Informing Parents of “Bad News”

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?

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

4. Informal Survey • 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)

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

7. Informal Survey • 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"?

9. Informal Survey • Have you ever been formally 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"?

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. • 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. • 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- • 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

14. Case • Where 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?

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

16. What is “Bad News” in Medicine? • “Information that produces a negative alteration to a person’s 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". • "Bad News" doesn’t have to be fatal • "Bad News" doesn’t have to seem so bad to the medical practitioner • Loss of limb or function may have particular cultural significance.

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

19. 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 surgery • Hernia • Appendicitis • Ear tubes • Diagnosis of ambiguous genitalia

20. What is “Bad News” in Medicine? Not So Obvious "Bad News" • 5/12/06Hideki 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 • Oncology • Initial Diagnoses • Move from treatment to palliative care • Emergency/ Trauma

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

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

24. “Bad News” Options • Nondisclosure • Traditional model • Assumptions • Doctor knows what is best for patient • Patients don’t want to know • Patients need to be protected • 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 • Give all information • As soon as it is known Girgis et al, J Clin Onc 1995

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

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

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

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

30. What do parents want? • Communication of affect • Caring, compassionate, gentle • Information is personalized (use name) • Communicate equality • Communicate support • Pacing of process • Information presented gradually • Take enough time (don’t seem rushed) Krahn et al Pediatrics 1993

31. What do parents want? • When told • As soon as information is clearly know • Don’t pass on unsure information too soon • Where told • Private setting • In person • Support persons present • Both parents • Other support people, family, friends, hospital support Krahn et al Pediatrics 1993

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

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

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

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

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

37. Family Perspective • Were poor at • Informing likelihood of autopsy • Having clergy available • 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 • Practitioners do not have a prior relationship with patient or family • 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 • Try to find a private place for family • Keep family updated • Informing family of imminent death may give them time to prepare • Family may experience or express denial • 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 • Educate them if needed • Repeat key concepts • Give the family time to ask questions • Say what you know to be true, don’t guess • 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?” • Make sure all appropriate people are there • Summarize the patient’s experiences since contact with health care team • EMS • ED • State that the patient has died clearly and compassionately • 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 • Culturally determined • Rarely hostile to staff • Physician should stay in room with family • As a resource • As a silent presence • 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 • Family’s option • Physician should consider state of body if grossly disfigured • Provide appropriate setting • Dimmed lights • Chair to sit with body • Clean body and area somewhat • May reinforce reality of death • 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 • Hand/ Foot print Von Bloch, Social Work in Health Care, 1996.

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

46. "Bad News" in the Emergency Department • Families found meaningful: • Caring interest • Kindness • 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 • Didactic Sessions • Enactment of Scenarios • Sessions with family members who have received "Bad News" • Standardized patients • Structured interviews

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

49. Case • 6 year old Casey was sleeping over at 7 year old Melissa’s house. • At 2 am a house fire occurred. Fire department arrived, it took them 15-20 minutes to locate the sleeping family members. • Melissa’s father was killed in the fire. • Melissa was found apneic and pulseless dry leathery skin on face and trunk. • Melissa’s mother is being intubated prophylactically as she has carbonaceous sputum.

50. Case • 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. • Please speak to Melissa’s mother prior to her intubation and transfer to Cornell burn center. • Please speak to Casey’s grandparents (her parents live out of town).