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Informing Parents of “Bad News”. David A. Listman, MD Department of Pediatrics St Barnabas Hospital. Informal Survey. Who here has given "Bad News" to a family member?. Informal Survey. Who has given "Bad News" to a parent?. Informal Survey.

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Informing parents of bad news

Informing Parents of “Bad News”

David A. Listman, MD

Department of Pediatrics

St Barnabas Hospital


Informal survey
Informal Survey

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


Informal survey1
Informal Survey

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


Informal survey2
Informal Survey

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


Informal survey3
Informal Survey

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


Informal survey4
Informal Survey

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


Informal survey5
Informal Survey

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


Informal survey6
Informal Survey

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


Informal survey7
Informal Survey

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

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


Informal survey8
Informal Survey

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


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


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


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


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?


Goals and objectives
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”?


What is bad news in medicine
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


What is bad news in medicine1
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.


What is bad news in medicine2
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


What is bad news in medicine3
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


What is bad news in medicine4
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.


What clinical settings specialize in bad news
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


Issues for doctors delivering bad news
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


How is bad news studied
How is “Bad News” studied

  • Surveys, questionnaires and interviews

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

  • Consensus guidelines


Bad news options
“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


Bad news options1
“Bad News” Options

  • Full Disclosure

    • Give all information

    • As soon as it is known

Girgis et al, J Clin Onc 1995


Bad news options2
“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


Bad news consensus
“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


What do parents want
What do parents want?

  • Parents of infants with recently diagnosed disabilities

  • Structured Interview

  • Nine themes identified

Krahn et al Pediatrics 1993


What do parents want1
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


What do parents want2
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


What do parents want3
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


What do parents want4
What do parents want?

  • Contact with child

    • Infant present

  • Separate process from content

    • "Bad News" is always difficult

Krahn et al Pediatrics 1993


Family perspective
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


Family perspective1
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


Family perspective2
Family Perspective

  • Least important qualities

    • Attire of News Giver

Jurkovich et al, J of Trauma 2000


Family perspective3
Family Perspective

  • Were good at

    • Providing news with clarity

    • News give able to answer questions

    • Appropriate attitude

Jurkovich et al, J of Trauma 2000


Family perspective4
Family Perspective

  • Were poor at

    • Informing likelihood of autopsy

    • Having clergy available

    • Timing, location and privacy

Jurkovich et al, J of Trauma 2000


Bad news in the emergency department
"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.


Bad news in the emergency department initial contact
"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.


Bad news in the emergency department update the family
"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.


Bad news in the emergency department death notification
"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.


Bad news in the emergency department death notification1
"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.


Bad news in the emergency department viewing the body
"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.


Bad news in the emergency department viewing the body1
"Bad News" in the Emergency Department- Viewing the body

  • Photo/ Lock of hair

  • Hand/ Foot print

Von Bloch, Social Work in Health Care, 1996.


Bad news in the emergency department counseling the family
"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.


Bad news in the emergency department1
"Bad News" in the Emergency Department family

  • Families found meaningful:

    • Caring interest

    • Kindness

    • Appearance of unhurriedness

Von Bloch, Social Work in Health Care, 1996.


Can you teach physicians to be better at breaking bad news
Can You Teach Physicians to be Better at Breaking "Bad News" family

  • I hope so

    • Didactic Sessions

    • Enactment of Scenarios

    • Sessions with family members who have received "Bad News"

    • Standardized patients

    • Structured interviews


Future issues in bad news
Future Issues in “Bad News” family

  • Little written about impact on the news giver.

  • Little written about Emergency Departments.


Case family

  • 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.


Case family

  • 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).


Case family

  • What the mother knows-

    • Entire family was in house fire.

    • Her husband was killed.

    • Her daughter and her daughter’s 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.


Case family

  • Where 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?


Case family

  • What the grandparents know

    • Casey slept over at Melissa’s house.

    • Called by the fire department that there was a house fire.

    • Told that Casey was brought to St Barnabas hospital by ambulance.


Case family

  • Where would you speak to Casey’s 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?


Resources
Resources family

  • Von 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).


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