Transcript Informing Parents of Bad News

Informing Parents of
“Bad News”
David A. Listman, MD
Department of Pediatrics
St Barnabas Hospital
Informal Survey
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Who here has given "Bad News" to a
family member?
Informal Survey
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Who has given "Bad News" to a parent?
Informal Survey
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Who has informed a patient/ family
member that a patient has cancer?
Informal Survey
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Who has informed a patient/ family
member that they have a life-long chronic
disease? (i.e. diabetes Type I)
Informal Survey
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Who has informed parent / family member
that a patient has died?
Informal Survey
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Did you feel prepared to give "Bad News"?
Informal Survey
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Did you feel you were in or provided with
the proper location to give "Bad News"?
Informal Survey
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Have you ever been formally taught how
to give "Bad News"?
Have you ever been informally taught how
to give "Bad News"?
Informal Survey
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What do you wish you knew or could
change about giving "Bad News"?
Case
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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
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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
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What the parents know
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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
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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
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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?
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“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 Medicine?
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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 Medicine?
Obvious "Bad News"
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Traumatic Death
Death after chronic illness
Diagnosis of uniformly fatal chronic illness
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Diagnosis of cancer
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leukemia
Diagnosis of chronic disease
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Cystic Fibrosis
Spinal Muscular Atrophy
Muscular Dystrophy
Diabetes
Asthma
Diagnosis of permanent disability
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Birth defect
What is “Bad News” in Medicine?
Not So Obvious "Bad News"
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Long bone fracture the day before summer
camp starts.
Season ending injuries.
Need for surgery
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Hernia
Appendicitis
Ear tubes
Diagnosis of ambiguous genitalia
What is “Bad News” in Medicine?
Not So Obvious "Bad News"
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5/12/06 Hideki Matsui Placed on the 15day disabled list with a left wrist fracture,
retroactive to May 11. Reactivated
9/12/06.
What Clinical Settings Specialize in
“Bad News”
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Pediatrics/ OB- much of the literature
deals with informing parents of birth
defects/ chronic diseases
Oncology
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Initial Diagnoses
Move from treatment to palliative care
Emergency/ Trauma
Issues for Doctors Delivering “Bad
News”
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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
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Surveys, questionnaires and interviews
Usually some time after the "Bad News" is
delivered (often months)
Consensus guidelines
“Bad News” Options
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Nondisclosure
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Traditional model
Assumptions
Doctor knows what is best for patient
 Patients don’t want to know
 Patients need to be protected
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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” Options
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Full Disclosure
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Give all information
As soon as it is known
Girgis et al, J Clin Onc 1995
“Bad News” Options
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Individualized Disclosure
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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
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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?
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Parents of infants with recently diagnosed
disabilities
Structured Interview
Nine themes identified
Krahn et al Pediatrics 1993
What do parents want?
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Communication of Information
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Clear, direct, understandable, detailed
Positive as well as negative
No offensive language
Information about resources
Diagnostician
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Be familiar
Know the patient, not just the disease
Krahn et al Pediatrics 1993
What do parents want?
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Communication of affect
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Caring, compassionate, gentle
Information is personalized (use name)
Communicate equality
Communicate support
Pacing of process
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Information presented gradually
Take enough time (don’t seem rushed)
Krahn et al Pediatrics 1993
What do parents want?
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When told
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Where told
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As soon as information is clearly know
Don’t pass on unsure information too soon
Private setting
In person
Support persons present
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Both parents
Other support people, family, friends, hospital support
Krahn et al Pediatrics 1993
What do parents want?
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Contact with child
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Infant present
Separate process from content
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"Bad News" is always difficult
Krahn et al Pediatrics 1993
Family Perspective
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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 Perspective
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Most important qualities
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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 Perspective
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Least important qualities
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Attire of News Giver
Jurkovich et al, J of Trauma 2000
Family Perspective
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Were good at
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Providing news with clarity
News give able to answer questions
Appropriate attitude
Jurkovich et al, J of Trauma 2000
Family Perspective
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Were poor at
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Informing likelihood of autopsy
Having clergy available
Timing, location and privacy
Jurkovich et al, J of Trauma 2000
"Bad News" in the Emergency
Department
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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
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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
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Truth may be slowly absorbed
Von Bloch, Social Work in
Health Care, 1996.
"Bad News" in the Emergency
Department- Update the Family
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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
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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
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EMS
ED
State that the patient has died clearly and
compassionately
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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 Notification
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Initial reaction is usually an eruption of
grief
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Culturally determined
Rarely hostile to staff
Physician should stay in room with family
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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
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Family’s option
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Provide appropriate setting
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Physician should consider state of body if
grossly disfigured
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 body
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Photo/ Lock of hair
Hand/ Foot print
Von Bloch, Social Work
in Health Care, 1996.
"Bad News" in the Emergency
Department- Counseling the family
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Tissue donation
Medical examiner/ autopsy
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Be direct and honest
Funeral arrangements
Resource to answer questions later
Von Bloch, Social Work in
Health Care, 1996.
"Bad News" in the Emergency
Department
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Families found meaningful:
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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"
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I hope so
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Didactic Sessions
Enactment of Scenarios
Sessions with family members who have
received "Bad News"
Standardized patients
Structured interviews
Future Issues in “Bad News”
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Little written about impact on the news
giver.
Little written about Emergency
Departments.
Case
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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
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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
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What the mother knows
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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
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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
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What the grandparents know
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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
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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
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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).