silent presence Remind family members (especially other children) that it was not their fault. Remind family members (especially other children) that it was not their fault. Von Bloch, Social Work in Health Care, 1996.

43 "Bad News" in the Emergency Department- Viewing the body Familys option Familys option Physician should consider state of body if grossly disfigured Physician should consider state of body if grossly disfigured Provide appropriate setting Provide appropriate setting Dimmed lights Dimmed lights Chair to sit with body Chair to sit with body Clean body and area somewhat Clean body and area somewhat May reinforce reality of death May reinforce reality of death May allow them to say Good Bye May allow them to say Good Bye Von Bloch, Social Work in Health Care, 1996.

44 "Bad News" in the Emergency Department- Viewing the body Photo/ Lock of hair Photo/ Lock of hair Hand/ Foot print Hand/ Foot print Von Bloch, Social Work in Health Care, 1996.

45 "Bad News" in the Emergency Department- Counseling the family Tissue donation Tissue donation Medical examiner/ autopsy Medical examiner/ autopsy Be direct and honest Be direct and honest Funeral arrangements Funeral arrangements Resource to answer questions later Resource to answer questions later Von Bloch, Social Work in Health Care, 1996.

46 "Bad News" in the Emergency Department Families found meaningful: Families found meaningful: Caring interest Caring interest Kindness Kindness Appearance of unhurriedness Appearance of unhurriedness Von Bloch, Social Work in Health Care, 1996.

47 Can You Teach Physicians to be Better at Breaking "Bad News" I hope so I hope so Didactic Sessions Didactic Sessions Enactment of Scenarios Enactment of Scenarios Sessions with family members who have received "Bad News" Sessions with family members who have received "Bad News" Standardized patients Standardized patients Structured interviews Structured interviews

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

49 Case 6 year old Casey was sleeping over at 7 year old Melissas house. 6 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. 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. Melissas father was killed in the fire. Melissa was found apneic and pulseless dry leathery skin on face and trunk. Melissa was found apneic and pulseless dry leathery skin on face and trunk. Melissas mother is being intubated prophylactically as she has carbonaceous sputum. Melissas mother is being intubated prophylactically as she has carbonaceous sputum.

50 Case Casey was found pulseless and apneic with minimal visible burns. Casey 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. 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 Melissas mother prior to her intubation and transfer to Cornell burn center. Please speak to Caseys grandparents (her parents live out of town). Please speak to Caseys grandparents (her parents live out of town).

51 Case 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 daughters friend were taken to the hospital. 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. She has been told that she needs to have a breathing tube put in and that she will be transferred to a burn center.

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

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

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

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


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